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The plan was in motion before I got on the plane.

When your leukemia came back suddenly 3 years after your stem cell transplant, it was devastating. But we had a plan. Your cancer developed a new mutation we could target with a chemotherapy drug. If we got you into a second remission, we could consolidate it by infusing more of your donor’s stem cells.

We met in the hospital, but I was adamant to “keep” you as my patient when you got to the clinic. I made swaps to see you, to get the continuity I value so much but often lose as a fellow, rotating from clinic to hospital to clinic.

I was grateful to see how well you dealt with the chemotherapy. Typically it’s a tough regimen, but you hardly had side effects. Between visits, I would check your blood counts on my phone, watching your blast count fall and your normal blood cells rise. Watching the cancer disappear.

Your lumbar punctures were negative, negative, negative – my favorite word, I told you. I was involved in long email threads coordinating the timing of your stem cell infusion with the remission we were achieving.

We were on our way.

One day, your lumbar puncture came back with a few “atypical” cells. I called the pathologist, and upon further review they were convinced the cells were reactive, not cancer. The next lumbar puncture was normal, but it was hard to ignore.

“Are you worried?” I asked my attending in clinic.

“I’m always worried,” she said. Neither of us truly believed the leukemia was back, but with the odds against us, we pored over every detail, always on the alert for a clue to an outcome we feared.

By now, the stem cell infusion was all set up. The donor was ready; so was the medical team; so were you. It was exciting. I thought of how a different attending described his interest in leukemia: There’s a subset you get to cure. Yes, you were going to be one of them.

Your big day coincided with a vacation I had scheduled months before. I was sorry I would be missing the actual moment, but happy I would come back to good news.

I left my coat and badge at the hospital, packed my bags, and got on the plane. I refrained from immediately checking your blood counts on my phone as soon as we landed. That night, jet lagged, I let myself look before I go to sleep. Relief. Your numbers still looked good.

da-kuk/Getty Images

Every day, I explored. My Internet was spotty during my travels, and when I would I finally get service I would peek at your latest blood tests.

Day 1. Cooled lava canyons. Black sand beaches. Circulating blast count: 0%.

Day 2: Glacier tour. A national park. Geysers. Blast count: 2%.

Day 3: We drive along the shore to see a famous waterfall, where you can climb a set of winding stairs to the top.

I check my phone before we start the climb. No service.

And so we begin. The wind cuts as I count steps. 403, 404, 405 … and 406. We are there. The air is thin, the world quiet. My nose is running from the cold.

We hike a bit, and I glance down again. Still no signal. It’s probably for the best. The scenery is spectacular.

Two miles later, I get service. I open the blood work first. Circulating blast count: 5%. But the other counts are okay. It could still be reactive, I say to myself, though on a deeper level I think of my attending’s words: I’m always worried. The stem cell infusion is scheduled for tomorrow.

I hear the rush of the water hitting the rocks below. Icicles form to our left. Sheep graze on our right. I appreciate the feeling of my muscles aching as we climb, higher and higher, a reminder of where I am and my place in it.

At the very top, we pause to take photos. And I get a signal again. I open the bone marrow biopsy report and skim the pathologist’s words. My eyes glue on the summary: 80% blasts, compatible with relapsed leukemia.

I let out an audible gasp.

Do you know? How will they tell you? I am painfully aware of the distance between us, in so many ways.

I want to be present. And soon I will be back, and I will be visiting in the hospital, and we will be having hard conversations and thinking about hard decisions.

Dr. Ilana Yurkiewicz

But I’m not there right now. Someone else is. Here, now, I realize what I cannot do. The best way I can be present for you later is to be present where I am now.

I stuff my phone in my backpack and zip it closed. I step carefully forward on the rocks, slippery from the rain. My nose is running again, but not from the cold.

“What do you think?” my partner asks.

“The views are incredible,” I say.

Minor details of this story were changed to protect privacy.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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The plan was in motion before I got on the plane.

When your leukemia came back suddenly 3 years after your stem cell transplant, it was devastating. But we had a plan. Your cancer developed a new mutation we could target with a chemotherapy drug. If we got you into a second remission, we could consolidate it by infusing more of your donor’s stem cells.

We met in the hospital, but I was adamant to “keep” you as my patient when you got to the clinic. I made swaps to see you, to get the continuity I value so much but often lose as a fellow, rotating from clinic to hospital to clinic.

I was grateful to see how well you dealt with the chemotherapy. Typically it’s a tough regimen, but you hardly had side effects. Between visits, I would check your blood counts on my phone, watching your blast count fall and your normal blood cells rise. Watching the cancer disappear.

Your lumbar punctures were negative, negative, negative – my favorite word, I told you. I was involved in long email threads coordinating the timing of your stem cell infusion with the remission we were achieving.

We were on our way.

One day, your lumbar puncture came back with a few “atypical” cells. I called the pathologist, and upon further review they were convinced the cells were reactive, not cancer. The next lumbar puncture was normal, but it was hard to ignore.

“Are you worried?” I asked my attending in clinic.

“I’m always worried,” she said. Neither of us truly believed the leukemia was back, but with the odds against us, we pored over every detail, always on the alert for a clue to an outcome we feared.

By now, the stem cell infusion was all set up. The donor was ready; so was the medical team; so were you. It was exciting. I thought of how a different attending described his interest in leukemia: There’s a subset you get to cure. Yes, you were going to be one of them.

Your big day coincided with a vacation I had scheduled months before. I was sorry I would be missing the actual moment, but happy I would come back to good news.

I left my coat and badge at the hospital, packed my bags, and got on the plane. I refrained from immediately checking your blood counts on my phone as soon as we landed. That night, jet lagged, I let myself look before I go to sleep. Relief. Your numbers still looked good.

da-kuk/Getty Images

Every day, I explored. My Internet was spotty during my travels, and when I would I finally get service I would peek at your latest blood tests.

Day 1. Cooled lava canyons. Black sand beaches. Circulating blast count: 0%.

Day 2: Glacier tour. A national park. Geysers. Blast count: 2%.

Day 3: We drive along the shore to see a famous waterfall, where you can climb a set of winding stairs to the top.

I check my phone before we start the climb. No service.

And so we begin. The wind cuts as I count steps. 403, 404, 405 … and 406. We are there. The air is thin, the world quiet. My nose is running from the cold.

We hike a bit, and I glance down again. Still no signal. It’s probably for the best. The scenery is spectacular.

Two miles later, I get service. I open the blood work first. Circulating blast count: 5%. But the other counts are okay. It could still be reactive, I say to myself, though on a deeper level I think of my attending’s words: I’m always worried. The stem cell infusion is scheduled for tomorrow.

I hear the rush of the water hitting the rocks below. Icicles form to our left. Sheep graze on our right. I appreciate the feeling of my muscles aching as we climb, higher and higher, a reminder of where I am and my place in it.

At the very top, we pause to take photos. And I get a signal again. I open the bone marrow biopsy report and skim the pathologist’s words. My eyes glue on the summary: 80% blasts, compatible with relapsed leukemia.

I let out an audible gasp.

Do you know? How will they tell you? I am painfully aware of the distance between us, in so many ways.

I want to be present. And soon I will be back, and I will be visiting in the hospital, and we will be having hard conversations and thinking about hard decisions.

Dr. Ilana Yurkiewicz

But I’m not there right now. Someone else is. Here, now, I realize what I cannot do. The best way I can be present for you later is to be present where I am now.

I stuff my phone in my backpack and zip it closed. I step carefully forward on the rocks, slippery from the rain. My nose is running again, but not from the cold.

“What do you think?” my partner asks.

“The views are incredible,” I say.

Minor details of this story were changed to protect privacy.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

The plan was in motion before I got on the plane.

When your leukemia came back suddenly 3 years after your stem cell transplant, it was devastating. But we had a plan. Your cancer developed a new mutation we could target with a chemotherapy drug. If we got you into a second remission, we could consolidate it by infusing more of your donor’s stem cells.

We met in the hospital, but I was adamant to “keep” you as my patient when you got to the clinic. I made swaps to see you, to get the continuity I value so much but often lose as a fellow, rotating from clinic to hospital to clinic.

I was grateful to see how well you dealt with the chemotherapy. Typically it’s a tough regimen, but you hardly had side effects. Between visits, I would check your blood counts on my phone, watching your blast count fall and your normal blood cells rise. Watching the cancer disappear.

Your lumbar punctures were negative, negative, negative – my favorite word, I told you. I was involved in long email threads coordinating the timing of your stem cell infusion with the remission we were achieving.

We were on our way.

One day, your lumbar puncture came back with a few “atypical” cells. I called the pathologist, and upon further review they were convinced the cells were reactive, not cancer. The next lumbar puncture was normal, but it was hard to ignore.

“Are you worried?” I asked my attending in clinic.

“I’m always worried,” she said. Neither of us truly believed the leukemia was back, but with the odds against us, we pored over every detail, always on the alert for a clue to an outcome we feared.

By now, the stem cell infusion was all set up. The donor was ready; so was the medical team; so were you. It was exciting. I thought of how a different attending described his interest in leukemia: There’s a subset you get to cure. Yes, you were going to be one of them.

Your big day coincided with a vacation I had scheduled months before. I was sorry I would be missing the actual moment, but happy I would come back to good news.

I left my coat and badge at the hospital, packed my bags, and got on the plane. I refrained from immediately checking your blood counts on my phone as soon as we landed. That night, jet lagged, I let myself look before I go to sleep. Relief. Your numbers still looked good.

da-kuk/Getty Images

Every day, I explored. My Internet was spotty during my travels, and when I would I finally get service I would peek at your latest blood tests.

Day 1. Cooled lava canyons. Black sand beaches. Circulating blast count: 0%.

Day 2: Glacier tour. A national park. Geysers. Blast count: 2%.

Day 3: We drive along the shore to see a famous waterfall, where you can climb a set of winding stairs to the top.

I check my phone before we start the climb. No service.

And so we begin. The wind cuts as I count steps. 403, 404, 405 … and 406. We are there. The air is thin, the world quiet. My nose is running from the cold.

We hike a bit, and I glance down again. Still no signal. It’s probably for the best. The scenery is spectacular.

Two miles later, I get service. I open the blood work first. Circulating blast count: 5%. But the other counts are okay. It could still be reactive, I say to myself, though on a deeper level I think of my attending’s words: I’m always worried. The stem cell infusion is scheduled for tomorrow.

I hear the rush of the water hitting the rocks below. Icicles form to our left. Sheep graze on our right. I appreciate the feeling of my muscles aching as we climb, higher and higher, a reminder of where I am and my place in it.

At the very top, we pause to take photos. And I get a signal again. I open the bone marrow biopsy report and skim the pathologist’s words. My eyes glue on the summary: 80% blasts, compatible with relapsed leukemia.

I let out an audible gasp.

Do you know? How will they tell you? I am painfully aware of the distance between us, in so many ways.

I want to be present. And soon I will be back, and I will be visiting in the hospital, and we will be having hard conversations and thinking about hard decisions.

Dr. Ilana Yurkiewicz

But I’m not there right now. Someone else is. Here, now, I realize what I cannot do. The best way I can be present for you later is to be present where I am now.

I stuff my phone in my backpack and zip it closed. I step carefully forward on the rocks, slippery from the rain. My nose is running again, but not from the cold.

“What do you think?” my partner asks.

“The views are incredible,” I say.

Minor details of this story were changed to protect privacy.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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‘How did I get cancer?’

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Fri, 11/01/2019 - 08:00

We are 20 minutes into the visit. My patient is 77 years old, a retired school administrator. She was sent to the oncology clinic for a new diagnosis of lung cancer with metastases to the liver and bones.

I was asking my usual questions – how did this all begin? – and I was hearing the usual answers. The cough that didn’t get better with antibiotics. The unintentional weight loss. The chest x-ray that looked “fuzzy.”

I continue: How many packs of cigarettes a day, and for how many years? Any family history of cancer?

These were my standard questions. They were met by hers: “How did I get this?”

I recently hosted a podcast on common, difficult questions we hear in hematology and oncology. How long do I have to live? What would you do if this were your family member?

This was another. There are variations to be sure. How, why, why me, what did I do, what didn’t I do, did my doctor miss it, if I had this or that test would they have caught it sooner?



When I was an internist, I talked about prevention. Meeting a new patient meant sizing them up for risk factors. In their habits I saw opportunities for healthier choices. In their family histories I gathered warning signs.

Now, I ask the same probing questions, but the purpose is not the same. Smoking, alcohol, family history, I ask these of everyone, I reassure them. It’s no longer about assessing risk. It’s not to place blame. But they read into the fact that I am asking, because they have asked themselves the same.

They ask why.

I try not to overdo the pity. I say that I’m sorry this is happening, but I don’t dwell. What I want to convey is the opposite – it’s normalcy. What I want to convey is: I’ve seen this a million times. This is where we are, and here is where we go. We don’t dwell or regret or wonder what if. My patients don’t want sympathy – at least, not from their doctor. They want a plan.

Dr. Ilana Yurkiewicz

They ask: How did I get this?

It’s bad luck, I say. It’s a genetic mutation causing a cell to replicate.

My answers do not always satisfy their questions. Because it’s not a question seeking an informational answer. The truth is, medically and existentially, I don’t know. None of us do. The question is an existential itch no medical jargon can scratch.

I have a modern Hippocratic oath tacked to a wall in my room. “I will prevent disease whenever I can, because prevention is preferable to cure,” it says. True, but that offers little solace to those who already have the illness. Yes, we need prevention. And we need a path forward when tragedy has already struck.

I am humbled when I meet a new cancer patient because the visit is a metaphor for a nonjudgmental life. There’s something beautiful about meeting someone exactly where they are, where decisions made in the past are as irrelevant to me now as they were to the cancer.

When they inevitably ask “how did I get this?” and I answer, what I’m really saying is this: I don’t care what you did, or didn’t do, or how we got here. But we are here, and so I am here with you, and from now on the only place we care about is here and now, the only direction forward.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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We are 20 minutes into the visit. My patient is 77 years old, a retired school administrator. She was sent to the oncology clinic for a new diagnosis of lung cancer with metastases to the liver and bones.

I was asking my usual questions – how did this all begin? – and I was hearing the usual answers. The cough that didn’t get better with antibiotics. The unintentional weight loss. The chest x-ray that looked “fuzzy.”

I continue: How many packs of cigarettes a day, and for how many years? Any family history of cancer?

These were my standard questions. They were met by hers: “How did I get this?”

I recently hosted a podcast on common, difficult questions we hear in hematology and oncology. How long do I have to live? What would you do if this were your family member?

This was another. There are variations to be sure. How, why, why me, what did I do, what didn’t I do, did my doctor miss it, if I had this or that test would they have caught it sooner?



When I was an internist, I talked about prevention. Meeting a new patient meant sizing them up for risk factors. In their habits I saw opportunities for healthier choices. In their family histories I gathered warning signs.

Now, I ask the same probing questions, but the purpose is not the same. Smoking, alcohol, family history, I ask these of everyone, I reassure them. It’s no longer about assessing risk. It’s not to place blame. But they read into the fact that I am asking, because they have asked themselves the same.

They ask why.

I try not to overdo the pity. I say that I’m sorry this is happening, but I don’t dwell. What I want to convey is the opposite – it’s normalcy. What I want to convey is: I’ve seen this a million times. This is where we are, and here is where we go. We don’t dwell or regret or wonder what if. My patients don’t want sympathy – at least, not from their doctor. They want a plan.

Dr. Ilana Yurkiewicz

They ask: How did I get this?

It’s bad luck, I say. It’s a genetic mutation causing a cell to replicate.

My answers do not always satisfy their questions. Because it’s not a question seeking an informational answer. The truth is, medically and existentially, I don’t know. None of us do. The question is an existential itch no medical jargon can scratch.

I have a modern Hippocratic oath tacked to a wall in my room. “I will prevent disease whenever I can, because prevention is preferable to cure,” it says. True, but that offers little solace to those who already have the illness. Yes, we need prevention. And we need a path forward when tragedy has already struck.

I am humbled when I meet a new cancer patient because the visit is a metaphor for a nonjudgmental life. There’s something beautiful about meeting someone exactly where they are, where decisions made in the past are as irrelevant to me now as they were to the cancer.

When they inevitably ask “how did I get this?” and I answer, what I’m really saying is this: I don’t care what you did, or didn’t do, or how we got here. But we are here, and so I am here with you, and from now on the only place we care about is here and now, the only direction forward.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

We are 20 minutes into the visit. My patient is 77 years old, a retired school administrator. She was sent to the oncology clinic for a new diagnosis of lung cancer with metastases to the liver and bones.

I was asking my usual questions – how did this all begin? – and I was hearing the usual answers. The cough that didn’t get better with antibiotics. The unintentional weight loss. The chest x-ray that looked “fuzzy.”

I continue: How many packs of cigarettes a day, and for how many years? Any family history of cancer?

These were my standard questions. They were met by hers: “How did I get this?”

I recently hosted a podcast on common, difficult questions we hear in hematology and oncology. How long do I have to live? What would you do if this were your family member?

This was another. There are variations to be sure. How, why, why me, what did I do, what didn’t I do, did my doctor miss it, if I had this or that test would they have caught it sooner?



When I was an internist, I talked about prevention. Meeting a new patient meant sizing them up for risk factors. In their habits I saw opportunities for healthier choices. In their family histories I gathered warning signs.

Now, I ask the same probing questions, but the purpose is not the same. Smoking, alcohol, family history, I ask these of everyone, I reassure them. It’s no longer about assessing risk. It’s not to place blame. But they read into the fact that I am asking, because they have asked themselves the same.

They ask why.

I try not to overdo the pity. I say that I’m sorry this is happening, but I don’t dwell. What I want to convey is the opposite – it’s normalcy. What I want to convey is: I’ve seen this a million times. This is where we are, and here is where we go. We don’t dwell or regret or wonder what if. My patients don’t want sympathy – at least, not from their doctor. They want a plan.

Dr. Ilana Yurkiewicz

They ask: How did I get this?

It’s bad luck, I say. It’s a genetic mutation causing a cell to replicate.

My answers do not always satisfy their questions. Because it’s not a question seeking an informational answer. The truth is, medically and existentially, I don’t know. None of us do. The question is an existential itch no medical jargon can scratch.

I have a modern Hippocratic oath tacked to a wall in my room. “I will prevent disease whenever I can, because prevention is preferable to cure,” it says. True, but that offers little solace to those who already have the illness. Yes, we need prevention. And we need a path forward when tragedy has already struck.

I am humbled when I meet a new cancer patient because the visit is a metaphor for a nonjudgmental life. There’s something beautiful about meeting someone exactly where they are, where decisions made in the past are as irrelevant to me now as they were to the cancer.

When they inevitably ask “how did I get this?” and I answer, what I’m really saying is this: I don’t care what you did, or didn’t do, or how we got here. But we are here, and so I am here with you, and from now on the only place we care about is here and now, the only direction forward.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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Snapshots of an oncologist

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Wed, 10/02/2019 - 08:00

 

It’s 6:30 on a Friday night, and I am triaging three admissions to the leukemia service at once. The call from the ED about you makes me pause. I recognize your name – you were my patient a few years before. At the time, you were undergoing chemotherapy for acute myeloid leukemia, and I cared for you during the aftermath. I now pull up your chart and fill in the gaps of the last 2 years. You got into remission and received a bone marrow transplant. For 2 years, you were cured. But today, you are back. The ED has picked up an abundance of blasts – cancer cells – in your blood. I walk to your ED gurney slowly, thinking of how to tell you this. You recognize me, too. And I can see in your eyes that you already know. “I am so sorry this is happening,” I say.

You are here for your third cycle of chemotherapy. It’s a standard check-in. The first cycle was tolerable, the second cycle was rough, and now you are exhausted. You wonder if it’s normal to be so beat up from this. You ask how much nausea is too much nausea. But your hair didn’t fall out – isn’t that strange? Is it a sure thing that it will? And, by the way, is there anything to prevent the neuropathy? You wiggle your fingers as if to emphasize the point. We go through each of your symptoms and strategize ways to make this cycle better than the last. “OK,” you conclude triumphantly. “I got this!”

It’s your 1-month follow-up and it’s time to pivot. After you were diagnosed with an aggressive triple-negative breast cancer, you met with a medical oncologist and a surgeon. Chemotherapy first, they agreed. The chemo would shrink the tumor, they said, so that it could all be scooped out with surgery. The medications were rough, but you knew it was for the best. But now it’s been two cycles and the lump in your breast is getting bigger not smaller. I ask if I may draw on your skin, promising I’ll wash it off. I gently trace the mass in pen and pull out a tape measure. Yes. It is bigger. I listen to your heart and hear it racing. “What now?” you ask.

When you saw your doctor for bloating and were told it’s not gas, actually, but stage 4 cancer, you didn’t cry. You didn’t deny it. You prepared. You called your lawyer and made a will. You contacted your job and planned for retirement. You organized your things so your children wouldn’t have to. Your oncologist recommended palliative chemotherapy as it could give you some more good days. The best case scenario would be 1 year. That was 2½ years ago. You still like to be prepared, you tell me, but that’s on the back burner now. You are busy, after all – your feet still ache from dancing all night in heels at your niece’s wedding last weekend. I pull up your latest PET scan and we look together: Again, wonderfully, everything appears stable. “See you in 3 months,” I say.



You called three times to move up this appointment because you didn’t know if you’d be alive this long. You want a second opinion. When your kidney cancer grew after surgery, two immunotherapy drugs, and a chemotherapy pill, the latest setback has been fevers up to 104 ° with drenching night sweats. They found a deep infection gnawing around the edges of your tumor, and antibiotics aren’t touching it. The only chance to stop the cancer is more chemotherapy, but that could make the infection worse and lead to a rapid demise. You can’t decide. Today, in the exam room, you are sweating. Your temperature is 101 °. Your partner is trying to keep it together, but the crumpled tissues in her hand give it away. She looks at me earnestly: “What would you do if this were your family member?”

You teach about this disease in your classes and never thought it would happen to you. It started simply enough – you were bruising. Your joints ached. Small things; odd things. The ER doctor cleverly noticed that some numbers were off in your blood counts and sent you to a hematology-oncology doctor, who then cleverly ordered a molecular blood test. It was a long shot. He didn’t really expect it to come back with chronic myeloid leukemia. But there it is, and here we are. You return to talk about treatment options. You understand in detail the biology of how they work. What you don’t know is which is best for you. I go through the four choices and unpleasant effects of each. Muscle aches; diarrhea; risk of bleeding; twice a day dosing tied to mealtimes. “Is there an Option 5?” you wonder.

Dr. Ilana Yurkiewicz

You have been in the hospital for 34 days, but who’s counting? You are. Because it has been Thirty. Four. Days. You knew the chemotherapy would suppress your blood counts. Now you know what “impaired immune system” really means. You had the bloodstream bacterial infection, requiring 2 days in the ICU. You had the invasive fungus growing in your lungs. The nurses post a calendar on your wall and kindly fill it in every day with your white blood cell count so you don’t have to ask. For days, it’s the same. Your bag stays packed – “just in case,” you explain. Your spouse diligently keeps your children – 2 and 4 years old – away, as kids are notorious germ factories. Then one Sunday morning and – finally! “Put me on speakerphone,” you tell your spouse. “Daddy is coming home!”

One of the most precious parts of hematology and oncology is the relationships. You are there not just for one difficult moment, but for the journey. I await getting to help you over the years to come. For now, I will settle for snapshots.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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It’s 6:30 on a Friday night, and I am triaging three admissions to the leukemia service at once. The call from the ED about you makes me pause. I recognize your name – you were my patient a few years before. At the time, you were undergoing chemotherapy for acute myeloid leukemia, and I cared for you during the aftermath. I now pull up your chart and fill in the gaps of the last 2 years. You got into remission and received a bone marrow transplant. For 2 years, you were cured. But today, you are back. The ED has picked up an abundance of blasts – cancer cells – in your blood. I walk to your ED gurney slowly, thinking of how to tell you this. You recognize me, too. And I can see in your eyes that you already know. “I am so sorry this is happening,” I say.

You are here for your third cycle of chemotherapy. It’s a standard check-in. The first cycle was tolerable, the second cycle was rough, and now you are exhausted. You wonder if it’s normal to be so beat up from this. You ask how much nausea is too much nausea. But your hair didn’t fall out – isn’t that strange? Is it a sure thing that it will? And, by the way, is there anything to prevent the neuropathy? You wiggle your fingers as if to emphasize the point. We go through each of your symptoms and strategize ways to make this cycle better than the last. “OK,” you conclude triumphantly. “I got this!”

It’s your 1-month follow-up and it’s time to pivot. After you were diagnosed with an aggressive triple-negative breast cancer, you met with a medical oncologist and a surgeon. Chemotherapy first, they agreed. The chemo would shrink the tumor, they said, so that it could all be scooped out with surgery. The medications were rough, but you knew it was for the best. But now it’s been two cycles and the lump in your breast is getting bigger not smaller. I ask if I may draw on your skin, promising I’ll wash it off. I gently trace the mass in pen and pull out a tape measure. Yes. It is bigger. I listen to your heart and hear it racing. “What now?” you ask.

When you saw your doctor for bloating and were told it’s not gas, actually, but stage 4 cancer, you didn’t cry. You didn’t deny it. You prepared. You called your lawyer and made a will. You contacted your job and planned for retirement. You organized your things so your children wouldn’t have to. Your oncologist recommended palliative chemotherapy as it could give you some more good days. The best case scenario would be 1 year. That was 2½ years ago. You still like to be prepared, you tell me, but that’s on the back burner now. You are busy, after all – your feet still ache from dancing all night in heels at your niece’s wedding last weekend. I pull up your latest PET scan and we look together: Again, wonderfully, everything appears stable. “See you in 3 months,” I say.



You called three times to move up this appointment because you didn’t know if you’d be alive this long. You want a second opinion. When your kidney cancer grew after surgery, two immunotherapy drugs, and a chemotherapy pill, the latest setback has been fevers up to 104 ° with drenching night sweats. They found a deep infection gnawing around the edges of your tumor, and antibiotics aren’t touching it. The only chance to stop the cancer is more chemotherapy, but that could make the infection worse and lead to a rapid demise. You can’t decide. Today, in the exam room, you are sweating. Your temperature is 101 °. Your partner is trying to keep it together, but the crumpled tissues in her hand give it away. She looks at me earnestly: “What would you do if this were your family member?”

You teach about this disease in your classes and never thought it would happen to you. It started simply enough – you were bruising. Your joints ached. Small things; odd things. The ER doctor cleverly noticed that some numbers were off in your blood counts and sent you to a hematology-oncology doctor, who then cleverly ordered a molecular blood test. It was a long shot. He didn’t really expect it to come back with chronic myeloid leukemia. But there it is, and here we are. You return to talk about treatment options. You understand in detail the biology of how they work. What you don’t know is which is best for you. I go through the four choices and unpleasant effects of each. Muscle aches; diarrhea; risk of bleeding; twice a day dosing tied to mealtimes. “Is there an Option 5?” you wonder.

Dr. Ilana Yurkiewicz

You have been in the hospital for 34 days, but who’s counting? You are. Because it has been Thirty. Four. Days. You knew the chemotherapy would suppress your blood counts. Now you know what “impaired immune system” really means. You had the bloodstream bacterial infection, requiring 2 days in the ICU. You had the invasive fungus growing in your lungs. The nurses post a calendar on your wall and kindly fill it in every day with your white blood cell count so you don’t have to ask. For days, it’s the same. Your bag stays packed – “just in case,” you explain. Your spouse diligently keeps your children – 2 and 4 years old – away, as kids are notorious germ factories. Then one Sunday morning and – finally! “Put me on speakerphone,” you tell your spouse. “Daddy is coming home!”

One of the most precious parts of hematology and oncology is the relationships. You are there not just for one difficult moment, but for the journey. I await getting to help you over the years to come. For now, I will settle for snapshots.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

 

It’s 6:30 on a Friday night, and I am triaging three admissions to the leukemia service at once. The call from the ED about you makes me pause. I recognize your name – you were my patient a few years before. At the time, you were undergoing chemotherapy for acute myeloid leukemia, and I cared for you during the aftermath. I now pull up your chart and fill in the gaps of the last 2 years. You got into remission and received a bone marrow transplant. For 2 years, you were cured. But today, you are back. The ED has picked up an abundance of blasts – cancer cells – in your blood. I walk to your ED gurney slowly, thinking of how to tell you this. You recognize me, too. And I can see in your eyes that you already know. “I am so sorry this is happening,” I say.

You are here for your third cycle of chemotherapy. It’s a standard check-in. The first cycle was tolerable, the second cycle was rough, and now you are exhausted. You wonder if it’s normal to be so beat up from this. You ask how much nausea is too much nausea. But your hair didn’t fall out – isn’t that strange? Is it a sure thing that it will? And, by the way, is there anything to prevent the neuropathy? You wiggle your fingers as if to emphasize the point. We go through each of your symptoms and strategize ways to make this cycle better than the last. “OK,” you conclude triumphantly. “I got this!”

It’s your 1-month follow-up and it’s time to pivot. After you were diagnosed with an aggressive triple-negative breast cancer, you met with a medical oncologist and a surgeon. Chemotherapy first, they agreed. The chemo would shrink the tumor, they said, so that it could all be scooped out with surgery. The medications were rough, but you knew it was for the best. But now it’s been two cycles and the lump in your breast is getting bigger not smaller. I ask if I may draw on your skin, promising I’ll wash it off. I gently trace the mass in pen and pull out a tape measure. Yes. It is bigger. I listen to your heart and hear it racing. “What now?” you ask.

When you saw your doctor for bloating and were told it’s not gas, actually, but stage 4 cancer, you didn’t cry. You didn’t deny it. You prepared. You called your lawyer and made a will. You contacted your job and planned for retirement. You organized your things so your children wouldn’t have to. Your oncologist recommended palliative chemotherapy as it could give you some more good days. The best case scenario would be 1 year. That was 2½ years ago. You still like to be prepared, you tell me, but that’s on the back burner now. You are busy, after all – your feet still ache from dancing all night in heels at your niece’s wedding last weekend. I pull up your latest PET scan and we look together: Again, wonderfully, everything appears stable. “See you in 3 months,” I say.



You called three times to move up this appointment because you didn’t know if you’d be alive this long. You want a second opinion. When your kidney cancer grew after surgery, two immunotherapy drugs, and a chemotherapy pill, the latest setback has been fevers up to 104 ° with drenching night sweats. They found a deep infection gnawing around the edges of your tumor, and antibiotics aren’t touching it. The only chance to stop the cancer is more chemotherapy, but that could make the infection worse and lead to a rapid demise. You can’t decide. Today, in the exam room, you are sweating. Your temperature is 101 °. Your partner is trying to keep it together, but the crumpled tissues in her hand give it away. She looks at me earnestly: “What would you do if this were your family member?”

You teach about this disease in your classes and never thought it would happen to you. It started simply enough – you were bruising. Your joints ached. Small things; odd things. The ER doctor cleverly noticed that some numbers were off in your blood counts and sent you to a hematology-oncology doctor, who then cleverly ordered a molecular blood test. It was a long shot. He didn’t really expect it to come back with chronic myeloid leukemia. But there it is, and here we are. You return to talk about treatment options. You understand in detail the biology of how they work. What you don’t know is which is best for you. I go through the four choices and unpleasant effects of each. Muscle aches; diarrhea; risk of bleeding; twice a day dosing tied to mealtimes. “Is there an Option 5?” you wonder.

Dr. Ilana Yurkiewicz

You have been in the hospital for 34 days, but who’s counting? You are. Because it has been Thirty. Four. Days. You knew the chemotherapy would suppress your blood counts. Now you know what “impaired immune system” really means. You had the bloodstream bacterial infection, requiring 2 days in the ICU. You had the invasive fungus growing in your lungs. The nurses post a calendar on your wall and kindly fill it in every day with your white blood cell count so you don’t have to ask. For days, it’s the same. Your bag stays packed – “just in case,” you explain. Your spouse diligently keeps your children – 2 and 4 years old – away, as kids are notorious germ factories. Then one Sunday morning and – finally! “Put me on speakerphone,” you tell your spouse. “Daddy is coming home!”

One of the most precious parts of hematology and oncology is the relationships. You are there not just for one difficult moment, but for the journey. I await getting to help you over the years to come. For now, I will settle for snapshots.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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Curative intent and palliative care – compatible goals?

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Mon, 09/02/2019 - 08:00

 

The first signs are always vague. Katie (not her real name) was 33 years old and loved to spend her weekends hiking. First, it was fatigue when doing elevation. Then fatigue even while walking across flat ground. One day she just sat in bed and noticed her heart racing.

One blood test, and her primary care doctor called her at home with the results. Go to the emergency room, she said. Katie’s red blood cells were dangerously low. She would need a blood transfusion.

Something was wrong, but the list of possibilities remained broad. Someone in the emergency room tossed out the word “leukemia.” Katie froze. She liked the resident who tossed out “internal bleeding” better.

This was the start of the ups and downs; the good news and bad news; the branch points that opened and closed her future.

The hematologist-oncologist came by. You need to be admitted to the hospital, and we need to do a bone marrow biopsy, she told Katie. It could be – and then the word was said again – this time by a specialist, making it all the more real: leukemia.

Katie had a few days to sit with this. The bone marrow biopsy was done. Now, what type of leukemia? She read on her computer. She knew there were lots of kinds, some better than others. Now, she was praying for a “good” cancer.

It was one of the bad ones. But.

We sent off additional molecular and genetics testing from your bone marrow, the doctor explained. This type of leukemia can be divided into three groups: high risk, standard risk, and low risk. All the signs so far point to low risk. This is good news, Katie thought.

Six days later. The final cytogenetics came back. Actually, Katie had a rare mutation that automatically put her in the high risk category. It meant she would definitely need a bone marrow transplant to be cured. Bad.

And so she underwent induction chemotherapy. The nurse posted a big calendar on her wall and filled it with her daily blood counts. The counts are dropping, Katie noted. This is good, right? It means the leukemia is responding to chemo? Yes. Good news.

Four days later. The blast count in her blood crept up. It could be anything. It could be reactive. It doesn’t necessarily mean refractory leukemia. But. It’s bad news.

In the interim, some more testing came back. You have one sister, right? Sharon? Yes, Katie confirmed. Looks like Sharon is a perfect match for a bone marrow transplant. Katie cried. Such good news.

Two weeks later the next bone marrow biopsy was done. This shows how you responded to the chemotherapy, the doctors explained. Will it be in remission? Will it be refractory? It’s in remission. Wow, good news.

But the window to transplant is small. In the few weeks to get there, another test came back. Even though the cancer is technically in remission, you have something called minimal residual disease. Meaning there are small amounts of leukemia left over. We should bridge with more chemo before transplant.

Was this good news? Bad news? Who knew anymore?

Dr. Ilana Yurkiewicz

It’s well known in the hematology and oncology world that – even with advanced disease and poor prognoses – patients with blood cancers are less likely to see palliative care than patients with solid tumors. At conferences and in academic journals, leaders in the field expound on why this may be. One reason is the inability for most hospice agencies to offer blood transfusions. That’s certainly a big piece.

Then there’s Katie. When Katie was diagnosed, she asked me what stage her cancer was. It’s a question I hear a lot. With leukemia, I explained, we don’t think about staging the same way we do for conditions like breast cancer or prostate cancer. Since it’s in the blood, it’s stage 4 by definition, I said, but that doesn’t mean anything about prognosis. Our model of thinking is fundamentally different.

With a solid stage 4 cancer, there is generally no chance for cure. The goal is stabilization: We want to keep the cancer where it is for as long as possible. A stable CT scan, in which the disease burden is identical to 3 months before, is a success. The difference between good news and bad news is in lifespan. Receiving bad news is the difference between projecting 2 years and 6 months to live.

With a stage 4 blood cancer like Katie’s leukemia, there is generally a chance for cure. The goal is to make the cancer disappear completely and have someone live a normal lifespan. The outcomes are binary. The difference between good news and bad news is not a difference in lifespan, but a difference in probability of cure. Receiving bad news is the difference between an 80% chance of cure and a 20% chance.

Whenever I order chemotherapy, the electronic record prompts me for my intent: Is this palliative or curative intent? I always type curative intent. The intent is curative until we choose to stop pursuing cure.

Grappling with uncertainty is an enormous challenge for anyone after a diagnosis of cancer. Not knowing whether cure is even possible makes it that much more complex. The outcomes are as diverse as can be. The next branch point can literally be the difference between no more cancer and no more options.

Which raises the question, at what point – if any – should we have asked palliative care to see Katie? I wish we would have done it sooner, not because patients like Katie won’t be cured, but to help them sit with the toughest of uncertainties; prepare for it; live in it as best as possible.

As I write this, Katie is undergoing a bone marrow transplant from her sister, the match. In a few weeks she will face her next branch point – whether the transplant worked. It will move her closer or further from a cure.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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The first signs are always vague. Katie (not her real name) was 33 years old and loved to spend her weekends hiking. First, it was fatigue when doing elevation. Then fatigue even while walking across flat ground. One day she just sat in bed and noticed her heart racing.

One blood test, and her primary care doctor called her at home with the results. Go to the emergency room, she said. Katie’s red blood cells were dangerously low. She would need a blood transfusion.

Something was wrong, but the list of possibilities remained broad. Someone in the emergency room tossed out the word “leukemia.” Katie froze. She liked the resident who tossed out “internal bleeding” better.

This was the start of the ups and downs; the good news and bad news; the branch points that opened and closed her future.

The hematologist-oncologist came by. You need to be admitted to the hospital, and we need to do a bone marrow biopsy, she told Katie. It could be – and then the word was said again – this time by a specialist, making it all the more real: leukemia.

Katie had a few days to sit with this. The bone marrow biopsy was done. Now, what type of leukemia? She read on her computer. She knew there were lots of kinds, some better than others. Now, she was praying for a “good” cancer.

It was one of the bad ones. But.

We sent off additional molecular and genetics testing from your bone marrow, the doctor explained. This type of leukemia can be divided into three groups: high risk, standard risk, and low risk. All the signs so far point to low risk. This is good news, Katie thought.

Six days later. The final cytogenetics came back. Actually, Katie had a rare mutation that automatically put her in the high risk category. It meant she would definitely need a bone marrow transplant to be cured. Bad.

And so she underwent induction chemotherapy. The nurse posted a big calendar on her wall and filled it with her daily blood counts. The counts are dropping, Katie noted. This is good, right? It means the leukemia is responding to chemo? Yes. Good news.

Four days later. The blast count in her blood crept up. It could be anything. It could be reactive. It doesn’t necessarily mean refractory leukemia. But. It’s bad news.

In the interim, some more testing came back. You have one sister, right? Sharon? Yes, Katie confirmed. Looks like Sharon is a perfect match for a bone marrow transplant. Katie cried. Such good news.

Two weeks later the next bone marrow biopsy was done. This shows how you responded to the chemotherapy, the doctors explained. Will it be in remission? Will it be refractory? It’s in remission. Wow, good news.

But the window to transplant is small. In the few weeks to get there, another test came back. Even though the cancer is technically in remission, you have something called minimal residual disease. Meaning there are small amounts of leukemia left over. We should bridge with more chemo before transplant.

Was this good news? Bad news? Who knew anymore?

Dr. Ilana Yurkiewicz

It’s well known in the hematology and oncology world that – even with advanced disease and poor prognoses – patients with blood cancers are less likely to see palliative care than patients with solid tumors. At conferences and in academic journals, leaders in the field expound on why this may be. One reason is the inability for most hospice agencies to offer blood transfusions. That’s certainly a big piece.

Then there’s Katie. When Katie was diagnosed, she asked me what stage her cancer was. It’s a question I hear a lot. With leukemia, I explained, we don’t think about staging the same way we do for conditions like breast cancer or prostate cancer. Since it’s in the blood, it’s stage 4 by definition, I said, but that doesn’t mean anything about prognosis. Our model of thinking is fundamentally different.

With a solid stage 4 cancer, there is generally no chance for cure. The goal is stabilization: We want to keep the cancer where it is for as long as possible. A stable CT scan, in which the disease burden is identical to 3 months before, is a success. The difference between good news and bad news is in lifespan. Receiving bad news is the difference between projecting 2 years and 6 months to live.

With a stage 4 blood cancer like Katie’s leukemia, there is generally a chance for cure. The goal is to make the cancer disappear completely and have someone live a normal lifespan. The outcomes are binary. The difference between good news and bad news is not a difference in lifespan, but a difference in probability of cure. Receiving bad news is the difference between an 80% chance of cure and a 20% chance.

Whenever I order chemotherapy, the electronic record prompts me for my intent: Is this palliative or curative intent? I always type curative intent. The intent is curative until we choose to stop pursuing cure.

Grappling with uncertainty is an enormous challenge for anyone after a diagnosis of cancer. Not knowing whether cure is even possible makes it that much more complex. The outcomes are as diverse as can be. The next branch point can literally be the difference between no more cancer and no more options.

Which raises the question, at what point – if any – should we have asked palliative care to see Katie? I wish we would have done it sooner, not because patients like Katie won’t be cured, but to help them sit with the toughest of uncertainties; prepare for it; live in it as best as possible.

As I write this, Katie is undergoing a bone marrow transplant from her sister, the match. In a few weeks she will face her next branch point – whether the transplant worked. It will move her closer or further from a cure.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

 

The first signs are always vague. Katie (not her real name) was 33 years old and loved to spend her weekends hiking. First, it was fatigue when doing elevation. Then fatigue even while walking across flat ground. One day she just sat in bed and noticed her heart racing.

One blood test, and her primary care doctor called her at home with the results. Go to the emergency room, she said. Katie’s red blood cells were dangerously low. She would need a blood transfusion.

Something was wrong, but the list of possibilities remained broad. Someone in the emergency room tossed out the word “leukemia.” Katie froze. She liked the resident who tossed out “internal bleeding” better.

This was the start of the ups and downs; the good news and bad news; the branch points that opened and closed her future.

The hematologist-oncologist came by. You need to be admitted to the hospital, and we need to do a bone marrow biopsy, she told Katie. It could be – and then the word was said again – this time by a specialist, making it all the more real: leukemia.

Katie had a few days to sit with this. The bone marrow biopsy was done. Now, what type of leukemia? She read on her computer. She knew there were lots of kinds, some better than others. Now, she was praying for a “good” cancer.

It was one of the bad ones. But.

We sent off additional molecular and genetics testing from your bone marrow, the doctor explained. This type of leukemia can be divided into three groups: high risk, standard risk, and low risk. All the signs so far point to low risk. This is good news, Katie thought.

Six days later. The final cytogenetics came back. Actually, Katie had a rare mutation that automatically put her in the high risk category. It meant she would definitely need a bone marrow transplant to be cured. Bad.

And so she underwent induction chemotherapy. The nurse posted a big calendar on her wall and filled it with her daily blood counts. The counts are dropping, Katie noted. This is good, right? It means the leukemia is responding to chemo? Yes. Good news.

Four days later. The blast count in her blood crept up. It could be anything. It could be reactive. It doesn’t necessarily mean refractory leukemia. But. It’s bad news.

In the interim, some more testing came back. You have one sister, right? Sharon? Yes, Katie confirmed. Looks like Sharon is a perfect match for a bone marrow transplant. Katie cried. Such good news.

Two weeks later the next bone marrow biopsy was done. This shows how you responded to the chemotherapy, the doctors explained. Will it be in remission? Will it be refractory? It’s in remission. Wow, good news.

But the window to transplant is small. In the few weeks to get there, another test came back. Even though the cancer is technically in remission, you have something called minimal residual disease. Meaning there are small amounts of leukemia left over. We should bridge with more chemo before transplant.

Was this good news? Bad news? Who knew anymore?

Dr. Ilana Yurkiewicz

It’s well known in the hematology and oncology world that – even with advanced disease and poor prognoses – patients with blood cancers are less likely to see palliative care than patients with solid tumors. At conferences and in academic journals, leaders in the field expound on why this may be. One reason is the inability for most hospice agencies to offer blood transfusions. That’s certainly a big piece.

Then there’s Katie. When Katie was diagnosed, she asked me what stage her cancer was. It’s a question I hear a lot. With leukemia, I explained, we don’t think about staging the same way we do for conditions like breast cancer or prostate cancer. Since it’s in the blood, it’s stage 4 by definition, I said, but that doesn’t mean anything about prognosis. Our model of thinking is fundamentally different.

With a solid stage 4 cancer, there is generally no chance for cure. The goal is stabilization: We want to keep the cancer where it is for as long as possible. A stable CT scan, in which the disease burden is identical to 3 months before, is a success. The difference between good news and bad news is in lifespan. Receiving bad news is the difference between projecting 2 years and 6 months to live.

With a stage 4 blood cancer like Katie’s leukemia, there is generally a chance for cure. The goal is to make the cancer disappear completely and have someone live a normal lifespan. The outcomes are binary. The difference between good news and bad news is not a difference in lifespan, but a difference in probability of cure. Receiving bad news is the difference between an 80% chance of cure and a 20% chance.

Whenever I order chemotherapy, the electronic record prompts me for my intent: Is this palliative or curative intent? I always type curative intent. The intent is curative until we choose to stop pursuing cure.

Grappling with uncertainty is an enormous challenge for anyone after a diagnosis of cancer. Not knowing whether cure is even possible makes it that much more complex. The outcomes are as diverse as can be. The next branch point can literally be the difference between no more cancer and no more options.

Which raises the question, at what point – if any – should we have asked palliative care to see Katie? I wish we would have done it sooner, not because patients like Katie won’t be cured, but to help them sit with the toughest of uncertainties; prepare for it; live in it as best as possible.

As I write this, Katie is undergoing a bone marrow transplant from her sister, the match. In a few weeks she will face her next branch point – whether the transplant worked. It will move her closer or further from a cure.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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Illusion of options

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Fri, 08/02/2019 - 08:00

 

Mr. M wanted a second opinion. He was almost 80 years old and had been healthy his entire life. But recent abdominal discomfort prompted a CT scan, which prompted a biopsy. It appeared the tumor had started in his pancreas and then spread to the lymph nodes and the wall of his abdomen.

He asked his doctor to “give it to him straight,” and she did. She told him that it was incurable, but that chemotherapy might slow it down. He asked how long he had, and she said less than a year.

He wanted a straight answer, but that wasn’t the answer he wanted. Who would? So he did some reading and decided to come to a large academic hospital an hour away for a second opinion.

I interviewed him and then scrolled through his CT scans outside the room. There were a few things we could do, the attending and I discussed. We would send his tumor for genetic testing to see if there were any cancer mutations that could be targeted with drugs more specific than standard chemotherapy. We would also refer him to our cancer genetics clinic to get his blood tested for inherited mutations.

But mostly, all of that would likely turn up negative. Mostly, we agreed with his local oncologist.

Dr. Ilana Yurkiewicz

We went back in the room. Explaining the genetic testing took the length of the visit because this is not a straightforward concept. We explained the difference between tumor mutations and inherited mutations. We wrote down a list of genetic variations we could discover. We discussed treatment options that could go along with each.

Do you have any questions?

He broke down. He reached for the tissue box sitting on the exam room table. “I feel so much better,” he said. “This is why I came here.” He felt safe, reassured, and hopeful.

I was happy to be helpful, but later, as I wrote my clinic note about him, I felt uneasy about the visit.

Everything we said was true. But somehow, it still felt as though we left him with an overly optimistic view of his illness. Did our emphasis on what could be done overshadow that it was unlikely to change the big picture? Did our in-depth discussion of slim possibilities mask that his prognosis was, in fact, still grim?

Working at a large academic medical center, I see many patients who come for a second opinion. I’m incredibly fortunate to learn at a place that is not just up to date in the most cutting-edge treatments but often leading in innovation.

And so we offer patients these options. They sound novel and exciting. They fill patients with hope because they fill the field with hope. I, too, get enraptured with the possibilities – circulating tumor DNA and clinical trials and targeted therapies.

At big cancer meetings every year, oncologists come together and speak about cancer therapies with enthusiasm and hope. Advances have exploded; it’s an exciting time to be learning and practicing.

And yet, the reality for many patients is very different. We are still discussing hospice after one line of chemotherapy has failed. We are still gently holding hands and saying that we have no more options to treat their aggressive cancers.

How can both of these worlds coexist? How can both be true?

A few years ago, a friend was diagnosed with a devastating neurologic condition. I went to a clinical trials website and typed in her disease. Immediately, hundreds of options popped up. I felt hopeful. The field is moving forward, I thought. There are options.

But in the exam room, there were none. When I asked about what I had read, the neurologist explained how many of these possibilities were being investigated. But in the end, my friend really had no good options.

After my visit with Mr. M, I thought about how commonly this story plays out in my field of hematology and oncology. Yes, there are instances in which we find a mutation that drastically changes management. It’s wonderful to witness: patients handed an ominous diagnosis and then living their normal lives, in remission or with stable disease, years later.

We all hope for that. But we rarely get it. The challenge comes when we spend 95% of a visit talking about something with a 1% chance of working. The numbers don’t add up – it’s an equation that easily results in false understanding. Cancer can be glossed with a veneer of innovative options, obscuring the reality that none are likely to work.

Weaving both truths into the conversation is a difficult skill, but one I decided to be more cognizant of after my encounter with Mr. M.

At our next visit, we were still waiting on the test results. But I decided to speak with him candidly. It’s important to have a plan B, I said, and asked what would be important to him if his time were limited. He nodded, thinking about this. “I’ve just been holding out hope for the mutation,” he admitted.

The next week his genetic testing came back negative, and he decided to get palliative chemotherapy closer to home. He had no reason to come to a large academic hospital anymore. With nothing special to offer him, I never saw him again.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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Mr. M wanted a second opinion. He was almost 80 years old and had been healthy his entire life. But recent abdominal discomfort prompted a CT scan, which prompted a biopsy. It appeared the tumor had started in his pancreas and then spread to the lymph nodes and the wall of his abdomen.

He asked his doctor to “give it to him straight,” and she did. She told him that it was incurable, but that chemotherapy might slow it down. He asked how long he had, and she said less than a year.

He wanted a straight answer, but that wasn’t the answer he wanted. Who would? So he did some reading and decided to come to a large academic hospital an hour away for a second opinion.

I interviewed him and then scrolled through his CT scans outside the room. There were a few things we could do, the attending and I discussed. We would send his tumor for genetic testing to see if there were any cancer mutations that could be targeted with drugs more specific than standard chemotherapy. We would also refer him to our cancer genetics clinic to get his blood tested for inherited mutations.

But mostly, all of that would likely turn up negative. Mostly, we agreed with his local oncologist.

Dr. Ilana Yurkiewicz

We went back in the room. Explaining the genetic testing took the length of the visit because this is not a straightforward concept. We explained the difference between tumor mutations and inherited mutations. We wrote down a list of genetic variations we could discover. We discussed treatment options that could go along with each.

Do you have any questions?

He broke down. He reached for the tissue box sitting on the exam room table. “I feel so much better,” he said. “This is why I came here.” He felt safe, reassured, and hopeful.

I was happy to be helpful, but later, as I wrote my clinic note about him, I felt uneasy about the visit.

Everything we said was true. But somehow, it still felt as though we left him with an overly optimistic view of his illness. Did our emphasis on what could be done overshadow that it was unlikely to change the big picture? Did our in-depth discussion of slim possibilities mask that his prognosis was, in fact, still grim?

Working at a large academic medical center, I see many patients who come for a second opinion. I’m incredibly fortunate to learn at a place that is not just up to date in the most cutting-edge treatments but often leading in innovation.

And so we offer patients these options. They sound novel and exciting. They fill patients with hope because they fill the field with hope. I, too, get enraptured with the possibilities – circulating tumor DNA and clinical trials and targeted therapies.

At big cancer meetings every year, oncologists come together and speak about cancer therapies with enthusiasm and hope. Advances have exploded; it’s an exciting time to be learning and practicing.

And yet, the reality for many patients is very different. We are still discussing hospice after one line of chemotherapy has failed. We are still gently holding hands and saying that we have no more options to treat their aggressive cancers.

How can both of these worlds coexist? How can both be true?

A few years ago, a friend was diagnosed with a devastating neurologic condition. I went to a clinical trials website and typed in her disease. Immediately, hundreds of options popped up. I felt hopeful. The field is moving forward, I thought. There are options.

But in the exam room, there were none. When I asked about what I had read, the neurologist explained how many of these possibilities were being investigated. But in the end, my friend really had no good options.

After my visit with Mr. M, I thought about how commonly this story plays out in my field of hematology and oncology. Yes, there are instances in which we find a mutation that drastically changes management. It’s wonderful to witness: patients handed an ominous diagnosis and then living their normal lives, in remission or with stable disease, years later.

We all hope for that. But we rarely get it. The challenge comes when we spend 95% of a visit talking about something with a 1% chance of working. The numbers don’t add up – it’s an equation that easily results in false understanding. Cancer can be glossed with a veneer of innovative options, obscuring the reality that none are likely to work.

Weaving both truths into the conversation is a difficult skill, but one I decided to be more cognizant of after my encounter with Mr. M.

At our next visit, we were still waiting on the test results. But I decided to speak with him candidly. It’s important to have a plan B, I said, and asked what would be important to him if his time were limited. He nodded, thinking about this. “I’ve just been holding out hope for the mutation,” he admitted.

The next week his genetic testing came back negative, and he decided to get palliative chemotherapy closer to home. He had no reason to come to a large academic hospital anymore. With nothing special to offer him, I never saw him again.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

 

Mr. M wanted a second opinion. He was almost 80 years old and had been healthy his entire life. But recent abdominal discomfort prompted a CT scan, which prompted a biopsy. It appeared the tumor had started in his pancreas and then spread to the lymph nodes and the wall of his abdomen.

He asked his doctor to “give it to him straight,” and she did. She told him that it was incurable, but that chemotherapy might slow it down. He asked how long he had, and she said less than a year.

He wanted a straight answer, but that wasn’t the answer he wanted. Who would? So he did some reading and decided to come to a large academic hospital an hour away for a second opinion.

I interviewed him and then scrolled through his CT scans outside the room. There were a few things we could do, the attending and I discussed. We would send his tumor for genetic testing to see if there were any cancer mutations that could be targeted with drugs more specific than standard chemotherapy. We would also refer him to our cancer genetics clinic to get his blood tested for inherited mutations.

But mostly, all of that would likely turn up negative. Mostly, we agreed with his local oncologist.

Dr. Ilana Yurkiewicz

We went back in the room. Explaining the genetic testing took the length of the visit because this is not a straightforward concept. We explained the difference between tumor mutations and inherited mutations. We wrote down a list of genetic variations we could discover. We discussed treatment options that could go along with each.

Do you have any questions?

He broke down. He reached for the tissue box sitting on the exam room table. “I feel so much better,” he said. “This is why I came here.” He felt safe, reassured, and hopeful.

I was happy to be helpful, but later, as I wrote my clinic note about him, I felt uneasy about the visit.

Everything we said was true. But somehow, it still felt as though we left him with an overly optimistic view of his illness. Did our emphasis on what could be done overshadow that it was unlikely to change the big picture? Did our in-depth discussion of slim possibilities mask that his prognosis was, in fact, still grim?

Working at a large academic medical center, I see many patients who come for a second opinion. I’m incredibly fortunate to learn at a place that is not just up to date in the most cutting-edge treatments but often leading in innovation.

And so we offer patients these options. They sound novel and exciting. They fill patients with hope because they fill the field with hope. I, too, get enraptured with the possibilities – circulating tumor DNA and clinical trials and targeted therapies.

At big cancer meetings every year, oncologists come together and speak about cancer therapies with enthusiasm and hope. Advances have exploded; it’s an exciting time to be learning and practicing.

And yet, the reality for many patients is very different. We are still discussing hospice after one line of chemotherapy has failed. We are still gently holding hands and saying that we have no more options to treat their aggressive cancers.

How can both of these worlds coexist? How can both be true?

A few years ago, a friend was diagnosed with a devastating neurologic condition. I went to a clinical trials website and typed in her disease. Immediately, hundreds of options popped up. I felt hopeful. The field is moving forward, I thought. There are options.

But in the exam room, there were none. When I asked about what I had read, the neurologist explained how many of these possibilities were being investigated. But in the end, my friend really had no good options.

After my visit with Mr. M, I thought about how commonly this story plays out in my field of hematology and oncology. Yes, there are instances in which we find a mutation that drastically changes management. It’s wonderful to witness: patients handed an ominous diagnosis and then living their normal lives, in remission or with stable disease, years later.

We all hope for that. But we rarely get it. The challenge comes when we spend 95% of a visit talking about something with a 1% chance of working. The numbers don’t add up – it’s an equation that easily results in false understanding. Cancer can be glossed with a veneer of innovative options, obscuring the reality that none are likely to work.

Weaving both truths into the conversation is a difficult skill, but one I decided to be more cognizant of after my encounter with Mr. M.

At our next visit, we were still waiting on the test results. But I decided to speak with him candidly. It’s important to have a plan B, I said, and asked what would be important to him if his time were limited. He nodded, thinking about this. “I’ve just been holding out hope for the mutation,” he admitted.

The next week his genetic testing came back negative, and he decided to get palliative chemotherapy closer to home. He had no reason to come to a large academic hospital anymore. With nothing special to offer him, I never saw him again.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz and listen to her each week on the Blood & Cancer podcast.

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Whose needs come first – the patient’s or the trial’s?

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Changed
Mon, 07/01/2019 - 08:00

 

Debra Banks (not her real name) had hope. There was a clinical trial open at an academic hospital 200 miles from where she lived. She would commute or find local housing. It would cost her, but this is what her savings were for, she reasoned. What expense could be more important than her life?

Next came the tests. Blood tests, an ultrasound of her heart, breathing tests. She gave vials of blood, lay in scanners, and eagerly jumped through every hoop placed before her. Then came the call from the trial coordinator. Her heart ultrasound showed a mild dysfunction in how it pumped. It excluded her from the trial.

“Not eligible.” The two words that took away everything reverberated in her mind. Her heart had never caused her any problems before. So after the shock wore off, she tried to bargain with the trial coordinator: Had the study drug been shown to cause or worsen heart damage? Could they repeat the ultrasound? Did this blip in her heart function really matter?

When the trial coordinator couldn’t answer all these questions, she encouraged Debra to come into the clinic and talk to the doctors directly. That’s where I met her.

Debra found herself in the middle of a painful crossroads she had no interest being in. What happens when the needs of an individual patient and the needs of medical research are at odds? From Debra’s perspective, she had one goal. She wanted the therapy that would give her the best chance of living.

But the aim of the trial was not to help Debra – not directly, at least. Clinical trials help patient populations. The goal is to add to a body of knowledge: To study new therapies, demonstrate safety and efficacy, and ultimately find better treatments. The bulk of benefit goes to future patients, not individual participants. If an individual participant does benefit, all the better. But this is a bonus, not a requirement.

In order to meet these goals, trials come with inclusion and exclusion criteria. These are often strict. Individuals with certain other medical conditions are frequently excluded, as the person needs to be able to tolerate the toxicities of the drug being tested.

Dr. Ilana Yurkiewicz

This, of course, is very different from our usual approach to patient care. Outside of trials, the needs of the individual patient are our North Star. Instead of inclusion and exclusion criteria, we have guidelines: general goalposts that hint at the right answer, but are able to be bent based on individual circumstances. It’s something I love about medicine. Part science, part art. Part algorithmic, part creative.

I can give chemotherapy to a patient with a low platelet count, if I think it’s best. I can override an elevated bilirubin. I can simply not check a heart ultrasound in the first place, if I don’t believe it will change my management.

I understand why trial criteria exist. I fully support investing in novel therapies that will help future patients on a large scale. There will invariably be individuals for whom a clinical trial is unsafe or inappropriate for a multitude of reasons, and our job as oncologists is to make that call and convey that news.

Still, that can be hard to square with the human being sitting in front of you. Debra was only in her mid-50s. She was an artist, an educator, a parent. She was a person who was so, so not ready to die. That she would because of a glitch in her heart function – the significance of which nobody knew – was excruciating.

While we can’t enroll every patient in every trial, the least we can do is comb through trial criteria thoughtfully. With the role of clinical investigator comes great responsibility. Are we choosing a cutoff because it makes clinical sense – or because that’s how it was done before? Is there a medical justification behind each and every exclusion criterion? A careless cutoff is not just a line on a protocol. It can be the difference between someone’s last hope – and no more options.

Every time I saw Debra in clinic, she asked about the trial. Then one day she stopped asking. She was distracted by more pressing problems. Her breathing had worsened and her energy levels were so low she could hardly get out of bed. Debra became sicker and sicker until she could no longer request the last hope that might make her better.

A wonderful physician-scientist I worked with once said she split her time between patient care and medical research because they complement each other. Whenever she lost a patient, she turned that pain into motivation to delve deeper into her research. She coped with individual loss by helping to make small, incremental improvements for the needs of many.

I think about this, months later, as I look around the empty exam room where I first met Debra. I imagine a roomful of patients, alive and healthy, for whom the research she was excluded from has benefited.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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Debra Banks (not her real name) had hope. There was a clinical trial open at an academic hospital 200 miles from where she lived. She would commute or find local housing. It would cost her, but this is what her savings were for, she reasoned. What expense could be more important than her life?

Next came the tests. Blood tests, an ultrasound of her heart, breathing tests. She gave vials of blood, lay in scanners, and eagerly jumped through every hoop placed before her. Then came the call from the trial coordinator. Her heart ultrasound showed a mild dysfunction in how it pumped. It excluded her from the trial.

“Not eligible.” The two words that took away everything reverberated in her mind. Her heart had never caused her any problems before. So after the shock wore off, she tried to bargain with the trial coordinator: Had the study drug been shown to cause or worsen heart damage? Could they repeat the ultrasound? Did this blip in her heart function really matter?

When the trial coordinator couldn’t answer all these questions, she encouraged Debra to come into the clinic and talk to the doctors directly. That’s where I met her.

Debra found herself in the middle of a painful crossroads she had no interest being in. What happens when the needs of an individual patient and the needs of medical research are at odds? From Debra’s perspective, she had one goal. She wanted the therapy that would give her the best chance of living.

But the aim of the trial was not to help Debra – not directly, at least. Clinical trials help patient populations. The goal is to add to a body of knowledge: To study new therapies, demonstrate safety and efficacy, and ultimately find better treatments. The bulk of benefit goes to future patients, not individual participants. If an individual participant does benefit, all the better. But this is a bonus, not a requirement.

In order to meet these goals, trials come with inclusion and exclusion criteria. These are often strict. Individuals with certain other medical conditions are frequently excluded, as the person needs to be able to tolerate the toxicities of the drug being tested.

Dr. Ilana Yurkiewicz

This, of course, is very different from our usual approach to patient care. Outside of trials, the needs of the individual patient are our North Star. Instead of inclusion and exclusion criteria, we have guidelines: general goalposts that hint at the right answer, but are able to be bent based on individual circumstances. It’s something I love about medicine. Part science, part art. Part algorithmic, part creative.

I can give chemotherapy to a patient with a low platelet count, if I think it’s best. I can override an elevated bilirubin. I can simply not check a heart ultrasound in the first place, if I don’t believe it will change my management.

I understand why trial criteria exist. I fully support investing in novel therapies that will help future patients on a large scale. There will invariably be individuals for whom a clinical trial is unsafe or inappropriate for a multitude of reasons, and our job as oncologists is to make that call and convey that news.

Still, that can be hard to square with the human being sitting in front of you. Debra was only in her mid-50s. She was an artist, an educator, a parent. She was a person who was so, so not ready to die. That she would because of a glitch in her heart function – the significance of which nobody knew – was excruciating.

While we can’t enroll every patient in every trial, the least we can do is comb through trial criteria thoughtfully. With the role of clinical investigator comes great responsibility. Are we choosing a cutoff because it makes clinical sense – or because that’s how it was done before? Is there a medical justification behind each and every exclusion criterion? A careless cutoff is not just a line on a protocol. It can be the difference between someone’s last hope – and no more options.

Every time I saw Debra in clinic, she asked about the trial. Then one day she stopped asking. She was distracted by more pressing problems. Her breathing had worsened and her energy levels were so low she could hardly get out of bed. Debra became sicker and sicker until she could no longer request the last hope that might make her better.

A wonderful physician-scientist I worked with once said she split her time between patient care and medical research because they complement each other. Whenever she lost a patient, she turned that pain into motivation to delve deeper into her research. She coped with individual loss by helping to make small, incremental improvements for the needs of many.

I think about this, months later, as I look around the empty exam room where I first met Debra. I imagine a roomful of patients, alive and healthy, for whom the research she was excluded from has benefited.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

 

Debra Banks (not her real name) had hope. There was a clinical trial open at an academic hospital 200 miles from where she lived. She would commute or find local housing. It would cost her, but this is what her savings were for, she reasoned. What expense could be more important than her life?

Next came the tests. Blood tests, an ultrasound of her heart, breathing tests. She gave vials of blood, lay in scanners, and eagerly jumped through every hoop placed before her. Then came the call from the trial coordinator. Her heart ultrasound showed a mild dysfunction in how it pumped. It excluded her from the trial.

“Not eligible.” The two words that took away everything reverberated in her mind. Her heart had never caused her any problems before. So after the shock wore off, she tried to bargain with the trial coordinator: Had the study drug been shown to cause or worsen heart damage? Could they repeat the ultrasound? Did this blip in her heart function really matter?

When the trial coordinator couldn’t answer all these questions, she encouraged Debra to come into the clinic and talk to the doctors directly. That’s where I met her.

Debra found herself in the middle of a painful crossroads she had no interest being in. What happens when the needs of an individual patient and the needs of medical research are at odds? From Debra’s perspective, she had one goal. She wanted the therapy that would give her the best chance of living.

But the aim of the trial was not to help Debra – not directly, at least. Clinical trials help patient populations. The goal is to add to a body of knowledge: To study new therapies, demonstrate safety and efficacy, and ultimately find better treatments. The bulk of benefit goes to future patients, not individual participants. If an individual participant does benefit, all the better. But this is a bonus, not a requirement.

In order to meet these goals, trials come with inclusion and exclusion criteria. These are often strict. Individuals with certain other medical conditions are frequently excluded, as the person needs to be able to tolerate the toxicities of the drug being tested.

Dr. Ilana Yurkiewicz

This, of course, is very different from our usual approach to patient care. Outside of trials, the needs of the individual patient are our North Star. Instead of inclusion and exclusion criteria, we have guidelines: general goalposts that hint at the right answer, but are able to be bent based on individual circumstances. It’s something I love about medicine. Part science, part art. Part algorithmic, part creative.

I can give chemotherapy to a patient with a low platelet count, if I think it’s best. I can override an elevated bilirubin. I can simply not check a heart ultrasound in the first place, if I don’t believe it will change my management.

I understand why trial criteria exist. I fully support investing in novel therapies that will help future patients on a large scale. There will invariably be individuals for whom a clinical trial is unsafe or inappropriate for a multitude of reasons, and our job as oncologists is to make that call and convey that news.

Still, that can be hard to square with the human being sitting in front of you. Debra was only in her mid-50s. She was an artist, an educator, a parent. She was a person who was so, so not ready to die. That she would because of a glitch in her heart function – the significance of which nobody knew – was excruciating.

While we can’t enroll every patient in every trial, the least we can do is comb through trial criteria thoughtfully. With the role of clinical investigator comes great responsibility. Are we choosing a cutoff because it makes clinical sense – or because that’s how it was done before? Is there a medical justification behind each and every exclusion criterion? A careless cutoff is not just a line on a protocol. It can be the difference between someone’s last hope – and no more options.

Every time I saw Debra in clinic, she asked about the trial. Then one day she stopped asking. She was distracted by more pressing problems. Her breathing had worsened and her energy levels were so low she could hardly get out of bed. Debra became sicker and sicker until she could no longer request the last hope that might make her better.

A wonderful physician-scientist I worked with once said she split her time between patient care and medical research because they complement each other. Whenever she lost a patient, she turned that pain into motivation to delve deeper into her research. She coped with individual loss by helping to make small, incremental improvements for the needs of many.

I think about this, months later, as I look around the empty exam room where I first met Debra. I imagine a roomful of patients, alive and healthy, for whom the research she was excluded from has benefited.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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Dear Marisol

Article Type
Changed
Sun, 06/02/2019 - 08:00

I know you don’t remember me. We met when you were just a baby. Now that you’re older, I want to tell you a story about your mom you may not know.

When your mom became pregnant with you, it was a joyous occasion. But strange things started to happen. Your mom noticed that she was bleeding into the toilet bowl. She was told pregnancy would make her gain weight, but the opposite was happening. By her second trimester, her maternity clothes were so baggy she had to exchange them.

She went to see a gastroenterologist and told him about the bleeding. He looked at her pregnant belly, ordered no additional tests, and said he would look into the bleeding if it persisted after her pregnancy.

But that was 5 months away. In the meantime, her symptoms got worse. As you probably know by now, your mom is proactive. She sought a second opinion and then a third. Three different gastroenterologists dismissed your mom. The visits were brief; as soon as each doctor noticed she was pregnant, each deferred dealing with her – even though rectal bleeding and weight loss are in no way explained by pregnancy. Even though a colonoscopy could absolutely be safely performed during pregnancy.

A few months later, she gave birth to you. You were a healthy baby and she and your dad cried. They were so happy to meet you.

The next day, your dad stayed with you while the doctors performed a colonoscopy on your mom. To everyone’s horror, the camera saw a huge colon tumor. While the gastroenterologists had been reassuring her during her pregnancy, the tumor was gnawing through the wall of her colon and invading nearby organs.

She was wheeled on a gurney from the maternity unit to oncology. That’s where I met her.

Dr. Ilana Yurkiewicz

She asked a lot of good questions, none of which we could answer. Her heart rate was in the 140s, and she developed fevers. Her cancer put her at risk for a serious infection called an abscess, and it took the option of chemotherapy off the table.

We went back and forth on what to do. We got lots of experts involved, and we went through the possibilities. We realized something terrible. There was no cure anymore. There were only trade-offs.

I will never forget the meeting between all of these doctors, your mom, and a Spanish interpreter. We gave your mom a best case scenario: 1 year.

Holding her necklace cross in one hand and your dad’s hand in the other, she repeated something over and over. The interpreter couldn’t hold back tears as she translated in a soft voice: “Please don’t let me die. Please don’t let me die. Please don’t let me die.”

We were all working so hard, doing our best to find a way out for her. Meanwhile, you stayed in the newborn nursery near the maternity ward. Every day your mom would go back and forth between oncology and the nursery to hold you.

Finally, we proceeded with surgery. It was an enormous, delicate, risky operation that took more than 10 hours. There were colorectal surgeons, urologists, and gynecologic oncologists. They scooped out not only the tumor but also your mom’s uterus, her ovaries, her bladder, and part of the abdominal wall. There was just so much cancer.

But your mom made it through the operation. Two days later, she married your dad in her hospital room while a nurse held you. She called it the best day of her life.

But we were still so worried. Everyone in the oncology unit had grown to love your mom, and we knew this was not a permanent fix. She was discharged from the hospital to rehab to get stronger. The plan was to see her in clinic and consider chemotherapy.

I usually keep a list of patients I want to follow even after I’m no longer their doctor. With your mom, I couldn’t put her on any list. It was too personal; I was too invested. I knew what the outcome would be, and I couldn’t bear to see it.

I never forgot your mom though. I decided to become an oncologist, and I thought about her when I met patients, especially young women, who had been dismissed by other doctors. I vowed to be the change as I listened to them and diagnosed them and treated them. I vowed to be a part of the system that would do better.

One day, 3 years after I met your mom, I was rotating in a colon cancer clinic and looked at the schedule. I recognized a name. Was it possible? It had to be someone with the same name. Could it really be your mom?

It was. By this time, she had finished chemotherapy. The goal was to keep the cancer from growing, but it somehow did more than that. Throughout your mom’s entire body, the cancer was gone. Her stoma was reversed, and she had gained back all the weight she lost. You were there too, defying instructions telling you not to touch the medical equipment. You hugged your mom’s leg as she made plans for a routine follow-up in 6 months.

I want you to know this story about your mom because, for the rest of your life, people will tell you what to think and how to feel. They will think it’s their business to tell you when to be worried, they will talk like they know better, and they will try to make you feel small for speaking up. I don’t have a perfect solution for all of this, except to say: Don’t let them.

But I’m not worried about you. If you grow up to be anything like your mom, you will be okay.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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I know you don’t remember me. We met when you were just a baby. Now that you’re older, I want to tell you a story about your mom you may not know.

When your mom became pregnant with you, it was a joyous occasion. But strange things started to happen. Your mom noticed that she was bleeding into the toilet bowl. She was told pregnancy would make her gain weight, but the opposite was happening. By her second trimester, her maternity clothes were so baggy she had to exchange them.

She went to see a gastroenterologist and told him about the bleeding. He looked at her pregnant belly, ordered no additional tests, and said he would look into the bleeding if it persisted after her pregnancy.

But that was 5 months away. In the meantime, her symptoms got worse. As you probably know by now, your mom is proactive. She sought a second opinion and then a third. Three different gastroenterologists dismissed your mom. The visits were brief; as soon as each doctor noticed she was pregnant, each deferred dealing with her – even though rectal bleeding and weight loss are in no way explained by pregnancy. Even though a colonoscopy could absolutely be safely performed during pregnancy.

A few months later, she gave birth to you. You were a healthy baby and she and your dad cried. They were so happy to meet you.

The next day, your dad stayed with you while the doctors performed a colonoscopy on your mom. To everyone’s horror, the camera saw a huge colon tumor. While the gastroenterologists had been reassuring her during her pregnancy, the tumor was gnawing through the wall of her colon and invading nearby organs.

She was wheeled on a gurney from the maternity unit to oncology. That’s where I met her.

Dr. Ilana Yurkiewicz

She asked a lot of good questions, none of which we could answer. Her heart rate was in the 140s, and she developed fevers. Her cancer put her at risk for a serious infection called an abscess, and it took the option of chemotherapy off the table.

We went back and forth on what to do. We got lots of experts involved, and we went through the possibilities. We realized something terrible. There was no cure anymore. There were only trade-offs.

I will never forget the meeting between all of these doctors, your mom, and a Spanish interpreter. We gave your mom a best case scenario: 1 year.

Holding her necklace cross in one hand and your dad’s hand in the other, she repeated something over and over. The interpreter couldn’t hold back tears as she translated in a soft voice: “Please don’t let me die. Please don’t let me die. Please don’t let me die.”

We were all working so hard, doing our best to find a way out for her. Meanwhile, you stayed in the newborn nursery near the maternity ward. Every day your mom would go back and forth between oncology and the nursery to hold you.

Finally, we proceeded with surgery. It was an enormous, delicate, risky operation that took more than 10 hours. There were colorectal surgeons, urologists, and gynecologic oncologists. They scooped out not only the tumor but also your mom’s uterus, her ovaries, her bladder, and part of the abdominal wall. There was just so much cancer.

But your mom made it through the operation. Two days later, she married your dad in her hospital room while a nurse held you. She called it the best day of her life.

But we were still so worried. Everyone in the oncology unit had grown to love your mom, and we knew this was not a permanent fix. She was discharged from the hospital to rehab to get stronger. The plan was to see her in clinic and consider chemotherapy.

I usually keep a list of patients I want to follow even after I’m no longer their doctor. With your mom, I couldn’t put her on any list. It was too personal; I was too invested. I knew what the outcome would be, and I couldn’t bear to see it.

I never forgot your mom though. I decided to become an oncologist, and I thought about her when I met patients, especially young women, who had been dismissed by other doctors. I vowed to be the change as I listened to them and diagnosed them and treated them. I vowed to be a part of the system that would do better.

One day, 3 years after I met your mom, I was rotating in a colon cancer clinic and looked at the schedule. I recognized a name. Was it possible? It had to be someone with the same name. Could it really be your mom?

It was. By this time, she had finished chemotherapy. The goal was to keep the cancer from growing, but it somehow did more than that. Throughout your mom’s entire body, the cancer was gone. Her stoma was reversed, and she had gained back all the weight she lost. You were there too, defying instructions telling you not to touch the medical equipment. You hugged your mom’s leg as she made plans for a routine follow-up in 6 months.

I want you to know this story about your mom because, for the rest of your life, people will tell you what to think and how to feel. They will think it’s their business to tell you when to be worried, they will talk like they know better, and they will try to make you feel small for speaking up. I don’t have a perfect solution for all of this, except to say: Don’t let them.

But I’m not worried about you. If you grow up to be anything like your mom, you will be okay.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

I know you don’t remember me. We met when you were just a baby. Now that you’re older, I want to tell you a story about your mom you may not know.

When your mom became pregnant with you, it was a joyous occasion. But strange things started to happen. Your mom noticed that she was bleeding into the toilet bowl. She was told pregnancy would make her gain weight, but the opposite was happening. By her second trimester, her maternity clothes were so baggy she had to exchange them.

She went to see a gastroenterologist and told him about the bleeding. He looked at her pregnant belly, ordered no additional tests, and said he would look into the bleeding if it persisted after her pregnancy.

But that was 5 months away. In the meantime, her symptoms got worse. As you probably know by now, your mom is proactive. She sought a second opinion and then a third. Three different gastroenterologists dismissed your mom. The visits were brief; as soon as each doctor noticed she was pregnant, each deferred dealing with her – even though rectal bleeding and weight loss are in no way explained by pregnancy. Even though a colonoscopy could absolutely be safely performed during pregnancy.

A few months later, she gave birth to you. You were a healthy baby and she and your dad cried. They were so happy to meet you.

The next day, your dad stayed with you while the doctors performed a colonoscopy on your mom. To everyone’s horror, the camera saw a huge colon tumor. While the gastroenterologists had been reassuring her during her pregnancy, the tumor was gnawing through the wall of her colon and invading nearby organs.

She was wheeled on a gurney from the maternity unit to oncology. That’s where I met her.

Dr. Ilana Yurkiewicz

She asked a lot of good questions, none of which we could answer. Her heart rate was in the 140s, and she developed fevers. Her cancer put her at risk for a serious infection called an abscess, and it took the option of chemotherapy off the table.

We went back and forth on what to do. We got lots of experts involved, and we went through the possibilities. We realized something terrible. There was no cure anymore. There were only trade-offs.

I will never forget the meeting between all of these doctors, your mom, and a Spanish interpreter. We gave your mom a best case scenario: 1 year.

Holding her necklace cross in one hand and your dad’s hand in the other, she repeated something over and over. The interpreter couldn’t hold back tears as she translated in a soft voice: “Please don’t let me die. Please don’t let me die. Please don’t let me die.”

We were all working so hard, doing our best to find a way out for her. Meanwhile, you stayed in the newborn nursery near the maternity ward. Every day your mom would go back and forth between oncology and the nursery to hold you.

Finally, we proceeded with surgery. It was an enormous, delicate, risky operation that took more than 10 hours. There were colorectal surgeons, urologists, and gynecologic oncologists. They scooped out not only the tumor but also your mom’s uterus, her ovaries, her bladder, and part of the abdominal wall. There was just so much cancer.

But your mom made it through the operation. Two days later, she married your dad in her hospital room while a nurse held you. She called it the best day of her life.

But we were still so worried. Everyone in the oncology unit had grown to love your mom, and we knew this was not a permanent fix. She was discharged from the hospital to rehab to get stronger. The plan was to see her in clinic and consider chemotherapy.

I usually keep a list of patients I want to follow even after I’m no longer their doctor. With your mom, I couldn’t put her on any list. It was too personal; I was too invested. I knew what the outcome would be, and I couldn’t bear to see it.

I never forgot your mom though. I decided to become an oncologist, and I thought about her when I met patients, especially young women, who had been dismissed by other doctors. I vowed to be the change as I listened to them and diagnosed them and treated them. I vowed to be a part of the system that would do better.

One day, 3 years after I met your mom, I was rotating in a colon cancer clinic and looked at the schedule. I recognized a name. Was it possible? It had to be someone with the same name. Could it really be your mom?

It was. By this time, she had finished chemotherapy. The goal was to keep the cancer from growing, but it somehow did more than that. Throughout your mom’s entire body, the cancer was gone. Her stoma was reversed, and she had gained back all the weight she lost. You were there too, defying instructions telling you not to touch the medical equipment. You hugged your mom’s leg as she made plans for a routine follow-up in 6 months.

I want you to know this story about your mom because, for the rest of your life, people will tell you what to think and how to feel. They will think it’s their business to tell you when to be worried, they will talk like they know better, and they will try to make you feel small for speaking up. I don’t have a perfect solution for all of this, except to say: Don’t let them.

But I’m not worried about you. If you grow up to be anything like your mom, you will be okay.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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Blast crisis, no crisis? Caring for the apathetic patient

Article Type
Changed
Thu, 05/02/2019 - 08:00

 

The diagnosis was straightforward. My patient’s reaction was not.

One Saturday evening, I receive a call from the emergency room about a man with a very high white blood cell count. For the past 7 years, he had chronic myeloid leukemia – a cancer, but one of the few that can be well controlled for years. The discovery of the medications that can do it revolutionized care for the disease.

For the last 7 years, Mr. C didn’t take that medication regularly. He was young, with no other medical problems, and this was the only medication he was supposed to take. But his use was sporadic at best.

What was it, I wondered? Cost? Side effects? Not understanding the seriousness of having leukemia? No, the medication was fully covered by his insurance. No, he tolerated it well. Instead, his on-and-off medication schedule came across as a strange sense of apathy. He didn’t seem to recognize his agency in his own life.

Now, not only is his white count extremely high, but the majority are the cancerous cells. I look at his blood under the microscope – blasts everywhere. He has progressed from a chronic, indolent disease that can be kept at bay into the dreaded blast crisis, which is essentially an acute leukemia but even more challenging to treat.

It is very serious. I tell him this. “I am worried your leukemia has progressed into what we call a blast crisis,” I say. “Has anyone ever talked to you about this before?”

“Hmm, I think Dr. M may have said something,” he says. His medical chart over the last 7 years was populated with notes from his hematologist documenting their discussions of this possibility.

Dr. Ilana Yurkiewicz

“This is serious,” I continue. “You will need to come into the hospital and we need to start medication to lower your white count. Otherwise you could have a stroke.”

“Okay.”

“As the white count comes down, your cells will break open and the chemicals in them can make you very sick. So we will have to check your blood often to watch for this.”

“Got it.”

“And we will change your chemotherapy pill.” I pause, letting it sink in, then repeat for emphasis: “This is very serious.”

“Sure thing, Doc.”

“I know I’ve said a lot. What are your thoughts?”

He looks at his wife, then back at me. He seems unfazed. Just as unfazed as when his hematologist warned this could happen. Just as unfazed as the day he learned his diagnosis.

He smiles and shrugs. “What will be, will be.”

As I listened to him, I honestly couldn’t tell if this was the best coping mechanism I had ever seen or the worst.

On one hand, his apathy had hurt him, clearly and indisputably. Refusing to acknowledge his agency in his medical outcomes allowed him to be cavalier about taking the cure. The cure was in a bottle on his kitchen shelf, an arm’s reach away, and he chose to reach elsewhere.

On the other hand, it was unusual to see someone so at peace with being so critically ill. His acceptance of his new reality was refreshing. There were no heartbreaking questions about whether this was his fault. There was no agonizing over what could have been. His apathy gave him closure and his loved ones comfort.

I’ve written before about how a cancer diagnosis involves holding two seemingly competing ideas in one’s mind at once. Last month, I wrote about how it is possible to be realistic about a grim prognosis while retaining hope that a treatment may work. I discussed that realism and hopefulness are compatible beliefs, and it’s okay – preferred, even – to hold them at once.

Mr. C’s strange sense of apathy made me think about another mental limbo, this one involving control. As doctors and patients, we like when we have agency over outcomes. Take these medications, and you will be okay. Undergo this procedure, and you will reduce your risk of recurrence. At the same time, poor outcomes still occur when everything is done “right.” When that happens, it can be psychologically beneficial to relinquish control. Doing so discards the unhelpful emotions of guilt and blame in favor of acceptance.

Mr. C’s apathy seemed to be present from day 1. But now, in a dire blast crisis, what was once a harmful attitude actually became a helpful one.

His “what will be, will be” attitude wasn’t inherently maladaptive; it was ill timed. Under the right circumstances, well-placed apathy can be leveraged as a positive coping mechanism.

But alas, if only there were a switch to turn on the right emotion at the right time. There’s no right or wrong or sensible reaction to cancer. There’s only a swirl of messy, overwhelming feelings. It’s trying to bring effective emotions to light at the right time while playing whack-a-mole with the others. It’s cognitive dissonance. It’s exhausting. Cancer doesn’t create personalities; it surfaces them.

It’s the last day of Mr. C’s hospitalization. His blast crisis is amazingly under good control.

“So,” I say. “Will you take your medications now?”

“Sure,” he says instinctively. I look at him. “I mean, honestly, Doc? I’m not sure.”

As we shake hands, I wonder if I’ll ever truly understand Mr. C’s motivations. But I can’t wonder too long. I can only control my part: I hand him his medications and wish him luck.

Minor details of this story were changed to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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The diagnosis was straightforward. My patient’s reaction was not.

One Saturday evening, I receive a call from the emergency room about a man with a very high white blood cell count. For the past 7 years, he had chronic myeloid leukemia – a cancer, but one of the few that can be well controlled for years. The discovery of the medications that can do it revolutionized care for the disease.

For the last 7 years, Mr. C didn’t take that medication regularly. He was young, with no other medical problems, and this was the only medication he was supposed to take. But his use was sporadic at best.

What was it, I wondered? Cost? Side effects? Not understanding the seriousness of having leukemia? No, the medication was fully covered by his insurance. No, he tolerated it well. Instead, his on-and-off medication schedule came across as a strange sense of apathy. He didn’t seem to recognize his agency in his own life.

Now, not only is his white count extremely high, but the majority are the cancerous cells. I look at his blood under the microscope – blasts everywhere. He has progressed from a chronic, indolent disease that can be kept at bay into the dreaded blast crisis, which is essentially an acute leukemia but even more challenging to treat.

It is very serious. I tell him this. “I am worried your leukemia has progressed into what we call a blast crisis,” I say. “Has anyone ever talked to you about this before?”

“Hmm, I think Dr. M may have said something,” he says. His medical chart over the last 7 years was populated with notes from his hematologist documenting their discussions of this possibility.

Dr. Ilana Yurkiewicz

“This is serious,” I continue. “You will need to come into the hospital and we need to start medication to lower your white count. Otherwise you could have a stroke.”

“Okay.”

“As the white count comes down, your cells will break open and the chemicals in them can make you very sick. So we will have to check your blood often to watch for this.”

“Got it.”

“And we will change your chemotherapy pill.” I pause, letting it sink in, then repeat for emphasis: “This is very serious.”

“Sure thing, Doc.”

“I know I’ve said a lot. What are your thoughts?”

He looks at his wife, then back at me. He seems unfazed. Just as unfazed as when his hematologist warned this could happen. Just as unfazed as the day he learned his diagnosis.

He smiles and shrugs. “What will be, will be.”

As I listened to him, I honestly couldn’t tell if this was the best coping mechanism I had ever seen or the worst.

On one hand, his apathy had hurt him, clearly and indisputably. Refusing to acknowledge his agency in his medical outcomes allowed him to be cavalier about taking the cure. The cure was in a bottle on his kitchen shelf, an arm’s reach away, and he chose to reach elsewhere.

On the other hand, it was unusual to see someone so at peace with being so critically ill. His acceptance of his new reality was refreshing. There were no heartbreaking questions about whether this was his fault. There was no agonizing over what could have been. His apathy gave him closure and his loved ones comfort.

I’ve written before about how a cancer diagnosis involves holding two seemingly competing ideas in one’s mind at once. Last month, I wrote about how it is possible to be realistic about a grim prognosis while retaining hope that a treatment may work. I discussed that realism and hopefulness are compatible beliefs, and it’s okay – preferred, even – to hold them at once.

Mr. C’s strange sense of apathy made me think about another mental limbo, this one involving control. As doctors and patients, we like when we have agency over outcomes. Take these medications, and you will be okay. Undergo this procedure, and you will reduce your risk of recurrence. At the same time, poor outcomes still occur when everything is done “right.” When that happens, it can be psychologically beneficial to relinquish control. Doing so discards the unhelpful emotions of guilt and blame in favor of acceptance.

Mr. C’s apathy seemed to be present from day 1. But now, in a dire blast crisis, what was once a harmful attitude actually became a helpful one.

His “what will be, will be” attitude wasn’t inherently maladaptive; it was ill timed. Under the right circumstances, well-placed apathy can be leveraged as a positive coping mechanism.

But alas, if only there were a switch to turn on the right emotion at the right time. There’s no right or wrong or sensible reaction to cancer. There’s only a swirl of messy, overwhelming feelings. It’s trying to bring effective emotions to light at the right time while playing whack-a-mole with the others. It’s cognitive dissonance. It’s exhausting. Cancer doesn’t create personalities; it surfaces them.

It’s the last day of Mr. C’s hospitalization. His blast crisis is amazingly under good control.

“So,” I say. “Will you take your medications now?”

“Sure,” he says instinctively. I look at him. “I mean, honestly, Doc? I’m not sure.”

As we shake hands, I wonder if I’ll ever truly understand Mr. C’s motivations. But I can’t wonder too long. I can only control my part: I hand him his medications and wish him luck.

Minor details of this story were changed to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

 

The diagnosis was straightforward. My patient’s reaction was not.

One Saturday evening, I receive a call from the emergency room about a man with a very high white blood cell count. For the past 7 years, he had chronic myeloid leukemia – a cancer, but one of the few that can be well controlled for years. The discovery of the medications that can do it revolutionized care for the disease.

For the last 7 years, Mr. C didn’t take that medication regularly. He was young, with no other medical problems, and this was the only medication he was supposed to take. But his use was sporadic at best.

What was it, I wondered? Cost? Side effects? Not understanding the seriousness of having leukemia? No, the medication was fully covered by his insurance. No, he tolerated it well. Instead, his on-and-off medication schedule came across as a strange sense of apathy. He didn’t seem to recognize his agency in his own life.

Now, not only is his white count extremely high, but the majority are the cancerous cells. I look at his blood under the microscope – blasts everywhere. He has progressed from a chronic, indolent disease that can be kept at bay into the dreaded blast crisis, which is essentially an acute leukemia but even more challenging to treat.

It is very serious. I tell him this. “I am worried your leukemia has progressed into what we call a blast crisis,” I say. “Has anyone ever talked to you about this before?”

“Hmm, I think Dr. M may have said something,” he says. His medical chart over the last 7 years was populated with notes from his hematologist documenting their discussions of this possibility.

Dr. Ilana Yurkiewicz

“This is serious,” I continue. “You will need to come into the hospital and we need to start medication to lower your white count. Otherwise you could have a stroke.”

“Okay.”

“As the white count comes down, your cells will break open and the chemicals in them can make you very sick. So we will have to check your blood often to watch for this.”

“Got it.”

“And we will change your chemotherapy pill.” I pause, letting it sink in, then repeat for emphasis: “This is very serious.”

“Sure thing, Doc.”

“I know I’ve said a lot. What are your thoughts?”

He looks at his wife, then back at me. He seems unfazed. Just as unfazed as when his hematologist warned this could happen. Just as unfazed as the day he learned his diagnosis.

He smiles and shrugs. “What will be, will be.”

As I listened to him, I honestly couldn’t tell if this was the best coping mechanism I had ever seen or the worst.

On one hand, his apathy had hurt him, clearly and indisputably. Refusing to acknowledge his agency in his medical outcomes allowed him to be cavalier about taking the cure. The cure was in a bottle on his kitchen shelf, an arm’s reach away, and he chose to reach elsewhere.

On the other hand, it was unusual to see someone so at peace with being so critically ill. His acceptance of his new reality was refreshing. There were no heartbreaking questions about whether this was his fault. There was no agonizing over what could have been. His apathy gave him closure and his loved ones comfort.

I’ve written before about how a cancer diagnosis involves holding two seemingly competing ideas in one’s mind at once. Last month, I wrote about how it is possible to be realistic about a grim prognosis while retaining hope that a treatment may work. I discussed that realism and hopefulness are compatible beliefs, and it’s okay – preferred, even – to hold them at once.

Mr. C’s strange sense of apathy made me think about another mental limbo, this one involving control. As doctors and patients, we like when we have agency over outcomes. Take these medications, and you will be okay. Undergo this procedure, and you will reduce your risk of recurrence. At the same time, poor outcomes still occur when everything is done “right.” When that happens, it can be psychologically beneficial to relinquish control. Doing so discards the unhelpful emotions of guilt and blame in favor of acceptance.

Mr. C’s apathy seemed to be present from day 1. But now, in a dire blast crisis, what was once a harmful attitude actually became a helpful one.

His “what will be, will be” attitude wasn’t inherently maladaptive; it was ill timed. Under the right circumstances, well-placed apathy can be leveraged as a positive coping mechanism.

But alas, if only there were a switch to turn on the right emotion at the right time. There’s no right or wrong or sensible reaction to cancer. There’s only a swirl of messy, overwhelming feelings. It’s trying to bring effective emotions to light at the right time while playing whack-a-mole with the others. It’s cognitive dissonance. It’s exhausting. Cancer doesn’t create personalities; it surfaces them.

It’s the last day of Mr. C’s hospitalization. His blast crisis is amazingly under good control.

“So,” I say. “Will you take your medications now?”

“Sure,” he says instinctively. I look at him. “I mean, honestly, Doc? I’m not sure.”

As we shake hands, I wonder if I’ll ever truly understand Mr. C’s motivations. But I can’t wonder too long. I can only control my part: I hand him his medications and wish him luck.

Minor details of this story were changed to protect privacy.
 

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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Doctor, will you please lie to me?

Article Type
Changed
Tue, 04/02/2019 - 08:00

“Doctor, I have a question for you.”

“Yes?”

“Have you ever had a patient – I mean, someone like me, someone in my ... state ... get cured without any treatment?”

Mr. B thought he felt too well to have an aggressive cancer infiltrating his liver, abdominal wall, and lungs. He lived an active life, going to church, volunteering, and playing with his grandchildren. But the biopsy results were back. It wasn’t an infection. It wasn’t inflammation. It was stage 4 cancer.

And just like that, his life changed.

His prognosis was likely months, with a best case scenario of several years. But gone were the days of thinking 10, 20, and 30 years ahead.

Dr. Ilana Yurkiewicz


Mr. B was a spiritual person. He told me this was God’s plan for him. He trusted God to get him through this, so he would not need chemotherapy.

Looking for hope in the face of terrible news is a common reaction. It’s natural. We tend to be optimists, and we look for a silver lining. We look for the “but.”

Patients and doctors alike do this.

“The cancer is metastatic ... but we have chemotherapy that can slow it down.”

“The doctor told me the median survival is 3 months ... but I plan to beat those odds.”

“Your mother is dying ... but we have good medicines to make her comfortable.”

 

 


It’s not a bad thing. It’s an adaptive mechanism and positive outlooks can even be associated with better medical outcomes. There’s almost always a “but” if you look hard enough. And in the face of life-changing news, we are incentivized to look really, really hard.

Yet Mr. B caught me off guard because he wasn’t asking me to maintain hope. He was pushing me one step further.

At one point in our conversation, he revealed this clearly. “Doctor, I don’t even care if it’s false hope – just tell me the cancer will disappear.”

Mr. B was asking me to lie to him.

The last thing I wanted was to take away hope, closing the door on a future that truly was clouded in uncertainty. But I also couldn’t look him in the eye and tell him his incurable disease was, in fact, curable.

That doesn’t mean there aren’t ways to phrase things kindly. Patients respond differently to “there’s a 90% chance of survival” and “there’s a 10% chance of death” even though the facts are identical.

When I sense a person like Mr. B is looking to me for hope, I try to frame that initial conversation in the style of the first statement. It’s not dishonest. With an already overwhelming piece of information, it’s choosing to share the most positive version of a narrative that can be told in many different ways and will evolve over time.

Moreover, being hopeful and realistic are not mutually exclusive. Just because someone is seeking the rare chance of a good outcome doesn’t mean he or she doesn’t understand the seriousness of the situation. It is possible to seek out experimental drugs while also considering hospice. It is possible to hope for a plan A while preparing for a plan B. Those are two compatible beliefs, and it’s OK – preferred, even – to hold them at once.

The challenge is avoiding getting pulled into an outlook that is not just positive, not just unlikely – but one with no basis in reality. There’s hope – and then there’s false hope. There’s a positive take – and then there’s lying. It can be a fine line, and with the intention of being kind it can be all too easy to “yes, but” our way into untruths.

The best we can do is set limits with compassion, and understand that telling the truth doesn’t always mean that someone hears it.

“Have you ever had a patient – I mean, someone like me, someone in my ... state ... get cured without any treatment?”

The chances of Mr. B’s cancer responding to chemotherapy were not good but hardly impossible. But without any therapy at all?

“I have not.”

“What about at other places ... in other states or countries. Have you ever heard of a person like me who was cured without treatment?”

“I have not.”

“I guess what I’m asking, Doctor, is ... have you ever seen where the cancer was there and then one day was not ... have you ever seen a miracle?”

Reaching. Grasping.

“I have not.”

“Well,” he said, “Maybe I will be the first.”

We look at each other, pondering this. In my silence is the answer.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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Topics
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“Doctor, I have a question for you.”

“Yes?”

“Have you ever had a patient – I mean, someone like me, someone in my ... state ... get cured without any treatment?”

Mr. B thought he felt too well to have an aggressive cancer infiltrating his liver, abdominal wall, and lungs. He lived an active life, going to church, volunteering, and playing with his grandchildren. But the biopsy results were back. It wasn’t an infection. It wasn’t inflammation. It was stage 4 cancer.

And just like that, his life changed.

His prognosis was likely months, with a best case scenario of several years. But gone were the days of thinking 10, 20, and 30 years ahead.

Dr. Ilana Yurkiewicz


Mr. B was a spiritual person. He told me this was God’s plan for him. He trusted God to get him through this, so he would not need chemotherapy.

Looking for hope in the face of terrible news is a common reaction. It’s natural. We tend to be optimists, and we look for a silver lining. We look for the “but.”

Patients and doctors alike do this.

“The cancer is metastatic ... but we have chemotherapy that can slow it down.”

“The doctor told me the median survival is 3 months ... but I plan to beat those odds.”

“Your mother is dying ... but we have good medicines to make her comfortable.”

 

 


It’s not a bad thing. It’s an adaptive mechanism and positive outlooks can even be associated with better medical outcomes. There’s almost always a “but” if you look hard enough. And in the face of life-changing news, we are incentivized to look really, really hard.

Yet Mr. B caught me off guard because he wasn’t asking me to maintain hope. He was pushing me one step further.

At one point in our conversation, he revealed this clearly. “Doctor, I don’t even care if it’s false hope – just tell me the cancer will disappear.”

Mr. B was asking me to lie to him.

The last thing I wanted was to take away hope, closing the door on a future that truly was clouded in uncertainty. But I also couldn’t look him in the eye and tell him his incurable disease was, in fact, curable.

That doesn’t mean there aren’t ways to phrase things kindly. Patients respond differently to “there’s a 90% chance of survival” and “there’s a 10% chance of death” even though the facts are identical.

When I sense a person like Mr. B is looking to me for hope, I try to frame that initial conversation in the style of the first statement. It’s not dishonest. With an already overwhelming piece of information, it’s choosing to share the most positive version of a narrative that can be told in many different ways and will evolve over time.

Moreover, being hopeful and realistic are not mutually exclusive. Just because someone is seeking the rare chance of a good outcome doesn’t mean he or she doesn’t understand the seriousness of the situation. It is possible to seek out experimental drugs while also considering hospice. It is possible to hope for a plan A while preparing for a plan B. Those are two compatible beliefs, and it’s OK – preferred, even – to hold them at once.

The challenge is avoiding getting pulled into an outlook that is not just positive, not just unlikely – but one with no basis in reality. There’s hope – and then there’s false hope. There’s a positive take – and then there’s lying. It can be a fine line, and with the intention of being kind it can be all too easy to “yes, but” our way into untruths.

The best we can do is set limits with compassion, and understand that telling the truth doesn’t always mean that someone hears it.

“Have you ever had a patient – I mean, someone like me, someone in my ... state ... get cured without any treatment?”

The chances of Mr. B’s cancer responding to chemotherapy were not good but hardly impossible. But without any therapy at all?

“I have not.”

“What about at other places ... in other states or countries. Have you ever heard of a person like me who was cured without treatment?”

“I have not.”

“I guess what I’m asking, Doctor, is ... have you ever seen where the cancer was there and then one day was not ... have you ever seen a miracle?”

Reaching. Grasping.

“I have not.”

“Well,” he said, “Maybe I will be the first.”

We look at each other, pondering this. In my silence is the answer.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

“Doctor, I have a question for you.”

“Yes?”

“Have you ever had a patient – I mean, someone like me, someone in my ... state ... get cured without any treatment?”

Mr. B thought he felt too well to have an aggressive cancer infiltrating his liver, abdominal wall, and lungs. He lived an active life, going to church, volunteering, and playing with his grandchildren. But the biopsy results were back. It wasn’t an infection. It wasn’t inflammation. It was stage 4 cancer.

And just like that, his life changed.

His prognosis was likely months, with a best case scenario of several years. But gone were the days of thinking 10, 20, and 30 years ahead.

Dr. Ilana Yurkiewicz


Mr. B was a spiritual person. He told me this was God’s plan for him. He trusted God to get him through this, so he would not need chemotherapy.

Looking for hope in the face of terrible news is a common reaction. It’s natural. We tend to be optimists, and we look for a silver lining. We look for the “but.”

Patients and doctors alike do this.

“The cancer is metastatic ... but we have chemotherapy that can slow it down.”

“The doctor told me the median survival is 3 months ... but I plan to beat those odds.”

“Your mother is dying ... but we have good medicines to make her comfortable.”

 

 


It’s not a bad thing. It’s an adaptive mechanism and positive outlooks can even be associated with better medical outcomes. There’s almost always a “but” if you look hard enough. And in the face of life-changing news, we are incentivized to look really, really hard.

Yet Mr. B caught me off guard because he wasn’t asking me to maintain hope. He was pushing me one step further.

At one point in our conversation, he revealed this clearly. “Doctor, I don’t even care if it’s false hope – just tell me the cancer will disappear.”

Mr. B was asking me to lie to him.

The last thing I wanted was to take away hope, closing the door on a future that truly was clouded in uncertainty. But I also couldn’t look him in the eye and tell him his incurable disease was, in fact, curable.

That doesn’t mean there aren’t ways to phrase things kindly. Patients respond differently to “there’s a 90% chance of survival” and “there’s a 10% chance of death” even though the facts are identical.

When I sense a person like Mr. B is looking to me for hope, I try to frame that initial conversation in the style of the first statement. It’s not dishonest. With an already overwhelming piece of information, it’s choosing to share the most positive version of a narrative that can be told in many different ways and will evolve over time.

Moreover, being hopeful and realistic are not mutually exclusive. Just because someone is seeking the rare chance of a good outcome doesn’t mean he or she doesn’t understand the seriousness of the situation. It is possible to seek out experimental drugs while also considering hospice. It is possible to hope for a plan A while preparing for a plan B. Those are two compatible beliefs, and it’s OK – preferred, even – to hold them at once.

The challenge is avoiding getting pulled into an outlook that is not just positive, not just unlikely – but one with no basis in reality. There’s hope – and then there’s false hope. There’s a positive take – and then there’s lying. It can be a fine line, and with the intention of being kind it can be all too easy to “yes, but” our way into untruths.

The best we can do is set limits with compassion, and understand that telling the truth doesn’t always mean that someone hears it.

“Have you ever had a patient – I mean, someone like me, someone in my ... state ... get cured without any treatment?”

The chances of Mr. B’s cancer responding to chemotherapy were not good but hardly impossible. But without any therapy at all?

“I have not.”

“What about at other places ... in other states or countries. Have you ever heard of a person like me who was cured without treatment?”

“I have not.”

“I guess what I’m asking, Doctor, is ... have you ever seen where the cancer was there and then one day was not ... have you ever seen a miracle?”

Reaching. Grasping.

“I have not.”

“Well,” he said, “Maybe I will be the first.”

We look at each other, pondering this. In my silence is the answer.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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Charity case

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Mon, 03/18/2019 - 08:12

 

A 45-year-old comes to the emergency department because of abdominal pain for the last few months. She has been belching and hiccuping, and she has lost 20 pounds.

A 45-year-old comes to the emergency department, where a CT scan shows a large mass in her stomach. There also are enlarged lymph nodes nearby and far away, and the wall of her abdomen is studded with smaller tumors.

A 45-year-old comes to the emergency department and is told she needs to be admitted to the hospital to work this up. It’s likely cancer, she is told, but the only way to confirm the diagnosis is with a biopsy. They do a procedure in which they insert a camera through her mouth and down her esophagus, and they take a sample of the large mass in her stomach. It is cancer – and it’s widely metastatic.

The resident on her team sends me a text. She wants to know: “What do you do in cases like this?”

Except she is not asking for my advice on medical management. The same day the patient is told it’s cancer, she has a confession. She has no insurance.

Dr. Ilana Yurkiewicz

I read the text, then turn to the oncology case manager sitting next to me. We talk it through and the answer is as I suspected.

“She can be seen in the county clinic,” I text back, and give the name of an oncologist there. “Or, she can apply for emergency Medi-Cal to follow up at our hospital. But that process can take over a month to get approval.”

Except the case manager looks into it further. Actually, she does not qualify for emergency Medi-Cal because she invoked it earlier that year when she had an infection.

When it’s an emergency, hospitals tend to handle this kind of situation well. I’ve seen hospitals absorb the costs of major medical interventions when a person is acutely ill. They call it a charity case, and they cover all the costs of acute illness and treatment when the patient cannot.

But what this person needs is different. The treatment she needs is not emergent. What she needs is a regular oncologist who can give chemotherapy, monitor for side effects, check her blood counts, get regular scans to monitor the disease, and have conversations with her to navigate the bigger questions. What she needs is an ongoing relationship.

That is harder for a hospital to absorb.

I think back to a year ago, when I was volunteering at the free clinic. A 77-year-old man came in complaining of increased urinary frequency. I did a rectal exam, and I felt it: a large, irregular prostate mass. I thought of all I would normally do, down the algorithm of treatment – I’d order a PSA blood test, arrange for him to have a biopsy, likely get a CT scan, then get him back in the clinic to start treatment. But there, I could not do any of that. There, I was lucky when I could get someone a $4 medication. There, all I could do was hand him the truth. “I am concerned you have prostate cancer,” I said.

I remember how he began crying tears of joy. “God bless you,” he said, grabbing my hand. God bless me? For what? For handing him a problem but no solution? For sharing a suspicion of a diagnosis that could kill him but being unable to intervene? Is it really better knowing?

I deliver a lot of bad news in oncology, but I usually get to blame the disease. The cancer is aggressive. The cancer is causing your pain.



What I hate perhaps even more is the other type of bad news: having our hands tied by a system I disagree with – and yet am somehow part of. We can offer X, but not Y. You can be seen in this clinic, but not in that one. This treatment is covered, but that part would be out of pocket. Negotiating what is absolutely necessary and what is preferred.

A 45-year-old comes to the emergency department with abdominal pain. She is told she has metastatic cancer that will take her life in less than 6 months without treatment. She has many questions for me, the inpatient oncology fellow. But they are not about the disease, the prognosis, or the treatment. They are all about insurance options, reimbursement, and cost.

Like everyone with a new devastating diagnosis, she is weighing her options. Except her decisions are weighted with the fear of bankruptcy; her calculus trying to compute the cost of her life.

“I wish things were different,” I say.

Minor details of this story were altered to protect privacy.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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A 45-year-old comes to the emergency department because of abdominal pain for the last few months. She has been belching and hiccuping, and she has lost 20 pounds.

A 45-year-old comes to the emergency department, where a CT scan shows a large mass in her stomach. There also are enlarged lymph nodes nearby and far away, and the wall of her abdomen is studded with smaller tumors.

A 45-year-old comes to the emergency department and is told she needs to be admitted to the hospital to work this up. It’s likely cancer, she is told, but the only way to confirm the diagnosis is with a biopsy. They do a procedure in which they insert a camera through her mouth and down her esophagus, and they take a sample of the large mass in her stomach. It is cancer – and it’s widely metastatic.

The resident on her team sends me a text. She wants to know: “What do you do in cases like this?”

Except she is not asking for my advice on medical management. The same day the patient is told it’s cancer, she has a confession. She has no insurance.

Dr. Ilana Yurkiewicz

I read the text, then turn to the oncology case manager sitting next to me. We talk it through and the answer is as I suspected.

“She can be seen in the county clinic,” I text back, and give the name of an oncologist there. “Or, she can apply for emergency Medi-Cal to follow up at our hospital. But that process can take over a month to get approval.”

Except the case manager looks into it further. Actually, she does not qualify for emergency Medi-Cal because she invoked it earlier that year when she had an infection.

When it’s an emergency, hospitals tend to handle this kind of situation well. I’ve seen hospitals absorb the costs of major medical interventions when a person is acutely ill. They call it a charity case, and they cover all the costs of acute illness and treatment when the patient cannot.

But what this person needs is different. The treatment she needs is not emergent. What she needs is a regular oncologist who can give chemotherapy, monitor for side effects, check her blood counts, get regular scans to monitor the disease, and have conversations with her to navigate the bigger questions. What she needs is an ongoing relationship.

That is harder for a hospital to absorb.

I think back to a year ago, when I was volunteering at the free clinic. A 77-year-old man came in complaining of increased urinary frequency. I did a rectal exam, and I felt it: a large, irregular prostate mass. I thought of all I would normally do, down the algorithm of treatment – I’d order a PSA blood test, arrange for him to have a biopsy, likely get a CT scan, then get him back in the clinic to start treatment. But there, I could not do any of that. There, I was lucky when I could get someone a $4 medication. There, all I could do was hand him the truth. “I am concerned you have prostate cancer,” I said.

I remember how he began crying tears of joy. “God bless you,” he said, grabbing my hand. God bless me? For what? For handing him a problem but no solution? For sharing a suspicion of a diagnosis that could kill him but being unable to intervene? Is it really better knowing?

I deliver a lot of bad news in oncology, but I usually get to blame the disease. The cancer is aggressive. The cancer is causing your pain.



What I hate perhaps even more is the other type of bad news: having our hands tied by a system I disagree with – and yet am somehow part of. We can offer X, but not Y. You can be seen in this clinic, but not in that one. This treatment is covered, but that part would be out of pocket. Negotiating what is absolutely necessary and what is preferred.

A 45-year-old comes to the emergency department with abdominal pain. She is told she has metastatic cancer that will take her life in less than 6 months without treatment. She has many questions for me, the inpatient oncology fellow. But they are not about the disease, the prognosis, or the treatment. They are all about insurance options, reimbursement, and cost.

Like everyone with a new devastating diagnosis, she is weighing her options. Except her decisions are weighted with the fear of bankruptcy; her calculus trying to compute the cost of her life.

“I wish things were different,” I say.

Minor details of this story were altered to protect privacy.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

 

A 45-year-old comes to the emergency department because of abdominal pain for the last few months. She has been belching and hiccuping, and she has lost 20 pounds.

A 45-year-old comes to the emergency department, where a CT scan shows a large mass in her stomach. There also are enlarged lymph nodes nearby and far away, and the wall of her abdomen is studded with smaller tumors.

A 45-year-old comes to the emergency department and is told she needs to be admitted to the hospital to work this up. It’s likely cancer, she is told, but the only way to confirm the diagnosis is with a biopsy. They do a procedure in which they insert a camera through her mouth and down her esophagus, and they take a sample of the large mass in her stomach. It is cancer – and it’s widely metastatic.

The resident on her team sends me a text. She wants to know: “What do you do in cases like this?”

Except she is not asking for my advice on medical management. The same day the patient is told it’s cancer, she has a confession. She has no insurance.

Dr. Ilana Yurkiewicz

I read the text, then turn to the oncology case manager sitting next to me. We talk it through and the answer is as I suspected.

“She can be seen in the county clinic,” I text back, and give the name of an oncologist there. “Or, she can apply for emergency Medi-Cal to follow up at our hospital. But that process can take over a month to get approval.”

Except the case manager looks into it further. Actually, she does not qualify for emergency Medi-Cal because she invoked it earlier that year when she had an infection.

When it’s an emergency, hospitals tend to handle this kind of situation well. I’ve seen hospitals absorb the costs of major medical interventions when a person is acutely ill. They call it a charity case, and they cover all the costs of acute illness and treatment when the patient cannot.

But what this person needs is different. The treatment she needs is not emergent. What she needs is a regular oncologist who can give chemotherapy, monitor for side effects, check her blood counts, get regular scans to monitor the disease, and have conversations with her to navigate the bigger questions. What she needs is an ongoing relationship.

That is harder for a hospital to absorb.

I think back to a year ago, when I was volunteering at the free clinic. A 77-year-old man came in complaining of increased urinary frequency. I did a rectal exam, and I felt it: a large, irregular prostate mass. I thought of all I would normally do, down the algorithm of treatment – I’d order a PSA blood test, arrange for him to have a biopsy, likely get a CT scan, then get him back in the clinic to start treatment. But there, I could not do any of that. There, I was lucky when I could get someone a $4 medication. There, all I could do was hand him the truth. “I am concerned you have prostate cancer,” I said.

I remember how he began crying tears of joy. “God bless you,” he said, grabbing my hand. God bless me? For what? For handing him a problem but no solution? For sharing a suspicion of a diagnosis that could kill him but being unable to intervene? Is it really better knowing?

I deliver a lot of bad news in oncology, but I usually get to blame the disease. The cancer is aggressive. The cancer is causing your pain.



What I hate perhaps even more is the other type of bad news: having our hands tied by a system I disagree with – and yet am somehow part of. We can offer X, but not Y. You can be seen in this clinic, but not in that one. This treatment is covered, but that part would be out of pocket. Negotiating what is absolutely necessary and what is preferred.

A 45-year-old comes to the emergency department with abdominal pain. She is told she has metastatic cancer that will take her life in less than 6 months without treatment. She has many questions for me, the inpatient oncology fellow. But they are not about the disease, the prognosis, or the treatment. They are all about insurance options, reimbursement, and cost.

Like everyone with a new devastating diagnosis, she is weighing her options. Except her decisions are weighted with the fear of bankruptcy; her calculus trying to compute the cost of her life.

“I wish things were different,” I say.

Minor details of this story were altered to protect privacy.

Dr. Yurkiewicz is a fellow in hematology and oncology at Stanford (Calif.) University. Follow her on Twitter @ilanayurkiewicz.

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