Illusion of options

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.

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.

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.

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.