The Cancer Stories You Never Hear
I'm often asked why I would spend my career focused on the unpredictable, unrelenting misery of cancer. Here's why.
Recently, some residents asked me why I had chosen my medical specialty.
The truth about life is that so often it is a chance encounter, an uncertain leap that takes us into the careers we “choose.” My own story of how I came to become a hematologist-oncologist is full of the randomness of my own life.
That’s not what they were asking. They were asking why anyone would choose hematology-oncology—or heme/onc, in medical parlance—given what they know. Their experience of cancer is colored by the inpatient oncology service. Too often, they take care of people near the end of life. Disproportionately, people who haven’t had good conversations with their doctor, people who may have unrealistic ideas about what’s possible, or people suffering from the unpredictable, unrelenting misery of cancer. In other words, they see the hard cases. Naturally, then, they puzzle over why someone would choose to do it full time.
So I told them what they don’t see.
When I was a young faculty member, a young lady walked into our office. She said she had Hodgkin’s lymphoma and had received some, but not complete, treatment. After starting treatment back home, she had gotten in her car with her three kids and driven a few thousand miles to set up a new life. She said it was best we didn’t contact the other facility for records. She said she knew how important the treatment was for her life. She said she wanted to live, and wanted to resume treatment. She was soft-spoken, clear and sincere, and I knew immediately she was running from something.
When it comes to Hodgkin’s lymphoma, treatment matters. History books report that prior to chemo and radiotherapy, the disease was a universal death sentence for young adults. Now, we have cure rates in the high 90-percent range thanks to ABVD chemotherapy, a combination of four drugs.
But the timing of chemotherapy matters; giving it correctly matters. You need to know what to do if the patient presents on cycle 2 day 15 with profound neutropenia, and what not to do. The right answer is: don’t stop treating.
She was a sweet and kind woman, and she was part way through a curative treatment, and it was really important that we complete it without any deviation from the schedule or plan. She didn’t have insurance, didn’t have a place to stay, had a car, three children, and a disease that could take her life.
Even though I was young, my views of the healthcare system had already cemented. I knew the system was corrupt and often an obstacle to good care. I knew it’s the doctor’s job to deliver the best care to the patient, and that the wishes of the hospital, the university, the insurance company, and the drug company don’t matter.
Any obstacle to the best outcome for my patient is an obstacle that I’m unable to accept. I had practiced, and keep practicing to this day, all the techniques to manipulate the system for the best interests of my patient. I am willing to do anything, including: playing nice, kissing up, escalating the situation, putting pressure on the system, public shaming of the organization, and advocating for my patient relentlessly. I was skilled at documenting in the way necessary to facilitate good care. I was practiced in defeating useless hospital bureaucrats, and incompetent insurance reviewers to get the right treatment for my patient.
That’s what we did for her. We bent all the rules, and we found a way to deliver good care. Per her wishes, we negotiated a way to learn enough about her past care to resume it correctly, but not enough to leave a paper trail. We helped her find a place to stay, and a way to fund her expenses. We found ways to get the treatment paid for. We helped her find someone to watch her kids when she was getting chemotherapy, and when she was recovering. My nurse and I—we were her team, unfailingly loyal, and we let her know it.
Slowly but surely, with complications along the way, we got her through the treatment, and helped her get back on her feet. Interim scans were reassuring, and we started to have the hope that she would make it.
Slowly but surely, as she got to know us, her life story filled out. She had married young, had kids early, but found she was in a bad relationship. She had been the victim of domestic violence—violence paired with cancer and chemo—and one day, when she feared she wouldn’t survive, she got in her car with her kids and drove.
Every time I saw her in the office, she smiled at me. I can still close my eyes and picture her face perfectly. She must have thanked us 100 times for our help. Despite all she had endured, she was a joyous person.
She finished her treatment. Her scans showed complete response. She gave me and my nurse a warm hug. She thanked us for all that we had done for her. She wasn’t going to be staying in the area. She had a new plan, and a new life ahead of her.
I know you want to know: And yes, she’s still alive out there. She’s doing well. So are her kids.
So why oncology? It’s hard to know why we go into whatever we do, but these are the stories they don’t see on the cancer wards. There aren’t many jobs where you can make a difference in someone’s life. Where you have to be on point with treatment, you have to know the data, but you must be willing to do whatever it takes. You save one life, you save the world? I don’t know, but I can promise you, on the hard days, I can think of her, and it sure feels that way.
A version of this story originally appeared in Sensible Medicine.