I was at a meeting in 2014, called the REV Forum; its objective was to rethink cancer care delivery by gathering patients, advocates, thought leaders, and entrepreneurs. Even now I am struck by some of the things I learned that day. One that stays in mind is when a woman who looked like she was in her late 30s stood up and told us, “I had ovarian cancer. And even now, I don’t remember anyone telling me what I was going to go through. I had no one guiding me; it was as if I taught myself. I learned how to be a patient with ovarian cancer.”
That thought came to me recently after a woman presented with a persistent cough. She was in her early 70s and had never been sick. She never smoked, exercised fairly regularly, and ate sensibly. The cough started in late fall, which she attributed to allergies. When it did not go away, she saw her primary care doctor, who treated her for bronchitis (common things are common, after all). Two months went by and still she coughed. Then she noticed small bumps in her neck, and then a mass in her armpit. Still, her doctor was not worried. After another few weeks and no improvement, she underwent imaging, which showed multiple lung masses, including a large one in the right upper lung field. Her doctor had cried when he told her the results. “I think you have cancer.”
She was floored; she later relayed she had stopped hearing him; all she heard was “cancer.” Her doctor sent her to a pulmonologist, who immediately performed a bronchoscopy. A few days later he sat with her. “You have lung cancer, stage IV.” She stared, not believing what she was hearing. She just let him talk. “You will need an oncologist, and you won’t be seeing me again.”
“What do I do next?” was her only response. He told her he would order staging scans and obtain a referral. As she got up to leave, he spoke once more. “Although I won’t see you again as your pulmonologist, I just want you to know I am also a hospice doctor.”
With that, she broke down. She wasn’t sure what she heard: cancer, stage IV, oncologist, scans, hospice. She left fearing she had no chance, that she would die, and die very soon. “Why did he say that to me?” she wondered. The next 24 hours she was paralyzed with fear. She did not know what to think, what to do, and what would happen next.
This was no patient of mine; nor was it a story told to me at that day at the REV forum. This was my aunt. And this was how she was told she had cancer. She had not been told what “staging” meant, that scans were the way we staged. She had not been told there are different types of lung cancer, nor that molecular changes in some cancers were being used to choose treatments. She also had not been told that palliative care can be of use; and that it was not the same thing as hospice.
Hearing what she went through, I made arrangements for an expedited evaluation with an oncologist I trusted. I reached out to my colleague by email and got a response within an hour. I spoke to my aunt about how lung cancer treatment had evolved, the role of genomic testing to predict treatment, and yes, even the role of palliative care. But, I knew I should not — and would not — be her oncologist. What she needed from me, from her family, was support.
Her first visit to my colleague seemed to change everything. She called her oncologist “kind,” commented on how the visit went for an hour; “She didn’t rush or anything.” Her doctor asked about her life, her kids, her partner. “It was as if she was getting to know me,” and it made her see that everything might be okay. “She explained what lung cancer was, where it was in my body. She told me they were going to test the tumor to see what treatment would have the best shot. I felt I learned more after that one visit then I had understood since cancer came into my life.”
Her subsequent visits left her even more comfortable with her care; she even saw that it was possible to live with cancer. She started treatment, and even though she knew she could not be cured, she was hopeful that her life could still extend into years.
My aunt’s journey reminded me of several things: That no one is equipped to learn they have cancer from the start, and that words can mean everything. It taught me that as oncologists, we can teach, and we can comfort; and that many patients will appreciate it if we do both. Yes, patients need to learn to do cancer, that much I believe. Who better to teach than those of us who have dedicated our professional careers to caring for them.
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