As an oncologist, cancer care can sometimes come close to home.
Some years ago, my cousin contacted me with advanced non-small cell lung cancer. I reviewed his scans revealing extensive stage disease. The physician was pessimistic and suggested hospice.
(Hospice care, generally speaking, is to manage pain and comfort for people who are nearing the end of life.)
As I reviewed the results my principal interest was to identify an actionable finding.
With extremely high expression of PDL1, the target for immune therapy, we now knew that he had a good chance of response to a checkpoint inhibitor. Clearly, my cousin needed immune therapy not hospice.
After some discussion, he was ultimately treated and had a prompt and durable remission. Two years later when he progressed, again he was offered hospice. Our recommendation then was to try a mild form of chemotherapy which led to a second good and durable response.
Ultimately, he succumbed, but by then he was in his 80s and had enjoyed an active and full life.
Several weeks ago, I was contacted by the same cousin’s widow. She had symptoms that led to scans identifying widely metastatic cancer with bone metastases, liver involvement, and large masses in the lung. She was offered hospice.
I explained to the patient that every cancer has its own features and that we needed to learn more about the type of cancer before we simply gave up.
It turns out that she has small-cell lung cancer, a particularly aggressive and rapidly spreading form of lung cancer that is, fortunately, very responsive to treatment. Nonetheless, her physician was very pessimistic and suggested against treatment.
Despite the gravity of the situation, I felt that a course of therapy was warranted. After all, she could die of her cancer, or die in the course of treatment, but without treatment she would absolutely die.
Her newly minted physician was not prepared to bend the rules.
Patients with a rising Bilirubin and deteriorating performance status should not be treated, or so the guidelines say. But this was small cell lung and in the first-line setting the majority of patients respond. I had a conversation with her physician and he ultimately agreed to treat her with a low dose therapy.
Small cell lung cancers are exquisitely sensitive to chemotherapy and can turn around quickly. In fact, within 3 weeks the patient is out of the house, shopping and carrying on normal activities. To celebrate, she sent our laboratory a package of fresh bagels, cream cheese and lox from Zabars.
My role in both of these cases was simply to act as a champion for their care.
I did not need to use my laboratory studies but, instead I simply refused to yield until all options had been explored. While I might weigh in sometime in the future with laboratory analyses if needed, the good response to date is victory enough for now.
We are often contacted by patients who have very advanced disease, complicated presentations and many of them have failed first or second line therapy. We explain to these patients that if their performance status is good, if they are motivated to continue treatment, and there is accessible tissue, they do not need to give up.
We work hard to avoid futile care and one of the roles of our laboratory is to tell some patients that they will not respond. However, allowing people who can respond to die unnecessarily is not a service of our patients.
Cancer patients must take charge of their disease.
If they are well, regardless of the gravity of their condition, they should look for options.
While clinical trials randomize patients to treatment A versus treatment B, with a coin-flip to select candidates, it is sometimes possible to find a drug or combination that the treating physician did not know or think about.
Cancer patients do not need to take no for an answer.