Patients Say "It’s Time" to Metastatic Survivorship
An April article in the New England Journal of Medicine (NEJM) by two metastatic cancer patients, Terry Langbaum and Thomas Smith, argued that it is time researchers examine and understand the challenges of long-term metastatic survivors.1
Cancer survivorship research and programs have historically focused on those whose disease has gone into remission. They live with no evidence of disease and, if they are lucky, their disease does not return.
Patients are living for years with metastatic cancer
With the advent in recent years of immunotherapy drugs as well as targeted therapies, some patients who would not have survived more than a few months in the past, are now living years with metastatic disease. Granted, at this point, most metastatic cancer patients are not experiencing miraculous remissions. But some are. And so, the possibility exists.
This is happening among bladder cancer patients. A small number responding amazingly well to new treatments and continue to live well with metastatic disease. This is both wonderful and complicated for these patients.
As the NEJM authors point out, these patients are staying alive at great expense. Many new therapies cost $10,000 per month. If patients are uninsured or under-insured, how are they expected to cope with the financial strain these expenses create for them?
The authors also point to the practical challenges such patients face. When you have so-called incurable disease but are living for years, should you follow through with your otherwise recommended health screenings for other unrelated conditions? Should you plan travel? How can they strike a balance between hopeful and realistic?
The pain of uncertainty
I empathize with the plight these patients and their families face. In one respect, it is wonderful and joyous to have an effective treatment, especially if it is giving you good-quality life. At the same time, though, we humans crave certainty and there is nothing more maddening than being told that you (or a person dear to you) have limited time on this planet but no one can tell you how much time.
Really, we all have limited time on this planet whether we have cancer or not. But somehow when we are well, we take comfort in the possibility that the amount of time may be very long. When we are told (because of a disease) that our time may be limited, we immediately want some certainty about just how limited.
And, of course, no one knows the answer to that.
The need for more research
The article’s authors urge more research on the psychological, social, spiritual, and financial aspects of living many years with metastatic cancer. As bladder cancer treatment evolves and immunotherapies and targeted therapies improve, we are likely to see more long-term metastatic bladder cancer survivors. There is a lot of support and research today for survivorship after a radical cystectomy and how to live with the so-called “new normal.”
Different concerns from other bladder cancer survivors
But what about how to live a long time with metastatic bladder cancer? These patients might still have their bladders if they were diagnosed metastatic. So they wouldn’t necessarily face the same challenges of patients without their bladder. But they would face these new and different problems and questions.
And let me be clear: these would be “good problems” and this would be good news compared to what metastatic bladder cancer patients faced in the past.
But it would also be good news if the research community and clinicians follow the thoughtful suggestions of Terry Langbaum and Thomas Smith.
How long did it take to get diagnosed after your first symptom(s) appeared?