Is a Cancer Survival Rates Website a Good Idea?
Hester Hill Schnipper, LICSW, OSW-C Program Manager Emeritus, Oncology, Social Work
FEBRUARY 05, 2020
This is either a really terrific or a really terrible idea. Since hearing of this new website, CancerSurvivalRates.com, I have changed my opinion multiple times.
The concept is simple. A user is asked to enter basic information: gender, age, and details about the cancer such as stage, grade of cells, time since diagnosis. The answers are based on information collected by the National Cancer Institute. The professed hope is that this tool will be a conversation starter or aid for patients and their doctors, not that it will replace a discussion with your doctor.
Why is this even needed? Or, put another way, why did this occur to someone? We all know that the How long do I have, Doc conversation is very difficult and often never happens. When it does happen, it is very likely that the patient and family don't hear everything or remember it incorrectly. When studies have been done to explore patients' recollections of painful conversations, it is always clear that memory is inaccurate. Doctors may try to present a more optimistic outlook and may well try to smooth the edges with hopeful statements and encouragement. None of us would really want our doctors to say something like: There is no way you will be alive in two months. But, if that is the fact, we need to have some awareness of the reality.
Important reminder: No one can know with certainty what the future will hold or how long someone will live. There are always surprises, good and bad, and it is vitally important that patients and their families hold on to hope and try to focus on the present. I have known many people who far outlived any predictions. Here is an example: I know a woman who was diagnosed with a very aggressive breast cancer in her early 40s. At that time, stem cell transplants were sometimes used as treatment in this situation, and she went through this difficult ordeal. Not long after, she developed new mets [metastasis] in her lungs, and began weekly chemotherapy. It was anticipated that her life would be brief. After all, she had already had a great deal of therapy, and the cancer had proven itself to be resistant to the drugs. She continued with the weekly treatment for years, and, eventually, her doctor stopped it for fear that more harm than good was being done. That was more than a decade ago, and she continues to thrive with no sign of any cancer.
We know that most people, after a diagnosis or hearing about changes in their situation from their doctor, go home to consult with Dr. Google. It can be very difficult to sort through information online, and there is always uncertainty regarding the credibility of sources. Using legitimate sites can quickly become confusing and technical, and there is never a way to tease out the nuances of one's own situation. The hope is that Cancer Survival Rates will be more accurate and straightforward.
No one is suggesting that this site ever become a substitute for discussions with your doctors. It can, however, be a way to get the big picture, to begin to consider the hard facts, and to prepare for thoughtful conversations both with one's family and doctors.
What are your thoughts about this? Would you want to look up your prognosis? Join the BIDMC Cancer Community and share your thoughts.