Staying One Step Ahead of Metastatic Bladder Cancer
Here is something that I didn’t truly understand about metastatic bladder cancer even though a doctor told me: it is likely to come back. No one knows when or with what intensity, but it is likely to come back. I know patients who have gone six months or a year before it comes back. I have known those who have gone one month. I have also known a patient for whom it came back every few months but he lived more than 10 years with a normal quality of life despite being constantly on a treatment.
Knowing the next possible treatment
Our tendency (and our wish) is that when the cancer shrinks, maybe it is gone for good. And this is certainly possible. But I still would recommend staying a step ahead by understanding what the next likely treatment option will be.
If you or a family member receives a metastatic diagnosis, understand that it is likely a disease you will live with and deal with for a long time. This is not a pleasant realization. But it is a helpful one that will make your life easier over time.
How to understand your specific diagnosis
Stage IV bladder cancer (or metastatic disease) is a systemic illness. And it is typically treated systemically. In 2018, there are far more treatment options and combinations than there were just five years ago. It is in your interest to gain an understanding of them. To do that, you should also understand your specific diagnosis. Is it transitional cell carcinoma or a less common type? To which organs besides the bladder, if any, has the cancer spread? Is the cancer causing, or likely to cause, pain given where it’s growing? It is worth your time to review the report from any CT or PET scan that was used to diagnose you. Even if you don’t understand it fully, it is a helpful starting point for asking informed questions.
Asking informed questions
If the doctor recommends an immunotherapy drug as a first-line treatment, you can ask why if you realize that platinum-based chemotherapy is typically the first-line treatment. If he or she recommends dose dense MVAC, with knowledge of treatment protocols you can ask why dose dense versus not dose dense? And why MVAC instead of cisplatin and gemzar?
Research new treatment options
I believe that the American medical system outsources far too much work to the cancer patients and their families. I do not like that this is the way it is, but it is the situation for now. New companies and nonprofits are coming into existence to help but just sifting through the options is a huge project. The most basic – and helpful – thing you can do for yourself (as patient or caregiver) is to gain the best understanding you can of the basics of bladder cancer treatment options for your particular type of bladder cancer and stage. In the case of metastatic disease, this may also include researching clinical trials. This can be a daunting task but it is one into which it is worth investing time to understand the landscape. The website www.clinicaltrials.gov is your likely starting point. There are many trials with different combinations of immunotherapy drugs. Learning about them slowly, as you have small amounts of time, will serve you well in the long run.
Understanding the treatment landscape, even at a most basic level, will help you ask informed questions and result in more robust discussions with doctors.