How to Start Researching Your Bladder Cancer
It is daunting when you first receive a bladder cancer diagnosis. Doctors bombard you with so much information. And there is so much online. And everyone, it seems, suddenly has an opinion about what you should do. Here are some tips on how to start researching your cancer.
My assumptions before you begin reading further
I am assuming you have gotten second opinions – both on yourself and on your pathology slides (and both preferably from an NCI-designated center). I’m also assuming that you know the type, stage, and grade of bladder cancer that you have. If you haven’t taken these steps or if you don’t know the answers to these questions, I would recommend reading my article, "3 Things to Do Right After You Are Diagnosed with Bladder Cancer" before reading this one.
Start with the patient-oriented resources
I recommend you start by reading the sites specific to patient information about bladder cancer. BladderCancer.net is a great place to start with an overview of the basics here and an overview of treatment here.
The Bladder Cancer Advocacy Network (BCAN) is the only non-profit dedicated solely to bladder cancer. It offers helpful information for the newly diagnosed and some excellent webinars with doctors. The American Society of Clinical Oncologists (ASCO) also has a site written specifically for patients. I like it because it manages to give detailed medical information but also keep the information at a high level for the general reader.
Bladder cancer resources if you want a deep dive
The National Comprehensive Cancer Network (NCCN) establishes the clinical guidelines that are generally viewed as the standard of care. In 2019, NCCN published an excellent, detailed but written for patients, guide to the bladder cancer standards.
American Urological Association
Professional associations like the American Urological Association (AUA) also publish standards for treatment. These are more technical as they are geared towards doctors. But you might find them interesting. You can find the AUA guidelines for non-muscle invasive bladder cancer here and the guidelines for muscle invasive (non-metastatic) here.
The journal, Bladder Cancer, is devoted solely to publishing the latest research about bladder cancer. This journal and the AUA guidelines offer some heavy reading and research and may require a lot of Googling and looking up terms if you are not a doctor. But if you like digging in, these are good sources for learning more and for crafting detailed questions for your doctors.
Learn from current patients and those ahead of you on the path
We are all newbies when we first encounter bladder cancer. As you likely have already noticed, there are many people who have already been through much of what is new to you. Draw on that experience. Many of those people are very willing to share their stories with other patients. There were people who helped them when they were new to the disease. You can find others on the Community page on the BladderCancer.net site and on the Facebook page. You can also find them at in-person (when those resume) and online support groups.
Ask questions of other patients. People are often willing to help and it is very likely someone has had your same question in the past. I’ve noticed that some new patients prefer to “lurk” because they are uncomfortable asking questions.
Peer down the road at what could be next
A distressing reality of bladder cancer is that it requires lifelong surveillance. The luckiest patients respond well and are even cured by BCG. They then undergo periodic surveillance. But many patients require ongoing BCG and ultimately other treatments.
I think it’s worth asking your doctors: if this treatment doesn’t work, what would the next treatment be? One especially useful question with regard to any treatment along the bladder cancer continuum: will this particular treatment potentially preclude me from other treatments down the road such as clinical trials? Clinical trials are not just for metastatic bladder cancer patients. For example, trials are happening to test various combinations of immunotherapy drugs possibly as an alternative to, or in addition to, BCG.
Have you talked to your doctor about navigating sex with bladder cancer?