You've been diagnosed with bladder cancer: seven things to do next

You've been diagnosed with bladder cancer: seven things to do next

To quote Betty Rollin, from the title of her 1976 book, First, You Cry.  And for the record, let me say that crying isn’t a sign of weakness. There is nothing weak about admitting you’re afraid or about expressing your grief and fear.

After that, here are seven things to do next.

  1. Sign up with the Bladder Cancer Advocacy Network (BCAN) online support community. In addition to loads of information, you can communicate online with people who know almost everything there is to know about bladder cancer, firsthand. Caregivers, family members, patients diagnosed at every stage hang out here and answer questions, offer support, and provide you a place to ask anything. Anything at all. Not every group online is safe, but this one is. Not every group online provides sound information, but this one does.
  2. Print off the National Comprehensive Cancer Network’s (NCCN) guidelines for treating bladder cancer. You’ll have to register for the site, but it is free. Print the guidelines and make sure that your doctor is following them to a “T.”
  3. Brainstorm questions for your doctor and then schedule an appointment just to talk to him/her. Your urologist or oncologist is the best person to get answers to questions about your particular disease. A diagnosis of bladder cancer comes with all sorts of test results and details that you’ll need help to understand. And, take someone with you. It’s very hard to listen and follow everything a doctor says, especially in the early days after diagnosis.
  4. Make sure you have the right doctor for you. My best recommendation is to find a doctor associated with a National Cancer Institute (NCI) designated comprehensive cancer center. You can find one near you here. Doctors affiliated with these facilities will be the most knowledgeable, and the NCI-designated centers offer a full spectrum of support, from mental health to cancer treatment and clinical trials.
  5. Get a second opinion. The most important thing you can do with regard to diagnosis is to get a second reading of your pathology. There are pathologists specially trained to interpret bladder cancer biopsies. Find one of those specialists. An NCI-designated center will usually make it easy to get a second opinion. Even if you have to pay out of pocket, get those slides seen by a specialist. (See my post on second opinions here.)
  6. Become your own advocate and start collecting everything. Keep every report and test result, every receipt and prescription in a binder. No one else will keep track of it, so you will need to do this for yourself. I can’t tell you how many times I’ve had to track down past test results. A note of caution, however: you will not be able to make complete sense of specialists’ notes about test results. You’ll need your physician to help you interpret these. The words “possible metastases” appears in my first CT scan report even though there was absolutely no evidence of any metastases.
  7. Remember, always remember, that YOU are not a statistic. Statistics describe groups. You are an individual with a very specific and unique situation.

You might be interested in these posts

Women and bladder cancer: an interview with the University of Chicago’s Gary Steinberg

Being a proactive patient: three things you need to know about CT scans

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