Here are the 5 things I wish I knew at diagnosis time (and tried to find out about when I was first diagnosed) that I think all newly diagnosed people should know:
1. You are not alone! While we're sorry you had to join our club, we've been through what you are going through now and are here to help you.
2. Bladder cancer is NOT a death sentence! Bladder cancer caught at early stages (non-invasive) is very treatable. Actually, invasive bladder cancer is very treatable as well as long as it is caught before it spreads outside the bladder. However, it is extremely important that you treat this aggressively. Do not spend months contemplating options as time is cancer’s friend much more than your friend right now.
3. Treatments for non-invasive bladder cancer are very different from other cancers you have heard about. Even if your doctor suggests BCG (immunotherapy) or chemotherapy, it is instilled directly into your bladder (not into your blood stream) so it does not cause the hair loss, bone marrow damage, and other side effects that other types of chemotherapy have.
4. Second opinions from major cancer centers that deal specifically with bladder cancer are very important. You want somebody treating you and/or recommending a treatment plan that deals with bladder cancer every day. If your doctor has a problem with you getting a second opinion, drop him/her like a rock because it is an indicator that they are not such a good doctor. It doesn’t mean you don’t like your doctor, it means you want the highest chance of survival and this is borne out by the statistics. More experience equals better outcomes.
5. Keep notes. This is a stressful time and your memory of discussions with doctors can be spotty. Research shows it is very low. Keep a journal or log book of your visits, your questions, doctor’s answers, your medications, treatments, symptoms, etc. All of this will help you immensely during your treatment. A pocket tape recorder is OK also. Having a loved one accompany you on visits is also a good thing but should not be a substitute for detailed notes. Get copies of your records from your doctor for every test and every visit. Read them and ask questions about them and be sure they are accurate.
5 1/2. You are NOT alone! Search this site in the information area and read the information two or three times. Take notes when the articles raise questions that you want to ask your doctor. Search through our Forum section and ask us questions. There is nothing about bladder cancer that you can ask that is too personal.
Mike