I can reword this question as, How do you find the balance between having a valid concern over an ache or pain and becoming a hypochondriac?
Last winter, I got up with a strong urge to pee in the middle of the night. What came out looked like cranberry juice and truly shocked me. When I went to my PCP, my urine showed no blood, and he prescribed an antibiotic for a UTI. It did no good, and when the course of the antibiotic was finished, I went back. Again, no blood, and he prescribed another antibiotic. Again, it did no good, as blood came and went all week. When I went back to the PCP, my urine finally showed blood. He told me that I almost certainly had a bladder tumor and sent me to a urologist.
It turned out that I had multiple high grade T1 tumors, the largest 3cm across. The urologist did a TURBT immediately followed by intravesical Mitomycin. He told me he was surprised that the pathology report showed that the muscle wall was negative for cancer. He took out 17 grams of tumors (which is apparently a lot).
After having the catheter removed a week later, I was given an appointment to come back in 3 months for a cystoscopy. A short time later, my urologist suddenly left the practice. I have to say, this made me feel kind of abandoned. I was eventually assigned to a new urologist, and I demanded an appointment to consult with him about his plans for me.
I went last week. Rather than just consult, he decided to scope me right then. This was five weeks before my scoping appointment. It turned out to be very fortunate he wanted to do this. We immediately saw that I still had several bladder tumors. The doctor couldn't say if they had been left over from before or were new, but they sure looked big and scary to me. I now have an appointment for another TURBT on May 21. The plan is to hopefully get these tumors out and then start BCG about 3 or 4 weeks later. That would go on once a week for 6 weeks with follow-up treatments likely later on.
I'm 66. Aside from trying to eat right and stay fit (and I've never smoked), I've never been the kind of person who worried about my health before. But having gone through this, I now find myself wondering about the ache in my hip, the indigestion, and so on, and wondering if it is cancer spreading. Since the cancer did not get into the muscle, am I being silly?
Sorry I got so lengthy. Since this is my first post, I thought I would give my history.
It is always a horrible shock when we are first diagnosed with bladder cancer!! Believe me, I can relate. It is CANCER and that is scary enough, but most of us never think about our bladder and don't know people who have had bladder cancer.
First, the answer to your "headline" question. It is extremely unlikely that your cancer has spread beyond the bladder since the biopsy did not show even growth into the muscle layer. You will know for sure after your second TURB. And by the way, a second TURB is not unusual and is considered "best practice" for urology! The first time the urologist is looking at whatever areas he identified during cystoscopy and it is very easy to miss some. The second time he knows a bit better where problems might be. Your new urologist's plan, BCG for six weeks followed by a maintenance course is excellent and is exactly what should be done for high grade, non-invasive bladder cancer.
IF the cancer had spread, it is highly that any of the symptoms you feel would be due to it. But it is human nature to worry about this and to feel as you do. While many cases of bladder cancer are due to smoking, there are many of us who have never smoked who show up with it.
Once you have the pathology reports from the second TURB, you and your doctor will have a much better idea of what you might be facing.
Wishing you all the best
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Thank you, Sara Anne! What you are saying will help to set my mind at ease. It's good to hear that "a second TURB is not unusual and is considered "best practice" for urology." I really felt black after seeing those tumors last week. I have mixed feelings about having the second TURBT. I want to have the tumors out, but I don't look forward to have a catheter again