Hi Donna and welcome to our very exclusive club!! I know you didn't want to join.
You will know more about what the situation is when you see your urologist and get a copy of the pathology report. He (and it) will tell you whether the tumor that was removed was high grade (likely to grow and spread) or low grade; whether it was localized to the bladder lining or had progressed into the under layers or the muscle; whether the TURB got the entire tumor. OFTEN A SECOND TURB ABOUT 3-5 WEEKS LATER IS REQUIRED TO ANSWER ALL THESE QUESTIONS.
If the tumor was low grade and localized, it is likely that you HAD cancer. The problem with bladder cancer, even low grade, is that it does tend to return. Your urologist will be scheduling you for cystoscopy exams about every three months for about two years, then every six months until five years have passed, and then annually forever. During all this time, you only HAD cancer!
If the cancer was high grade, but still localized, your urologist may prescribe BCG treatments. I had high grade CIS....did the BCG treatments...and have been cancer-free for six years.
And you are right that a lot of people don't "get it." As much bladder cancer as there is, people just don't know anything about it.
We will be keeping really good thoughts for you.
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Welcome to the forum! Did you take any Pyridium? This medication turns your urine orange (which will stain your clothes if it gets on them) - it relaxes the bladder and helps you tolerate a bladder infection until the antibiotic can do its healing work.
My opinion -- you have had bladder cancer, not have it.
I had my TURBT a week ago and tomorrow, I go in for my one week follow up visit. I was diagnosed after blood in my urine, a clear CT, a clear US, and then a tumor seen on cystoscopy. I, like a lot of others, don't like the C word.
Saturday night, I started with pain on urination which got progressively worse to the point that Monday, I was begging for pain killers. I saw my family practice doc as the uro could not see me (long and not fun story). He started me on antibiotics and pain meds, and since then, it's been getting slowly better - from an 11 out of 10 on urination to a 4ish out of 10. I've also gone from peeing every 15-30 minutes to every hour, to every 2 hours today. I am weaning off the pain meds and tomorrow will be taking Tylenol only if I need it at all.
Anyway, this is another nervous evening. First was the ER visit, then was the cystoscopy, surgery, and now the follow up and discussion about pathology.
I read a lot of your stories last night and thought I would drop by and say hello.
Here's my existential question - Do I have cancer or have I had cancer now that the surgery supposedly got it all?
Thanks for being here. Not a lot of people get it.