New here, looking for support for husband with BC

Elle..not sure where you are located but its always a good idea to get a second opinion whenever any Cancer is indicated. You may have a top notch uro but bladder cancer specialists a far and few between. If your husband does not want to actually see anyone or is resisting that second opinion you can do it by sending the slides and copies of the CT scans and other written materials to a high ranked institution like Johns Hopkins for a second opinion on the pathology. Here is the link if you're not already going there! There's a number to call and they will inform you what all you need.
pathology.jhu.edu/department/services/consults/urologic.cfm

Statistics from major cancer centers find quite a margin of error and its just a smart thing to do if not to just confirm your diagnosis.
I noticed when i was diagnosed with breast cancer last December that it was manditory that the slides be sent to the top pathologist in the country for a second opinion and also samples were sent to California for Oncotype which bladder cancer does not have yet.
You may have a top uro but be sure his specialty is indeed bladder cancer.
pat

Thanks, Mike. You are correct, it is mitomycin. I could not remember the name but remembered it when I saw it here.

He's had one slightly invasive tumor (a few years ago) and I believe it was shortly afterward that they changed his treatment plan and swapped the mitomycin for the BCG. Only small, low grade tumors since then.

I agree with you about the second opinion. Now that I've decided I need to get more proactive about his health (we've only been married for three years and he's had these problems long before then), I'm going to work to convince him to do that. Even though the current uro is highly respected, a second opinion is never a bad thing to have.

I guess with this kind of cancer, this cycle is pretty common, then? That's sort of what I've been led to believe but it's nice to hear it from others who have been there.

Mitomycin is probably what he is getting now. You can get a lot of recurrences with this type of cancer and it sounds like the right course of treatment.

BCG is great for CIS but isn't always effective for low grade and it doesn't work for everyone. Mitomycin is the durg of choice for instillation if BCG doesn't do the trick.

It's going to be a pain in the butt on a regular basis because of the cycle but it is probably better than losing the bladder. If it ever becomes high grade or gets below the inner most layer that may be something to consider but for now, it sounds like the right plan.

It wouldn't hurt to get the diagnosis and treatment plan confirmed at a major bladder cancer center. Doesn't mean you leave his current uro, just means you get a 2nd opinion.

Mike

Thanks to all of you! To answer a few questions:

Yes, they are all low grade tumors, thankfully. BCG hasn't been administered for a while, as it's not working for him. They do administer another form of chemo (directly into the bladder) just after the surgery, which seems to be working a bit better.

Recurrences range; it's been a year this past time, and he has surgery scheduled for Monday morning. Sometimes it's 3 or six months, and I believe we had one stretch of something like 18 months. The current tumor was <3 mm in size when the urologist spotted it at the last cystoscopy, so we're staying on top of things. His urologist is considered to be top-notch, and we are actually switching insurance plans in order to remain with him (my insurance coverage would be better but I've been on a different plan.)

Yes, it's life in three month increments and we just try to live our lives normally in-between surgeries and cystoscopies. My husband has come to this site and started to read up, but I'm not sure if he'll get into the interactive thing.

Again, thanks for the support. It means a lot to me.

elle....is he getting BCG treatments at all? You did not mention...just cystoscopy and removal. Are they all Ta or higher?
Maybe a second opinon from UCSF?
PAT

Are these all low grade recurrences?

If high grade, that many recurrences would indicate that it may be time to consider more aggressive treatment (like an RC). If you haven't already, then you may want to talk the the doc about what the trigger point should be for moving from BCG to an RC.

If low grade and they are catching everything in 3 month cycles then that's a different matter. However, if going through BCG and still having so many recurrences, you may want to discuss the point of the BCG. Are the BCG treatment really doing anything?

Mike