Starting BCG this week

8 years 5 months ago #49830 by Fowlair
Replied by Fowlair on topic Starting BCG this week
Thanks Sara Anne. I am in Jacksonville Fl and being treated at Mayo Clinic, which I believe is probably one of the best treatment centers in the US. Although I wouldn't be averse to a second opinion.

I know they just opened an MD Anderson treatment center affiliated with a local hospital here also, so that's a possibility. But they are very new to the area. Like only opened 2 weeks ago. It makes me wonder if they are up to speed yet.

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8 years 5 months ago #49829 by sara.anne
Replied by sara.anne on topic Starting BCG this week
Hi Mary. So sorry to hear that the tumors keep coming back. This is, however, a nasty secret about bladder cancer. It DOES tend to return.

BCG is a totally different substance than Mitomycin, but no one known how any individual may react to it.

I do have another suggestion for you. Please remember that we are not doctors, just patients and caregivers who have "been around the block before." However, if the cancer keeps returning, that should be a real warning sign to you. In your place, I would get a second opinion at a center that sees a LOT of bladder cancer cases. BCG may be the best option, but it may not be. On our Home page there is a link to the Treatment Center Finder
bladdercancersupport.org/bladder-cancer-help/resources/treatment-center-finder
or let us know where you are located and maybe someone will have a good suggestion for you. You really do NOT want to continue having this return.

Sara Anne

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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8 years 6 months ago #49821 by Fowlair
Starting BCG this week was created by Fowlair
Well, I haven't been here for a very long time, but it serms I still need your help and advice.

I was diagnosed with low grade non-invasive bc in 2009. I have had numerous TURBTs since then, and one installation of MMC back in 2012. Recurrences about every 6-9 months. Longest time between recurrences was 1 yr after MMC. Now it seems to be recurring after only 3-4 months. So dr suggested BCG to lengthen time between.

I've read most of what I could find here. Appreciate all the encouraging words. My concern is I had a horrible experience with the MMC. Severe burning, cramping, burning w/ urination, lots of pain -all lasting for about 2 weeks. Now I am afraid it will be just ad bad with the BCG.

Any advice or comparisons between the two types of therapies?

Thanks,

Mary

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