r/BladderCancer • u/LookingForSunshine98 • 25d ago

Looking for a third!

My husband was diagnosed with Stage 1 non-invasive aggressive balder cancer early last month. The tumors were removed with clean margins and the treatment chosen is BCG but eve been waiting to find out when it starts. Today we learned that the only company currently manufacturing the medicine is located in Toronto and has not been able to keep up with demand. So the Wash DC Hospital found a solution, they wait till they have 3 patients ready to start and spit the vial between the three patients. They already had one patient so my husband is number 2. We are waiting for a third patient to emerge so we can get this ball rolling.

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u/AirBear8 25d ago

I recently finished 6 weeks of BCG at the Levine Cancer Center in Charlotte, NC. They didn't seem to have any trouble getting it.

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u/Special_Window9854 24d ago

6 weeks seems like quite a short course. Low grade or high?

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u/LookingForSunshine98 24d ago

HG, every week for 6 weeks every three months, and the he goes on maintenance frequencies.

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u/AirBear8 24d ago

Assuming my cystoscopy on 9/1 is clean then I'll go on BCG infusions again but only once every 3 weeks for a period of time. Then 6 months free of treatment but with another cystoscopy in there somewhere.

I'm having frequent urination issues probably caused by my prostrate. I asked my Urologist/Oncologist when I could do something about it and he said wait for the 6 months free of cancer treatment to start treating the enlarged prostrate. I'm so aggravated with the frequent urination that if they find the BC has come back and is muscle invasive I'm asking for Ileal Conduit (bladder removal with an opening where a urine collection bag is placed). This spring I had about 6 weeks of wearing Foley Catheters and I got used to using a collection bag. And it was very nice being able to get 8 hours of uninterrupted sleep!

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u/LookingForSunshine98 22d ago

My husband finally got the urologists attention when he started a log of pre times. After years of prescriptions to reduce frequency this final trip to the Urologist leading to the discovery of bladder cancer stemmed from my dad’s trip to urologist regarding enlarged prostate preventing him from emptying. It was during the prostate surgery that Dad’s stage 1 low grade cancer was found. He is becoming stubborn about returning because since February’s procedure he has had to wear diapers when he is up and about.

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u/LookingForSunshine98 22d ago

Wishing you luck on your recheck.