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Advice about Bcg

23 Oct 2020 22:01

This is my first time on this site my husband was diagnosed in March 2019 with bladder cancer he has had 12 rounds of treatment he has had 3 flexis done but for 6 weeks now he is in really unbearable pain he has had 3lots of antibiotics he is on some more from the hospital also he is living on pain killer nothing helping him he went a week ago for a flexi cystoscope the doctor told him that the bladder wall looks like it is on fire it is that red and swollen at the moment the doctor had to stop so he is going back in 2weeks he drinks water like it is his best friend he can not lift any thing heavy and he is in that much pain pastingurine and his urine is a dark brown colour with bits in he is on the toilet every 30mins all day and night  also he has no control over his bladder pleasecan any one give advice 

Advice about Bcg

24 Oct 2020 04:29 in response to Lenny12

Hi Lenny12. Welcome to the forum.

I am so sorry to read of your husband's situation.

We don't have many bladder cancer sufferers and carers on this particular forum. 

However, Macmillan cancer do have some bladder cancer forums (click here), and there is a Facebook group (click here).  I think it's possible that someone on one of those groups would be able to help you.

Advice about Bcg

3 Nov 2020 18:44 in response to Lenny12


Although I am on here for other reasons (husbands &oesophageal cancer) I have some experience with bladder cancer.

My old Nana was diagnosed with this at 80 years old. She was treated with BCG and some kind of 'abilation'. I know she hated it and during treatment caused her bladder to get extremely cross, red n inflamed. I know she was pee'ing every 10 mins or so to start, but that improved. I think she was on low grade antibiotics throughout treatment. Her biggest gripe was having to go onto de caffeinated tea!!. She never gave up her heavy tobacco use though(:

Anyway, to cut the story short , it worked, she was checked for 5 yrs with no reoccurrence in the bladder.

She checked out 4 yrs ago at the grand old age of 96 yr old, nothing to do with the bladder.

If things are difficult for you guys at the mo, go back to the Dr's , ask for a review, tell them the amount of pain he is in, have they excluded a plain old urine infection- which are incredibly horrible. Of course stress and anxiety kinda goes hand in hand with any cancer diagnosis and chronic pain and makes a difficult time 100% worse.something also to mention and discuss with the docs.

good luck