Husband about to start BCG

Hi Christinann, I think we are in the same boat, my husband has been diagnosed with stage 3 bladder cancer, he starts BCG next Friday, not sure how it will go, have read about side effects and to be honest they vary considerably, just got to hope all goes ok.

Hi all I was diagnosed high grade bladder cancer Dec 2020 .. had turbt and had 6bcg treatments over 6 week period.. I then had set of 3 in about 3 months after first 6 ..so far had total of 15 bcg treatments and a few flexible cystoscopys (camera in bladder) the treatment caused me pain when urinating for a few hours after treatment but nothing I couldn't handle ..I took painkillers as soon as I had the treatment and drank lots and lots of water ... so far I can thankfully say I have been clear ..I am nearly 67 years old and I too was adamant I would not have my bladder removed but as my journey has gone on I find myself thinking what will be will be and just take life one day at a time ...I hope all will go well with your husband's treatment this forum will give you wonderful advice and support best wishes Tina x

Hi Tina, for painkillers, did you take paracetamol and ibuprofen? 

I took paracetamol.. if I had a bad time I took the stronger cocodamol.. some people sail through the treatment..I found as the weeks went on the treatment got harder but if I had to have it again I'd just get on with it .. try to get out and about if possible xx go about your lives happily I know it can be so hard but constantly worrying really doesnt change anything.. my husband was really worried and stressed about me it was making him feel ill ...I told him we are spoiling our lives and not to dwell on things we can't change .. we are getting older now and can expect to have ailments and illnesses.. I go for my treatments and check ups and hopefully things will keep at bay ... sorry to go on but I know how anxious you can be when we are told we have cancer xx good luck both keep positive xx

Christinann, Reading your post is like reading my medical history I went through exactly the same routine. Personally, I had no ill effects from the BCG.

I now am fitted with a Catheter, sounds drastic but after a few weeks, it all becomes second nature. I am sure nobody knows until I tell them.

I was sent to Norfolk and Norwich hospital to look into removing the bladder. A very long and complicated operation. Fortunately, because of a weak heart and dodgy lungs, they would not do the op.

My diagnosis is for Muscle-Invasive and advanced bladder cancer.I have been living with this for 12 years. And I am 85 years old. 

I wish him all the best and do not worry. If you have no control over it why worry

Bob, we are under the N&N hospital and they have been brilliant, there has been a lot of support and you feel patient care is important.

Hi Christinann, my husband is also adamant to keep his bladder. For him nearly 5 years ago the bcg did not stop a prompt recurrence. Being unaware then before joining this most helpful forum, that this is quite usual and the bcg can be just like 'repeat weed-killer on a path,' offered more BCG, bladder removal or try Mitomycin, he opted for the Mitomycin. It was impossible to retain it for as long as instructed but it has still worked insofar as no recurrences and down to 6 monthly checks. So that is for most people another option that can be tried, very glad he did.

Best wishes, 

Denby

Yes, I fully agree. I used to work for the NHS before I retired I worked in several hospitals, but none as good as the N&N

Hi Christinann, welcome to the group where you will always find someone to help and support you. I was diagnosed in March this year with a mid to high grade tumour also removed by TUTBT with a second one a few weeks later , I am  now on my first installation of Bcg ( week 5 approaching on Monday) so far I have been fine , a little tired next day and a bit achy but nothing I would say was bad but we are all different and our bodies react in different ways.I don’t know if things get worse as the treatment progresses but hopefully I will cope . I’m sure your husband will be worried as we all are when something like this faces us but I’m sure he will cope once he has had his first dose.I just tell myself it’s better than the alternative, best wishes to you both x(I’m also 68 by the way ) Nelbell 

Hi Christinann, I am in the same position. Having been diagnosed with a High Grade non-muscle invasive tumour in June, I have had my two TURBTs and am due to start my BCG on Thursday.  I am being treated at my local hospital but went for a second opinion at a specialist centre and it was so reassuring to get the same advice from both professionals ie that BCG is the right way to go.  I am not yet 50, so losing my bladder at such a young age was not attractive to me, so I can relate to your husband, but ultimately if it becomes necessary then I will deal with that at the time.  From what I have read, the side effects can be unpleasant and in some cases extreme but there are lots of positive stories on here about how people have coped really well, which is so reassuring.  Best of luck to your husband.