Bcg

Hi Nelbell,

I am sorry that you haven’t received a reply yet, most unlike this group and so here is something to keep you going. I am certain you will hear from others soon.

I am the devoted husband to ‘Wonderwife’ who was diagnosed with pTa Grade 3 bladder cancer on the day following her fathers funeral and at the same age her mother was when she died from bladder cancer. Her mother’s brother also dies from this cancer and we were extremely worried, despite reassurances that there was no genetic or hereditary connection!

We decided to accept an offer of BCG treatment, as a first line of attack, rather that a Radical Cystectomy. Our reasoning was that BCG could save the bladder and at the same time provide regular cystoscopies to check for recurrences, allowing more radical treatment to take place before it became unmanageable. A win win opportunity, in our view. You will hear from others here who took a different view; there is only what is right for you and we all have different perspectives and circumstances (we are all right).

So, treatment with BCG ended in December 2021 after a full three year programme. There were no recurrences (lucky us) but some here had several and I’m sure you will hear from them too. ‘Wonderwife’ is now being reviewed every six months by cystoscopy examination and urine sampling, fingers crossed. Either way, any recurrence will be detected early and should offer options for treatment.

Now, as to the nub of your question. BCG infusions are a ten minute job and for us were performed without waiting around at the local hospital. Appointments were made by her specialist cancer nurse, who was always on time and who performed most of her infusions. 15 mins in and out and then home. No liquids for a while before the treatment and no peeing for 2 hours after, followed by as much water as you can get inside you to flush everything clean. Water seems to be the key generally and we now both drink more of the stuff than we used to.

On the day of the treatment ‘Wonderwife’ started to feel a little chilly with a headache and flu like 3-4 hours after treatment. Peeing was a little uncomfortable, sometimes with a little blood and generally a bit like people feel with a Urinary Tract Infection. About 24 hours after treatment she was feeling much better and by 36 hours pretty much back to normal and giving me her usual micro management.

BCG is tolerated differently and some people have a very different experience. However, there are alternatives and I know you will hear about that too from others here.

It is all very daunting and I vividly recall sobbing uncontrollably in the shower at the outset, worried, frightened and very scared. But, you will find a way, your way, of dealing with this and you will be supported here, find useful information here and should never feel hesitant about asking anything you like here. You will not judged, we have all experienced highs and lows, sharing is a fabulous way of supporting each other in difficult times.

Hope this helps.

Buggrit.

Hi Nelbell. Sorry your post slipped through the net, but a good comprehensive answer from Buggrit. Don't overthink the follow up TURBT. It is fairly common practice just as a mopping up operation to make sure they missed nothing. The BCG is designed at preventing recurrences as well as clearing any remaining rogue cells. I hope all goes well. Best wishes.

Hi Buggrit , thank you so much for replying and putting my mind at ease a little , I am so pleased to hear your wife is doing well after so much loss and worry in her life , it must have come as an awful shock to you when she was diagnosed and you are truly a wonderful support to her , you have answered many of my questions and I  understand people react differently to treatments so hopefully I will cope . Once again thank you for helping me understand what to expect . Best wishes Nelbell 

Thank you rily for your reply and clearing up my concern about the TURBT , at least I know what to expect now best wishes Nelbell 

Good morning Nelbell and welcome . You’ve described your journey so far with TURBT and now a follow up with BCG next on the programme. Lots of us here have followed that same journey without too many difficulties. You ask about really bad side effects of BCG . From my experience if you relax and think nice thoughts the procedure is quite tolerable and unless you particularly want really bad side effects you don’t need to go looking for them and I can’t think of any at the moment. I’ve had 4 TURBT and 12 BCG and last Fridays Flexi cystoscopy was clear 18 months through the journey. Best wishes, John.

Hi Wallyb thank you for your reply and thank you for telling me of your own experience which  now gives me a bit more confidence about going into the treatment knowing there is light at the end of the tunnel so once again thank you very much best wishes Nelbell 

Hi,

Totally agree with Buggrit on the side effects after treatment.  I was diagnosed in April 2019, starting BCG treatment in May 2019, and have just completed the 3 years timeframe.  At no point did I ever feel that it was becoming to much to handle..  I did not require the TURBT operation.  

The first few treatments I was able to get back to work the following morning,  Later did produce more blood clots which wasnt a pleasant experience.  After the 24 to 48 hour recovery,  I was determined to get life back to normal asap, and so continued with my running and cycling activities.

Hope this helps.

Your posts have been so helpful to me about BCG. My husband has had persistent, recurrent, TCC multi focal bladder tumours, grade 1 over the last 3 years, treated through diathermy. We have now found out they are a grade 2 and he will start BCG next week. Unfortunately he reacted very badly to Myomycin C in the past, so he is approaching BCG with trepidation. He is only having 12 treatments in total, so can you please tell me what the 3 year program is? Also has anyone else suffered these constant, recurrent tumours? Thankfully they are still inside the bladder but we are getting increasing anxious about them constantly coming back in what they refer to as a ‘ field effect’. I’m feeling so anxious and worried about him!

I wonder if your husband's team has given any thought to what environmental and or dietary/lifestyle factors might possibly influence this situation? Given my husband never smoked, drank moderately (now no alcohol), and we eat as much organic as possible, we wondered [well I did anyway!] what it might be. He has had to have a cocktail of anti-epileptic meds since an early age. I once tried the Gardeners' Question Time idea of 'pee-cycling' but I stopped when I noticed leaves on the tomato plants growing twisted, abnormal. This effect did not occur with my drug-free output. I suggested to the cancer Dr that it could have been the years of the drug residues which after all go out much through the bladder. He thought it a plausible theory. If you can identify anything worth improving on, it may help to allay your anxiety.

best wishes, 

Denby

Hi Denny,

My husband is also a non- smoker and eats very well. He is also a very fit 65 year old who does daily exercise. Although he is an academic now, years ago he spent 10 years as a motor mechanic exposed to diesel etc, so these environmental toxins could have been a factor, but that was more than 30 years ago. so it is hard to understand. 

Best wishes

Caxton