Failed first round of BCG

Hi Bobbiebernard and welcome to the group. Sorry to hear your dad's BCG treatment has failed, but it is not uncommon. Some people have further rounds of BCG or try the alternative Mitomycin treatment. CIS is known for being the most difficult variant of BC to fully remove. Many people here have had bladder removal in these cases and continue to have a full and active life. I am sure others will be along to share experiences. Best wishes.

CIS is very tricky, can easily jump to being incurable, but I'm sure there are some who have had repeated BCG & are OK. The problem is that no-one can say which group you will be in. If your Dad does choose RC, the recovery does take months, but he should regain strength & energy  to be able to pick up his usual lifestyle. He needs to be aware though that there is an impact on sexual function - but as has often been said, you don’t get much sex if you’re dead. I’m female, so it’s a bit different, but I had RC 10 yrs ago & am really fit & well still. 

Hi Bobbiebernard,

My husband had CIS and papillary tumours g3 pTa. After the TURBT and 6 weeks BCG he had got a new papilloma. He was offered more BCG [which we did not then know is often effective] , RC or Mitomycin. Totally horrified at the prospect of RC we went for the Mitomycin. It has been so effective he is now down to 6 monthly checkups. We are so glad, we have already enjoyed another 3 years of " married bliss" to put it delicately, which would probably not have been the case after RC. True some surgeons manage to carry out 'nerve sparing' so everything still works but this is never certain. And the op and recovery take months at best out of an active life, which as he is well over 70 would seem major. Meantime we have been able never to let our daughter and son in law down with child care for our grandson, for which we had moved house 120 miles just before the bc diagnosis. Still have delightful memories of toddler group, lunch club, park playgrounds etc with him until covid, all that would have been seriously compromised by major surgery.

It must be his choice and I fail to understand why so many people who come on here have had only the two choices, more BCG or RC offered them. So personally I would be going back to the consultant to ask about Mitomycin, could it be suitable for him. Another poster on this forum has been told he will be given both BCG and MMC. I will leave it to the people who have had RC to comment on how well he might hope to carry on with his current routine, though I suspect if he had rc and a stoma that weightlifting specifically could be risky. Some are able to have a neo bladder instead. Why not call MacMillan to ask them to send you the info booklets they do?

Best wishes to you, your Dad and all the family

Hi Denby, 

Thanks so much for your reply. Its great to hear that the treatment has worked so well for your husband.

My understanding  of it is that my dad has only been offered BCG and not mitomycin because the new tumour is high grade and likely to be ineffective? Was your husbands new papilloma high grade? Also I have read online that mitomycin is only offered in certain areas of the UK.

To be honest its difficult to know what to do as his consultation explaining that treatment had failed was a 7 minute phone call. In which time its difficult to get a grasp of whats happening never mind make a decision. 

His consultant said that there was a small chance of spread in the meantime, but if he had  RC he will never know if he really needed it. It was hard to tell which one was the best option. 

Are we just delaying the inevitable whilst playing Russian roulette? 

Perhaps a phonecall to his consultant for more information is needed as you said. In the meantime he starts his 2nd round of BCG treatment tomorrow.

Thanks for your help

Hi Teasswill,

Thanks for the reply its great to hear a RC success story. If you dont mind my asking, were your circumstances similar to my dads before you opted for RC?

I guess its just a scary prospect facing major surgery and not knowing if it will drastically change his life. We are aware of the changes to sexual function but being his daughter we havnt talked about it.

I am terrified of the thought of it spreading and becoming incurable while his tries another round of treatment. I guess his case will have been discussed at an MDT and they have decided the risk is low? Otherwise why offer it? Its hard to know what to do.

I just want him to be alive, but also happy. 

Thanks again for your reply

I was TaG3, but for various reasons chose RC as a prophylactic measure, albeit a drastic one. With an all clear path report post op, I am deemed most likely cured & have peace of mind. I still have annual checkups, as much as anything to monitor my neobladder. I starting exercising again 6 weeks post op but very gently - took nearly a year before getting back to full exercising capability. Even with a stoma, weight training should be possible with a support belt. Being very fit pre-op will help with recovery. 

I did have a friend who tried BCG but had CIS recurrence muscle invasive. Sadly for her, it continued to progress even after starting chemo and became incurable within months. Personally I think with CIS you are playing Russian roulette, but I do understand it is a hard choice. Your dad really needs to think about his priorities, weigh up the pros & cons and avoid being forced into a rush decision. Even a few days can give time to mull it over. Then, even at the last minute you can change your mind. 

I have just finished 6 weeks of BCG and am waiting for cystoscopy at the end of September. 

A friend put me in touch with her colleague who has had a radical cystoscopy. This chap is a very active, fit, serving police officer. I can't say that his life is entirely unchanged but he was very positive about being able to carry on with his activities both at work and home.

Your dad may have to make adjustments but I'm sure that he will be determined and resourceful enough to be able to continue those things that he enjoys. Good luck to you both.