Results, so hard to make the decision

Hi,This is a tough decision.Perhaps the situation will become clearer once you have spoken to the surgeon.Even if you go for the BCG first it would be useful to know what the surgeon thinks and to get more information.It is a big surgery and recovery takes several months.It is possible to lead a full life after cystectomy though.I wrote down questions before I saw the surgeon.My sister came with me and she had some questions too.We left with a much better understanding of cystectomy.I don’t envy you,it must be so hard to have to make a choice.My prognosis was grim and the cancer advanced T3b G3.I’m still here 3 years later and manage well with a stoma.Best wishes Jane 

I can only give you my personal perspective, having been TaG3 & chosen surgery after many sleepless nights and much thought. I have never regretted my choice. There is no best option, you have to weigh up potential & known side effects, pros & cons of each option, all in relation to your personal circumstances. Whatever you decide, you need to be comfortable that it is the right course of action for you. 

You need to be aware that it is a gamble going for BCG. There is a risk that a recurrence could be muscle invasive, entailing chemo plus surgery, or radiotherapy plus chemo and reduced prospects for cure. There is also the risk, however small, that the cancer can progress so quickly that it becomes incurable. My surgeon told me that with BCG, about 70% people will still be clear after BCG, but a 50% likelihood of still needing surgery at a later date.

Am happy to answer any questions about the surgery & recovery. I was 57 when I had my op, 11 years ago. Best wishes making your decision.

Yes Jane it is difficult and I know after considerable time you healed and have managed. You did not seem to have much choice with your prognosis but it seems you are doing really well, which is good to hear. It's like part of you knows the radical one could be the life saver but there is a bit of hope with the other option, that's why it's so difficult. Russian roulette. 

Thank you Teasswill, it's good to know you made the right decision and 11 years later you are here and managing well with no regrets and yes it seems if I go with the BCG option maybe I am putting myself more at risk, sometimes I wonder why they offer it as then you are having to choose, trying to weight it all up yourself. I am sure they would say taking everything away takes away that risk. So much to think about. My consultant didn't explain enough to me I feel. I hope the larger hospital will provide more. Constant headache coming on thinking about it all. 

It's NICE guidelines. BCG will cure in some cases, or at least defer the need for more aggressive treatment - so quite reasonable for patients to have the choice. Some will not be suitable for one or the other for various reasons & won't have a choice. Perhaps  a good question to ask is what the consultant would do, or advise a close relative. You might not get an answer, but you might get more reasoning to help make a choice.

Good evening Bumblebee 49, how are you today?  Today I’ve been for my 3 monthly cystoscopy check having had 15 BCG treatments since February 2021. The outcome is clear and I’ve had no significant problems in that time. The programme is for  further 3 monthly checks and continuing maintenance BCG treatment. Bladder removal  was mentioned as a possibility at the initial diagnosis but has not been discussed during the BCG regime . My initial diagnosis was in September 2020 . Best wishes, J.

Thanks Jane x

Well that sounds very positive, I think they are concerned as its grade 3 which is aggressive and has recuured quite quickly since the first Turbt in July. I hope if I am given the opportunity to try the BGC, it works as well as it has for you.

Thanks for taking the time to respond WallyB.

That's a good point Teasswill, I obviously want to do the right thing, like all of us, we just want to live and continue our lives. Thanks again for responding. 

I am sure if I have to have surgery I will need to ask you loads.