Final Diagnosis and Treatment Choices....

Hi catlady101 and welcome to the group. We have members here with experience of the different treatments and hopefully they will be along to share experiences. The mixture of BCG and Mitomycin (if I am reading your post right) sounds new and I don't think has come up here before. I went a different way, so no personal experience. Best wishes.

Hi, thanks for the reply!  Yes it is new and a trial, so not guaranteed to get that mix, may be BCG alone..  Hope your journey is going OK. x

Hi Catlady101. Other than the trial, there should be someone here who can answer any specific questions on the regular treatments, whichever one they choose for you. I am doing OK, thanks. Over nine years for me now. So far so good. Best wishes.

Well that's a comfort to me from the off!  Thank you!

Hi catlady101,Welcome to this supportive group.I hope you find it friendly and helpful.There Is a wide range of experience here.Best wishes Jane 

Hi catlady101, I don’t know if this is the trial you mean but it’s interesting reading, it’s sponsor is University of Sydney, clinical trials NCT number is NCT 029488543, details are on clinical trials.gov and it may help with your decision, the Uk clinical trials are located at Nottingham city hospital.  
Jean.

Interesting trial option. All I would caution to consider is that a recurrence can be muscle invasive or worse, meaning chemo plus surgery, or chemo plus radiotherapy, with reduced prospects of cure, or worst case scenario, already spread and incurable. Might be a low risk, but it is a gamble you take.

I was TaG3 & chose surgery, but I everyone has their own personal circumstances & preferences to influence decision making. There is no right answer! Very best wishes whichever you choose. 

As Teasswill says it is personal choice; you need to take all your particular circumstances into account.

My husband had exactly the same G3 PTa as you and CIS and was offered "3 equal choices - more BCG, cystectomy or Mitomycin" when a recurrence had to be TURBT'd at the 6 weeks after 6 BCG check. He is very anti losing all male function and went with the Mitomycin. For him it has given him 5 recurrence free years so far and he does not worry in the least, just goes for his checks when summoned. 

In the world of bladder cancer a year is often not long, so if you go for the trial and do have recurrences hopefully they would not be too severe though there's always the case that proves this wrong I suppose.  My personal take is they would not have invited you on the trial unless they a] considered it would be suitable for you and b] considered it safe.

It seems you would get both of two treatments that most people only get one at a time. So the only concern I'd have in your shoes is any possibility of excessive side effects. Since these vary wildly between different people on each of the two, I'd be happy to be a guinea pig for finding out whether the two together cause more or even less trouble for me. 

I speak as having been computer randomised to inject myself daily with a bone hormone for two years, to see if it will help children who share my 1 in 15,000 genetic issue. [The alternative was no treatment]. Results delayed by covid so not in yet.

Hope this is some help.

Denby

Hi Jean - thank you.  That's right, my consultant is heavily involved in this trial so we've talked it through and I've researched.  Obviously I could be randomised to get BCG only.  One of my questions on Tuesday is if that's the case, would I then have a further year of BCG treatment as usually that is 2 years long.

Thank you @Teasswill this is one of our cons for the trial, there are a list for both - thank you for sharing your experience, this is a consideration for us and also something that our consultant flagged up.  I know, no right answer! xx