T1 G3

HelloTurtle49 and welcome to this august club that none of us wanted to join. Being diagnosed with cancer is very scary and increasingly common. You face a similar decision to that we have all had to make but be assured that many of us are content with our choices as no doubt you will read here later - and we are still here.

Patients seem to fall into three categories - firstly, those who will do anything to survive; secondly, those who assess the risks of all treatment options then choose what suits them best; and thirdly, those who refuse treatment and allow nature to take its course. I was G3 T2 and thought I could get away with chemo and radiotherapy and preserve my bladder until the cancer returned then have the radical cystectomy. I went for a second opinion at the Royal Marsden where they favoured RT over RC at the time but it was confirmed that RC was the best option for me. The medical staff at all levels recommended RC as my best chance of survival.

So I had 3 months of chemo then surgery to remove my bladder, prostate and pelvic lymphs. I opted for a conduit and stoma with a 'bag for life' and, 18 months on, I don't regret it at all. I am at least as fit as before and, with a couple of exceptions, can do all I did before.

Your dilemma will be compounded by Rily who opted for RT and is doing really well after several years, and Teasswill who also had the RC and a neobladder, and is also years down the track. What we all have in common is that we chose what was right for us and we have all survived. There is no right or wrong answer, only one that suits you and the level of risk you are willing to take.

One thing IS certain - whatever you need to know, one of the forumites here will have an answer so come back and ask whatever you need to know. I wish you good fortune.

CB

Hi Turtle49, a hard decision to make, my thinking about it was to try BCG for the first 6 then a check up if all was well to carry on if not go for RC. I had 15 BCGs then there was a world shortage of it so had to stop, since then I’ve only had check ups and been clear. I’m under  no illusion it won’t come back but with check every 6 months I feel fairly safe fingers crossed for my 14th flexi next month. I’m a lot older than you though so I guess you have to take that into account as well.

Good luck which ever way you go.

Sue X

I was 56 when I had this awful decision to make. Spent may hours & sleepless nights wondering what if.....  My worry was that a recurrence could be muscle invasive, meaning chemo as well as surgery & worse prospects. Various factors influenced my decision but I have no regrets having opted for immediate surgery. It was a huge step but I was fortunate in having no complications & with clear post op path report had peace of mind that I'm most likely cured.

All you can do is weigh up the pros & cons of each course of action & how they relate to your priorities. Am happy to answer any questions about surgery.

Good wishes making your choice.

Thanks to you all for your replies...they found further cancer (CIS) in my urethra ...I am now having surgery in about 4-5 weeks ...my decision now is either a bag or a reconstruction catheterizable continent pouch ...I can't have the neobladder. Has anyone on here had the reconstruction I mentioned?

That sounds like the Mitrofanoff - I think there is a dedicated website for this as it is sometimes done for reasons other than cancer.

I believe there is a similar 'training' period but people are usually very happy with it. In the US they do a similar procedure called Indiana Pouch & many are happy with that. You have to empty approx every 4 hours, day & night via a catheter, but I understand the procedure is pretty straightforward. ( I have to self cath my neo so am familiar with that!)

Apparently I will empty it by catheter through my bellybutton. ..I suppose getting up in the night to empty is no different from my normal bladder lol

Yes, they usually use the appendix as a conduit from the internal pouch (made out of intestine) to link to an aperture made in the navel (so not obviously visible). Isn't the body amazingly versatile?

I thought getting up at night would not be a problem, but it's the aspect I found hardest. Initially because I could only go 2 - 3 hrs at night & was so tired anyway after the op, also having to measure output. Later, because it's a different signal for fullness that the body has to learn. I hate waking to an alarm & rely on sensation, so quite often I leak a bit.

Nowdays it's not so bad, I don't have to be quite so fully awake - can even self cath in the dark. I have pondered about having a container by the bed to avoid getting up.....

It seems I will have alot to get used to..I guess an advantage to having a bag is that you can just attach it to a night bag and not have to get up.

I am still thinking I will go for reconstruction though...my husband said I will be like the bionic woman lol ..not sure what my special powers will be though!

With a Mitrofanoff you'll be able to pee standing up - lots of advantages there!

Yes! I hadn't thought of that ..could come in handy.