Getting a bit fed up with waiting...

Hi Rob

I received after my first TURBT a finding of T1G3 with squamous differentiation. After second TURBT result came back as Ta G3. Consultant at this Trust advised best to have the bladder out, or I could risk BCG. Initially went for BCG to retain the bladder then after second TURBT changed my mind and opted for RC. 

I was then referred to the surgeon at another Trust who advised that BCG would be best in my case with the option for RC if it didn't work out. Went down the BCG path and haven't looked back. Total BCG received was 15 instillations which is the protocol at the Trust that now look after me. 

Didn't have much trust in the initial consultant who appeared more set up for dealing with tears rather than addressing the issue at hand. The surgeon in the second Trust appeared quite shocked that I had been left with no treatment apart from the TURBT's and immediately set up BCG for me, starting 1 week after seeing him. 

So far all clear, and have a second blue light cystoscopy due in the next few weeks just to make sure all is good.

Hope you come to a decision that works for you. Whatever you decide, it will be the right decision for where you are at the moment, but don't be afraid to change tack if you later decide otherwise.

Thanks very much for your reply.  I'm pretty sure I'll be opting for BCG and then seeing how it goes.  Original diagnosois was Ta G3 and I've not heard anything to change that - although I guess they could on Wednesday.

I'll certainly ask for pros and cons and check the risk factors involved, but I'm oppossed to having my bladder removed at the moment because I'm still very active and have a young outlook on the world.  Seems like a big step when Ihaven'ty tryed other options first.

Rob

Good luck with your treatment. And of course you need to do what fits best with your life and outlook. Just wanted to say that bladder removal needn't cramp your style at all. People swim the channel and climb mountains while using stoma bags. There are people of all ages from childhood up using them. 

I am steadily regaining my previous fitness. What has held me back has been treatment side-effects such as atrial fibrillation, which may in any case have been covid-related and peripheral neuropathy from the immunotherapy.

Even so, I walk daily around a very hilly park at speed, however I feel,  ànd steroids saw off the worst of the neuropathy. I'm already a lot fitter than many of my contemporaries, again, and shall keep working on it.

Age is only a number, one's attitude to life isn't necessarily affected by how old one is. Though if 'young outlook' is code for sex life, as a woman I can't comment as that isn't affected for us by bladder removal.

All the best,

Latestart

Hi Latestart,

Cystectomy can affect a woman’s sex life. My surgeon did warn about this before the op. I had to have an internal examination at hospital recently and it was incredibly painful which it wasn’t before the surgery.

Jane x

Oh I see, mine kept going on about preserving things and left uterus & everything in place and added some stitches to support the pelvic floor and guard against prolapse (which was threatening at time of the op). He said they do it that way even for older women like me although I'd have liked it all out in case of future metastasis. 

Latestart x

That’s interesting.I presume the effect on a physical relationship will depend on what has been removed or altered.Jane x

Ha, you made me laugh.  No code intended.  I just meant exactly what you said "Age is only a number, one's attitude to life isn't necessarily affected by how old one is."

Although I have Ulcerative Colitis I a pretty fit guy for my age. Have two sons both young men, early twenties, so spend a lot of time keeping up with them and their never ending stream of modernisms.

I appreciate the references to stoma bags and living full lives and understand that it might not necessarily hold a person back.  I'm just keeping the operation in my back pocket for later.  Still, I'll listen to the advice the consultant and s nurses give before making my final decision.

Off to tell my wife about your code referrence - she'll probably beat me off with a stick.

Rob

It absolutely does Jane, especially if the vagina is shortened during the surgery if it’s accompanied by a radical hysterectomy for example. I’m sorry you had a painful experience with the internal examination recently…I suppose I should be thankful I never have to go through one of those again! 

Sarah xx

Hi Sarah,I had both xx

It’s very understandable that things are different now.

Sarah xx