Muscle-invasive bladder cancer

Hi EssexBoy and welcome to this supportive group. I had the same choice to make and was given the six weeks of chemo to make up my mind. I met an  oncologist who advocated bladder preservation saying there is no evidence to prove one method has a better long term out come than the other. Bear in mind that urologists are generally surgeons and prefer their own methods. You should see an oncologist who may give you another option. I chose the radiotherapy route and so far I am over ten years down the line. Others here have chosen the cystectomy route and will be able to answer any questions regarding that. Lots of varying experiences here and always someone with an answer or a shoulder to lean on. Find out as much as you can and decide what is the best way to go for you. We cannot recommend one way or the other but can use our own experiences to help. Best wishes.

Thanks, Riley. That's helped a lot

75 male here. My pink pee led to a flexible cystoscopy and CT scan followed by a bladder cancer diagnosis mid-2017 (7cm lesion) and 2 weeks of medium dose radiotherapy. Then, in 2018, two TURBTs. Co-morbidities (heart murmur) made chemo and radical surgery too risky - the consultants' opinion, not necessarily mine. My care has thus been palliative i.e. symptoms are treated to maintain quality of life for as long as possible. I've been told that a further TURBT is an option, or consideration for radical surgery if it is thought that I'm fit enough for major surgery but with a higher risk than normal. I'm still here in 2025, albeit with bouts of pink pee many times per year. I live independently, drive and generally get on with my retirement reasonably happily.

rily has given good advice regarding the sometimes differing views of hospital departments. Most hospitals have multi-discipline meetings to discuss individual cases so that they can reach a consensus across departments and present a recommendation to you, the patient. Guided by this advice, you choose the way forward if there are options. Try to base your decisions on the advice given by your medical team rather than Google. The experience base on here is useful but shows that a wide range of paths are possible even with similar basic symptoms. We do try to be universally supportive as cancer can hammer one's mental stability at times. Post whenever you feel the need. Best wishes.

Ray    

Thanks, Ray. 

Hi Essex Boy,

I had muscle-invasive bladder cancer and was told after TURBT that they couldn't get it all out so was referred to the robotic surgeons and oncology.

Because in 1974 my mother had also had bladder cancer and died soon after it was discovered as she presented too late, I wanted my bladder removed. So I had 4 cycles of GemCis chemo, 2 weeks on, 1 off, in autumn 2022. That was tough at times and by the end I was quite weak. 

My operation was scheduled for early January 2023 but in late November after my pre-op CT scan they found I had a clot in my lung so cancelled it while I had blood thinning injections. Fortunately there were no other clots eg in my legs, but the cancer was still growing. They mentioned radiotherapy if they weren't able to operate but given my history I just wanted the cancer out if at all possible.  Fortunately, they managed to get me into theatre in mid January and I came through the op well, aged 70.

Since then I have a stoma and life is fine. I am under review by the oncologist and the surgeons although the latter will refer me back to general Urology soon (and would normally have done so by now) and reviews will become 6 monthly for years 3 -5.

There were side-effects from the treatment eg I had some allergic reactions to chemo  and developed atrial fibrillation. Also I only managed 3 sessions out of a potential 12 of post-op immunotherapy because I developed peripheral neuropathy. They damped that down with steroids.

I am fit,  but not as fit as I was pre op as it hasn't been possible to train as hard as I used to but am working on it. I stopped using resistance machines at the gym as they picked up some vascular problems during one of my CT scans (though they may have nothing to do with my illness and treatment). 

I'm pleased with my treatment. My doctors have discussed and explained everything and referred me out to other specialisms as needed. And so far I have had 2 years of good quality life post op and am hoping for many more.

Good luck with your choices.

Latestart

Hi Latestart. That's some journey you've been on! Whilst it's early days for me, as my cancer has not extended beyond the bladder, I'm told that the outlook looks ok (Drs are always careful with their words!). D2 today (out of six scheduled), then a break for 2 weeks before the next session. Many thanks for the feedback, and best of luck 

Morning Essex boy, like Rily I chose the chemotherapy and radiotherapy route rather than bladder removal back in 2018. After two superficial recurrences and 15 sessions of BCG I am clear. I feel well, play golf 4/5 times and week and live a full life. Weigh up the options and I am sure you will chose the path suitable for you. Good luck Garviv

Hi EssexBoy,Welcome to this friendly group.I had to have bladder removal as the cancer was causing an obstruction and I faced an early death. I had the surgery just in time.That was over 5 years ago and I’m cancer free and living well with a stoma.Best wishes for your chemotherapy and your choice.Jane 

Thanks, Jane, much appreciated. 

Hello,

Please excuse me if I am in the wrong area as this is my first post. I had a TOE around November 2024 to confirm and assess the severe regurgitation in my Mitral Valve. During the procedure a Diverticulum on my bladder was noted, I was sent to a Urologist who then, after a CT and MRI confirmed it was a tumour.

A Cystoscopy was carried out, but only part of the tumour was able to be removed. The Urologist came to see me after the procedure and we spoke about the best way forward from there. He recommended that the best way forward in his opinion would be to remove the entire bladder along with the prostate and local nymph nodes because the cancer stage is at T3.

I agreed to his advice and received an operation date of 8th April. I have read up on various websites and now realise how major this operation is, and what to expect during the recovery phase afterwards. I feel quite calm about the whole situation, which I hope will last, but would really appreciate any replies from anybody who has already gone through this particular process and their recovery.

My apologises for my long winded post.

Best regards,

Mazoka.