Dilemma

Hi Amelia 55,It is a difficult decision.Unfortunately bladder cancer has a high recurrence rate.Cystectomy offers a good chance of recovery although the cancer can reappear in other places.I think you will need to weigh up whether you can manage the stent changes and regular cystoscopies you will need if you don’t have a cystectomy.Plus any other treatment chemotherapy or radiotherapy.With cystectomy you will either have to manage a neo bladder or an Ileal conduit or stoma.Both of these are manageable and you will be given guidance on what to do.I had to have a cystectomy as I had a rarer type of cancer that had already invaded the muscle.I have a stoma and manage very well with it.I was back to caring full time for my mother 8 mths after surgery and could return to gardening which I enjoyed.Cystectomy is a big operation but you can get back to normal activity.You just have to be prepared for the ups and downs of recovery.I found it much harder emotionally than I imagined but I was recovering during the pandemic.Having had over 30 years of constant pain from bladder disease and then cancer I don’t miss my bladder at all.I think if you were to opt for the cystectomy it would probably be better to do it sooner rather than later.I’m sure the others will be along with their own experiences.Love and best wishes Jane 

Many thanks Jane, it probably best to have the surgery as constant stents etc will take its toll on me as I get older, but thanks for the advice Jane xxx

Hi Amelia55,Hopefully someone here will have advice about long term stents.I had them in briefly after the cystectomy.Has your urologist given you much advice ? I had a long discussion with the surgeon before the surgery and that was very useful.There is plenty of advice and support in this forum.Love Jane xx

Would keeping your bladder really be worth all that is entailed? Yes, cystectomy is a big undertaking, but if it is the best solution to rid yourself of cancer, then an alternative form of plumbing will do just as well. Depending on your initial diagnosis, I believe chemo & radiotherapy has about equal cure rate to cystectomy. With the added issue of the stents, cystectomy would seem to be the better option. It is a difficult decision & one you have to decide for yourself, armed with all the information you can obtain.

I actually chose cystectomy (offered BCG or RC with TaG3 diagnosis) for best chance of cure, to get the treatment over & done with & get on with my life. That was 10 years ago, age 56 & I have never regretted my choice. Happy to answer any specific questions if I can.

1. Hello Teasswill  thankyou for the advise, I also have Tag 3, regarding the op how was your recovery? Dont know what to expect .

Thankyou.

I didn’t have any significant complications. Initially incredibly weak & tired & recovery can seem very slow. Although I was able to start resuming leisure activities out of home at 6 weeks post op, phased return to work at 3 months, it was around 8 months before doing all usual activities without end of the day fatigue. I have neobladder so had to contend with training that as well as recovering!

I was dead set against RC so elected to have chemoradiotherapy. It never worked out as planned, and I reacted badly to it, and just over 3 weeks ago I had Salvage Cystectomy - the same as RC but with the radical bit dropped as it's not first line cancer treatment.

Despite only having my radiotherapy finish in August 2019, it was found I had already had adhesion between bladder and bowel, which complicated things a little. 

A family friend that also had bladder cancer now has a recurrence, and there's nothing they can do for him as he has massive adhesion between bowel and bladder, and cystectomy is now not an option for him, and it's now spread to his kidney.

If you can have RC whilst you're able to, that may well be the way to go for you. 

I have the bag, but it's really not as much of an issue as I thought it would be. Instead of having a wee, I empty it - and I'm able to do everything I used to do already - aside from hiking, but that will come in time as my fitness levels improve, as I have been housebound since August due to my bladder shrinkage and hardening, meaning I could only hold around 25ml of pee.

I was offered ne or bag, and I elected for bag because I found it would have allowed me to crack on with my life much sooner.

I think personally, if you have had any radiotherapy and it looks like you may have to have your bladder out, then sooner rather than later may be the order of the day, so the risk of complications from adhesion is not as high. 

Good luck in whatever you decide to do. 

Hi Amelia 55

I knew from the start that I would go the stoma route. I did not want to be prodded about every few months.  Now I have an MRI every six months and I like the fact that Basil is very user friendly.

Good luck 

Inanna x

Many thanks for you advice it really is invaluable to me so I can make the right decision for me.