Deciding between radiotherapy and surgery

Hi Betty2  and welcome to this friendly and supportive group. I was T3/G3 and had the same choice to make following my chemo. I opted for the chemoradiation route. That was nine years ago, and touch wood, so far no recurrences. My oncologist was a great advocate of bladder preservation, and I was considered a good candidate. Many here have had bladder removal and can help with their experiences. Happy to help with any questions regarding RT, but please feel free to ask anything at all. Best wishes.

Thanks Rily 

I do have a couple questions. Did  you experience any bladder and bowel symptoms that were difficult to manage during the treatment or after? And have you found the regular cystoscopies afterwards a problem at all? 

Hi Betty. I did not experience any problems at all during treatment. The daily trips to the hospital became a bit tiring, but I could carry on as normal. Following treatment, my bowels were a bit erratic for a month or so but gradually got back to normal. As long as I knew were the nearest toilets were, I was fine and never had any accidents. Bowel problems are common with pelvic radiotherapy. Also, after treatment finished, I had bouts of fatigue, but again this faded. I had follow up cystoscopies every 3 months for the first few years, then moved to 6 months. Now on annual checks. I have also had annual CT scans. I have never had problems with flexible cystoscopies and find them reassuring. My follow up care has been excellent. Currently have a normal functioning bladder. Best wishes.

Thanks Rily

Hi Betty2,Welcome to this friendly group,I had bladder removal.I didn’t have a choice as the type of cancer I had was aggressive and didn’t respond to radiotherapy.I already had a very diseased bladder before cancer so it was much better that it was removed.The operation is a big one and recovery usually takes a few months.Things to think about are how you will manage a stoma or neo bladder and what effect cystectomy will have on a physical relationship afterwards.In women most of the gynaelogical bits are removed and the vagina is shortened.It is possible to lead a full life after cystectomy though.I have a stoma and manage well.There is plenty of support and advice on here.There is a wide range of experience too.It’s a hard decision to have to make.You need to get as much information as possible and weigh up all the pros and cons.My op saved my life and that was 3 years ago.There is always the risk that if you leave muscle invasive cancer it can spread and become inoperable.Best wishes Jane

Thanks-It’s helpful to hear your experience. My specialist nurse has suggested they would guide me in direction of surgery because of my age and already having some issues with bladder sensitivity during chemo.
But I feel I need a really clear rationale before deciding to go for surgery as it seems such a big irreversible step, but ultimately I think I can get my head around it if it seems the best way forward.

I think my main concern about radiotherapy is having long term bladder or bowel issues that might make it difficult to go out and about. I like sea swimming  and had also just started to get into camping , and it’s important to me to be able to manage long car journeys- these are the kind of things on my mind in weighing up risks and benefits.

I will be discussing it more with specialist nurse but so useful to get perspectives ftom others who’ve been there 

Hi Betty2,Yes you definitely need to think about what you enjoy doing and whether cystectomy would have an impact.My situation was different from most people on here.I suffered from Interstitial cystitis from my early 20’s until cystectomy in 2019 aged 58.My life revolved around finding a loo before the surgery.Having a stoma has been really beneficial as I’m pain free and it’s no problem to empty it if I’m out.I love gardening so I was concerned I wouldn’t get back to it but the surgery hasn’t stopped me.It’s helpful to write down any questions you have to ask a specialist.I was able to take my sister with me to see the surgeon and she had questions for him too.She has remarked on how much easier it is for me now on longer journeys than before.My only regret is that I didn’t have the surgery before I developed cancer.It would have saved years of pain and later chronic urine infections.

Hello betty2

I am in similar situation, 50s, female diagnosed with t2 mibc.  Had my 2nd turbt in Sept and am going down road of chemoradiotherapy. Next week I have my pre radiation cat scan to be measured up, and then will start chemo same time as the radiotherapy, which will last for 4 to 6 weeks.  I was constantly told bladder removal is the gold standard treatment...but I feel I have to give this a chance and if cancer returns then I'll consider removal.  Thankfully my 2nd turbt came back -ve from where original 3cm tumour was.  Now I'm just anxious that I have to administer an enema at home before the scan!! 

Hi ojblossom. My oncologist said there is no evidence to show one way is more successful than the other for MIBC. I had the chemo with radiotherapy via a PICC line and chemo pump. Had no problems with it. Best wishes.

Rily,  great to hear your experience. After diagnosis I read so much and found more and more studies in favour of preservation.  It does mean constant follow up appointments which I'll happily endure before and if i need major surgery in the future.

I'm apparently having a large dose of cisplatin on day one of radio, then 3 weeks later a 2nd dose if my body can take it, if not it will be divided into smaller weekly doses.  The pump system sounds a more gentle way for it to be administered, will question this at next appt.! Thanks