Bladder Cancer treatment

Hello JediKnight

I am sorry to hear of your journey so far with bladder cancer. It can be hard to make treatment decisions and if it helps there is a Support Line (number below) where you can speak to one of the nurses to ask about the different options.

I had a different type of cancer, so I hope you do not mind me responding but you asked if anyone had experience of either. I have had the pelvic radiotherapy. 

I had 25 sessions of external beam radiotherapy August/September 2022 to my pelvis. I would advise you to get as much possible information about the radiotherapy and potential side effects before making the decision. The radiotherapy is painless as the machine does not touch you but there are side effects and some of them can- in some people- be long term. During radiotherapy I had fatigue, nausea and severe diarrhoea. I also had an irritated bladder. I was given medication during treatment , that did help, however I am a year post radiotherapy and I still have some issues from it. Not everyone has Late Effects but it is hard for them to predict who will and who wont. 

I will pop a link below for some information on the radiotherapy- that might help.

Understanding pelvic radiotherapy | Booklet | Macmillan Cancer Support

I hope this helps. Only you can make the decision of what is right for you, but having all the information about both treatments will hopefully help. 

I wish you well with your treatment, whatever decision you make.

Jane

Hi Jedi Knight and a welcome to the group from me. I had the same choice to make for T3/G3 muscle invasive bc. I went the chemoradiation route. That was ten years ago and fortunate not to have a recurrence so far. Everything still working normally down there. 6 weeks of chemo (Gem/Cis) followed by six weeks of daily radiotherapy. The sessions take about 15 minutes and are painless, but there is usually a lot of waiting around. I believe the latest protocol is four weeks with a higher dose which has the same outcome. On weeks 2 and 4 I had a chemo pump via a PICC line.(5FU/MMC) This helps the radio to work better. No problems with the treatment, but dodgy bowels for several weeks afterwards. This is common with pelvic rt but it gradually got better. I also had short bouts of fatigue for a few weeks, but again this subsided. Following treatment, I was checked every 3 months for the first 2 years with a flexible cystoscopy. Then moved to 6 monthly checks. Now on annual checks. Recent flexi clear. You need to discuss things with an oncologist. My oncologist said there is no evidence to show that either treatment is better than the other for muscle invasive. Happy to answer any questions if I can. Best wishes.

Thanks Jane.  

Thanks for the reply Rily, I've been told surgery is the better option in regards of risk of the cancer coming back and with radiotherapy there's obviously more risk of it returning. I have been leaning more towards radiotherapy as the thought of the surgery fills me with dread. The thing with radiotherapy is that having that apparently makes any future potential bladder removal more challenging for the surgeon as everything gets stuck together. I just hate the idea of having my bladder removed if I don't have to but obviously either choice is a leap of faith to some extent. 

Many thanks, Paul. 

One thing I forgot to mention is I was told that radiotherapy to the pelvis area could not be repeated and was a once only treatment- I don't know if it would be the same for you but it would be worth asking your consultant.

I had to weigh up whether it was best to have the radiotherapy straight after the chemo or whether it was better to keep it saved for if there was a recurrence. For me the risks of recurrence were higher so I went ahead. If I now have a recurrence there is less treatment options- however the risk of recurrence is lower. Although I do have some side effects from the radiotherapy- I do not regret it and I can usually manage them. Good Luck

Hi Jedi Knight 

I haven’t had bladder cancer, though I’ve had cancer spread over my bladder. I’ve had pelvic radiotherapy, attempted surgery after radiation and bladder removal. Radiotherapy does make future surgery difficult-in my case impossible as all my organs were stuck together and surgery was deemed unsafe. This wasn’t known until I had actually been opened up on the operating table and surgery had to be abandoned. You cannot have radiotherapy repeated to the same part of the body. 

I then had my bladder removed as part of total exenteration surgery which also removed my whole reproductive system, vagina and rectum so I have 2 permanent stomas and have had for 3.5 years. 

In my own experience, the thought of surgery was worse than the reality, but I also wanted to give myself the best chance of the cancer not recurring. Pain is well managed in hospital after surgery, and on discharge. In hospital I was on paracetamol mainly, with oramorph on request. I was sent home with oramorph but didn’t finish even the small bottle I was provided with. I found I had more discomfort than pain. 

Recovery does take time-I can’t say exactly how long for straightforward bladder removal as my surgery was more extensive. My father in law had his bladder removed 2 weeks ago, and was discharged yesterday. He says he is feeling good and has no pain, and he is 78.

Sarah xx

Thanks for the reply Sarah, it's good to know that the pain after surgery is managed well as that is a big concern I have. Sounds like I'm building it up in my head and the reality maybe won't be as bad as I worry it will? I've got a couple more days before I have to decide which way to go so thanks for the info. 

Many thanks, Paul. 

The thought of pain was much worse than the reality for me-I was pleasantly surprised! I tried not to think too much about my surgery in advance because it was so huge, but I had an epidural in addition to my anaesthetic for the op, and when I woke up I had the little pump in my hand which delivers measured doses of pain relief. Don’t get me wrong, it was uncomfortable. but I never had much actual pain.

My father in law was only given paracetamol in hospital and he managed well with that. Again he spoke about discomfort rather than pain. 

It’s a lot to think about when you are given a choice like this-I didn’t have a choice in my situation, but I’ve never regretted having the surgery. I got used to stomas very quickly. All that really matters is that you are comfortable with the decision you make. 

Sarah xx

Hi

I had the RC 6 years ago and opted for a stoma. It takes a bit of time recover, but once I got used to managing bag changes etc my life has generally been normal. 

Hi Paul,Welcome to this friendly group.I had a cystectomy almost 4 yrs ago and am currently cancer free.If you go for bladder removal they give you plenty of pain relief if it’s needed.I was in far more pain before the surgery than after it.Apart from the first two days I managed just with paracetamol which was through a drip to start with.Recovery can feel slow but a lot depends on how fit you were before surgery,other health conditions etc.You can expect to feel very tired after the surgery but with time your energy levels pick up.I felt very much better after 3 months but it was 8 months before I went back to work as a full time carer to my late mum.You have to listen to your body post op and build up your walking distances gradually.Eating little but often is best.There is plenty of advice here so ask any questions as there is usually someone who can help.Good luck whatever you decide.Everyone here will support you.Love Jane