Bladder removal/ further chemo and radiotherapy

I freely admit I have not had this sort of decision to make Hootiefan. My observation is just this, I used to be one of a community volunteer organisation that did, amongst other things, transport for people going from Bedford to Addenbrookes for radiotherapy, sometimes at quite odd times eg late evening and over 40mins each way. By saving them driving, or their families, we took the strain off. They could chat, ride in silence or pick their preference of radio station, whatever they wanted to make the trip a relaxing time. If you could find anything similar still operating, maybe it would be less daunting.

My take on the medical side is that if your team think chemo/radio is worth a try then it is worth a try. If successful you would not then immediately be looking at stoma for life, however good they are nowadays and from all I read on here, it cannot be denied the removal is one big op to deal with. 

kind regards, Denby

Hi Denby Thank you, i have heard of such a service locally so i will contact them, it sounds ideal to take strain off others who would normally take me to appointments, and would make a huge difference to the daily treatment. I appreciate your input thank you again  

Hootiefan xx

Hi Hootiefan. I used the patient transport service described by Denby. Brilliant service by mainly volunteer drivers. Many are ex patients. Takes away the stress of getting there and back each day. The chemo associated with radiotherapy is different to the chemo you have had so far. Instilled by a chemo pump you wear for a week at a time. Delivered so slowly over a long period of time, it shouldn't have the same side effects as the one day big hits. I had very little side effects from 6 weeks of chemo/radiation. Happy to answer on questions on my treatment. Best wishes whichever way you go.

I think you will find that most people manage very well with a stoma and bag and can carry on with a normal life. Support is very good from stoma nurses and your equipment supplier, and although it is all a bit fiddly at first you will soon get used to it. Surgery for bladder removal is not a holiday in the sun, but you will recover even if that seems impossible at the time.

I guess you need to ask your consultant some questions about longer term implications, possible side effects & prognosis to help make your decision eg does one have better prognosis than the other, is RC still a future option etc

My case was different, in that I was at an earlier stage of TaG3. I was offered BCG or immediate RC and for various reasons chose RC. I was able to have neo, but that wasn't a factor in opting for surgery. I've never regretted my decision, although it was tough & more time consuming than I had bargained for! Even if you do choose surgery, there will be a number of visits but not so many & more spread out than  with radiotherapy. 

Good wishes making your choice.

Thank you so much i have now spoken to someone from my local Cancer Transport Service and if i opt fir the treatment im sorted for transport . So good to hear other peoples experience with treatment so thank you for that too  xxx 

Thank you for replying i appreciate everyone taking the time. My dad had a bowel Stoma quite happily for years so im trying to think aboutvthe plus side of it! Its nice to hear how others cope Thankyou. Xxx

Hi Hootiefan,Cystectomy is a big op but it is possible to have a good life with a stoma or neo bladder.I had mine nearly 2 years ago and have a stoma.I haven’t had problems with the stoma but don’t have as much stamina as before.Best wishes Jane x

Hi Hootiefan

I chose the Stoma route because I did not want chemo or a neobladder

I have two scans a year and managing a stoma is easy, if I can do it, anyone can.

My stoma is called Basil after Basil Fawlty and my life is good.

Of course everyone chooses the option best for them and it is good there is a choice 

Love Inanna x 

Hi Hootiefan,

I'm in a similar situation and was about to ask the forum for feedback.

I have muscle invasive bladder cancer and have just completed 3 rounds of Chemotherapy (Gem Cis if you want the details).

I have been deliberating over radical cystectomy or bladder preservation (this will mean radiotherapy 20 days and with additional chemotherapy). I'm 58 and have a pretty active lifestyle.

The key thing for me is to remain as normal as possible so I have elected to retain my bladder and go for radiochemotherapy. The follow up will be 12 week scans and cystoscopy for the next 2 years (then every 6 months for another 3 years) and I figure this will keep an eye on metastases. If the cancer does recur, or occurs elsewhere in the body then it'll get picked up and I have the option of a "salvage cystectomy" and further treatment. 

at that point i'm even going to see if i can have a neobladder.

I'm fortunate that my treatment centre is just 15 mins each way, but 20 treatments means it'll be a month of radiotherapy. I'm not too concerned about the travel and number of appointments because it is so local.

Everyone is different, and i know the vast majority go straight for cystectomy but it would be interesting to know if others considered bladder preservation and what made them choose cystectomy.

good luck with your treatment, whichever path you choose