Painful Decisions!

Hi Pienmash, I was diagnosed with bladder cancer 5 years ago, after having the tumour removed I was told that it was a very invasive aggressive type of cancer, I was given three choices, do nothing and it would return, it would spread and would kill me within 2 years, have prolonged chemo followed by radio therapy then return to the hospital every three months to have a camera inspection and blood tests for between two and five years, both the urology consultant and the oncologist said that would most likely have side effects like night incontinence and erectile problems, finally a  short course of chemo followed by surgery to remove the bladder, prostrate, seminal sacs and pelvic lymph nodes, this option would mean that I would have to have either a stoma or bladder reconstruction which has it's own problems, both of these also mean erectile problems but  were the best options for getting the cancer removed, I went for having the stoma, the chemo was six sessions over a ten week period followed by around six weeks to recover before surgery, I had the surgery in July 2018 and now just have annual blood tests and a CT scan. I was back at work after twelve weeks and feeling good. The surgery took around six hours which to me seemed like no time at all, I don't even remember going into the theatre only remember having the spinal pain killer then I was coming round in the recovery ward. Beforehand I was worried but looking back I made the right choice for me.

Take Care.

Hi Pienmash . Nice to hear from you again but sorry to hear of the situation you find yourself in. Difficult decision for you. I hope all goes well whichever way you go. Best wishes.

Hi Pienmash, sorry to hear this progression. Just sending you a big virtual warm hug, with the encouragement to breathe. So many here can tell you how they managed, and you could, to cope with the surgery from their experience. When the oncologist agrees with the surgeon I would be inclined to go with it if in your shoes. Keep us in the loop, please,

Denby

Hi pienmash,
I was given similar choices to you in 2020. I opted for Cystectomy which also took prostate and had a bladder reconstruction (Neobladder).
I recovered very well from surgery and was doing everything that I was doing beforehand, within 3 months.  
We are all different of course, but I was informed of all the risks (erectile problems, incontinence, self catheterisation) and suffer from none.

Unfortunately for me cancer returned in my pelvic lymph nodes last summer but that is being managed with immunotherapy and a trial chemo drug.

Better than option 1 of course!

To me, it does sound like surgery is your way forward; then deal with the hurdles along the way.

All the best and please do ask if you have any specific questions.

cheers
Chasam

Thank you Truckman..you have helped me make the decision to go for it, appreciate you taking the time to respond.

Thanks Rily- the helpful responses I have had have helped to persuade to go for it.

Thanks me ol' mucker-I have just confirmed that I will go for it. My best friend and his lovely family have said they will kindly look after me at their house post op for which I am grateful. Just have to worry about the poor odds now haha...but 1 step at a time...You helped me make this decision-appreciated

Thank you Chasam- you have helped me go for it-appreciated. I really hope things go well re the pelvis, hope springs eternal! And it's good news you found a trial drug...:) Take care

Hi Pienmash,Good to hear you have come to a decision.Everyone on here will support you.I’m still here nearly 4 yrs after cystectomy and wouldn’t have been without this op.Best wishes Jane 

Thankyou! You guys really are a big help  and give advice with great empathy! :)