Newly diagnosed

Hi Clam. It seems a bit early to be talking about bladder removal before you have had a TURBT. Not sure how you have been given a stage and grade without having biopsies taken. A TURBT is usually the first step and the results then determine the next step. Best wishes.

Hi there, sorry to hear you had such a hard time getting your symptoms taken seriously. Have they done a second check to ensure that it is NMIBC? That is gold standard procedure with T1G3. I am glad that you have been given the choice - I think too many consultants simply inform the Px they are having BCG without giving sufficient information. 

I had the same choice & it is immensely hard to decide. You need to weigh up the pros & cons of each treatment & your priorities in relation to your personal circumstances. I was told that 70% people are still clear after the first 6 weeks BCG, but a 50% likelihood of needing cystectomy eventually. Also as you correctly say, there is a risk that a recurrence may be muscle invasive, necessitating chemo & either surgery or radiotherapy, or there is a small risk that it may even progress so rapidly that it become incurable. 

For various reasons I chose to have immediate cystectomy (age 57). With clear post op path report I was told 95% likely cured, but will be on life time follow up in case. Now nearly 10 years post op I am on annual checks but have never regretted my decision. I do appreciate that others have different reasoning & choose BCG. 

Am happy to answer any questions you have to give you the information you need to help you choose. 

Hi Clam,Welcome to the group.It’s friendly and supportive so I hope you find it helpful.I had over 30 years of Interstitial cystitis leading to pre-cancerous changes in 2005.I was told then that there was a risk of developing squamous cell cancer.14 years later after great difficulty in passing urine a tumour was found after a TURBT.I wasn’t given a treatment choice,my bladder had to come out as the cancer was aggressive.I had a radical cystectomy 19mths ago and live happily with a stoma.It was major surgery and recovery was slow going but I am rid of all the pain from the Interstitial cystitis.My quality of life shortly before the op was awful,I was either urinating every few minutes all day and night or not able to go at all.I was back to caring for my disabled mother 8 mths after surgery.You should be given the opportunity to discuss all the options with the urologist before making a decision.We are all here to support you whatever you decide so feel free to ask questions.We know how scary it is at the beginning.Most people feel better once a treatment plan is in place.Love and best wishes Jane xx

Hi Rily thanks for responding, I've already had my first TURBT and transvesicle chemo 3 weeks ago, I spoke to Consultant on Friday who gave me my options as decided at MDT meeting and said to let him know on Tuesday, I guess I'd prefer a second TURBT followed by BCG therapy but worried if it doesn't work that it may have spread. I just can't decide what is best.

Hi Teasswill, thanks for responding, I too am 57, I initially thought of BCG but the more I think of it, the more I am leaning towards RC, but I am overwhelmed by the extent of what they remove and what the pitfalls and problems might be with a stoma. I also suffer from Autoimune disease (Psoriatic arthritis, like rheumatoid but with psoriasis) so have a lot of pain generally, the idea of constantly having to go back for TURBT's and BCG therapy sounds like it would take over your life and you would be beset with side effects, and discomfort from repeated procedures,  whereas RC seems like when it's gone, it's gone. is the 5% risk of recurrence you mention, in the ureters and kidneys or as secondary cancer anywhere in body? I have been told I could have an internal pouch, how long was recovery after the removal, were you in hospital long and reliant on carers? I care for my elderly parents and help my daughter who has three young children, one with autism. I'm not used to being the one in need of care and already struggling with this prospect.

It seems like a huge decision to make in a few days, but I suppose time is of the essence, it is such a scary time and I can't tell you how helpful it is to be able to speak to people who have had the same experience. thank you.

Hi Winkers 60. Thanks for responding, 

can I ask if you were glad you waited the 14 years before surgery or do you wish you had got RC from the beginning to have saved you from all the cystitis, check ups/ hospital visits and worry of recurrence etc... I suppose that age might have been an issue given it was 14 years ago, but I am 57 and way beyond childbearing age, so that clearly isn't a consideration for me.  Have you had any unpleasant side effects or problems from the stoma? I know you said it was 8 months recovery but how long were you unable to do day to day activities after op and how long were you in hospital for.?

thanks for taking the time to help

Clam

Hi Clam,My urologist asked me the same question and I told him that I wished I could have had the cystectomy before developing cancer.I was told in 1997 that cystectomy would be necessary in the future,all the urologists mentioned it but it was never actually offered as a treatment for the I.C which is classed as an auto immune condition.I had the cystectomy at Southmead hospital in Bristol.It was meant to be done robotically but the tumour was too bulky to be removed vaginally so I had an abdominal scar as well as several smaller robotic ones (all very faded now).I was on the enhanced recovery programme so should have been in hospital a shorter time.Unfortunately shortly after the op my bowel stopped working.This is a common complication but not very pleasant.After a few days of pain and vomiting they put in a nasal gastric tube which helped.I was in hospital 9 nights,the first one was in ICU but that is usual after such a big op.I started changing the stoma bag myself after the first few days in hospital.The stoma nurse was helpful and showed me what to do.It was trickier dealing with the stoma in hospital because of all the tubes/drip stands but I managed ok and didn’t have any leaks.I lost a stone in hospital and was weak through lack of food as I was nil by mouth for most of the admission.My sister came to stay with me for the first few days as I was weak and wobbly .I was able to manage alone after about a week.My sister left non perishable food out at a level I could reach.The fridge was more difficult as it’s lower down but I was very careful not to bend too much.Recovery was slow but I was feeling better after 4 mths and very much improved after 8 mths.My mother came home from the care home and I looked after her with the help of 2 carers.Unfortunately mum’s dementia and physical health declined and she is now bed bound in a nursing home.I was back gardening after a few months but I don’t have as much stamina as before.I’ve had no problems adjusting to life with a stoma.I look upon it as life saving and it’s improved the quality of my life.Before if I went out I had to know where all the loos were as I usually had a urine infection and couldn’t wait.I was 58 when I had the op and the cancer was T2G3.I hope this helps.Love Jane xx

Thank you, it sounds like you have had a very rough time of it over the years Jane, I'm glad cystectomy has improved your quality of life. It's helpful to build up a realistic picture of what lies ahead, the uncertainty is the worst bit at the moment I think. 

Warmest Regards

Clam

Hi Clam, and welcome from me too. My husband had the same grade/stage as you in 2017, he too had had it a very long time before getting diagnosis and said his whole bladder looked like inside-out cauliflower when he first saw it. Long story short, after the next recurrence it was put to us by the consultant "Equal choice, carry on with more BCG [he had just had 6], RC, or try mitomycin." You should  normally expect a CT body scan [likely with contrast dye injected] anyway [he had one] to double check there are not any secondaries already.

He was utterly gobsmacked at the prospect of RC, he would not have handled the aftermath well never mind in his case the loss of masculinity, so opted for the Mitomycin. That has been brilliant, despite not being able to tolerate it heated which they tried, so ended up having it cold, and not being able to retain it as long as supposed to, he has had no further recurrences. I think despite a slight hitch on the hospital's side he only had about 6 at weekly intervals plus later another 3, it should have been less. He hasn't found the initially 3-monthly, now 6-monthly, check-ups to be any problem at all. Yes there's always a chance of a recurrence but with the regular checks, we feel confident any will be found and dealt with before they get a chance to invade the muscle. 

We are both extremely grateful and pleased with his choice; we have a daughter with massive health problems and look after our grandson part time, and we have not had to let either of them down once throughout with this choice. It certainly would have had a far more devastating effect on the whole family if we had gone straight for an RC he may well never need. It has definitely not taken over his life, and although people do cope well with stomas, pouches etc, having a normal bladder function is easier still.

I hope the many parallels with your situation are really useful. Feel free to private message me if you wish.

Denby

I’m sorry that your symptoms were not taken more seriously Clam.I was fobbed off with the I.C so by the time it was properly diagnosed the bladder was extensively diseased.I feel lucky that I was already under cancer surveillance as I was able to contact the urology team directly when my symptoms changed.Cystectomy offers a chance of being cured but even that is not guaranteed.Did your uro offer any thoughts as to what would be best for you ? I had a lot of faith in my surgeon.I hope you have supportive family and friends ? That will really help.My sister Sarah and partner John supported me but the main help came from this group.Love Jane xx