Different opinions

Morning Loubyloo, So Sorry to hear about your results. I found myself in a similar position nearly eight years ago. My consultant told me I will have to have my bladder removed and it is a very serious  operation at my age, I was 68 then. Thank goodness my cancer nurse introduced me to MacMillan and said I would be seeing an Oncologist. Subsequently, I went down the other route. I had chemotheapy followed by Chemoradiotherapy. I have had two recurrences and had two superficial tumours removed and 15 BCG instillations. I have had the all clear now for nearly a year. I am now 75 and feel fit and relatively healthy. I play golf 5 times a week and live a full life. I have been very lucky. Explore all options and go with your heart. Off to golf now! stay well.

Thanks Garviv, it’s great to know there can be a life after all this. Enjoy your golf! x 

Is there any difference between the two hospitals/consultants in term of expertise - is one a more renowned bladder cancer treatment centre than the other? That might give you an idea which consultant's advice to follow. Was one a surgeon, the other an oncololgist? (Different areas of expertise.)  I believe both routes have similar chance of success, but chemo/radio can make surgery later on (if needed) more difficult.

I was 56 at time of diagnosis, had different options, and chose surgery, but I do not see that as loss of quality of life - it's just different toilet habits. I have neobladder - would be interested to know why the consultant said only stoma possible. Was glad to lose uterus etc - no chance of cancer popping up there, no more smear tests. Also I wanted to avoid the risk of needing chemo, but I guess you may be advised to have that in either case.

No easy/right answer - maybe you need to ask the consultant more questions before deciding. Very best wishes.

Hi,I think you need more information before making a decision.Did the first consultant explain the ‘death sentence’ comment ? Some of the rarer types of bladder cancer are aggressive.If you know which type of cancer you have that could be a factor in your decision.
The physical aspect of a relationship may be affected by cystectomy.Women usually undergo a hysterectomy and the vagina is shortened in bladder removal.The latter can make sex painful for some people.You certainly do feel different internally after this op.This may be something to add to your decision making.A list of pro’s and con’s may help you decide between your options.For me it was a choice between early death or bladder removal and I had the op just in time.I had Squamous cell cancer which is very aggressive.I’m cancer free almost 6 years later.If there is no immediate threat to your life you could always see how you feel after chemo/radiotherapy.I feel you need to ask more questions and gather more information.Love Jane x

Hi Teasswill,I didn’t know that chemo/radiotherapy beforehand can make surgery trickier,that’s interesting.My cancer didn’t respond well to either so I only had the surgery.

Hi all, 

Thanks for your replies. 

The comment was made by the surgeon who did my TURBT. I asked him about bladder-sparing instead of the op and that was his response. He said that bladder sparing was often for older people who can’t have the op …or if a particular patient refuses to have the op…and for me the radiation would be life limiting. I have my note taking husband with me at these appointments to make sure I’ve correctly understood (!) 

The other was another surgeon who does the bladder removal op, telling me that this was a good option for me. 

The tumour site was very close to the entrance to my bladder, so he felt that all surrounding bits need removing ..and that any other option would be a higher risk compared with through bag. 

I don’t need my lady bits anymore and an through menopause. The sex , we may have to find work arounds! 

Hi LoobylouStaffs4fd2f6 . I had a similar decision to make and went the same route as Garviv with RT (T3/G3). My oncologist is an advocate of bladder preservation where possible. I was told that for MIBC there is no evidence to show one route is better than the other for long term survival. My treatment was over ten years ago now and so far so good. You need to discuss things with all doctors and get as much information as you can to decide what is the best for you. Have you had a follow up TURBT at all which is usual to mop up and get a more accurate diagnosis? Best wishes

Yes, I’m going to the chemo consultant next. I’ll ask him about the two options so I can compare. 
The first surgeon who said that keeping my bladder was a ‘death sentence’  saw both my pathology report and CT scan. 
I just can’t unhear what he said now. 
x 

I hope you get more information from the chemo consultant.Jane x

That makes sense that stoma would be the best surgical option. Many people choose that anyway, even if neo is an option. I know what you mean about not being able to unhear the first consultant. One often latches onto a particular phrase and maybe misses other information. As winkers says, useful to list pros & cons of all aspects of each treatment - you may find you have an instinctive leaning toward one or the other.