Cystectomy operation

I hope none of us trivialises the impact of such major surgery, nor would we wish to persuade anyone who is set against it. As you say, it is a personal decision. However, those of us who have gone through it (either by choice, accepting the recommendation or as a last resort) are aware that the anticipation of such undertakings is often far worse than the actual experience. That is perhaps what we intend to communicate.

The urge to cling to life, or wishing to take the option that gives best chance of cure, can be strong enough to accept and adapt to changes. But as you say, everyone is different, with personal opinions and circumstances etc that influence one's decision making. Wishing you good health for as long as possible.

Hi Teasswill,

Thank you so much for answering to me. I hope I did not sound too harsh in my initial post. I fully understand the rationale of those who decide to go through the operation route and, as I said before, I respect it fully. I also admire the resilience in facing hardship, especially during the post-op recovery phase and the ability to adapt and adjust life to new circumstances. These show courage, flexibility and love for life.

My point is that clinical settings, personal viewpoints, life baselines and stories, age at disease onset can be dramatically different. There is probably no case that is identical to another. I read the very few studies that have been conducted so far monitoring long term post-operation quality of life of patients at different time points. Although, as you rightly say, a majority of patients adapt reasonably well to the consequences of the operation, both physical and psychological, there is a meaningful minority (around 30% according to some studies), that never adjusts for one reason or another and regret, which is one of my biggest concern, is a major issue for many. Of course regret may even come when one refuses the operation and, as a result of it, the worst happens. What I want to say is that this is a serious,  very controversial decision that can really tear you apart and that cannot be dismissed with a 'you will be fine because I was'.  

I feel that people's concerns and psychological travail need to be acknowledged and addressed more carefully by medical staff and probably by charities as well and that advice should be personalised. Quick reassurance may just cause severe disappointment at a later stage.  

All the best,

Alex 

Alex, I am doing fine, no regrets. Just finishing off building my new house and off to the continent soon to visit relatives and various galleries. Not to shabby. I am stilll the same person.

Dear Alexander1,

I am interested to read your post and  others have already said what I wanted to say much better than I. But my views on psychological effects of decisions re treatment are that expecting medics to address those as well as their own field is asking more than most are able to do. However we often suggest places such as Maggie's centres, Macmillan help line or the Macmillan cancer centre where they can give such help.

In general, my views are that everyone has a right to decide what treatment they want, if any. The psychological consequences of that decision are for the individual to select and to bear.

We all have to deal with them in our own way. Some may seem to feel them more than others. Alternatively, others may feel them but choose not to reveal them to others.

All we can do on this forum if asked is to state what we have decided and, if we feel it may help, to give a few details of why we took that decision. None of us has a right to say that our way is the best or only way to be.

Some here are unable to discuss their situation with family and friends. We hope we help by 'listening' and providing a view of what we have done and how it has affected us.

I spent some time on personal  psychological work earlier in life, know myself well and eg knew I wanted my cancer removed ASAP and faced possible death and mutilation to achieve it. I have no regrets and am happy with the result. I am no less me for losing my bladder, just as menopause did not make me less of a woman because I lost the ability to have another child.

As for fast decisions trivialising the physical and mental consequences of treatment. I'm sure nobody would advocate any such thing. But some people can review a problem and make a quick and accurate decision. Others may not have had the practice or confidence to do it.

In my case I decided quickly and made the right decision for me and my family who tell me they are grateful for my matter of fact approach. On the other hand  I've been putting off changing my old mobile phone (which has several problems) for months, despite knowing rather a lot about such things. 

All the best,

Latestart

Morning Latestart,

I do appreciate your honesty and support.

I do agree with you on the fact that medical staff do not have the time and resources to deal with psychological consequences of treatment options. Yet, sometimes they could at least acknowledge that these exist while communicating with patients. Some do and do it well, some others forget. 

My concern about the post operations changes are truly personal. They have to do with the work I do (and lose if I have the operation), diet, sex activity, level of fitness, as exercise is a daily and fundamental routine for my mental health, very limited support network from friends and family and other private circumstances that would make recovery and adaptation extremely complex. Sometimes we assume that what we are and feel is what other people are and feel, which may not be always the case. 

I have never felt so lonely since this cancer problem started. I keep on feeling increasingly so and perhaps this is the sign that I need to face this in solitude. 

Thanks,

Alex

You may be right that solitude is the way forward but perhaps finding a qualified person who can help you through it would help you more? Can I suggest you try one of the cancer-related counselling options I mentioned before you do that? Facing cancer alone is tough. 

All the best,

Latestart

Hello Alex. I totally understand your point of view and agree that when it comes to decision making especially one that involves major life changing surgery, it’s one’s personal choice depending upon many factors that you have comprehensively highlighted. Oncologists/ oncology surgeons are very good in treating the physical part of cancer but, I agree, the psychological aspect of cancer needs better support in many cases. When I was confronted with this issue, I carefully considered my options and opted for the radical surgery despite the recommendation of BCG by the urology team. My decision was personal, based on my own circumstances and was made between myself and my urologist. No one on this forum ever trivialised the surgery or tried to guide me towards a particular path. I was already aware and was reminded by the forum members that it was a major operation with possible post op complications. Where I found it useful was the personal reports of post op recovery, hospital stay, return to normal activities, tips on how to manage stoma etc etc. Since the surgery almost two years ago, I have managed very well and have had no regrets. I’m forever grateful to all the lovely members/friends of this forum, who guided me through a very difficult phase of my life and continue to provide support. My very best wishes for whichever option you decide in future. 

Hi Alex,

a couple of things to add to what other people have said:

I’m in the East Midlands and my oncologist referred me to a MacMillan Clinical Psychologist. I have found this really helpful in my bladder cancer journey, a bit more ‘nuts and bolts’ than general counselling. 

Drugs: have you thought about going on a clinical trial?  I know that Action Bladder Cancer are doing a webinar soon called ‘Recent Bladder Cancer Research: an update’. Might be worth investigating.

Tough time for you.  Jane