Age when starting treatment

I was nearly 68 when diagnosed in July 2017. My impression from other members on here and from my appointment to discuss bladder removal as an option is that it is a big operation. Pre-op will fully investigate the patient's health to ensure he or she is fit enough to undergo the procedure and the many months of recovery post-op. Co-morbidities will not necessarily stop you from having the op but in my case my heart problem (mitral valve regurgitation) was viewed as too great a risk for many hours under anaesthetic unless performed as an 'all or nothing' last resort. Age can also be a factor in these decisions. You will need to press your cancer team for an opportunity to discuss your options and concerns. You are right that the NHS is under pressure. It can be difficult to find an appropriate consultant or doctor to talk to. Good luck ! 

Hi

There are 10000 new cases of bc in the UK each year. Approx 70 percent are nmibc. Even for high risk nmibc on bcg greater than 50 percent remain cancer  free. I am 76 and have had 18 bcg over two years so far and It has not been bad at all. I know some people have bad experiences and my heart goes out to them but do not be put of most people tolerate bcg ok. In my case it was a no brainer to try bcg as surgery is allways possible as a last resort.

Best regards

Thanks, Ray. You've survived well. Yes, finding someone to ask is one of my worries.

Thanks. it seems logical to try BCG first. However, for the sake of brevity I didn't mention the problems I had with being unable to wee and heavy bleeding after my TURBT which makes me think my bladder may react badly to sustained BCG. This is something I would like to ask a professional about but so far I haven't been able to.

There are actually 3 options with high grade NMIBC - BCG, cystectomy, or what my hosp called 'watchful waiting' (regular checks).  I'm interested in you citing your age as a reason to go for cystectomy. I was considerably younger at age 56 and felt that surgery would give me more likelihood of cure and hence peace of mind. My surgeon told me that 50% patients having BCG end up having cystectomy too (possibly with chemo as well). I wonder if I were 80, I might be more willing to try BCG first, on the basis that I'd be less worried about possibly not being cured. 

If you choose BCG and find it awful, I'm sure you could ask for cystectomy instead, or opt for just check ups. If people have managed at least the first set, they will most likely just go on to check ups and only go for RC if a recurrence crops up. It's the dilemma of weighing up the months of recovery with RC (which is a major op), but more likely cured, vs BCG which might or might not cure, might become muscle invasive, might or might not have unpleasant side effects. Unfortunately no-one can say how you will fare with either option. You certainly ought to have a face to face appointment to talk through all the pros and cons of each option. 

I think you must have a chance to talk with someone who does cystectomies before you decide anything.

The following are important:

How fit are you? My team made it clear that bladder removal is like running a marathon. One of the tests I had after chemo (which had been quite exhausting) was a bike test, during which they found I had atrial fibrillation - never found before diagnosis certainly even not at time of TURBT either only 3 or 4 months earlier

Before diagnosis at 69 I was very fit, daily walking fast - 10k steps, gym,, Pilates. After chemo I lost some muscle tone. 

Despite all of this and some last minute problems I did get through all right and recovered well - click on my name above and you can see more detail. But I was 10 years younger than you.

If I hadn't been allowed to have the operation they did mention radiotherapy, by the way as potentially 'curative'. 

I can't recall the statistics on survival for 5 years post op, which I am 3 years through now, but you can probably find those on line. Naturally I'm hoping for longer, but none of us lives for ever.

Presumably you will have an appointment to explain your decision at which you should talk with a consultant and a CNS and ask their opinion. But my family arranged a private second opinion so we could talk to a specialist at another good cancer centre. It does cost money (£300 at the time I think) but reassured us we were in the right track). I was one of those who decided immediately that I wanted to lose my  bladder, by the way and have coped well with a stoma and bags. Quality of life is an important factor for me in All this, rather than quality.

All the best with your decision,

Latestart

Sorry to hear that

Wasn't it the consultant that gave you your grade and stage, it's standard NHS protocol

Best regards

I think the post suggesting 50 percent of patients go on to cystectomy is questionable,  I would like to know where that came from as it is not my understanding of the figures in the UK and I have a personal interest

The 50% or more figures generally refer to patients whose BCG treatment is either unsuccessful or cancer returns within 6-12 months. They then go on to have bladder removal. This is the problem with statistics. How the parameters are defined is as important as the %. BCG success rate is usually around 70%, success being the patient going in to remission for a specified period of typically 5 years. After that time, apparently 30-50% will see cancer return. BC is known to be persistent but treatable even if it recurs. This is why, as you know, monitoring at 3 monthly or longer intervals is key to keeping it under control.

Thank you. I thought if I had  a cystectomy it would be one-off and if it went well and I recovered that might be better than 3 years of difficulties with BCG out of how ever many I have left. The idea of just check-ups might be quite a good one.