cystectomy recommended last week

Hi Tom and welcome to this brilliant caring and informative forum which has been great for me over the last 4 years. Sorry I'm not offering my own experiences but those of my husband, who has Asperger's and does not do forums at all. He had a whole lot of what we now consider were tumours removed by the hospital where we used to live, years and years ago. No follow up no mention of cancer. All as a result of frequent getting up at night rather than evident bleeding. The same sent us to the new GP soon after moving. This time it was just like you but the entire bladder looked, he says 'like inside out cauliflower'. It was G3 ie 'High risk [of recurrence] and Pta. There was quite a bit of delay in the system but he had a TURBT to remove them all and 6 BCG. They always wait usually 6 weeks after BCG before doing a follow up check [as BCG can leave red patches of irritation which are hard to distinguish visually from cancer]. Fortunately because he has strictures in the urethra, his 6 week check was under GA. So he came round to find it had been another TURBT as the was already a new papilloma. He was told as "3 equal choices" radical cystectomy or more BCG or Mitomycin. And we were both horrified, though he is now 77 he was not ready in 2017 to say goodbye to intercourse if it could be avoided and nor was I. So he asked for the Mitomycin. Though that did not go to the ideal plan it has given us four more years of fun and we will know in a few weeks what might be next. This is because the consultant thinks the red patch seen at the last 2 checks is CIS and he has had his day-case theatre booking today for the 28th Feb. It will be removed and biopsied to determine what it is. An important question as you will appreciate is whether the CT scan saw anything suspicious or definitely cancerous outside your bladder.

Myself I would definitely be asking for a second opinion. Our daughter has fibromyalgia and though my husband copes remarkably with life with Asperger's, having worked alongside a secondary school autism unit, you really have my sympathy. You are right to be concerned, it is not as I have learned from the folk on here who have had no choice medically or have preferred RC just 2 weeks in hosp., you will be needing support yourself for possibly quite some time once you get home from RC surgery even if all goes smoothly which it often doesn't. Many people live with repeated recurrences and treatments. You certainly deserve far far better info. many people say they get support from a CNS [cancer nurse specialist], did they give you a contact number for one??

Kind regards, 

Denby

Hi Tom

Welcome.

I hope you get to see a bladder surgeon soon who will be able to discuss other treatments for you. 42 doesn't seem to be very old to go for RC straight away. It is a head banger on being told it is cancer isn't it. I felt like the guy was talking to someone else.

I was 67 when I had my RC and I was given choices of treatment. I went for RC because bladder cancer is well known for reoccurring.  I was in good enough health for the op which may not be the case later on so I grabbed the bull by the horn. Now I am glad that I did. Basil my stoma and I get on well.

I hope you get a good sympathetic bladder surgeon.

I wish you all the best on this journey and you get to chose the best treatment for yourself

Love Inanna  x

Hey Tom,
I was 53 when I had the same discussion and recommendation from my surgeon 2 years ago. Grade 3 (like you) and stage 2 (you don’t say the stage).
It was a massive shock to the system; and I am not caring for my wife nor have a son needing help, so even more worrying for you.

You are probably imaging life without a bladder and prostate is not good. My experience of having both removed is quite the opposite and I lead a life 99% the same as before.

Everyone is different of course. I had no underlying health issues and was fit and not overweight, so was able to have a Neobladder rather than stoma which has worked out so well for me.
No doubt it would not be a good option for others. And there are plenty on this forum happy with stoma and the benefits that offers.

Bladder cancer does have a nasty tendency to come back, so Radical Cystectomy at an early enough stage can be the best option long term.

You do need to speak to a bladder surgeon before making any decisions.

Happy to answer any specific questions you have. And no question is silly or off limits.

cheers
Chasam

What a shock for you. None of us can second guess why they are recommending surgery rather than BCG, but here are a few possibilities. It may be that the stage (how far into the bladder it has gone) is verging on muscle invasive & it is not uncommon for BC to be 'understaged' ie at the time of RC they find that there are muscle invasive cells. I get the impression that cancer in younger people is more aggressive than in older people, hence the expectation that BCG would not be effective. The risk with G3 is that it can recur & become incurable or at the least, mean even more aggressive treatment. It's a choice between 2 unpleasant options - surgery & all that entails vs gambling with your life. 

However, you do need to think ahead, rather than the problems with the immediacy of surgery. At age 57, I was only 7 nights in hosp - the minimum for no complications. Yes, the recovery is long & slow but in a few months you would hopefully be cancer free & getting on with your life. I looked on it as short term pain for long term gain - though I can understand your concerns & worry about how the family will manage.

Well worth pestering the hosp to get that appt with the specialist - go via PALS if necessary. You definitely need to talk this through & understand all the pros & cons etc. Best wishes.

Hi Tom,Welcome to the group.You should be able to discuss treatment options with the surgeon.As the others have said bladder cancer does often recurr and cystectomy is offered as a chance of a cure.It is usually the option for muscle invasive cancer/aggressive cancer that could spread.I had a cystectomy for T3b G3 Squamous cell bladder cancer in 2019.I have a stoma and cope well with it.There is advice and support here.Best wishes Jane