Dilemma

Hi Jimmyma2. Bladder removal is always put on the table, but BCG can also have good results. Difficult decision  to make as there are no guarantees. People make choices on their own individual preferences. One way to think is that if you go for BCG and it doesn't work, Removal may be a future option. I am sure people will be along to share experiences. Best wishes.

Thanks Riley

that was my thought process. 

Hi Jimmyma2,
quite a shock to hear talk of Radical Cystectomy isn’t it.

I was as surprised as you when I was diagnosed last year. But I’m now living with my Neo Bladder and for me it’s been the best outcome. 
As you’ve been informed bladder cancer does have a tendency to come back, so for me having my bladder removed was the right thing.
But everyone is different.

RC is certainly not a routine operation and having a Neo Bladder adds a bit more complexity.

I’m very happy with my decision and outcome, but then others are with their treatments and outcomes.

all the best,
Chasam

Those options are the NICE guidelines for high grade NMIBC. I think far too many consultants don't give the choice, they just put Px down for BCG. It's nothing to do with cost, both are potentially high cost - I was told that with BCG there is a 50% likelihood of needing RC eventually anyway. Unfortunately there is also a risk that a recurrence might be muscle invasive which means chemo + RC or chemo + radiotherapy and the possibility that the cancer becomes incurable. 

There is no 'right' choice, it's what you feel is most suitable for you, having weighed up pros & cons & your personal situation. I chose immediate surgery for a variety of reasons and have never regretted it. Maybe you should ask to discuss the options before making a decision. Happy to answer any questions as best I can.

My husband was absolutely shocked beyond words when they said this to him. My cynicism is a bit different, not about cost but about, you would go into surgery because you like doing surgery, wouldn't you?? As others say it is a personal choice, but my husband was also offered a third 'equal' option, Mitomycin, after a post-BCG recurrence. So he took this option and 3 years on has avoided major surgery and is cancer-clear 6-monthly check-up by 6-monthly check-up. We are both extremely happy with this option because he admits he'd be useless at the routines needed for a stoma or neobladder and he  can still make love - which is very important to him as well as me. I have read others' posts on here that they have not lost the ability after RC, but the surgeons can never guarantee the necessary 'nerve sparing' to allow this. So to me you are well on track giving the BCG a go. Many on here have BCG for years and years, dotted with recurrences here and there. A bit like weedkiller on a path, just keep reapplying every time another weed or weeds pop up!

best wishes, 

Denby

Like the above guys have said it comes down to personal choice. I had the same option but was advised that I don't want to miss the boat , so chose RC. Purely because I didn't want to risk missing the chance if it became incurable. I am happy with what I chose and there are pros and cons to both ways which only you can decide. Do look at both though and if it's not too aggressive BCG may be a good option. 

Whatever you do decide try and stay positive with that going forward. I wish you all the best.

Thanks Denny, some reassurance in there for me. I’ve already had the Mytomycin treatment at 6am the morning after my TURBT and happily went on thinking I’d either have BCG or I even thought there’d be no further treatment just a check up in three months.

As I’ve already said, I’ve opted for the BCG but in the meantime I’m going to educate myself on what a RC involves and then be prepared to make educated decisions. Great analogy by the way. 

Hi Lugsy,

not something I’d thought about, the nurse said I was classed as being in the young category made me smile and I’m still relatively fit, despite having diabetes ( I suspect the medication for this may have either been the cause or at least contributing to it)

thanks for your best wishes

Hi Jimmyma2. I had TaG3. So high grade but very early stage.  My consultant says BCG for me is the best course of action.  He told me that he doesn't think I will need the bladder removed. What was your stage? The strange thing is that as an alternative to bladder removal they spoke about BCG which is a treatment only for early stages Ta or T1) as it only works if the BCG gets into contact with cells that are close to the cancerous ones. It then should trigger an immune response that causes your healthy cells to attack the cancerous ones. So, it is less effective for more invasive forms.  If you were offered BCG I think your stage should be a or 1... in which case I would certainly give BCG seriousconsideration...

Morning mpb1963 my diagnosis is the same TaG3 and over the weekend I’ve become more comfortable with my decision not to have the bladder removed until I’ve explored the BCG option.