Mitomycin

Hi Pienmash, I'm sure you know Grade 3 is an aggressive cancer. Great news is that at T1 so far it's not invasive. My diagnosis was T1 Grade 2. I opted for BCG to avoid removal. I have completed the full 27 dose protocol, during which the cancer has reoccurred 4 times but always at a lower grade. I think the lower grade was the reason my urology team supported continuing with BCG. I am awaiting date for my next flexi cystoscopy with crossed fingers and bated breath, wondering what would be the next option if the cancer reoccurs. Throughout the treatment I have been weighing up pros and cons for RC in my circumstances. Factors which make me hesitate are my age at nearly 75, the fact that I live alone in a rural location, other aspects of my physical fitness. If I were younger I'd be more enthusiastic. I will be asking what other treatments would be possible....chemo, radiation? Choices this big are very individual.....were you introduced to your Clinical Nurse Specialist? I find talking to my nurse specialist incredibly helpful. She's frank and honest. Sending you best wishes. x

Thanks hero. appreciated. 

I have just turned 59. And I am not ready for RC..who is I guess. If I can get to 65 then I think I will be more ready.

Of course I am continually weighing the risks...bloody thing. Yes both my nurses and surgeon are brilliant. They want me to have he bladder removed because they believe this is the safest option. But then there are others on here who have retained their bladder ...I think If and when it invades the muscle I will have surgery..but of course there are inherent dangers in waiting...

I wish you good fortune.

Oooh gosh these grim prophets... my husband had numerous "seaweed like growths" removed by our old hospital years ago. No follow up not a mention of cancer which with wonderful hindsight I thought was stupid of them - I knew literally nothing about bc then.

Anyway much hectic life later, moving to be near new baby grandson, peeing frequency drives him to new GP. First cystoscopy shows whole bladder looks like "inside out cauliflower" in his own words. Diagnosis G3 Pta. Turbt, 6 BCG, check finds 1 recurrence so 2nd Turbt.  Offer of RC  billed as equal choice with more BCG or Mitomycin. Husband horrified at threat of drastic surgery picks Mitomycin. All that was about 4 years ago and since then 3 or 6 monthly checks. True he's currently awaiting a GA for biopsy of red patch which may be carcinoma [CIS] but is not fazed. And we have had 4 more years' fun so whatever happens won't take that away, and being there whenever needed for grandson until he got to school [he's nearly 6 now].

Unlike Herothedog we've never developed a relationship with a CNS but I find this forum most useful and supportive. BTW my OH is late 70s, a bit older than me, but still determined to enjoy 'marital relations' and not lose the ability.

Best wishes for your deliberations, hoping you can see what a good news story my husband's is for Mitomycin so far,

Denby 

Hello Pienmash. My husband had a radical cystectomy. On 4th October he is 63 but because he was quite healthy he was allowed a neo bladder.  So no bag outside which he was pleased about, as he was worried about his golf swing. He has grade 3. He should of had chemo before the operation in July but unfortunately,  although double jabbed he tested positive for covid for almost a month,. They decided to go ahead with the surgery. I will not lie, it is an awful op. 5 months down the line he is so much better but exhausted however when we saw surgeon end of December, they took 17 lymph nodes & 1 of which was cancerous . He has just started Chemotherapy,  not a picnic. But I fully believe he will beat this xxx His new bladder is working well & only a small amount of incontinence mostly of a night, he usually sets his alarm about 4 hours in. So then he is OK. I wouldn't leave it too long as we were under the impression it was muscle invasive  but had not gone outside the bladder. Obviously it did Whatever you decide, just make sure you are at your healthiest. As strength & stamina is what is needed. I wish you so much luck & love . Whatever your decision x

Thanks KimDav. Appreciated. i take on board your comments and wish you both well. 

Pienmash

Hi Kimdav

Wow I’m guessing you also are going through it bless you. 
I was told for a female it has many women parts to be removed and I’m hanging on. However I hear the words strength and stamina so it’s given me a kick up the backside to prepare as I know it is waiting in the wing!!!

I live alone so I know I will need other help I suppose that’s why I’m holding out!

I wish your hubby speedy recovery and I wish you peace of mind 

much love 

Gizie Cat

x

Hi Denby 

How many treatments of mitomycin did youre husband have ?

Quite a few, I think it was six at the beginning and two or three at later points. Always at weekly intervals.

Denby

Ty think im due to have it .