Recurrence of TCC

Hello Floralgypsy and welcome to the group. Sorry to hear you have a recurrence. If you have been told chemo rather than immunotherapy, then it sounds as though you will be having Mitomycin. Did not go this route myself, but I am sure someone will be along to share experiences. Best wishes. 

My dad has also been told today his cancer has returned. He too has been given the option of chemo into the bladder or bladder removal.  My dad has previously had several doses of BCG but he really struggled with this.  Would be keen to hear others experiences of both of these options. 

Hi Floralgypsy,I’m sorry to hear you have had a recurrence.I can’t help with chemotherapy but some here will be able to advise.Best wishes with your treatment.Love Jane

Hi Peacocks,Sorry to hear your dad has had a recurrence.I had bladder removal and have a stoma.It is major surgery and recovery tends to take several months.I was well enough 8 mths post op to look after my mother full time but I found it tough.You need to be as fit as possible before the surgery.I have managed well with the stoma and got used to it quickly.There is plenty of support and advice here should your dad choose cystectomy.Love and Best wishes Jane

Thank you.  He has been told he has to have a fitness test, fingera crossed he passes this as I think he wants to go for this option 

I wasn’t that fit before the surgery,I’d been ill for at least 9 mths beforehand.The type of bladder cancer I had was a rarer and more aggressive type.My surgeon was very skilled,I am so grateful to him.You can lead a good life after bladder removal.I did find the recovery period hard.I got a lot of support from this forum.I’m back to gardening which I enjoy.I don’t have as much stamina as I did before cancer but I’m hoping I can build that back up.Fingers crossed for your dad.love Jane

My husband had lots of tumours, TURBT, 6 BCG, at check 6 weeks later already had a recurrence. Offered more BCG [we did not then know this could likely work fine, found that out on here], RC or Mitomycin into bladder. He would not have coped well with RC at all and was pretty shocked it was even stated as an equal option at that point. So he had the Mitomycin and is now fine, down to 6 monthly checks. Worth adding that he found it very irritant internally, could not tolerate it warmed nor keep it in as long as he was supposed to [which got worse week on week] but it has still worked.

He is extremely pleased to still have his bladder!

Hope this helps, Denby

Hi Jane, you mentioned rare and aggressive, mine is the sarcomatoid variant, is that yours too or other?

Hi,Mine was a Squamous cell which turned out to be a G3 T3b.It seems harder to find information on the less common types of bladder cancer.I had pre cancerous changes in the bladder for 14 years before they turned into cancer.I was under surveillance and had regular cystoscopies.In 2019 I couldn’t pass urine easily and the cancer was found then.What sort of symptoms did you have ? Jane

Hi Jane, I see that, yes mine is squamous cell, urologist said it is the sarcomatoid variant. Started with perineal pain and blood in urine. Now all removed with prostate and all lymph nodes. I’m told there’s no point with radiotherapy or chemo as my variant doesn’t respond at all to it. Are you told the same and thus a very poor prognosis??