Setback

Hi thecodger. Must be disappointing for you. We know this thing has a habit of coming back. On a positive note, it sounds as though it was caught early and can be dealt with. One of the benefits of the regular checks we have. Best wishes.

Hi thecoger, sorry you had that news.  I have had exactly the same (twice) and it was demoralising but fortunately they can whip the tumours out easily. I'm still trotting along. Hope you get a TURBT appointment soon. x

At the moment have had some paperwork explaining that got to wait for a date.Soon as I get will have to get in touch on the phone to have some test and blood test.Then have to to stay a r home no visitors or go out at al fo Two weeks before the date of surgery.Will have to see how it goes.Hope for an early date.

I did have the 2nd operation in the end 2 weeks ago.It went well and no needed for the catheter this time which was good.Also so far no need for any pads just had to use one as going out for a long time as security but was not needed.This time it has taken more time time to get over it now.Will probably will find out more  when I go to the clinic soon in about  a week's time hopefully.

Glad all went well, and you feel over that hurdle. It's great to think... phew even if just for today.... I'm all clear! Hope you get positive feedback from the biopsies, and also hope you have a CNS nurse at the next meeting with the consultant. Mine is fantastic and has made my treatment so much easier. Best wishes x

Thank you .

Had a phone call from the cancer nurse this morning about the results from the operation a month ago. They said it is non-invasive and want to start a 6 week session by putting some Chemo called Mitomycin-C in the bladder. They put in on an empty bladder and leave it there for about an hour. It might start next Tuesday if is possible but will be Tuesday after. Just have to see how things go.

Hi thecodger. Non invasive is a positive in the great scheme of things. Mitomycin treatment is standard for this and I am sure others will be along with their experiences of it. Designed to mop up any rogue cells and help prevent further recurrences. I hop all goes well. Best wishes.

Hi thecodger, 

My tumours were non invasive and after my third reoccurrence I had a six week course of  Mitomycin last year.

It’s a painless procedure, they use a smaller more flexible catheter and it only takes a few minutes. I was usually in and out in 10 minutes. As you say you have to hold it in your bladder for an hour. I went home after my treatment with instructions about bleaching the toilet etc after passing the mitomycin. I had no side effects apart from feeling tired towards the end of treatment. Make sure you follow what they tell you about washing down below afterwards, I forgot once and it was very sore the next day!

The good news is that I have had three clear cystoscopies since. 

Best wishes

Luce x

Good luck with the Mitomycin. I've had that and it is quite painless. For the majority of people it is side effect free. The good news is that once you are in the system, you have regular checks and recurrences can be caught early and dealt with. 

In my case, unfortunately, I had a recurrence afterward and will be starting BCG on Monday.