Hi All

Posted by: Bawa in Mitomycinmens issueskidneycystoscopy on Print PDF

I was diagnosed with Papillary Carcinoma (G1pTa) in June of Last year.

I have undergone a TURBT at the Western General Hospital in Edinburgh. A 1 cm tumour was removed, and a one off installation of Mitomycin-C was given. As I was catheterised, I spent 1 night in hospital, and was released the next morning. I then spent a long, long week awaiting my pathology results. My consultant being a very cautious man sent me for an IVU. Fortunately that showed no involvement with my kidneys or ureters.

So far my check cystoscopies have been clear-long may they continue.

I consider myself to be very lucky. I've dodged a big bullet! The treatment I received was excellent. No real complaints. My consultant has given a very positive prognosis. His opinion is that the chances of progression are very remote. Infact, he says that I'm at greater risk from my pre-hypertension which was uncovered during the pre-op exams. So I'm in the process of dealing with that. I'm cycling to work, better diet, joined a gym, etc.

All in all, I'm very hopeful about the future. I'm planning to be around to pick up my pension. Just 23 years to go (I'm 42).

I'm very grateful that this site exists. I have learnt a great deal of useful information. I have also been greatly helped by those of you that decided to contibute your story to the forum.

In the early days, this site was a real lifeline. I felt less lonely-especially during the sleepless nights.

Thanks again. I apologise for not having said this months ago.

[b]28/06/2007 11.43am[/b]

Hi There, Thought I'd update my story.

I've just got back from the hospital after having my cystoscopy. Which was all clear.

I'm feeling high as a kite at the moment. I've just weathered my first year, and although it's been a bit of a rough ride at times, I now feel even more confident about the future.

Anyhoo, I'm going to go for a walk by the sea.

Take care.

Brian





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Wendy
January 17, 2007

Hi,

My sister had the same diagnosis as you and she is now 8 yrs down the road and doing well. She had two recurs the first year but clean ever since.

I have confidence that you will fall on the good side of the stats and stay well. The last I read the risk of recurrence was 38%, the risk of progression around 3% and the risk of death from is about 1%. Those are very good odds in cancer-land, where all things are relative.

Your life will never be quite the same, no matter how good the prognosis. Life long follow up is still necessary, but there is discussion of extending the follow up to 5 yrs after a person goes a year with no recurrence (only for Ta, G1 blc). My sister complains of side effects from years of cystos, mainly stress incontinence. But her doctor from MSK/Sloan in NYC is not saying she can extend the follow up times. We'll see how that one pans out.

All the best, and thank you for your contribution. Most folks with such good prognoses don't hang around places like this!
Wendy


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