Next steps??

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Hi - hope all is good as...

after 2 rounds of bcg and recently a round of mitomycin...they still found a tumour , 1 cm and st 1 g3. I am feeling weird about it , with a range of strong emotions from when I found out yesterday. It's like options for treatment have run out and now I am faced with the stark choice of removal or 'watchful waiting'. Has any one got a view on these stats please:

-For stage 1 high grade non invasive , there is a 70% of re-occurrence and a 20% chance that it will invade the muscle

- There is a 10-30% chance that cancer will return once you have the bladder removed.

Both these figures are from BCAN presentations by credible surgeons.

I have a meeting with my surgeon on 10/6 and I would like him to give me an idea of life expectancy/impacts on quality of life If I leave it and it does enter the muscle v having bladder removed.

On the face of it the 20% chance it will invade muscle seems like decent odds to me v the 10-30% chance it will return once the bladder is removed.

For the first time I am now starting to feel a bit panicky as there is so much more stuff going on too.

I am 59 , have been single for quite a few years (not sure I can cope with removal recovery on my own with out it affecting my mental health) and I am in relatively good health otherwise.

Thanks for reading- I just needed to share...

Pienmash

rily over 4 years ago

Hi Pienmash. I know it's difficult not to overthink things when there is no definite plan in place and you are waiting for appointments. I personally never bothered with the statistics as I believe we are all individuals. Everyone's cancer is different even though they are lumped together in basic groups. The benefit of this group is that you can share your thoughts with people who understand. Best wishes.

Best wishes to All, rily.

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Teasswill over 4 years ago

Statistics only give you an idea of the level of risks (or not) that you are taking, but no-one can predict your personal path. You are doing the right thing by fully discussing the options with your surgeon. My understanding is that having already had recurrences, the risk of muscle invasion at the next one becomes higher (but I might be wrong on that). The issue if it becomes muscle invasive is that it can become incurable. It is an immensely difficult decision to make, but listen carefully to your consultant.

If you need to ask questions from anyone who has been through surgery, I am happy to answer. Hope you get all the information you need on 10/6 to help you make a decision.

winkers60 over 4 years ago

Hi Pienmash,I too think it is important to take guidance from the consultant.My surgeon oncologist discussed everything at length and my sister and I asked questions.I didn’t have any choice but bladder removal but I don’t regret the surgery.Best wishes Jane

Former Member over 4 years ago

When discussing with your surgeon, also discuss the margins. They love talking about margins. For yourself, you are interested in what comes out as well as the bladder. I lost my bladder, prostate, seminal vesicles plus no erection.

Pienmash over 4 years ago in reply to Former Member

Thanks Coojee. What do you mean by 'margins'?

Pienmash over 4 years ago in reply to Teasswill

Thanks Teaswill. I came across this v interesting articlw which kinda sums up my approach at mo:r.search.yahoo.com/.../RS=GGQQv2jMs4jAJqVTb8MZZ2Ra02A-

Teasswill over 4 years ago in reply to Pienmash

Oh, yes, a lot of that rang bells with me.

Former Member over 4 years ago in reply to Pienmash

The margin is how much perfectly good tissue they take out along with the bad.

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