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My mum has bladder cancer and I\'m scared

8 years 9 months ago #30795 by Moglie
Hi Pat, yes she is in a major hospital with an specialist urology wing with doctors from the South West of England all working from there.

I don't think they had the results back from pathology, but the surgeon who did the op yesterday did say it was muscle invasive, though it hadn't breached the wall and that she would start mum on chemo bringing her back in about 3 weeks time. She made no mention of taking the bladder.

However,I've read so many blogs about people with this disease and most of them say when it gets to muscle invasive, i.e. T2 onwards to give yourself the best chance of beating it, is to go for a radical cystectomy and there are plenty people post 4 / 5 years following a RC living a near-normal life albeit sometimes with a bag.

I'm just worried the med team will waste time trying to save the bladder when the best option is just to get it out.

Do you all think that I should wait for the staging to be done or should I start to suggest gently to mum about considering the bladder coming out. My mother is a very practical lady, if I said that it wouldn't shock her.

I feel like I'm on the edge of the grand canyon just about to fall over the edge into despair and heartache.

Best wishes
Moglie

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8 years 9 months ago #30770 by Patricia
Moglie..is your mum at a major hospital center? Thats the fastest pathology i've ever heard of. If its invasive its into the muscle and thats determined by the pathologist if the surgeon got enough of the tumor including part of the muscle and secondly not removing the other tumors is very strange..tho very often they are of the same stage they can also be different stages..
I wish i knew more about how the NHC works in the UK but if you can get to a major hospital that deals in lots of bladder cancer i would recommend a second opinion immediately.
Something just does not sound right about this..i would make a contact with this group.
http://www.nchod.nhs.uk/NCHOD/compendium.nsf/ba72ad1afe2b0abf80256fcb00539d37/d14216eb43b3edba652570d1001cb7da!OpenDocument
There is a contact tab at the top.
pat

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8 years 9 months ago #30764 by Moglie
Hi All

Just back from hospital and mum looks ok, following her op. The surgeon didn't remove hardly anything as she wants to send a biopsy off for lab work and then get mum back to remove the tumours (she didn't mention having to remove the bladder). She also said to mum about doing chemo before she has the op?

The surgeon confirmed it has not gone through the bladder wall, however it was invasive.

When mum told me it was invasive (I don't know how much yet) I just lost it. I was trying to be so brave, but now I"m back to two weeks ago, when I first heard of her cancer. I know there are many levels of "invasive" but please tell me that there is plenty they can do, even for invasive?

I was trying to prepare myself for the word invasive, but nothing can prepare you for that.

Moglie
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8 years 9 months ago #30754 by Moglie
Thanks Rocky, I keep holding on to the really inspiring stories that you guys talk about on here. You guys are my hope and inspiration at the moment. My mum doesn't go online (hates technology) but I tell her all about you all and that there are people beating this disease all the time.

Mum is in surgery this morning. Apparently dad said the nurse said they are pretty confident the tumours are contained and not broken through the bladder wall, but that they might not remove all the tumours as they want to put a biopsy under the microscope to see what they are dealing with before they recommend a course of treatment. Of course this then scared me thinking, why aren't they taking it out straight away, are they worried she has small cell carcinoma? I just wished we had the results already.

Sorry I'm good being strong with my parents and on the phone, but when I'm on my own this really worries me big time.

Hopefully I'll know more going into hospital this afternoon.

Moglie.x

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8 years 9 months ago #30730 by Rockyiss
Hi Moglie, I had five tumors taken out and the next day I was out playing in the snow with my grandkids , the day after that I went skiing. I was 53 0r 54 at the time.
Hearing the word cancer can scare anyone . My brother also had a tumor taken out four times and no other treatment and ten years later there was no sign of bladder cancer.
As far as you being from the Uk, welcome, I hope you find all the info you need on this sight , there are very kind people here. Rocky

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8 years 9 months ago #30729 by Moglie
Thanks guys for all the replies, it's lovely to think of you all across the "pond" taking the trouble to write messages.

Just spoke to mum, she just wants to get on with the op on Wednesday. She's been told to expect 2 days in hospital with followup after 6 weeks and then a 3 monthly cystoscopy. Apparently the nurse said the tumours needs to go under the microscope to check its cancer, but that is what they think it is? Mum said on the camera it looked like seaweed!?

I know we won't have the staging results for a week probably, but I'm just keeping my fingers crossed that the op goes well and they don't have to take any drastic action during surgery.

I'll come back with more information, once I know, but I really do appreciate your support, this is certainly the most scared I've ever been in my entire life!

Best wishes
Moglie
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