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  • My mum has bladder cancer and I’m scared

    Posted by Moglie on March 8, 2010 at 1:48 pm

    Hi, my name is Moglie.

    My mum has been told she has bladder cancer, she has had a cytoscopy and goes in to hospital on Wednesday to have the tumours removed.

    She also had a CT scan which apparently showed no spread to any other organs. I guess over the next few days we will see what we’re dealing with. Mum says she has only had symptoms just before Christmas and the nurse was encouraging mum the other day to proceed with a knee replacement (which I’m hoping is a good sign :huh:

    We’re in the United Kingdom and I wondered whether anyone else on here was also from the UK?

    I don’t mind telling you, I’m reeling, I’m 41 years old and married, but I feel like a little kid who has been told they are going to lose their mum.

    This website is awesome, you guys are just amazing, I hope my mum is able to find the strength and determination to beat this, like so many of you have.

    Moglie
    (I hope you don’t mind a Brit using your site!!)

    Moglie replied 14 years, 4 months ago 6 Members · 10 Replies
  • 10 Replies
  • Moglie

    Member
    March 11, 2010 at 8:14 am

    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

  • Guest
    March 10, 2010 at 5:49 pm

    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

  • Moglie

    Member
    March 10, 2010 at 4:26 pm

    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
    x

  • Moglie

    Member
    March 10, 2010 at 11:02 am

    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

  • Rockyiss

    Member
    March 9, 2010 at 1:16 am

    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

  • Moglie

    Member
    March 8, 2010 at 7:51 pm

    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
    x

  • Guest
    March 8, 2010 at 6:57 pm

    Hi Moglie,
    I don’t know where you are in the UK but its my understanding that in England as well as Germany bladder cancer patients are being referred to the larger hospitals that deal with more bladder cancer. I hope this is the case with your mum.
    Its a waiting game right now until pathology comes in and then if policy in the UK allows a second opinion and re-TURB within 2 to 6 weeks as is recommended here in the states.
    Keep us updated and try not to worry to much until you know what you are dealing with.
    Pat

  • Melodie

    Member
    March 8, 2010 at 6:34 pm

    Moglie,

    Welcome! We are pleased to have you join us. We have some here who are regulars and others who visit off and on, so not sure how many UK users we have at this time. I’m sure others will jump in with encouragement, support and information. You will need to give us more specifics…sounds like you are headed in the right direction by visiting this site and being there for your mum. God bless. Hang in there…we are here to help…please give us more details.


    Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. Wright
  • gkline

    Member
    March 8, 2010 at 4:50 pm

    Moglie, This site is FOR EVERYONE! You are so welcome here!

    Sorry to hear about your mom. But it appears as if she has caught it early and can now go on with taking care of it. This cancer is very curable and there is always hope that she will survive this to encourage you for many many years to come. :laugh: :laugh:

    Please make sure you have a VERY Positive attitude. There will be treatment, but she will get through it and soon become another cancer survivor.

    There is a map of this journey that documents what steps to take on the way. Mike has posted it on this site. If you cannot find it, I am sure it will find it’s way to this thread.

    This is a great site for information and for support. You will find people who can calm your fears and help in direction for care. But the one thing you will find, above all, is genuine compassion for you the caregiver and patient.

    As we say here so often…there are no wrong questions. Everything is on the table.

    George


    Light a man a fire and he is warm for an evening.
    Light a man ON fire and he’s warm forever.

    08/08/08…RC neo bladder
    09/09/09…New Hip
    =
    New Man! [/size]

  • humpy

    Member
    March 8, 2010 at 3:16 pm

    Moglie, welcome to our site. We all were scared, but your mum is taking the correct steps. Bladder cancer is not the end of the world. You’ll see, everything will work out just fine. Keep us posted. There are alot of good people here, that will help you through this. Jim


    Age 54
    T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
    Neobladder 5/19/2009
    Prostate Capsule Sparing
    U of M Hospital, Ann Arbor, Michigan

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