Home Forums All Categories Muscle Invasive Bladder Cancer newly diagnoised and freaking out

  • newly diagnoised and freaking out

    Posted by sghipart on November 5, 2006 at 10:52 am

    I am a 54 year old single female, raising my grandson and they are going to take my bladder and maybe more. I am so scared, ashamed, alone, and feel as though I will never find someone to be intimate with again. :'( I have to decide what kind of reconstruction I want and am leaning toward the neobladder. I keep reading about leakage problems with other systems. I know I have to have this done as I have stage 2 invasive cancer. It is still contained thank God! but I want it out asap before it can spread beyond the walls.

    sghipart replied 17 years, 11 months ago 9 Members · 12 Replies
  • 12 Replies
  • Sghipart

    Member
    November 8, 2006 at 10:57 am

    I have to agree that finding this board was the best thing. Your support is incredible. Sometimes I just sit and cry as I read your posts. Not bad tears, tears of relief to know I can get through this. I have tried the board at uoaa and it is good but this is way better. I am glad to hear that U of M is very good. It is so hard to know if I am making the best choice but I know it is definitely better than the local little hospital. The coroner is the doctor they use to scrub in here. Not very comforting. LOL

    Sandy

  • jmema

    Member
    November 8, 2006 at 10:07 am

    Hi,
    I also know just how you feel. When you are first diagnosed your mind is like flying post it notes and you can’t seem to settle down. Claire kept telling me the anticipation was greater than the doing and she was ABSOLUTELY right. Once you are in treatment you seem to go along with the flow and in a strange way you feel more in control. Finding this board was the best thing because everyone has had the same experience and lots of good advise.
    My best wishes and prayers are with you.
    Jean

  • clur

    Member
    November 7, 2006 at 9:39 pm

    Hi
    I know just how you feel I was diagnosed this summer and have gone through surgery and now chemo.
    I am in my early 40s with three young children who need their Mum.Waiting for surgery and the decisions you have to make now are the hardest part of dealing with this I found once your on the treatment treadmill its easy.
    Look after yourself if I can help at all please PM me I ususally check my messages daily.Its easy to feel very alone with this diagnosis this website is fantastic .
    Take care
    Love clur
    x

  • rentanag

    Member
    November 7, 2006 at 7:15 pm

    Hi,

    I thought I’d add some words of encouragement here by letting you know I was 55 (female) when I was diagnosed with T-2 fast growing and deep muscle invasive BC, initially they thought at least one lymph node near my bladder was also involved.  Fortunately my disease was contained within the bladder only, and I was given an ileal orthotopic neobladder (hooked up to my own plumbing).  On 17 November it will be two years and nine months since my surgery and I am still cancer free and all of this with surgery only, no chemotherapy.
    I’m not saying it was a walk in the park, but it is possible to live a life close to the same life you were living prior to a cancer diagnosis.  Some people even say they begin a new and better life once they have this diagnosis and their treatments, and I think that’s because they see life differently.
    Read through the storyboard section and you will find many stories from people with all sorts of different trials within their disease and many have a good result, but there are some that aren’t so fortunate.  But reading the sad stories perhaps gives you some information that could help you in your decisions for your particular situation.
    Do keep asking questions, and like you’ve done let us know if you’re having a bad day or even a great day.  We’ll try to encourge you when you need it, and we’ll cheer with you when you’re victorious.

    Lou Graham
    RC/ileal orthotopic neobladder 2/2004

  • Sghipart

    Member
    November 7, 2006 at 10:19 am

    Thank you for your words of encouragment. It really is helping. I am in a better place today. Somedays I am not somedays I am better. I am trying to stay positive. I found out yesterday that my tumor is a pT2 and is a papillary.
    I think that is a better one to have then some of the others it could have been.

  • wendy

    Member
    November 7, 2006 at 10:18 am

    Hi,

    U Mich is a great place. You’re lucky to be able to go there for surgery. The doctors are tops.

    I know a whole lot of women with neobladders. Also with internal as well as external pouches. None of them seem to be horribly discontent, in fact almost everyone seems grateful to be alive. The incontince thing is not always a problem, I have a feeling more women get hypercontinent which means they have trouble and need to catheterize through the urethra if they’ve got the neobladder. But they don’t complain, it doesn’t hurt…you get used to a lot in this game.

    I had a mastectomy 7 yrs ago. I’m married. Treatments made me very fat, I gained 60 lbs the first year and was not skinny to begin with. Nobody but nobody in my life cared the slightest that I was lopsided and fat. I couldn’t wear a prosthese for over 3 yrs because of nerve damage around the scar that was excruciating (doesn’t happen to everyone, I was lucky). I seem to have lost my vanity. I don’t have cleaveage anymore and that had been one of my most attractive qualities. Oh well! If I can walk around naked and still have a husband, I would hope you could have a neobladder or Indiana pouch and still find a lover.

    Many women in our discussion group (http://blcwebcafe.org/listinfo.asp over the years have ended up with their bladders out, external pouches and still remain happily married. Once in a while cancer breaks up a marriage, this happens to the men too, it’s horrible and I couldn’t bear to think about how I would feel if that happened to me.

    Like Greg said…if Heather could snag Paul with one leg….hey. There is hope!

    Don’t despair. Do what you have to do to stay alive and well. The world is a beautiful place.

    Good luck with things.
    Wendy

  • Mikmckna

    Member
    November 7, 2006 at 12:09 am

    Hello,

    I am originally from MI, 45 minutes north of A2. There are a few members that had their treatment at UofM and I heard wonderful feedback so your going in the right direction. Please keep in touch and know that you are not alone. I could not imagine feeling the way I do now, just 3 mos post op, when I came home from the hospital. Just think… HAPPY FACE AHEAD :D


    Believe in yourself,
    Mike
    T1-G3, CIS
    RC w/ Neobladder 8/22/06
  • Sghipart

    Member
    November 5, 2006 at 11:16 pm

    WOW! Thank you all for your prompt responses. I am still freaking out but it helps to know I have a place to do it now. A couple of you made me laugh. Thanks it helps to laugh. I have an appt. on Fri. at U of Michigan to see if they will do the surgery there. I live in a small town where the only option is an external system and I just don’t think I can do that. I am praying they will admit me right away and get this cancer cut out before it spreads any further. They seem to respond quickly to other cancers. Many people from my town go up there for treatment.

  • seabay51

    Member
    November 5, 2006 at 8:29 pm

    Dear sghipart,
    I am 51 and although a man I too experienced some of the same concerns you have. Let me say to you, you will not be any less the woman you are now. You can probably see by this site alone just how many people there are walking around out here with a neo bladder. In fact stop and consider how many people you have passed today who have had the procedure and you don’t even know it. I was diagnosed with bladder cancer and had the RC / neo bladder surgery on Sept 22 this year. I am now going back to work next week, most people return back to their normal lives sooner. The small life changes you will have to make will not be noticeable to anyone but you. Let me say that when I was first diagnosed I lived on this computer researching every thing I could find on bladder cancer and any related topics to do with neo bladders. I drove myself crazy! I am lucky enough to have a great doctor who answered all my questions and concerns. Make a list of questions for your doctor and don’t feel ashamed or embarrassed about any of those questions. Knowledge is great and will help you through this time. My heart goes out to you, I felt the same way and I am doing great now and so will you. I had my grandson over this week end and nothing has changed, he still love’s me as much as I love him.
    All of us on this site know how you feel and are pulling for you.
    Best wishes Steve

  • mike

    Member
    November 5, 2006 at 5:59 pm

    Hi,

    to quote Monty Python – Always look on the bright side!

    You are 54 and you KNOW you have bladder cancer just think if you had bladder cancer and DIDN’T know.

    Now you can walk down the street with your head held high and have the certain knowledge that all those people you pass might have cancer and not know it but you KNOW and you are having it fixed! Do you realise that at the moment out of any 5 people you pass in the street 2 will have had or will get cancer.

    This is not a disease to be proud, ashamed, indifferent or clandestine about. You very soon get over the natural embarrassment of its location – be it bladder, testicles, vagina, rectum or the tip of your nose – the damned thing has gone wrong and wherever or whatever it is it needs fixing. Hey I’m a 60 year old guy and I’ve had so many nurses peering up my penis I’m beginning to think they are doing a rerun of Bridget Jones’ Diary in my bladder but this time with less clothes on! [then I got bladder cancer! Yeah dream on ;)].

    Would you be ashamed if your leg fell off? Would that make you worried about intimacy in future relationships? If at 54 you have only your physical apearance to impress with I hate to tell you but you are already treading on thin ice!! Time and tide wait for no man and sure to hell gravity ain’t kind! Anyway – anyone on the list whose leg fell off Paul McCartney has a vacancy ::)

    This Challenge is just what it says on the tin A Challenge and one that will increase your personality, make you more able and willing to cope with the insecurities of others and give you a whole raft of new friends.

    Always look on the bright side of life.
    At least when you go to watch Life of Brian or Borat or any other really funny movie, after the op there will be none of the risks inherent for many women over 50!

    When is your op? I’m having one tomorrow! Strapped up in gyny stirips with a bunch of masked bandits stealing bits out of my bladder whilst I watch the burning, boiling and cutting on a TV monitor! I’m so well known in the hospital I keep my trousers on in the canteen or people would remember my name fortunately its not the face they study most of the time – except in the canteen! :-/

    I hope your op. goes well and in 10 years when the guy you are intimate with keeps sprinting to the toilet because of his prostate you will at least know that what goes around comes around! 8-)

    There is nothing to be ashamed of, all that you have is bladder cancer – don’t forget life is a sexually transmitted fatal disease, it is what you do with the symptoms in between that count!  ;)

  • rosemary

    Member
    November 5, 2006 at 2:32 pm

    My dear,

    I am 54 and alone, but not raising my grandchild. I can imagine that this fact alone, would make you extra scared. I also share your concerns about intimacy, though so far, I have been able to keep my bladder.

    Please stay with us, and don’t be ashamed or afraid to share anything.

    You might be surprised to find how connected you are to everyone else.

    Hang in there.

    Rosemary


    Rosemary
    Age – 55
    T1 G3 – Tumor free 2 yrs 3 months
    Dx January 2006
  • Mikmckna

    Member
    November 5, 2006 at 1:15 pm

    I am sure yur are freaking out but rest assured, it gets better. I learned I had BC and before I knew it I was having it removed. I chose a neobladder as well. There is a learning process but I was just thinking the other day that it’s just become normal.

    It would be too easy for me to say don’t worry and all because I know it’s impossible not to but do keep in touch. There are plenty of people here with all kinds of support and advice.


    Believe in yourself,
    Mike
    T1-G3, CIS
    RC w/ Neobladder 8/22/06

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