newly diagnoised and freaking out

17 years 4 months ago #1950 by sghipart
Replied by sghipart on topic newly diagnoised and freaking out
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

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17 years 4 months ago #1949 by Jmema
Replied by Jmema on topic newly diagnoised and freaking out
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

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17 years 4 months ago #1938 by clur
Replied by clur on topic newly diagnoised and freaking out
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

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17 years 4 months ago #1931 by rentanag
Replied by rentanag on topic newly diagnoised and freaking out
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

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17 years 4 months ago #1925 by sghipart
Replied by sghipart on topic newly diagnoised and freaking out
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.

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17 years 4 months ago #1924 by wendy
Replied by wendy on topic newly diagnoised and freaking out
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 ( 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

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