Newly diagnosed please help

14 years 8 months ago #1111 by clur
Newly diagnosed please help was created by clur
Hi
I have recently been diagnosed with stage 2 aggressive bladder cancer.It seems my best option is radical cystectomy with diversion which due tot he position of my tumours will include a hysterectomy and removing my urethra the front wall of my vagina and my ovaries.
I am absolutely scared to death I am 41 and other than a few hours after the birth of my children and out patients appointments to diagnose my cancer I have never been in hospital.The surgery is planned for the 23rd of August and I cant stop crying.I am so worried about the surgery and the impact its going to have on my life my appearance and my relationship with my husband. I accept that I need it but that doesnt stop how I feel I have always looked after my body and have no risk factors for bladder cancer so its a huge shock.The thought that in a weeks time I will be menopausal and weeing out of a hole in my side and all the rest is freeking me out .
I am sorry if I sound dramatic but would so appreciate any advice in dealing with this from people who have been there.
Thank you x

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14 years 8 months ago #1112 by Rosemary
Replied by Rosemary on topic Newly diagnosed please help
Dear Clur,
First of all, you have a total right to freak out. It might be a good idea to freak out here, amongst us who understand.
Have you had a second opinion? It almost sounds like you haven't had a minute to think.
There are lots of people here who have been through this, and it works out fine.
Just keep talking and asking questions....
We are here for you....

Rosemary
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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14 years 8 months ago #1114 by ed_b
Replied by ed_b on topic Newly diagnosed please help
Hi Clur,
I'm so new, tried to send you a note, but hit PM instead of reply. Did you get it?
The freak out part will not last forever, the "let's get this over with and get on with life" part will kick in soon.
Thinking of you...ed

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14 years 8 months ago #1115 by Mike
Replied by Mike on topic Newly diagnosed please help
Clur, I have sent you a PM. Check you messages. Hugs.

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14 years 8 months ago #1117 by rentanag
Replied by rentanag on topic Newly diagnosed please help
Clur,

Rosemary's right about having every right to feel as you do, and many of us have been there that's for sure.  She also asked if you'd had a second opinion, and I want to add to that my question about are you seeing a urologist in a large medical center or teaching hospital?  Another question is whether or not your surgeon has performed this particular procedure previously on women?
You also mention that because of the location of your tumor they will have to perform this particular procedure, but let me say that this was what was thought when I was being staged as well.  However I ended up with a RC, hysterectomy, and ileal orthotopic neobladder (which means I'm hooked up to my own plumbing -urethra), and I didn't have any portion of my vagina revised as every other organ removed from my body was negative for cancer (I'm also two days away from being cancer free for 2 1/2 years and I've only had surgery-no chemo).
My point in mentioning this is there could be a possibility this might be true for you, but of course you need to discuss it with your surgeon, or you could also discuss it while obtaining a second opinion with another urologist.  
You mention you're scheduled for surgery on 23 August, but you didn't mention when you were diagnosed.  The time between my diagnosis and my surgery was about seven weeks, and much of that time I spent researching on the internet and asking questions of others.  If you're feeling rushed into this you might consider taking a little more time making your decision, and doing that won't necessarily cause you any problems with your disease progressing.  This is your decision, not something you should feel forced or rushed into.
Continue asking questions about your situation, and if your doctor doesn't want to answer them or tries to rush you into this I would consider going to another doctor.  Know that we know how you're feeling, and we want to help if we can.  You're in our prayers...

God Bless

Lou

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14 years 8 months ago #1118 by clur
Replied by clur on topic Newly diagnosed please help
Thanks for all your replies
In answer to some of your questions and comments
I was diagnosed three and a half weeks ago.I am in the UK but have private health insurance.My own consultant has refered me to a specialist centre and organised a second opinion as a matter of course.I am very happy with the care I am getting and confident in the decisions being made I just hate the decisions.
I have three tumours in my bladder the largest is very low and is starting to grow into the sphincter which is why I cannot keep my own plumbing but they are hoping to do a continent diversion.I know it has to happen as I am uncomfortable and because of the invasion into the sphincter I have had to self catheterise to pass urine for the last ten days which is why the surgery has been brought forward
I feel very angry that this is happening to me which I know is childish.Every morning I wake up feeling that its been all been a dream and someone will say oops its been a big mistake we have you records mixed up.I have been given sleeping tablets which are a god send.
Thanks I am so glad I found this site x

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