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8 years 2 months ago #34244 by Flo
Thanks guys for aall the comments. Still trying to soak it all in appt with Vandy is the 11th waiting on the Patht report to confirm what the one here says and what to do after. will keep u all in the look.

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8 years 2 months ago - 8 years 2 months ago #34241 by Cynthia
Flo,

I was 47 when I was diagnosed, and I I was a mess. Scared, not knowing what way to go, knowing nothing about this thing that had invaded my life that was in 2004. Don't start doing research until you know what you are looking for and you will not until you get a full diagnosis. I will give you some links I think you will be interested in if you do end up having a Radical Cystectomy. I have an Indiana Pouch and my stoma is in my naval and you would not know it unless I showed you. I do not know if that is an option for you the type of diversion that is possible is dictated by the placement of the tumors and what margins they need to get. But if it helps there was an informal survey done of people with urinary diversions and when asked what type they would recommend to someone almost all said the type they had. There are pros and cons to all but we seem to adapt to what we are handed and most of us go on an lead pretty good lives. I ask my husband to get certified in scuba diving this winter with me so my Radical Cystectomy hasn't slowed me down much.

We are not going to tell you any of this is easy but we can tell we have been there and made it to the other side. You are doing the right thing you are going to one of the best and by being your own advocate you will help stack the cards in your favor and that is the most important thing at this point. Be kind to yourself if you can afford it a facial or massage is nice but if not a warm bath and a candle couldn't hurt. Be gentle with yourself and others if you can right now you don't need to be handling more than you have to and emotions can run high right now. Of if Aunt Buffy makes you nuts on a good day it might be a good time to be busy if she calls. If you are having trouble handling it do not be to proud to ask your Doctor for something for anxiety, if you will ever have a good reason this should qualify.

We will be here for you every step of the way if you need us.

Here are some links you might find interesting but don't just sit at the computer reading for long periods it can make you crazy after a while, don't try to absorb every thing in a day.

Information on the most commonly used urinary diversions

http://bladdercancersupport.org/index.php?option=com_weblinks&view=category&id=53:urinary-reconstruction-and-diversion

Emotional Effects of Cancer

http://bladdercancersupport.org/index.php?option=com_weblinks&view=category&id=54:physiological-aspects-of-cancer


Financial

http://bladdercancersupport.org/index.php?option=com_weblinks&view=category&id=31:financial-

Radical Cystectomy and sexuality this is a good post and a link to more information.

http://bladdercancersupport.org/index.php?option=com_kunena&Itemid=114&func=view&catid=10&id=19763

Our resource page various subjects

http://bladdercancersupport.org/index.php?option=com_weblinks&view=categories&Itemid=103

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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8 years 2 months ago #34239 by mmc
Flo,

That really sucks! Thinking it is just some benign mass and then being told of us this must be very scary.

However, it sounds like you were sent to the right place. If Pat says Dr. Smith at Vandy is the place to go, then you know you are going to be in good hands. If you are new here, you don't know it but Pat researches tons of information about bladder cancer and about the doctors who specialize in its treatment.

As she already mentioned, an Indiana Pouch may be an option and if you need to get cystectomy it is certainly an option to check out.

Scared and confused usually comes first, often accompanied by anger. The sooner you know what you are truly facing, the better. The unknown is what is the scariest. There are many, many women who have had cystectomies. Some have an Indiana Pouch and others have the external bag. Neither one of these is the end of the world. I'm not a woman and I have a neobladder and (even though I have a few complications) I'm quite happy with it and it doesn't hold me back from anything.

I obviously have no experience with having part of the vaginal wall removed but there are some ladies here who could discuss that with you.

I wish you the very best in this!

Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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8 years 2 months ago #34235 by Patricia
Hi Flo,
Well that was quite a blow for you. But you are in great hands with Dr. Smith at Vandy..he's head of the department and will advise you well. I don't know if they staged it or graded it but i do know its a very rare type.
Don't be frightened about the surgery..i mean its not a picnic but all of us females who have had a cystectomy have also had a hysterectomy and the back of the vaginal wall taken out and if like me you have an Indiana Pouch the urethra also comes out. I do not know if you would be a candidate for that or not.
You're in good hands at Vandy. Let us know how the appt. goes.
pat

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8 years 2 months ago #34234 by Flo
Hello all, i am new to this. Went to Doc a couple months ago complaining of frequency and discomfort during intercourse. She did an exam and felt a mass. So ordered a bladder US found a mass that after a cystourethroscopy the Urologist said it was a mass between the vaginal wall and bladder wall not inside the bladder. Schedule surgery to remove what she believed to be a Fibrocystic tumor no problem should be beighn get what we can and if it is on the bladder wall might have to leave some so as not to laserate the bladder (she left about 20%). Well to everyones surprise the path report called it a Leiomyosarcoma. So have an appointment at Vandy with Dr. Smith on the 11th. According to the urologist i seen that did orginal surgery if the pathologist at Vandy calls it a sarcoma also they will more than likely have to do a radical cystectomy because it is at the tricuspid (i beleive that is what she called it)or neck of the bladder where the ureters empty into bladder and the urethra is located. Because the urethra is involved with the tumor a neobladder is not an option. Of course first emotion scared. I am 45 years old been married for 30 years what now, she says they will have to remove the back of the vaginal wall Dont know what to think feel say. Any words of experience would be greatly appreciated.

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