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  • 10 months 2 weeks ago
    #42361
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  • betsyj
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emo Question for ladies with IP

Hello all,

I am a 43-year-old mother of two young girls, and I am more than halfway through with chemo for bladder cancer (bladder muscle wall invasive). I have surgery scheduled for August 15th, but I have a question for others who have been through this-- specifically, for those of you who chose CCP or IP.

How do you feel about your abdomen\'s external appearance, now, post-op?

I have a fair amount of loose flesh from my pregnancies. I have a feeling that I\'ll lose a little weight after the surgery, given what people generally have to say about their digestive systems adjusting to the changes. But even if I weren\'t to lose a single ounce, I used to think I might want a tummy tuck someday (see above re: loose flesh). I don\'t think a plastic surgeon will want to mess around with me post-CCP, though.

That\'s why I\'m asking how you feel about your appearance. I know bladder cancer is considered rare for women, and it does seem to be affecting women at younger and younger ages. I want to be able to discuss this with my surgeon using real women\'s experiences (without names, of course). To date, I have had responses from two women with very different body shapes on this subject, and neither one of them are happy with their post-op appearance. I just don\'t think we should have to settle for that.

There was a time when breast cancer patients lost their breast(s) with no attempt at reconstruction, but now? No way! So why should bladder cancer survivors leave our OR\'s looking worse than we went in?

Obviously, the most important thing is survival. But I have half my life ahead of me, a husband I want to be physically intimate again with (someday!), and all kinds of fun to have. I\'ll have all that, I know-- but feeling attractive (okay, I\'ll settle for \"normal\") would sure help! Will you please let me know about your experience to help me with mine?

Thank you in advance,

Betsy
Private Message 2013-05-19 23:10:34
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  • 10 months 2 weeks ago
    #42362
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Re: Question for ladies with IP

Hi Betsy
Sorry you have to be here but it isn\'t the end of the world.
I do n\'t think that I can help you because I have an Ileal Conduit with an external pouch. I was 68 when I had this done and to be honest with you I don\'t care what my belly looks like as long as I am here. I did lose about 36 pounds after the surgery, I was really sick, I really needed to lose it too. I am now maintaining the loss and am very happy with it. I even wear my tops tucked in, even with the Ileal Conduit. Good luck with your surgery and in no time you will be back to normal.
Barbara
Dx 4-28-08
pT3a no mo
Rc with Ileal Conduit on 6-09-08
2nd surgery on 6-27-09 for ureter leak
Renal failure on 7-01-09 nephy tube and then stent on 7-09-09
so far so good
Private Message 2013-05-19 23:10:34
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  • 10 months 2 weeks ago
    #42364
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  • mmc
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    • Mike

Re: Question for ladies with IP

I am not a woman but I do know that women can have the stoma for the Indiana Pouch located at the navel. So....nobody can see it no matter what.

However, I have no clue about the the surgery scar. I suppose you could ask the doctor if a plastic surgeon could do the sutures. Insurance may not cover that but if it is really important, it would be something available. I remember years ago when my father demanded that for my sister when she had to have stitches.

Losing weight immediately after the surgery is common but so is gaining it all back. Men or women.

Good luck with everything. Live first, the rest is secondary at best. :)

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 upper tract metastases(at 53)

My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Private Message 2013-05-19 23:10:34
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  • 10 months 2 weeks ago
    #42365
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  • Cynthia
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Re:Question for ladies with IP

I have had an IP since 2006 my stoma is in my naval. With time the surgical scar has faded but is still there. I was 47 when this all started and had the same concerns My choice of an Indiana has always been a good one for me in my opinion. It has once healed and matured been dependable and has no impact on my sex life or my body image.

A woman once posted here with the same issues and she talked to her Urologist and a plastic surgeon\'s and they worked it out so that the plastic surgeon did a tummy tuck and then the final closure and it worked out for her well. I imagine this would depend on the doctors involved and the individuals health due to the extended time for the complete surgery. But at the time I remember thinking I wished I had asked. Even if you do lose weight after many of us tend to gain at least some of it back.

Hope that helps keep posting I find it helps having other to hang with that truly understand.
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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Private Message 2013-05-19 23:10:34
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  • 10 months 2 weeks ago
    #42368
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  • betsyj
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Re:Question for ladies with IP

Thank you, Cynthia! I am glad to hear you\'re happy with your choice of the IP, and I\'m glad to hear that your body image and sex life are normal-- those are big concerns for me, obviously.

I will be talking to a surgeon this coming Monday and sounding him out about his experience with IP-- thank you again for sharing your experience! I\'m especially glad to hear that it *has* happened that a woman has asked for and gotten a plastic surgeon to \"scrub in!\"

Take care,

Beth
Private Message 2013-05-19 23:10:34
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Question for ladies with IP

Oh, this totally made me feel better about my decision to go with an IP.
I am in my last cycle of chemo (M-VAC) and I have surgery scheduled for April. I'm terrified about the surgery having never had anything so intensive done before. They plan to do a hysterectomy, lymphandectomy, bladder removal and reconstruction for an IP. I know that my post isn't necessarily related, as I don't have children, but I'm interested in what recovery time looks like and how difficult it is to "train" the bladder post-op, as well as life post-op. My nurses researched the IP and said they thought it was the better option so that my genitalia wasn't "medicalized" -- and I agree with them. I'm glad to hear that your body image wasn't affected too much and your sex life either. So good to hear.

I'm 35 with squamous cell carcinoma of the bladder. I'm hoping for awesome scans on my return to Mayo in April and an easy surgery, whatever that looks like. Any feedback on life with IPs, surgery, or life post-surgery would be greatly appreciated.
Symptomatic: July 2012
Diagnosed: October 2012, Squamous Cell Carcinoma, muscle invasive, stage II or III
Surgery Date: April 10th, 2013 (Indiana Pouch)
Private Message 2013-05-19 23:10:34
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