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Asking for your experience

3 years 6 months ago #52667 by Cynthia
Well she asked......

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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3 years 6 months ago #52666 by sara.anne
Deb and Cynthia...Shame on you both!!!
B) :laugh: B) :laugh: B) :laugh:

Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
Forum Moderator

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3 years 6 months ago #52665 by Debcan
Thank you Cynthia… Good info to think about!
I'll relay the message to Sarah Anne, and ha ha Ha I promise to carry-on these conversations in the other forum... Sorry guys!

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3 years 6 months ago - 3 years 6 months ago #52664 by Cynthia
Deb, We know how hard it is to need to learn a lot fast. Ask everyone questions that is your job and if you can have someone take notes it helps also keep track of your paper work get copies of tests and pathology reports. Here is a link to Penn Med.

https://www.pennmedicine.org/cancer/types-of-cancer/bladder-cancer

As for the answer how to make something not sexy more so, think Mae West and preplanning. A pretty camisole and candle light can hide a lot whether it is age related or surgical. As for the bag itself some have covers made for them as it is more comfortable against the skin and well nothing ever looked worse covered in satin. By the way tell Sara Anne not to make fun of me I am not Dr. Ruth. All joking aside if you have any questions about sexuality just post them in the woman and bladder cancer section and we will talk, we have made the men blush enough already.

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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3 years 6 months ago #52661 by Debcan
Thank you Cynthia..you have helped in the way of being positive. I am so glad to have come across this forum where I can talk to others that either are or have been in the same situation as myself. I will definitely remember to ask the doctor these specific questions about the Indiana pouch as opposed to the ileal conduit.

I live in central Pennsylvania and do not even know how to look for another surgeon for a second opinion. I would hope that my surgeon would be able to recommend a few. Hi ended up with this current surgeon because he is in the same practice as my urologist. What are your suggestions on that?

Lastly, out of curiosity, can you give me an idea how you can make an external appliance appear more sexy… I find that very unimaginable. :)

Deb

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3 years 6 months ago #52660 by Cynthia
Deb,

Welcome to our community. The type of diversion one receives can depend on a lot of factors. There can be medical reasons such as tumor placement to name just one. Doctors preference can be another, all Urologist are taught how to do the Ileal conduit other types of diversion require further training and practice. Another is the patients preference, all things being equal medically ask your doctor about why he does not think you are a candidate for another type of type of diversion.

There are pros and cons for all type of diversions. I have an Indiana pouch I had all of your fears and an allergy to adhesives. I had to look for the right Urological Surgeon afrer talking to three of the best, I traveled from MA to Chicago Ill for eight weeks in 2006. The thing about diversions is that you do not want anyone to do one for you that does not have a lot of practice. My local guy only did three to five llael conduits a year the one who did mine did three to five a week...true story. I had pelvic radiation prior the Radical Cystectomy and that made it harder to find the right person it might be easier for you, let us know what state you are in if you want to seek a second opinion. The point being if you are able to and you wish to look into other diversions you may have to get a second opinion.

For me a Indiana pouch has worked well. I have a stoma in my naval, use a catheter about every four hours. I find it convenient it is continent and if you didn't know me you wouldn't know I had it. I carry a makeup pouch in my purse with disposable supplies. I can honestly say it has not impacted my life that much. Yes there was healing and getting used to it but you do get used to it. And the same can be said with the other diversions. Some times we do not get to chose what type of diversion you get for the reasons I mentioned above, but we adjust. My Mom had a saying "make the best of what you have". There are ways of making an external applicance more sexy if that is imaginable we can talk about things like that when and if they become a consideration. That is what we do here trade information offer support.
I hope this helps a little if you have questions ask away.

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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