-
Decision on type of diversion for RC
Hi,
I have almost made my decision for RC (T1G3 multiple sites,>3cm, early recurrance)and I am now researchiing the type of diversion. I’m 48, 3 kids and active and my doctor assumed I would go for the neobladder, however, I think it sounds more complicated than the ileal conduit. Does anyone have any thoughts for me?
Thanks, and bless you, everyone.
Marie -
21 Replies
-
Hi Marie…i’m guessing with your age you’re not into any menopause as yet? So i would definately ask your ob/gyn about replacement therapy. Also there are some surgeons here in the US who do not take the female organs in a younger woman…they feel there is no spread to those organs… nor do they particulary feel that blc is estrogen related so there’s no reason for you to suffer with premature hot flashes and night sweats. I’d definately put it on my list of questions. I actually wore my yam based estrogen based patch..Climara during surgery.
Pat -
Hi everyone,
Thanks for all the info…Maria, how are you doing with your decision? By the way, I’m in Canada, and hope to be speaking more extensively to my doctor soon…definitley need to discuss the Indiana Pouch…he was planning to do a complete hysterectomy too, and I need to find out more about the implications of that for me… I’ll have to admit, I’m pretty scared, but trying hard to keep my chin up…I’ll update things here soon,
Marie -
Marie,
I followed Pat’s example and went with the Indinan Pouch….almost five months now and doing quite well with it…I have just turned 57, love my stoma “Rosebud”; am able to sleep 5-6 hours a night…it does take me about 6 or 7 minutes to do “my” routine but I am able to easily go back to sleep…it was very tough in the beginning as I had so much mucus that I had to cath every 2 hours around the clock but that is how it goes for some of us…I, like Pat, find I am very alergic to almost any adhesive so even now the area surrounding the stoma often appears as a rash but maybe in time that will improve…I hope to be able to return to my job in Jan. or Feb. of this year which is one of the reasons I chose the pouch…I didn’t not want to risk having to cath myself down below in dirty restrooms. I receive only 10 catheters from my insurance and I have good insurance…I clean and dry them very well and so far no infections. Don’t let the doctors influence you too much. They tend to promote what they are comfortable with…and remember, they aren’t the one living with the results, it will be you. Take care, Melodie
Melodie, Indy Pouch, U.W.Medical Center, Seattle, Dr. Paul H. Lange & Jonathan L. WrightZack,
You couldn’t have said it better. Getting use to something you thought would never be acceptable to you is what is happening here at our house. Gene has an outside pouch, now when close friends come over it actually shows them and says, “see my nice stoma”,,oh my god,,,I never in the world thought he would be this comfortable with it to put it on display, only close friends of course. It is very true, whatever your choice it will be your buddy down the road. Ginger
By the way, if you want to see what I was up to in Ecuador, here’s an article about it: http://tinyurl.com/3yhg5j.
I come into the story in the “CLAY, SLIME, AND SILT” part. In the picture of five people standing on the deck, I’m the one on the far right.
One last article:
http://tinyurl.com/2kbox4
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John Stein
One of the qualities we have as humans is that we can get used to just about anything. And I mean that in a good way. I used to live near train tracks, and at first the trains would shock me out of a sound sleep. Soon, I couldn’t hear them at all.
There is certainly no “best” diversion in every situation. I’m perfectly happy with my neobladder and Joe (fearandfight) seems fine with his Indiana pouch. But if our situations were reversed, I have no doubt that we’d both be equally happy.
It’s funny how that works. I was once “boatsitting” all by myself in Ecuador. The boat was tied to a couple of pilings in the middle of a river, with a long cord strung to shore for power. Right after I got arrived, there was a typical third-world electrical problem and for the rest of my stay–an entire month–I had no electricity for lights or power. For the first couple of days it was a tremendous pain-in-the-neck, but after a bit, I hardly noticed. I read more, listened to music by battery, and rowed ashore for meals. I went to bed early and got up early. What started as a disaster (my thinking at the time) became just part of my routine.
In the interest of full disclosure, I was awfully glad to get out of there when my month was up.
“Standing on my Head”––my chemo journal
T3a Grade 4 N+M0
RC at USC/Norris June 23, 2006 by Dr. John SteinI actually met Dr. Bochner when i went to see Dr. John Stein at USC/Norris…Memorial stole him away!! I shall write him….thanks….Pat
Hello Pat,
Dr. Bochner is my doctor at Memorial Sloane Kettering. His phone no. 646 422 4387.
Yes I am on Social Security.
Ellen
trying to learn how to take one day at a time.
RC March 2, 2007
Memorial Sloane Kettering HospitalEllen…who was your doctor at Memorial? I’ve got to find out about this catheter you can leave in……thats an entirely new ballgame for me.
You must be on social security….arent they special? 4 catheters a month. I would ask them how many times they pee a month. If you have secondary insurance its a battle but if you get to the right person they will pick up 80% of the cost of all the caths you need. I’ve been fighting social security for maybe 2 yrs now because of their outdated manuals….they don’t even know what an Indiana Pouch is nor do they particularly care.
And JOe the ileal neobladder is NOT the least problematic for a woman…maybe for you…..we would love to have your statitistics with the neobladder.
http://blcwebcafe.org/neowomen.asp
Read the entire article………..Pat
Hi Pat, I called my daughter to ask how long the surgery took. She explained that what took so long was that they had a hard time getting me under the anesthesia and it took longer to get me out from it. She said the actual surgery took 6 hours.
Ellen
trying to learn how to take one day at a time.
RC March 2, 2007
Memorial Sloane Kettering Hospital
Hello Pat,
Yes my doctor at Memorial Sloane Kettering said I could leave the cath in at night especially anytime I think I have an infection I could leave it in for week. I just do it so I won’t poke around in the night. Its easier for me. When I go an airplane or a long trip in car I also leave it in. I got a cap for it from one of the external bags. I cut a few of them.
My doctor also said I could use the cath for a month. I put liquid soap in the cath and wash in warm sudsy water. rinse, and twirl them like a helicopter to get rid of excess water and air dry them. Before using them I clean it with a alcohol prep pad, put sterile lubricant on. I have not had any infections. In the beginning I thought I did but it turned out to be the mucus coming out through my belly button, its very itchy when it happens. My insurance company allows me four (4) each month.
Best regards,
Ellen
trying to learn how to take one day at a time.
RC March 2, 2007
Memorial Sloane Kettering HospitalPat and Marie,
Yes some have allergies, some get infections, some don’t, thats why we have this forum, we can all share our experiences to help you along the decision making process. What you read about some, will be totally opposite for others. Your case as well will be your experience with your choice of deversion. Whatever you decide I wish you well, Ginger Beane
Hello Marie, I can really understand the difficulties you are facing regarding decision making for bladder replacement surgery. I can’t decide what will be best for me. I am hoping to find a good surgeon who can explain the pros and cons before I make a final decision.
A few months ago while doing my own research, I found this article from the Cleveland Clinic very informative and easy reading:
http://www.clevelandclinic.org/health/health-info/docs/3900/3927.asp?index=12546
I hope it helps and I wish you well.
Maria xx
What about an illeal neobladder, made from small intestines?
Was that ruled out….it really is the least problematic.
Hey Ginger…i got huge reactions to my temporary bag that was in place for 3 weeks…my skin extremely sensitive and i have a latex allergy. Pat
Sign In to reply.
