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Indiana poch

1 year 11 months ago #52585 by Cynthia
I am not a doctor all I can tell you is what I have observed. My pouch is 8 I know a woman who has on that is I believe 17 out of RC plus the people I see here. I have never known anyone who has has the problems you are asking about. That doesn't mean they don't exist. I will tell you a story I talked to three of the tops in the country before my RC. I am very allergic to tape a bandaid will peel the skin off of me in a few hours so I was very worried about wearing an external bag. One did not like anything besides the external bag and did not have a good word for neo's or Indianas. I knew he was not my surgeon due to the fact that he did a high volume of RC's but they were all doing the same type of diversion. The second and third told me that I was not a candidate for a neo due to spread to the ureathia. But that they would be happy to do either for me. The third did a very high volume of Indiana's and liked them, I chose him. My advice is this get a second opinion and then make your informed decision. There are pros and cons with all diversions none are perfect but what ever you chose you will get used to it and find your new normal.

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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1 year 11 months ago #52584 by DannieC
Yes my surgeon said he didn't like the ip because a lot of patients get anxious, wether it be from pain or having a hard time passing the cath. This seems to cause wear and can even puncture the stoma. I have a high pain tolerance and figure I can keep myself calm during the cathing. I know it will be a long process getting use to the procedure and schedule of cathing, but I think it will best fit my life style. I climb trees for a living, and though I know that is coming to an end. I have a three year old son, we play and roll around and he sits on my lap a lot. So the ic doesn't seem to be a good choice for me. In my opinion they all suck, but we have to try and pick the one that we feel the best about. I wish you and your husband the best and you will be in my prayers. I pray a lot for the guidance in making the right choice. Good luck and please keep us informed.

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1 year 11 months ago #52583 by Rhonda.n.Greg
Thank you both for your responses.

PET scan results today, there is spread to the left seminal vesicle....no other sign of METs. Lungs, liver, lymphs all appear to be clear! This is the best news since his diagnosis. Also, his creatinine was well back into the normal limits! So he is cleared for Chemo. If it stays low he will still be a candidate for any of the three diversions.

Today we met with the Surgeon, oncologist AND the surgeon who will place a port for the chemo. Whew, what a day- three hours of MD's, Residents, third and fourth year students, Nurses and Nurse navigators! It was all very well orchestrated with no wait times, constantly with someone who was focused on his care. I'm also please to say that the Oncologist is happy to see us here at Medical College of Georgia. (8 minutes away) even though we are still considering Emory for the RC and diversion.

Dannie - The surgeon states she doesn't favor the IP because her patients aren't happy with them once they have them. She also said that often those patients are back in for repair of the IP within 3-5 years because of wear and tear with cathing. Cynthia, have you seen this as a problem with other IP folks?

Feeling relieved and now a bit anxious about the Chemo.... Next step is a second opinion at Emory.
The port to be place the day after that and Chemo beginning on 1/18/17.
Surgery will likely be in April so we still have some time to decide and see how he responds to the Chemo.

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1 year 11 months ago #52575 by Cynthia
Rhonda and Greg,

If I had not had both kidneys at the time of my RC I may have made a different choice. Since my RC I have had my left kidney removed for reasons none related to my RC that was about seven years ago. My kidney function is normal and I have had no problems, so far so good. It is something you definitely want to talk to team at Emory about. Concern about renal function are more important than the type of diversion you have. The funny things about diversions is that once someone has one a while they tend to think they have the best choice and would recommend it. What is important is the one that gives you the best chance for living a healthy life following RC.

Keep us updated.

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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1 year 11 months ago #52572 by DannieC
Rondha, I have decided to go with the Indiana pouch. My surgeon said the neo was off the table do to the damage to the eureatha. When I told him my decision he was not happy. I think he just wanted to do the ic. And send me on my way. I made calls and talked to people and my urologist. He said with my active life style that I made a good choice. I have since talked to my surgeon and we agree that the ip is a good choice for me. Now take in mind it takes two surgeons to perform this surgery and the healing time is longer and we have to do our part as the patient to get good results. I feel confident in my decision and will keep you informed on my out come. My surgery is Feb. 9n th. I will be in surgery for 8hrs. I hope this helps .

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1 year 11 months ago #52571 by Rhonda.n.Greg
DannieC,
I'm wondering which way you are going. My husband is facing an RC and we are trying to decide as well. We meet again with Urology on Friday and hope to meet the oncologist for the first time as well. We thought we had several things decided and now everything is back in the air again. Cancer seems to be like that, just when you think you know something you get another curveball. His case is complicated by renal function values (creatinine 1.6) they say he may not be able to have chemo and that the Indiana and neo-bladder may be off the table. The tumor had been blocking the ureter-it was three times the size it should have been and the kidney was compromised.

Cynthia, have you had any renal concerns? The doctor that we saw is not an IP fan, we will travel to Emory for a second opinion next week. The doctor said that the IP is the hardest on the kidneys of the three diversions.

Rhonda

Greg: High grade papillary urothelial, deep muscle invasion. 11/2016
Expecting Chemo and RC planned for March 2017

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