Just diagnosed with bladder cancer

Hi
I'm from Israel, but there might be an option of having the surgery in the States. The doctors here don't have much experience with radical cystectomy in transplant recipients (I'm not even sure there are any other such patients in Israel)
Thanks for the information, one of our main concerns is finding someone who is not only experienced in ileal conduit, but understands the difficulties that may arise for a transplant recipient (already after the TURBT there were some small complications)
Thanks!

Hi
This does indeed help. It seems there are fewer people than expected in this situation, and since there are hardly any statistics (mainly case studies), it's very hard to decide. My father is also currently leaning towards ileal conduit, and it helps to know you also reached the same decision.

I hope everything goes well with your husband! I'm glad to hear the surgery went by easily.

Thanks!

nufar..where are you located?
Here is some data from UCSF which has a high volume of kidney transplants.
cat.inist.fr/?aModele=afficheN&cpsidt=15554790
You're right ..there is not a lot of data out there or it is collected amongst those on Medicare which is an older population and therefore statitstics can be variable to say the least as there seems to be quite a bit of different cancers associated with kidney transplant...or are they? Could be associated with age, exposure,...even they aren't sure.
pat

Hello.

My husband saw a couple of different doctors. We live in NC so we talked with Dr. Raj Pruthi in Chapel Hill. He is the guy to see in our area. We also made a trip to Baltimore to speak with Dr. Mark Schoenberg at John Hopkins. Also one of the top doctors in urology. It was a tough decision. We decided to go with Dr. Pruthi. He seemed to really take an interest in my husband and we just felt more comfortable with him.

We decided to go with the Ileal Conduit. From what we were told, it seemed to be a little less stressful on the kidney and less maintenance.

My husband's surgery went great. He did, however have some complications after (blood clot, small bleed from treating the clot). These complications could happen after any surgery.

The doctor also removed some lymph nodes for testing. Some of them did come back with microscopic signs of cancer. We were doing chemo but my husband was having problems with it so it is on hold for now.

My advise would be to choose who you feel comfortable with. Really listen to what they have to say. Their main concern is the cancer, but also make sure they protect the kidney.

I hope this helps. Feel free to ask me specific questions if you want. I will try to answer the best I can.

Take care!
Tina

Hello,
My father (58) has also recently been diagnosed with bladder cancer (muscle invasice CIS). The cancer was diagnosed 8 years after a kidney transplant, so our story seems similar to yours.
He is now trying to decide what type of cystectomy to do do - ileal conduit or orthotopic neobladder.
There seems to be very little information about the outcomes of these surgeries in renal transplant recipients, so I'd be very happy to hear of any information you managed to gather and what you decided to do in the end (type of surgery, which doctor, etc.)
Thanks!

Hi again Tina and Tim,
Pruthi is excellent....but if you can the top #1 Urological hospital in the country is Johns Hopkins. I would recommend Dr. Mark Schoenberg
urology.jhu.edu/markschoenberg/index.php
He has a email address and i have found him to be extremely helpful in the past. If he doesn't think he's the right expert he will tell you who is. I talked with him when i was searching for surgeons who specialized in Indiana pouches as that was my preference as a female. He said he could do it but then rattled off 5 other surgeons who he thought were better with the Indiana. He's excellent with the neobladder and nerve sparing..one of the best in the country.
I have discovered that this happens more frequently than you would imagine with kidney transplants. I researched for my couzin who had polycystic kidneys and needed a transplant.
Another surgeon who just happens to be my surgeon who is a leading transplant surgeon in the country and also can do a neobladder laparascopically is Dr. Inderbir Gill at USC/Norris. Thats quite a ways to travel but he is phenominal.
www.usc.edu/schools/medicine/util/directories/faculty/profile.php?PersonIs_ID=3840
His personal assistant is Blanca and can be reached at 323 865 3707.
Hope this helps.......your in great hands with any of them.
pat