To Remove or not to Remove, that is the question

14 years 2 weeks ago #31340 by Patricia
Hi Robert..my curiosity is now peaked as i read Sara Annes post and i'm wondering how you got into the center? It doesn't appear you had anything different than anyone else with T2 bladder cancer. Only trial i possibly see is the one the Italians are doing where they scrape out the T2 tumor and it sometimes comes back a lower grade...yet they told you RC was the better alternative. So what was different about your case. I know Dr. Pinto as he got his training at Johns Hopkins and i'm sure they hated losing him.
Recovery is a bit tough at first but each day you'll feel a lot better. I think the waking up of the bowels is the toughest to deal with and trying to figure out what foods and quantities to eat at first .. and of course the training of the neobladder which is like a 2 yr old unfortunately.
You will see improvement.
Pat

Please Log in or Create an account to join the conversation.

14 years 2 weeks ago #31339 by rlemar
Hi Sara anne,
I just had the operation on the 29th of March. I am recovering.
I'm so glad I had this done by the best of the best. Everyone at NIH is superb! They have treated me like royalty and have been there for me on a minute to minute basis. Recovery is a bit more of a challenge than I had thought, but going very well.
I am familiar with the Wildwood area. I shop at Wildwood Shopping Center often.

Thanks,
Robert

Please Log in or Create an account to join the conversation.

14 years 2 weeks ago #31338 by sara.anne
Replied by sara.anne on topic To Remove or not to Remove, that is the question
Just to clarify a bit (I was gone and didn't get in on the first part of this thread), in addition to supporting research throughout the US (and sometimes even abroad), NIH also has its own "intramural" research program. It has a HUGE hospital
(The Warren Magnusen Clinical Center); however, it does not do what is considered "routine" clinical care.

IF one of the reseachers is doing a study on a condition that you have, and you can get in as a patient, you are in real luck. The top of the top as far as care from people who are leaders in the field. AND, it is FREE. The hooker is that there isn't always someone doing reseach on whatever condition you present with.

Robert is very lucky to be able to avail himself of this. I have a very good friend who has been waiting "in line" since last spring to see if he can get into a study on CLL.

Robert, see that you live in Garret Park. I lived for many years in Bethesda (Wildwood Manor) while working at NIH.

Sara anne

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

Please Log in or Create an account to join the conversation.

14 years 2 weeks ago #31336 by Jeff F
That is a tough one. When I developed into Stage 2, my Uro said I could try radiation. But he also said if the radiation failed there were no other options. I guess that was because of the damage to the intestines which would result and they would not be useful for reconstruction. In any event, it sounds like radiation was successful in your case. That doesn't mean it can't return, and I imagine that is why the Drs are saying to remove. I kind of wonder why they would radiate if they knew it would have to be removed anyway. Who could recommend in a case like this? All I can say is that better safe than sorry, and the Drs are recommending removal and I would remove. I had my RC 2 years ago this month, just had my 2nd year scan and am clear. Thank God. I had an ilial conduit and it has worked fine, no cathing, no voiding problems, et cet. But everyone has to make their own decision. Best of luck. B)

BC diagnosed 01/2007
Cystoscopes and Miomyacin in 2007
R/C ilial conduit 04/27/2008

Please Log in or Create an account to join the conversation.

14 years 1 month ago #30887 by rlemar
Dr. Peter Pinto

Please Log in or Create an account to join the conversation.

14 years 1 month ago #30885 by mmc
Robert,

That's great to hear. What's your surgeon's name?

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 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

Please Log in or Create an account to join the conversation.

Moderators: Cynthiaeddieksara.anne