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Afraid and needing advice

9 years 2 weeks ago #31768 by Patricia
Warren,
You live in a great area with great urologists in every direction ..you've got Harvard, Mt.Sinai, MSK, etc, etc,..and i'm sure there are some bad uro's out there too but an abundance of experienced uro's with bladder cancer expertise not always the case in some Midwestern states or anywhere inbetween any of the coasts. I mean they are there but you do have to search for them. I live in a big city and we have one uro who does ileal conduits and another one who is just starting to do neobladders...forget the Indiana...they haven't heard of it!
Like you said the TURB is soooo important...they must get deep enough without perforating the bladder and they must get suitable margins and the top uro's can do that...mine certainly did not. It saved my life to go to a top cancer center.
Bladder Cancer Police Chief Pat :lol:

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9 years 2 weeks ago #31767 by wsilberstein
Dear Cher,
While I agree with the preponderance of opinion that a second opinion is a good idea, and an absolute necessity if the cancer is invasive and radical surgery is needed, I just wanted to give you some reassurance about local urologists based on my personal experience.
I had my cancer years before I ever found this forum. I had my surgery at a local hospital performed by one of my colleagues. I never thought about another opinion until my urologist wanted to treat with Mitomycin C instead of BCG. I did have my slides reviewed at Harvard and spoke to an oncologist who agreed that my urologist's plans were reasonable. I never saw another urologist. My reTURB was done by the same guy who did my original surgery. I cannot say how much luck or his skill played a role. Knowing what I know now I probably would have gone for a second opinion. However, it is 9½ years later and I've never had a recurrence. Having the first TURB by your local urologist should be OK, especially if he has the experience to get a good specimen that goes deep enough to make an accurate diagnosis.

-Warren
TaG3 + CIS 12/2000. TURB + Mitomycin C (No BCG)
Urethral stricture, urethroplasty 10/2009
CIS 11/2010 treated with BCG. CIS 5/2012 treated with BCG/interferon
T1G3 1/2013. Radical Cystectomy 3/5/2013, No invasive cancer. CIS in right ureter.
Incontinent. AUS implant 2/2014. AUS explant...

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9 years 2 weeks ago #31737 by sara.anne
Be thinking of you both. Yes, it is inmportant to get the TURB done and get the results. Unfortunately, this is just the first step. As others have pointed out, this will be the start of your journey.

How do we feel? How do we deal with it? For the most part quite well, once the initial shock has worn off a bit. Most days I don't even remember that I have this disease. But on others....then we/I turn to our friends on this list who KNOW what we are feeling.

I am so glad you found us. And soon you will be helping hold other's hands as they start the journey.

Sara Anne

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

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9 years 2 weeks ago #31730 by GKLINE
Cher, (and Now BB too. This all applies to you too. And Welcome)

I LOVED the way your husband took charge of his Uro and made him realize he was a valuable human being, worth saving. I was afraid he would let you make all the effort. But he is "taking charge!" This is a very good thing, indeed.

Cher. You are doing great! In just one day you have turned this bad news around and taken charge of the situation. I am 100% behind your decision to have the TURB done NOW! And the next step of taking your results to a cancer center is the right way to go. The initial TURB can be done by a competent Uro but the next TURB has to be done by a bladder specialist.

I hope this new day finds you looking forward and upward and it is not as overwhelming as yesterday.
I know you will keep us in the loop and we will be watching for your updates.

George

Light a man a fire and he is warm for an evening.
Light a man ON fire and he's warm forever.

08/08/08...RC neo bladder
09/09/09...New Hip
=
New Man! [/size]

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9 years 2 weeks ago #31729 by Humpy
Cher, I am just about one year post op. RC/Neobladder.
I FEEL GREAT!!!!!!!!!!!!!!
For the most part it is all behind me, and I often wonder what the big deal was. Sure it was tough for a month, but I was feeling OK after a couple months, good by 4-5 months, and GREAT for the last few months. BC is not the end of the world.

Now I get an awesome feeling when I can coach others faced with the decisions I had. This is a wonderful forum, full of very caring people. I am proud to be part of it!

Jim

Age 54
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Neobladder 5/19/2009
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan

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9 years 2 weeks ago #31727 by New Diag 7
Thank you for the good wishes BC19. I know how hard the new diagnosis is and I am sorry you have to go through this.
One day at a time is my motto at this point. Hang in there. If you want to share...this seems to be a great place to talk. It has helped me immensely in the last 24 hours. I am here also as a newbie. You can PM me if you like as well. I am still learning how to use this forum, so bear with me. My very best wishes to you.
Cher

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