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husband w/invasive TCC w/ prostate involved

9 years 6 months ago #33374 by dukel
Pat,
We have no disagreement. You are not elected into the pushy
broad hall of fame. You are just elected into my hall of fame!
I have said before that i went through my other cancers
without a site like this. Good up to date info was very
hard to come by. I felt as if i had found the best source
of knowledge available when i came across this site. A year
later, i feel even more that way. I see the work Cynthia,
you, Mike and others here do and i am constantly amazed by
all of your work and knowledge.
Here's hoping you continue to disagree and be a pushy broad!
Duke

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9 years 6 months ago #33373 by Patricia
Well since i haven't exactly won the Miss Bladder Cancer Popularity contest...i will continue to push and probably disagree with you Duke. I understand where you were coming from. I felt the same way after an all out Herculean effort to find the best bladder cancer surgeon in the country and the best Hospital.........and then 8 yrs later Breast Cancer shows up. Fight or Flight? I'm tired...I knew where i should have gone but i didn't...the 4 week radiation therapy would have drained me of all finances out of town. I refused chemo because i didn't want to die without hair and a 90lb frame at my age...so i half fought and i may lose the battle because of it. And i'm alone with nobody to care about me..the fight drained out of me.
But first round i was a fighter...i educated myself with research not by asking a nurse or another doctor who i should see. They've hardly heard of bladder cancer themselves.
There is so much information on this site..so many guidelines...so many good articles to be read by first class uro/surgeons....all the NCI centers are listed..you don't have to leave this site to research. We've made it easy. Decision hard...research easy.
So if i'm elected into the Pushy Broad Hall of Fame...Good.

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9 years 6 months ago #33367 by dukel
Jimswife;
Hello, sorry to hear of you and your husbands resent troubles.
I completely understand the thought process you're both going through. I also understand that Pat, Mike and others are trying their best to help you. I'm going to go out on the proverbial limb here and offer you what may be some comfort
instead of good advice. I had a R/C about eight months ago after dealing with bladder cancer for a little over a year. I
am 63 y/o. I want first to say, over the last twenty years i had a couple other non-related cancers, and had done about all the traveling for medical procedures i ever wanted to do. So this time when i was told what needed to be done, even tho i had read what Pat and Mike had to say on the subject, i chose to stay in my local area. Like you i did do alot of checking on the doctor that was going to do the surgery, until i was satisfied he was good. All i can offer is my
experience over the last eight months. The surgery went as planned. I was home in ten days. Starting to feel better atfer
one month. Feeling good at 3 months. Feeling back to near normal at six months. I had day time control of my new neo-
bladder after a few weeks, I still ware a pad at night, but
is not always needed, i feel more comfortable that way.
I was able to have sex at a little over 3 months. Could
something still go wrong after eight months? Sure it could.
Would it be because i didn't go to a major bladder cancer
site? Who knows. I do know a number of people who have used
the same doctor, and been very happy. We all do what we hope
will turn out best for us. Thats about all we can do!
What people like Pat and Mike do here on this site is
invaluable and i would never doubt them. It just seems as tho
you have made a decision, and i wanted you to know that if
that is what you have both decided, it is ok.
Wishing you both the very best.
Duke

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9 years 6 months ago #33348 by mmc
Jimswife,

This might be of interest to you and your husband. I posted it a few months back and it may explain in a bit more detail and our reasons for strongly encouraging people to get to the best bladder cancer docs at the best bladder cancer hospitals.

Bladder Cancer Center

It is well worth the read and since it was written months ago you will realize that it is not directed specifically at you. It is written for all that find themselves in this situation. Our desire is for the best possible outcome for anyone who, like us, had or has bladder cancer.

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...

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9 years 6 months ago - 9 years 6 months ago #33347 by mmc
Jimswife,

Sorry if it sounds pushy to you. I'm sure that is not anyone's intent at all. The other part of "been there/done that" that we have dealt with here on the forum is people who say "my doctor is just fine" because people told them so. Many had major complications and others are no longer living.

It could be the doctor you have decided can do the job just fine. Research has shown that the experience with the specific surgery is a key predictor of surgical outcomes.
Some folks here, expecially Pat, study the doctors in detail and share that information here. That has saved many lives and also helped many more avoid complications.

The people who get to the top surgeons "in the field of bladder cancer with specific, higher volume experience"
have better outcomes. That's just a fact that has been scientifically studied and published. Your husband's highest probability of the best outcome is by going to one of those doctors.

You are certainly free to decide whatever you want based on whatever criteria you wish. Patricia and others are making recommendations based on scientific research.

I wish the best of outcomes to your husband. There are others here who have had his specific surgery if he has questions about it. I have the neobladder so it's a bit more complicated than the ileal conduit but tell him to feel free to ask anything of the forum.


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...

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9 years 6 months ago #33332 by Patricia
Sorry Jimswife...not the least bit angry...well maybe at bladder cancer but certainly not you. Pushy..yep thats me.
I'm truly on a mission to save everyone from this horrible cancer and i've spent the past 8 yrs since my own cystectomy and diversion researching and interviewing and guiding. I can't make any decisions for you but i can guide you to published articles by top doctors in the field. The decisions are all yours to make.
I'm not very Facebooky i'm afraid...i try to get the facts out there and forget the small talk unless i'm in chat...so please forgive me. I only truly want the absolute best care for your husband so you'll have him around for a long time to come. I wish i had mine.
pat

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