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husband w/invasive TCC w/ prostate involved

9 years 10 months ago #33325 by jimswife
Thanks, Cynthia, I understand all of what you say regaring the "pushy" part. I also understand they have been there and done all of this and I have not. I am just sorry that it seems to come off as angry to me. Maybe it is my interpretation of it. No problem here with me. Thanks again for your input.

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9 years 10 months ago #33324 by Cynthia
Jim's wife I am sorry you are here but am glad you have found us. Do not be upset by getting a little pushing on the forum on the surgeon issue. It comes from caring and is not meant to scare or intimidate. Where Pat is coming from is a lot of research has shown better outcomes when your surgeon has done a high volume of Radical Cystectomy's as well as the hospital routinely being part of that team. The surgeon that did mine has done over 1,000 in his career and average of 3-5 a week, as opposed to my local Urologist who does two or three a year.

What goes on here is not to make decision for anyone but rather to allow them to become informed medical consumers and a big part of that is knowing what questions to ask your doctors. You are doing a good job of being an advocate for your husband. This is a difficult time for you and your husband and trying to make the right decisions under stress is a big part of it, know we are here for you if you need to vent.

I am going to move this to the newly diagnosed as it will get more attention from the men on the forum.

Good luck and keep posting you will find you have all kinds of things to talk about as your journey continues.

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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9 years 10 months ago #33321 by jimswife
Thanks, Harley Girl, My husband is 66 y/o in very good health well, other than the obvious. I have spoken with a number of the doctors that I have worked with and they say they are very confident with the surgeons we have chosen and if they had this disease they would also use them. I can only go with what I am hearing. I appreciate so much all you input and I am hoping I am not making a mistake. You all have frankly terrified me. Also, the surgeon has said he will be doing lymph node resection as well as removing the urethra for this cancer. My husband is stage III+ I am going to get the grade etc later today. I believe they sent the slides to the U of Florida for overread. Thanks again for your input.

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9 years 10 months ago #33314 by New Diag 7
Hello Florida Neighbor..(Jim's wife)

Welcome to ABLCS. I am sorry you have to be here. I know you are scared and things are hitting you like a sledge hammer. It has been the same for us. Especially a few months ago when my husband was diagnosed with T1G3...and a 5.4 cm tumor in his bladder.

We both are health care professionals. But that did NOT help us one bit because like you said, when a very nasty cancer like bladder cancer hits your home....I think medical training can become your own worst enemy.

One day, my healthy husband went from golfing and carrying golf balls in his pockets...to hearing the news he was carrying a tumor in his bladder that was larger than a golf ball.

We, like yourself, hit the internet. I think that I myself must have spent 1000's of hours, everyday, all day long , researching everything I could find out about Bladder Cancer and its prognosis. It was not too long before I ended up here at ABLCS. I met some incredibly knowledgable people, who then directed me to some of the BEST information about BC, I could ever wish to locate.
Information that I recognized, if I were to follow, my husbands survival statistics would increase immensely.

One of the very FIRST and most IMPERATIVE steps that I learned we were going to have to take early on, was to locate the BEST and most TOP NOTCH surgeons and Cancer hospitals in Florida. That is, if my husband was to have the best outcome.

Being from the Tampa Bay area we began interviewing docs everywhere in Fla..including Moffit. Regretfully, the criteria that I had learned we MUST find in a surgeon,
and mostly a top cancer center hospital to help increase my husbands survival statistics....was NOT here in the state of Florida.

It was his LIFE and as we all know, there is not any margin of error when it comes to human life. My husband had to have the BEST. I wasn't going to settle for less, no matter the cost to us physically, emotionally or financially.

My husbands local uro was indeed a very competent and wonderful man, but not equipped to handle BC. He did my husbands first TURBT to remove the tumor and did a wonderful job getting it all. We sent my husbands slides to not only one, but to three pathology departments. Two were in the state of Fla, and one at MSK in NYC.

To our surprise..when his path report reached NYC, they found his cancer had been improperly staged by the pathology here in Fla. He had been overstaged here in Fla. This meant, a completely different protocol in his treatment plan.

This proved to us, we had to leave Fla for certain for his care.

As medical professionals, we knew what we were seeking in a major cancer hospital and in a renown surgeon. Fortunately, for us, we found our surgeon at Memorial Sloan Kettering in NYC.

My husband is scheduled for his radical cystectomy on August 20th. It is not easy to travel out of state...but we know we are in the right hands. I did not want to fool around here in Florida without having a major cancer hospital that deals with BLADDER CANCER, or a surgeon who did not do at the very least, 200 RC's a year.

I also wanted a "team of surgeons" with exactly the same expertise surrounding the surgeon who would be removing his bladder. Nothing like backup experts standing nearby should anything odd, or unexpected, go wrong. Needless to say, a big part of the sledge hammer was removed from my back once I knew we were in good hands.

I wish you and your husband the very best. If you would like to talk more about all of this, I'll be more than happy to provide you with my phone number.

In the meantime, I wish you and your husband all the very best,

Cheryl

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9 years 10 months ago #33312 by Patricia
OK i get it now...you said UC Irvine which is also the University of California at Irvine....see how i made that jump.
I see you live near or in Naples...and yes very rich but i'll bet you $100 dollars that if one of your doctor friends had bladder cancer he'd be on the first plane to MD Anderson, Johns Hopkins, or MSK in NYC or consult with Dr. Soloway in Miami.
And i already know i'm losing this battle.
pat

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9 years 10 months ago #33311 by harleygirl
My Dad was diagnosed with an aggressive form of bladder cancer when he was 80 (he is about to turn 84 this month). He had a radical cystectomy (ileal conduit) with prostate removal and found out that he also had prostate cancer. His surgeon was not at a major cancer center and did not do a lot of this type of surgery. The surgeon left Dad's urethra and the cancer was eventually discovered to have moved there so he had to go back for more surgery in the months after the BIG operation. So, I can personally URGE you to go for the most experienced surgeon who does a lot of this type of operation. They are out there. My Dad just didn't happen to get one of them. I hope you are right and that you do have one of them.

It is a big operation for anyone to endure. You didn't mention how old your husband is or what, if any, medical problems he has other than the bladder cancer. My Dad has adjusted to his ileal conduit and has no problems with it at all. It is his "new normal". He has had some UTIs. His energy level since the surgery has never been the same. He did not have chemo either before or after. He was diagnosed in January and had surgery in April of that same year. We didn't know enough to find a better surgeon or facility and moved quickly due to the aggressive nature of the cancer. Not every doc would do this big surgery on a man Dad's age. I wish the best outcome for your husband.

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