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Afraid and needing advice

9 years 1 month ago #31700 by GKLINE
Cher
Please don't worry too much about the TURB. Most of us had at least two. It is a hospital stay, but it is minimally invasive procedure. The condition of your exit from the hospital is being able to pee in the cup. My wife and I came up with a thousand comical reasons for this. The right surgeon will make this procedure a breeze.

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 1 month ago #31698 by Patricia
Hi New Diag.....
2 weeks is pretty good to get into Moffitt...my recommendation is Dr. George Lockhart
http://www.moffitt.org/Site.aspx?spid=D78C7D49C687478BB5558B261FF6C42E&SearchType=Physician
He's done lots of reconstructions and is his specialty.
hit the top tabs to get all of his interests off this main page.
I would ask your present uro, if he is in private practice, how many TURBS he has done and how much bladder cancer does he see in a year. Resectioning of the tumor is delicate and carries its own risks so you want someone who does this all the time also. Often margins are left to re-seed. Thus the re-TURB within 6 weeks recommended...even with the best of them.
One of the Top uro/surgeons in the country is in Miami at the U. of Miami..Dr. Mark Soloway...I know its a bit of travel..but its an option.
http://urology.med.miami.edu/x14.xml?id=P1173
He has an email address so you could probably address him with your concerns.
Good luck with your decision. With men (sorry guys)its kind of like asking for directions!!..They'll go with the first uro they see unless prodded to do otherwise. This is a very sneaky cancer and best outcomes are by the best doctors who are at the top cancer and university centers.
Pat

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9 years 1 month ago #31697 by New Diag 7
Thank you George for your caring reply. Just finding this website very early this morning via another sleepless night has been a relief. I have held so much of this in..and I feel a BIG weight has been removed just by being capable of talking to someone. I don't wish to rattle my husbands cage more than it already is. He is a wonderful man and I know he is afraid. He tries to put on a strong demeanor for me and for those around him, though few know at his request. Cancer does run in his family. Four years ago he lost his sister, age 59 to renal cell carcinoma. From time of her diagnosis to time of her death, was 4 months. I know her death weighs in his head. I am certain when all of you received in your diagnosis, your brains felt like you were in an osterizer whilst trying to accept diagnosis and make serious decisions. I am glad you are all here right now and have decided to help others. You all must know what a difference your input makes. Thank you so much.

After reading the three of your replies, besides calling Moffit, I have called the urologist office and left a message for them to call my husband at work. I have read him all of your post and he has now decided to ask the urologist, why he should consider using the Urologist as the surgeon, versus going to the Moffit Cancer Center?..
We should have asked many more questions after the cystoscopy while in the urologist office, (and the doctor did encourage us to ask) but when you are hearing things and writing down everything in the "notebook bible" which has now become a part of my life...you feel on overload. It takes more than a given few minutes to think of questions when digesting and sorting the devasting news you have just been given.
Again...I thank those of you who have replied. I am scared..and yes I will be awake while he is asleep...but I still remain..if I could take this from him, I would in a heart beat. Life is so precious and we must inhale the beauty of life and those we love everyday.
God Bless All of you...
Cher

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9 years 1 month ago #31696 by Humpy
Nancy, we all remember the day we were "floored."
But now it is time to concentrate on beating this.
As Mike has stated, we are all firm believers of a second
opinion at a cancer center. I am living proof of that!
You have got some very good advice so far, and there will be
alot more to come. We are here for you, and together WE will
beat this.

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 1 month ago #31695 by GKLINE
I am so sorry to meet this way. But, I am glad you are here! This is exactly the right place to be.

First of all, Mike is right on with his advice. You need a top cancer Surgeon who is more of an assembly line worker than an artist. You want a person who has seen every possibility that can come up. You also want the top cancer care facility in your area. These people have seen it all and they have done this many many times.

I know this is such a crushing discovery, but this is the way we all have learned about our cancer. I had on and off blood for a couple of months and was told "probably a kidney stone" and thought it would pass. Then My primary physician scheduled an ultra sound and "WHAM!" We took off on the same rocket ride you are on.
But, and this is a big but. Slow down and take stock. You will get through this and most of us on this site are LIVING proof. We have all had our first TURB and the second TURB and a Radical Cystectomy. Although this is a BIG Deal. Your husband will get through this. Just get him to the right people. Patricia will get you the names of the RIGHT People for your husband.

Now we have to make you think ..... of You. You will be going through this just as much as your husband. It always seems as though the caregiver(spouse) is the forgotten one in all of this. I know you are suffering right along with him. I also know you are probably agonizing More than he is. I learned about my wife's pain long after I had recovered. She felt so helpless at times and yet she was involved in every single second of the recovery. (I on the other hand was asleep for 11 hours in surgery, while she had to sit in the waiting room. Wide awake) Please don't shoulder so much of the burden that you cannot handle the load. Throw a bunch on his shoulders... he can handle it!

Finally. Please keep your head up and know that you both will get through this. Don't let cancer give you tunnel vision and take your "Life" away. Continue to "live" It will do no good to sit in the house and fret.
Call your friends and family and talk. This may be hard at first and some will not want to get involved. But, you will be surprised at how many will rush to your side and help share the mental load. Your friends will want to help. They don't want to be pushed outside. They just need to be invited in and they will come through the door. They may not want to hear every medical detail, but they want to help "YOU" Don't forget about "YOU"

You and your husband are going to beat this thing! If we did, so will you. With the love you have for your husband you will make damn sure he recovers. This I know from just reading your first post.

Keep us in the loop. There are people here who can help.

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 1 month ago #31693 by New Diag 7
Thank you so much for your prompt reply Mike and Nancy. Since we have received your post, we have talked to Moffit Cancer Center. They told us the urologist we have is an affiliate to Moffit. They also told us that it would take two weeks just to get in for a consultation with their doctors at Moffitt. We are so confused as to what to do being my husbands surgery is scheduled for this Thursday, May 6th. The nurse at Lee Moffit suggested calling our urologist and asking him to speak with the surgeons at Lee Moffit for their expert opinion since he would have immediate access to speaking to those doctors as an affiliate of the facility. Not sure what the point of that is if the urologist has already made a decision to on his own, proceed with surgery. I would imagine if he felt the need to have already consulted with the doctors at Moffitt, he would have already done so without our asking him to do so.
We do know the mass needs to come out....but by whom and when, stands to be our concern and consternation now.

Thank you again....this is a very scary time in one's life. Suddenly you go from seeing your future life in decades to taking it only one day at a time.

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