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Afraid and needing advice

10 years 3 weeks ago #31716 by New Diag 7
You made me laugh about the Bladder Police. At this point, I would gladly receive them at the door just to take a reprieve from this for a minute or two. Again my appreciation for your advice. I will indeed make an appointment now at Moffit for him. You are right...this is just the beginning of many more decisions so I had better buck up and get ready for the duration of the inevitable. It is nice to know you are all out there. Sometime along I may be asking for you to tell me how to turn off this crazy roller coaster of emotions in an effort to breathe again. :-)
Good night everyone...

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10 years 3 weeks ago #31715 by Cynthia

Take a big breath.........

You have a plan and that is a good thing. The nurse with Moffitt is right it is important that you get a firm diagnosis and not wait. Once you have a diagnosis there will be a whole new set of decisions to be made based on that. A TURB is a commonly done procedure mine was done by my local Urologist and I am still here today is the four year anniversary of my Radical Cystectomy. I understand Pat's point but this is not a perfect world if it were we would all live by a center of excellence for any illness we might get.

I would go ahead and get an appointment for a second opinion so that you can get in fast once you know what you are dealing with. THIS I WILL PUT IN BIG LETTERS. IT IS VITAL THAT YOU GO TO A CENTER OF EXCELLENCE IN BLADDER CANCER FOR A SECOND OPINION. If you don't Pat will show up with the Bladder Cancer Police to deposit you on ones door step!

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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10 years 3 weeks ago #31714 by New Diag 7
Darn Pat......................I hope we are right as well. My husband decided this is what he wanted to do. I don't know what else to say or do, other than to support him now and hope that I don't have to spend the remainder of what years I have left...hating myself for allowing him to choose a uro, as opposed to potentially having a different outcome had we waited three more weeks for another Doc. I just don't know Pat! However, at this point, the stress is getting to me badly and I will probably ending up kicking the bucket before he does.

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10 years 3 weeks ago #31712 by Patricia
I hope you're right. Dr. Root is a Vasectomy specialist. He's had good training....but many bladder cancer patients does he see in a year. How many TURBS does he do in a week? I know...i'm playing Devils Advocate again...thats what i do...

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10 years 3 weeks ago #31710 by New Diag 7
Well Everyone...I reiterate how I cannot thank you all enough for the advice I have received today. I have spent a very long and grueling day on the phone with Moffit, Dr. Lockhart's nurse, Dr Sexton's nurse and many other resources. Unfortunately, Dr. Lockhart will not be returning to his office until the end of May. He is on vacation. His office nurse office advised that even if our current urologist gets the mass out and biopsied, we can always come to their office for treatment later, or, for just a second opinion. She stated that the most important thing is, to NOT wait any longer. She felt considering its size and the symptoms, it was imperative to find out what we are dealing with now.

My husband then had a very long discussion on the telephone with the urologist who is scheduled to do his TURBT on Thursday. The urologist, Dr. Root was very patient as my husband asked him numerous questions. The one question my husband asked that made up our minds to have the surgery done this Thursday was.... "If I were your very dear and best friend, would you be sending me to Moffitt Cancer Center to do the surgery, or, would you still be doing the surgery?" The urologist replied without a moments hesitation. He said, "I'd be doing the surgery without a doubt. I don't like to toot my own horn..he said, but I have been doing this for a very long time and I am damn good at what I do." He continued, "That he has done thousands of these surgeries in his 25 yrs of practice." He continued,
"How life is too short for him, at his age, to be taking on a case that he did not feel he could do with his eyes closed if needed."

With that said..I wanted you ALL to know that I read every post today, most of them several times over. It was everyone's words here that rang loud and clear. You empowered us to go forth and to once again push every button we could push today to get more answers. Are we still afraid? You betcha!!! However, I think we feel a lot more confident going into this now, than we did before. I heard all of your words and as a result did a lot more research which helped to make us feel as comfortable as anyone could possibly feel going into this God awful mess.

There are no words to express my/our thanks for your kindness, caring and time to make this website possible.
All that I can do now is pray...not only for my husbands recovery, good health and life, but for all of you wonderful people for making the difference in another person's life.

Thank you from the bottom of my heart...

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10 years 3 weeks ago #31709 by GKLINE
So there you have it!

Cher. Your have started a great thing by finding this site. It is full of hope and VERY Good advice, from people who know. Patricia and Mike are here with the clinical information. they know what they are talking about. Follow their lead. The won't steer you wrong. I am here for comic relief and "attitude adjustment"
Get the best care and be an advocate for yourself. I found that stopping my surgeon and reminding him that I was worth saving did a lot of good. He became a human being after that. I let him know he was saving someone that had some purpose that needed to be continued. He started looking at me as a person and less like a number on a chart!

Tell you husband to stand up for himself, and for You. It will take Both of you to get through this. He must be sensitive to you (cuz you ARE going through it too)

The best of luck

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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