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12 years 9 months ago #15693 by Clara
Hello Balihigh,
Another North Carolina person here, about 25 miles from Winston-Salem.
I am the caretaker for my husband and his doctors are in WS too.
Keep us posted.

Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007

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12 years 9 months ago #15659 by balihigh
I thank all of you for your replies. When I was diagnosed, I really did not know much about bladder cancer and could not ask the right questions. I have seen the doctor only once since the surgery and that was when he scheduled my treatments. I will see him again in early May. I am trying to learn as much as I can so I can proceed in the right direction. I am not currently going to UNC Chapel Hill but am considering where to get a second opinion and more if necessary if my cancer has returned. My doctor is in Greensboro at Alliance Urology. I am reading books and websites because I don't think you can entirely rely on the doctors. Yes, there are very good doctors out there and we need them but I feel I must be educated to guide my own treatments. I have to think that I have some control. The alternative and complementary medicine is very interesting to me. I have had a positive attitude through most of my ordeal. The hardest part was in the beginning waiting for to see the doctor and then waiting for the lab reports. I am a believer that the mind does play an important part in our health. Thanks again.

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit

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12 years 9 months ago #15633 by Julie
Hi Balihigh, I don't know why you are getting a series of 12 BCG + Interferon. I could speculate that he is using a lower does of BCG or there is research to indicate going longer when you use the combination but that would be guesswork. I would recommend asking your Dr. why he picked that number of treatments. I think all of would be interested in the answer.
My husband had 2 series of 8 BCG treatments and we never asked the Dr. why. It was not until later we learned that 6 was recommended. Julie

Volunteer Coordinator

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12 years 9 months ago #15614 by Rosemary
Hi Balihigh!!

It's starting to look a little scary for us people here in NC :-\

To respond to your point about 12 vs 6 BCG's, I have also had 12 treatments.
Anything beyond the initial 6 treatments is considered maintenance therapy. At least, that is my understanding.

You are in a good place, in my opinion, if you ever have to consider an RC. I can't say enough good things about UNC Chapel Hill.

Take care, and please let us know how we can help.

Best regards,

Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006

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12 years 9 months ago #15603 by CattailGal

You mentioned you are in the mtns of NC. I'm just across the border in Johnson City, TN. The thought of NY is pretty scary to us, too, which is one reason why we've decided to stay somewhat "local" (Vanderbilt) to have my Mom's RC.


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12 years 9 months ago #15595 by momof4
Hi Balihigh, and welcome! I am glad that you found some information that may help you.

I think that a great hospital, staff, UroOncologist and surgeon are all important. If you can find a good team you are going to get the best care.

When choosing a surgeon, I think the important thing is to find someone who does this surgery a lot. Depending on the diversion you pick (neobladder, ideal conduit, etc...) should also be a factor, different Dr's have different specialities, and the protocol for how many lymph nodes are removed ranges from surgeon to surgeon as well.

If you must have this surgery, be your own advocate. This forum is an excellent way to educate yourself, and in helping you ask the necessary questions of your Dr. They can even help you find a Dr. Find out as much as you can, find the best Dr./facility/surgeon/UroOncologist & become knowledgeable as possible about your situation.

Take care of yourself,

Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

Life isn't about how to survive the storm, but how to dance in the rain.

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