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New to Cancer
I am new to cancer (diagnosed Stage 1 Grade 3) in January and to this site. I have been reading posts but not registered. This information you have been talking about is very interesting to me since I too live in North Carolinta, the mountains. However, I have been being treated in Greensboro, NC because my urologist there is a specialist in interstitial cystities which is a bladder condition I have suffered with almost all my life. I had TURB with 4 tumors removed in Feb and I am taking BCG & interteron treatments weekly. Tomorrow is #9 and my doc recommends 12. This has puzzled me because most people post that they take only 6 and only BCG to begin. With my past history of bladder problems I would not be surprised if I must have my bladder removed sometime in the future. I would want to go to the best possible hospital with a doc that does this routinely. Your informatin is helpful since I am in this area too. I have read that Sloan Kettering in New York is the absolute best in bladder cancer but my opinion is that it is the doctor that matters most. I am a little afraid of going to NY being a county girl. If Duke, Wake Forest, or even my present doc which is afflicated with Wake Forest and is in a large practice of 14 urologists is just as good, I would rather stay “home”. I am driving 200 miles each way weekly for my treatments so I am used to traveling there. By the way, my husband’s cousin had a tumor in his bladder in 2000. After the surgery they told him it was cancer but when the path reports came back, they said it was benign and he has had no further problems.
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit6 Replies-
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.
Clara
Caretaker of husband, Bob.
Stage IV
Diagnosed Jan, 2007
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.
Balihigh
female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
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
ABLSC
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,
Rosemary
Rosemary
Age – 55
T1 G3 – Tumor free 2 yrs 3 months
Dx January 2006
Balihigh,
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.
Kathleen
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,
Karen
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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