Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by tkelly on Mon Mar 30, 2009 12:00 AM
by hmac1 on Mon Mar 30, 2009 12:00 AM
by KathyCross on Sat May 16, 2009 12:00 AM
On 3/30/2009 hmac1 wrote:I think if you have any feeling whatsoever that something is wrong you should demand your doctor do any testing he/she can. adrenal cancer is very rare, and most of the time it is too late when you finally start to have symptoms.... so you may not have anything to worry about, but you know your body best, and if you feel like something is wrong, you take charge... many symptoms of adrenal cancer are also symptoms of many things and because it is such a rare cancer, doctors don't think to test for it. My father passed in september, and the doctors in our area did not know anything about it... He had to wait 3 months for them to even find a surgeon that could do the surgery, by then it was too late. that just shows how rare it is.
I was diagnosed with adrenal cancer in April, 2006 and have had an adrenalectomy and a liver resection at Vanderbilt in Nashville. Since then, it has spread to my lungs and back to my liver. I am seeing a Dr. in Columbus, OH, Dr. Manisha Shah, who will be starting a clinical trial, phase 2, in June on this rare cancer. She can be reached at 614-293-8629. I had symptoms of Cushings Syndrome and diagnosed it myself by reseach on the internet in Feb. 2006. The Dr.'s here in TN tried chemo, but it did not help it from spreading. Please contact her.
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