[Gina]

When I was first Dx with BC back in 1997, one of the very first appointments I made was with an endocrinologist, because besides the cancer, I was having so many "endocrin" related type symptoms...Like you, I was SO UTTERLY disappointed...the doctor was not able to piece any of the connections together with the breast cancer even though my SYMPTOMS were starring him in the face...when my tumor was at its peak...over 5cm...DARK, DARK hair started covering my whole body...the hair on my arms went from a light blonde color to PURE BLACK...I had hair growing in places I HAD NEVER HAD HAIR GROWING before...later, I learned this was caused by increased testosterone levels that often accompany her-2 mediated cancers. It was not until years after the fact that I learned the very little known fact that BESIDES hormonal imbalances...chronic infections also cause the testosterone to rise in both women and men...so yes, among our legions of doctors, we her-2 folks need BOTH endocrinologists and infection specialists to help us figure out this part of the puzzle--another very little discussed endocrin connection is the inverse relationship of her-2 to estrogen in ER-PR-tumors. What that means is that in someone who is hormonal neg like myself...when my her-2 is high...it pushes my estrogen down and when my estrogen is higher...my her-2 stays more in balance. This is one of the main reasons that I think pre-menopausal women struggle with this disease as I have had the opportunity to chart my serum her-2 levels the week before my period when my estrogen is diving and guess what you see every time...her-2 rising...unless you are taking the herceptin regularly to push the her-2 back down...it does not take many mentral cycles to push the her-2 way out of whack..but no one EVER mentions this...sometimes, I think that even the ER positive her-2 tumors are merely er positive because the body is somehow trying to raise the estrogen levels to counter balance both the elevated testosterone and the elevated her-2...we know far too little about these bio-feedback loops to say anything one way or the other, but they NEED TO BE STUDIED in depth in relation to the entire endocrin and gynocological systems...Thank you so much for bringing up this excellent point. Take care, Gina