Endocrine disease

[AlaskaAngel]

What Is an "Endocrine" Disease?

My visit with the endocrinologist today was much more limited than I had anticipated. I genuinely believe that breast cancer is an endocrine disease and that one of the "missing pieces" for us all is the lack of any significant direct role by endocrinologists in our treatment planning. I gather that endocrinologists as a rule limit their practice in terms of breast cancer patients to hormonal manipulation to deal with such problems as menopausal symptoms, and even then generally applying that primarily just with those patients who are hormone receptor negative.

It may or may not be asking a lot of endocrinologists, but I feel strongly that it is only logical to ask (and even insist) that they take a more active role in dealing with breast cancer treatment. It was explained to me that the breast is not an organ like the pancreas, and breast cancer is not considered to be caused by estrogen because if it was, all women would develop breast cancer. I did not find that argument very persuasive. While it may be that endocrinologists traditionally have only dealt with organs like the pancreas, if there was more willingness to "think outside the box" the application of their knowledge about the endocrine process could provide keys that are not so obvious to those in other specialties who are trying to figure out the puzzle of breast cancer.

It makes little sense to me to be putting so many women on medications for hormonal manipulation like SERMS (tamoxifen, raloxifene) or AI's (Aromasin, Femara, Arimidex) if endocrinologists have such limited participation in breast cancer treatment in general.

Am I missing something here? This seems so obvious to me that it is just basic science....

AlaskaAngel

You know I just wanted to tell you that breast cancer's middle name is estrogen. Yep, I think the hormones have a lot to do with breast cancer; ironically, endocronologist as well as gynecologist ignore that. In fact, the GYNs give out birth control like candy to young women, surely increasing their estrogen levels and putting them at later bc risk.

By the way, I saw a live webcast from 2004 SABC that mapped estrogen levels in women via serum levels and fifteen years later observed that those with the highest levels, years earlier, were the women who got later bc development. Amazing, maybe doctors should be following estrogen levels in women rountinely in order to help mark which ones may be at current or later risk.

[RobinP]

Note AA, sorry my previous post didn't identify me as RobinP.
Anyway, I just want to add that I regret having ever taken birth control even though it was just for a few months. I have always been extremely thin and the whole time I was on them I felt nausated as if it was so much for my small frame and toxic to my system; maybe it was; maybe that partly why I got breast cancer?????????????????

[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

[AlaskaAngel]

Hi Gina and Robin,

The endocrinologist went so far as to concede that my comment that "specialization without coordination is more destructive than helpful" had merit.

I also said that after becoming a victim of chemical castration (which it seems is more politely referred to as chemical menopause) without any counseling or informed consent, I wanted to know who the endocrinologist on my tumor board was.... (Obviously, that would be a good place to start for bc patients if they are aware that there is a lack of shared communication among specialists.)

So perhaps if anyone else here has the opportunity to pursue that idea in their treatment center maybe some day it might actually happen.

A.A.

[Joe]

I just posted a link to the San Antonio Symposium on that message board. I do believe that there was a presentation covering this subject.


Regards
Joe