View Single Post
Old 10-26-2010, 06:54 AM   #80
AlaskaAngel
Senior Member
 
AlaskaAngel's Avatar
 
Join Date: Sep 2005
Location: Alaska
Posts: 2,018
My 2010 visit with endocrinologist

I've seen both the endocrinologist and the OB-GYN. It is always strange to spend so much time and effort making such things happen from my end, only to actually have a max of 15 minutes with them for any examination and discussion. It takes 3 full days of travel by truck and ferries for me just to get there!

Still, I did manage to get an Rx for metformin this time. I also was given the reason I hadn't been given a prescription for it last time I saw the endocrinologist. I hope to try the metformin to see if there is any (and how much) truth behind the reason I was given.

The endocrinologist said that my lab tests last February showed (and still show) that I am not diabetic and I am not insulin-resistant. According to the endocrinologist, those who don't fit into either category do not benefit from use of metformin. I have been given the Rx on the outside chance that I am possibly marginally one or the other (not enough to be detected by the lab tests), to see if the drug helps.

I asked whether the endocrinologist was aware that there are a now quite a few clinical trials that are attempting to determine whether cancer patients who are taking metformin show better statistics than those who aren't. As usual, the professional endocrinologist responded that he was not. There simply is not enough communication happening between Cancerland and the endocrinologic experts with the knowledge to help deal with what is essentially an endocrine disease. They are excluded from the initial analysis and decision-making process of how to treat the disease -- they are not included in our treatment recommendation panels, the "tumor boards".

UNDERSTATEMENT: We need endocrinologists and dietitians who are given equal representation in our decision-making process for the recommendation of treatment of cancer patients.

These trials for the use of metformin by cancer patients are being run because diabetics who happen to be on metformin were showing better statistics than those patients who were not on metformin. Given that the endocrinologist believes that metformin doesn't work for those who are not diabetic or insulin resistant, the trials might end up just showing that people like me simply don't benefit from taking it -- and that only those with diabetes or insulin resistance do benefit from taking metformin.

I'm not a scientist but in reading some of the discussion about the basis for the metformin trials, it sounds to me like there is more to it than that, and it might apply to some subsets of bc like HER2, but not to other subsets.

The question is, if my metabolism is neither diabetic nor insulin-resistant, and I am not experiencing all of the key symptoms of either metabolic syndrome or PCOS, what then is resulting in consistent slow weight gain for me regardless of disciplined dieting and exercise? If I am none of the above, what am I? Should there be another, new category of metabolically disabled patients for those like me that hasn't yet been created, to help those like me?

From what I can tell, postmenopausal breast cancer patients are sort of metabolic lepers. We are told to diet and exercise, but never given any clear diagnosis or reason other than that we are now "postmenopausal" and thus our "metabolism has slowed down". We are not given clear targets for diet or exercise. I have been fumbling around trying to figure out what amount of diet and what amount of exercise are needed for me to be able to consistently lose weight.

As I become more and more postmenopausal, I have become more and more metabolically disabled. Most disturbingly, the experts I have sought help from are not working as an integrated group to help me with this. Cancerland is still focused almost entirely on the initial treatment, leaving the patient (me) to stumble along on my own in trying to avoid recurrence -- as if recurrence is far less important than initial treatment. To me, this is precisely WHY there continues to be the belief that once one recurs one will not become permanently NED. The only therapy that is clear (and only for those who happen to be HR+) is the stern recommendation for the use of an aromatase inhibitor. Aromatase inhibitors are oncology's somewhat dubious "answer" to the problem of greater fat accumulation in our society of overweight people and in particular, postmenopausal metabolic disability. A far better answer is to get rid of the fat, period.

The answer to the question "what am I, if I am not insulin resistant or diabetic and do not have metabolic syndrome?" was not provided to me. I may decide not to start the metformin until I am back home where my schedule and diet and exercise are a little easier to control and maintain, and because getting a prescription that is started in the Lower 48 then transferred to Alaska may be difficult. But the prescription is at least a chance to get out of the dead end where I've been, consistently exercising and dieting and still slowly gaining weight and increasing my risk of recurrence.

I do have to say that I think it is extremely short-sighted to encourage hormone receptor positive stage I breast cancer patients aged 50+, who are generally at low risk, to go through all the expense and ugliness of treatment only to end up fighting inevitable weight gain that is directly due to chemopause long before a recurrence would occur without "throwing the book at it". Being both HR+ and HER2+ with access to trastuzumab as an early stage breast cancer patient may be a golden opportunity that is being wasted. These are the patients who were not included in the trastuzumab trials. It is quite possible that these patients might do better with trastuzumab alone, and that they may be actually throwing away a chance to liver longer. than those who do standard treatment.

Additional support link:

The majority of breast cancer patients are over 50 at time of diagnosis and are postmenopausal. Since weight gain is a risk factor and the majority of patients gain weight with treatment, one has to consider whether those who are least at risk (early stage breast cancer) will end up cancelling out the benefit they receive from doing chemotherapy because of the added risk they then have due to the weight gain that comes with doing chemotherapy. This is especially true because most breast cancer patients are over 50 at time of diagnosis, and more of them are postmenopausal.

http://www.newswise.com/articles/met...nopausal-women

AlaskaAngel
__________________
Dx 2002 age 51
bc for granny, aunt, cousin, sister, mother.
ER+/PR+/HER2+++, grade 3
IDC 1.9 cm, some DCIS, Stage 1, Grade 3
Lumpectomy, CAFx6 (no blood boosters), IMRT rads, 1 3/4 yr tamoxifen
Rads necrosis
BRCA 1 & 2 negative
Trials: Early detection OVCA; 2004 low-dose testosterone for bc survivors
Diet: Primarily vegetarian organic; metformin (no diabetes), vitamin D3
Exercise: 7 days a week, 1 hr/day
No trastuzumab, no taxane, no AI
NED

Last edited by AlaskaAngel; 10-26-2010 at 08:25 AM.. Reason: to clarify regarding early stage / stage I
AlaskaAngel is offline   Reply With Quote