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Old 03-07-2013, 10:44 AM   #1
Lani
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why doctors don't follow blood estrogen levels to see how well AIs working, whether

chemo resulted in premature menopause, whether such menopause is temporary or not....

Probably because the methods of measuring serum estrogen are not rigorous/accurate enough. Here is a position statement from the endocrine society just about that.

Better Estrogen Testing Methods Needed to Improve Patient Care
Tuesday, March 5, 2013

Contacts:

Aaron Lohr
Director, Media Relations
Phone: (240) 482-1380
Email: alohr@endo-society.org

Jenni Glenn Gingery
Manager, Media Relations
Phone: (301) 941-0240
Email: jgingery@endo-society.org



Endocrine Society issues Position Statement on estradiol measurement

Chevy Chase, MD—In a Position Statement unveiled today, The Endocrine Society advocates that all methods for measuring estrogens, which play a crucial role in human biology, be made traceable to a common standard.

In addition to the well-known role of estrogens in sexual development, these hormones, particularly estradiol, have a significant impact on the health of the skin, blood vessels, bones, muscle, kidney, liver, digestive system, brain, lung and pancreas. Studies have linked changes in estradiol levels to coronary artery disease, stroke and breast cancer.

“Estradiol levels need to be accurately, precisely and consistently measured to provide the proper care for patients from the cradle to the grave,” said the statement’s lead author, William Rosner, MD, of Columbia University. “Health care providers rely on estradiol testing to diagnose and help treat a variety of conditions, including infertility, osteoporosis and breast cancer. Current testing methods need to evolve to meet patients’ needs.”

The statement identifies a number of issues with the current testing methods used for a typical patient’s care. Most of the tests used in the clinical setting cannot detect the low estradiol concentrations found in men, children, menopausal women and breast cancer patients taking drugs that decrease estradiol levels. In addition, other compounds in the body can interfere with the testing, leading to results that can be 10 times the true estradiol level. Quality assessments have found large variations in measurements performed by different laboratories or with different pieces of equipment. Accurate results are needed so that diagnoses are not missed, and patients and health care providers can make informed decisions about treatment options.

In addition, current testing methods limit the ability to generalize results from any given study to the population at large. Furthermore, in the current environment, data from different studies often cannot be compared because measurements and standards were not uniform.

Although a “gold standard” estradiol testing method using mass spectrometry exists, its cost and complexity have discouraged many clinical and research laboratories from implementing this approach.

“The Endocrine Society calls for physicians, members of the research community, government agencies, patient advocates and insurers to collaborate to make accurate testing more accessible,” Rosner said.

Recommendations in the statement include:

The development of a universally recognized estradiol standard to which all measurements can be traced;
The development of estradiol reference ranges specific for age, gender and stage of reproductive development, including puberty/adolescence, menstrual cycle and menopause;
A wider recognition among physicians, laboratory staff and researchers that low estradiol values in men, children and menopausal women obtained using current clinical testing methods are likely to be untrustworthy; and
The creation of new methods capable of accurately and precisely measuring small concentrations of estradiol in routine clinical specimens. Until such methods are available, a system needs to be implemented to continuously evaluate existing testing and facilitate the improvement of estradiol measurements.

Other authors of the statement include: Susan Hankinson of the University of Massachusetts, Amherst; Patrick Sluss of Massachusetts General Hospital; Hubert Vesper of the U.S. Centers for Disease Control and Prevention; and Margaret Wierman of the University of Colorado School of Medicine.

The statement, “Challenges to the Measurement of Estradiol: An Endocrine Society Position Statement,” appears in the April 2013 issue of The Journal of Clinical Endocrinology and Metabolism.


# # #

Founded in 1916, The Endocrine Society is the world’s oldest, largest and most active organization devoted to research on hormones and the clinical practice of endocrinology. Today, The Endocrine Society’s membership consists of over 16,000 scientists, physicians, educators, nurses and students in more than 100 countries. Society members represent all basic, applied and clinical interests in endocrinology. The Endocrine Society is based in Chevy Chase, Maryland. To learn more about the Society and the field of endocrinology, visit our site at www.endo-society.org. Follow us on Twitter at https://twitter.com/#!/EndoMedia.
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Old 03-07-2013, 05:09 PM   #2
tricia keegan
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Re: why doctors don't follow blood estrogen levels to see how well AIs working, wheth

Thank you Lani, like so many others I think, I so appreciate your efforts in research and posting so much info, I'm sad to say there's much I don't understand sadly (my loss) and wondered if anyone out there that understands more than I would be prepared to post the findings of your research in simple language we all could relate to???
Thank you on behalf of many for taking the time though.
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Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 03-08-2013, 11:27 AM   #3
AlaskaAngel
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Re: why doctors don't follow blood estrogen levels to see how well AIs working, wheth

Hi Tricia,

Lani's title of the thread helps I think. (I need a bigger brain myself for some of it!)

What has been quite puzzling to me in particular is the longtime disconnect between most medical practice and endocrinology when it comes to cancers like breast cancer or prostate cancer.

I think the study demonstrates the concern that endocrinologists have about the lack of standardization of a test for estrogen levels because it is so key to being able to offer patients more definite metabolic management, rather than the present hit-and/or-miss endocrine guessing game that we are presently subject to when making decisions about our treatment. I think endocrinologists are starting to see that practitioners in other fields are not accepting or sharing enough responsibility for helping to put more emphasis on seeing to it that the development of that standardization be done.

The issue of weight gain post-treatment postmenopause and how it affects recurrence, and the complete absence of medical application of that information at the time of my treatment led me first to the cancer center dietitian for help. He had awareness of the importance of weight management but was not as aware of the endocrine/metabolic basis behind it in terms of figuring out how to best target the problem.

That then led me to schedule with an endocrinologist. That it itself was a real eye-opener for me. They seem to be so solidly booked just dealing with diabetes/pancreatic imbalances, and thyroid issues that they have no background training for dealing with the endocrinologic issues in regard to cancers like breast cancer. Even with trying to schedule an appointment in such a large city of Seattle, they were all turning me away without being willing to even see me one single time about it. I finally connected with one who reluctantly agreed to see me.

Eventually I mentioned that I was aware that a number of clinical trials were beginning for the use of the very common metabolic drug metformin for breast cancer patients to reduce recurrence rates. Although he is very knowledgeable in his field, he was unaware of the trials. The disconnect between endocrinology and other medical practice beyond diabetes and thyroid disease has been very real.

I think endocrinologists are seeking to make sure it is understood that for better medical care to happen, everyone needs to recognize the importance of the lack of standardization for testing such key information as estrogen levels.

I hope that helps some....

A.A.
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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
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Old 03-08-2013, 12:02 PM   #4
Lani
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Re: why doctors don't follow blood estrogen levels to see how well AIs working, wheth

AIs seek to stop the conversion of testosterone to estrogen in order to avoid "feeding" estrogen responsive breast tumors (or cells related to them which take up residence elsewhere)--by "feeding" I am referring to encouraging/allowing their growth and spread

Chemotherapy often puts patients into early menopause (ie their ovaries stop secreting estrogen)--in some patients it is permanent, in others temporary

Some foods, cosmetics etc contain estrogen-like compounds which may enter the blood stream and act like estrogens on tumor cells.

Trying to determine if a patient is in menopause, if AIs are working or whether some other elements in the environment are causing an increase in the body's estrogen has been difficult because we do not yet have a totally reliable test for blood estrogen content.

Makes it hard to interpret results of some trials as to whether patients truly tok their AIs for as long as they were supposed to, whether AIs work equally in all,
whether other compounds are interfering etc.

Hope this helps!
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Old 03-08-2013, 05:45 PM   #5
tricia keegan
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Re: why doctors don't follow blood estrogen levels to see how well AIs working, wheth

Thanks AA and thank you too Lani!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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Old 03-08-2013, 08:48 PM   #6
Emy
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Re: why doctors don't follow blood estrogen levels to see how well AIs working, wheth

thanks Lani for posting this....I want to take medformin, but not sure my oncologist will give to me, will ask next week....I am not diabetic, but it has been shown to inhibit growth of liver tumors...
Eileen
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Eileen's history her2+, er+,pr-, Pk13 mutation
Feb 2017. Herceptin and perjeta ..still ned
Oct 2015 dendritic cell vaccine university of Pennsylvania..6 weekly injections...boosters every 3 months
July 2015 stopped weekly taxol (2.5 years of weekly taxol) still on herceptin perjeta every 3 weeks..still ned
Jun 2014 liver ablation of 1 liver tumor..now ned
Jun 28, 2013 ca15-3 24, cea 3.8... Pet scan showed 2 liver tumors with intensity of 2.7 and 2.5 (11/13 intensity was 8.0)
Jan 2013 herceptin, perjeta every 3weeks, taxol weekly
Jan 2013 MRI showed 3 liver tumors doubled in size ca-15 is 55 end of month 71, cea 7
Dec 2012. Pet scan showed single liver nodule, having MRI liver on dec18th...MRI liver 3tumors... on herceptin, tykerb , fulvestrant ca-15-3 is 42
Sept 2012 ca-15 went from 85 to 35, pet scan showed decrease
May 2012 herceptin every 3 weeks, 1500 tykerb daily (6pills) and fulvestrant every 3 wks
May 2012 herceptin stopped working ca-15 is 85
Sept 2011 started herceptin every 3 wks and femara daily..mets to liver. Bone and lymph nodes
2011 liver mets...all samples from 2001 and 2010 reviewed...her2 positive, fish 5.4. Er positive, prog neg. Stage 4 breast ca...never was lung cancer
2010 16 weeks of chemotherapy for lung cancer (incorrect). Carboplatin and vinalbine...was actually breast ca mets
2010 misdiagnosed with lung cancer ..2cm tumor removed..lower right lobe removed
2001-2006 tamoxifen
2001. Ductal ca. Rt mastectomy
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