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Bioidentical hormones..is anyone taking after breast cancer?

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Comments

  • dlb823
    dlb823 Member Posts: 2,701
    edited March 2012

    Here's a very interesting commentary by Dr. Susan Love on that recently published study re. estrogen alone lowering bc risk in post-menopausal women:

    http://blog.dslrf.org/?p=497 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited March 2012

    Dr. Susan Love stood pretty much alone in saying that ERT likely was not benign, at a time when other doctors were rushing to prescribe it to women. So I kinda like her for that.

    But I wish I understood why there seems to be such a strong reluctance or avoidance of testing and proving just what outcome there actually is with the use of bioidentical or "normal" human estrogen as supplementation, especially given these unanticipated and contrary trial results.

    I wish there was more explanation of why something that is so unnatural as synthetic estrogen gets some endorsement, while bio-identicals get some unproven disapproval. What information  or proof indicates that the synthetic horse mare urine estrogen may act more like tamoxifen and block the receptor?:

    "Another theory is that Premarin, which is the drug the women in the estrogen alone arm of the study received, may itself be a factor. The drug is made from pregnant horses'  urine, and it contains a variety of estrogens, some of which may act more like tamoxifen and block the receptor. This would mean that we should not assume that "bio-identical hormones" would offer the same benefit."

  • MsBliss
    MsBliss Member Posts: 62
    edited March 2012

    Being triple negative, I started using bhrt almost immediately after diagnosis...but that is a different playing field than being hormone positive. Also, it is possible to develop other types of bc, so it is not a completely safe bet by a long shot.



    But we are learning that it is not the presence of hormones that is the issue or problem....it is how they are metabolized that is the crux of the issue. When we metabolize estrogen it can go toward the inflammatory type 4, or the favorable type 2. In fact, Panzem, a patented estrogen metabolite, is 2 methoxyestradiol and it is being studied for it's breast cancer protective effects.

  • Kaara
    Kaara Member Posts: 2,101
    edited March 2012

    It seems as though we are on the cusp of a new learning curve for bc prevention.  I just hope that some studies will be done to help women so that they don't have to continue to suffer through all of the toxic treatments that are now the only "proven" way to treat.

    I'm reluctantly taking the tamoxifen, and so far having fair results on the SE's, but I wonder about the long term effects down the road.  I'm still doing my heavy antioxidant regimen, as well as my anti cancer diet in hopes that this will keep bc at bay until some better prevention comes along.

    Does anyone know if the estriol cream is safe to use to prevent atrophy and dryness?  I have some that I was given when I was on BHRT, but never had to use. 

  • karen1956
    karen1956 Member Posts: 4,632
    edited March 2012

    I've been told that estriol cream is safe...it was just Rx for me, but I haven't started it yet. 

  • thenewme
    thenewme Member Posts: 174
    edited March 2012

    I know many people don't trust or like the FDA, but in any case, here's what the FDA says about estriol:

    FDA:  Bio-Identicals:  Sorting Myths from Facts

    "FDA is taking action against pharmacies that make false and misleading claims about "BHRT" drugs and is encouraging consumers to become informed about these products and their risks. Here is some information to help sort the myths from the facts:

    Myth: "Bio-identical" hormones are safer and more effective than FDA-approved MHT drugs.

    Fact: FDA is not aware of any credible scientific evidence to support claims made regarding the safety and effectiveness of compounded "BHRT" drugs. "They are not safer just because they are 'natural,'" says Kathleen Uhl, M.D., Director of FDA's Office of Women's Health.

    Drugs that are approved by FDA must undergo the agency's rigorous evaluation process, which scrutinizes everything about the drug to ensure its safety and effectiveness-from early testing, to the design and results of large clinical trials, to the severity of side effects, to the conditions under which the drug is manufactured. FDA-approved MHT drugs have undergone this process and met all federal standards for approval. No compounded "BHRT" drug has met these standards.

    Pharmacies that compound these "BHRT" drugs may not follow good drug manufacturing requirements that apply to commercial drug manufacturers. Compounding pharmacies custom-mix these products according to a health care professional's order. The mix contains not only the active hormone, but other inactive ingredients that help hold a pill together or give a cream, lotion, or gel its form and thickness so that it can be applied to the body. It is unknown whether these mixtures, which are not FDA-approved, are properly absorbed or provide the appropriate levels of hormones needed in the body. It is also unknown whether the amount of drug delivered is consistent from pill to pill or each time a cream or gel is applied.

    Myth: "Bio-identical" hormone products can prevent or cure heart disease, Alzheimer's disease, and breast cancer.

    Fact: Compounded "BHRT" drugs have not been shown to prevent or cure any of these diseases. In fact, like FDA-approved MHT drugs, they may increase the risk of heart disease, breast cancer, and dementia in some women. (See www.nhlbi.nih.gov/whi/index.html for information on the Women's Health Initiative, a large, long-term study that tested the effects of FDA-approved MHT drugs.) No large, long-term study has been done to determine the adverse effects of "bio-identical" hormones.

    Myth: "Bio-identical" hormone products that contain estriol, a weak form of estrogen, are safer than FDA-approved estrogen products.

    Fact: FDA has not approved any drug containing estriol. The safety and effectiveness of estriol are unknown. "No data have been submitted to FDA that demonstrate that estriol is safe and effective," according to Daniel Shames, M.D., a senior official in the FDA office that oversees reproductive products."

  • Kaara
    Kaara Member Posts: 2,101
    edited March 2012

    thenewme:  Thank you for your post and comments.  Regarding the FDA..IMHO...it is hard for me to give them much credence since they approved the use of HRT (just one example) and as a result, many women are now suffering the harmful effects of using it.  Clearly the use of the estrogen and provera combination has caused many women to develop bc.  The use of birth control pills has done the same, yet there have been no recalls of these drugs, just a black box warning.  There are many other harmful drugs on the market with the FDA approval stamp that have dire consequences as well.  They approve these drugs developed by the big pharmaceutical houses, and yet they come down hard on anyone trying to develop a natural substance that would be of benefit to all.

    Based on that, why would I care what they approve or disapprove?  They are justifying their existence just like every other branch of our government.  Do they have a purpose?  Yes, I believe they do, but right now their priorities are not in line with the best interests of the public.  They are being governed more by big business and profiteers than by what is right for all of us. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited March 2012

    thenewme,

    The unknown continues to be a big question mark and a failure to investigate and provide proof. Risk is there with any unknown, but it is not proof. We need proof either way. We get lots of proof of the various problems inside the FDA. There are many unstated very serious SE's that have been proven with the use of various drugs approved by the FDA for specific uses, as if the SE's don't count when it comes to being an FDA-approved drug vs one that is not.

    What is key here is not to buy into either one so heavily that the failure to investigate and prove continues to be used as a weapon to prevent the use of therapies.

    Yes, the FDA is pretty much consistent about it.

    "Here is some information to help sort the myths from the facts:"

    "FDA is not aware of"  (they don't know, so it isn't fact)

    "BHRT" drugs have not been shown" (they haven't demonstrated, so it isn't fact one way or the other)

    "Pharmacies that compound these "BHRT" drugs may not follow good drug manufacturing requirements" (they also MAY follow them)

    "It is unknown whether these mixtures, which are not FDA-approved, are properly absorbed or provide the appropriate levels of hormones needed in the body. It is also unknown whether the amount of drug delivered is consistent from pill to pill or each time a cream or gel is applied." (The FDA doesn't know one way or the other)

    "they may increase the risk of heart disease, breast cancer, and dementia in some women" Or they MAY not.

    "The safety and effectiveness of estriol are unknown. "No data have been submitted to FDA that demonstrate that estriol is safe and effective,"  (No data means no data, either for or against.)
  • dropjohn
    dropjohn Member Posts: 26
    edited March 2012

    Kaara -

    Using estogen creams (Estrace,, etc) is thought to raise the risk of recurrence by a *slight* amount - basically, anything that raises your  levels of estrogen is thought to raise the risk of recurrence. If you're already on Tamoxifen, and assuming you're premenopausal,  your circulating levels are already raised - tamoxifen blocks the uptake of estrogen, but not the production thereof.

    That  being said, it's believed the use of estrogen creams are relatively safe - if you're greatly concerned, you could start with the estring (if you can tolerate it) which is extremely low dose, and has less systemic uptake than creams.

    Personally, I'm not that concerned - and I'm far more concerned with quality rather than quantity.

  • Kaara
    Kaara Member Posts: 2,101
    edited March 2012

    dropjohn:  I'm actually post meno...I'm on tamox because my MO felt it was a better fit for me than an Al right now.  I'll take it for two to three years then switch.  I've already had a complete hysterectomy, so there shouldn't be much estrogen in my body.

  • Kathy044
    Kathy044 Member Posts: 94
    edited March 2012

    Kaara, tamoxifen is estrogen, a specially designed estrogen that blocks activity in breast cells, but it is still nevertheless estrogen and acts like replacement estrogen in other parts of the body, bones, brain, eyes uterus, etc.

    .
  • Kaara
    Kaara Member Posts: 2,101
    edited March 2012

    Kathy:  So if that is the case, why does everyone complain about the dryness from lack of estrogen?  So far I haven't felt that, but I was just trying to plan ahead.  I've never heard it explained quite that way.

  • dropjohn
    dropjohn Member Posts: 26
    edited March 2012

    I'm seeing the onco gyno next wednesday - less of a fight than I expected, looking as though we're moving towards transdermal hormones.

    thak ye gods and little fishes 

  • [Deleted User]
    [Deleted User] Member Posts: 32
    edited March 2012

    Tamoxifen is not estrogen, although I  can see how people can confuse it with estrogen because of it's dual actions on specific estrogen receptor sites. It is chemically similar to estradiol but is not estradiol nor is it estrogen.  Here is a good article explaining what the chemical makeup is and the mechanism of action in layman's terms:

    http://theoncologist.alphamedpress.org/content/7/2/163.full

  • karen1956
    karen1956 Member Posts: 4,632
    edited March 2012

    Saw my onc today for 6 month check up....when I mentioned BHRT...he goes...you're NOT taking estrogen or progesteron....I agreed and said the doc I was seeing was not mentioning ER or PR for me....but DHEA, DIM and testosterone....he has reservations about DHEA as says it can convert to ER....he's okay with DIM, testosterone and even ER vaginal cremes...Onc says its all about doses...and in the low doses these are okay...now just waiting on labs back from BHRT doc as well as labs that onc drew today.....

  • slalu
    slalu Member Posts: 8
    edited April 2012

    ccjj: I have been on hrt since menopause at age 45. I was diagnosed and treated for dcis in

    2007. I then had what I call "the hormone battle." Docs cutting off my hormones to protect

    me from reccurence ,etc. If you have been on hrt and stop suddenly, you will become very

    ill from severe symptoms. I finally found two docs who respected my decision to contine

    hrt and my quality of life issues. The only hrt that should be used is the estradiol patch

    and prometrium progesterone. Prempro had synthetic progesterone toxic to breast.

    heBioidentical hormones have not really been tested and mainstream hormone experts

    would never recommend these. Menopause is not natural when women may be living

    thirty years with no estrogen. Many need testosterone supplement if low, if you

    care about your sex drive. How about risk of osteoporosis and heart disease

    from estrogen deprivation.? Any mood problems? Forget it. You will need estrogen.

    Maybe some women fine without it, most are not. I have a bipolar disorder. Hard

    enough to tolerate without hormones consistently balanced. Tru, I have dcis,

    but high grade.I would rather live a shorter time than lose the vitality that those

    hormones give me.

  • slalu
    slalu Member Posts: 8
    edited April 2012

    ccjj: I have been on hrt since menopause at age 45. I was diagnosed and treated for dcis in

    2007. I then had what I call "the hormone battle." Docs cutting off my hormones to protect

    me from reccurence ,etc. If you have been on hrt and stop suddenly, you will become very

    ill from severe symptoms. I finally found two docs who respected my decision to contine

    hrt and my quality of life issues. The only hrt that should be used is the estradiol patch

    and prometrium progesterone. Prempro had synthetic progesterone toxic to breast.

    heBioidentical hormones have not really been tested and mainstream hormone experts

    would never recommend these. Menopause is not natural when women may be living

    thirty years with no estrogen. Many need testosterone supplement if low, if you

    care about your sex drive. How about risk of osteoporosis and heart disease

    from estrogen deprivation.? Any mood problems? Forget it. You will need estrogen.

    Maybe some women fine without it, most are not. I have a bipolar disorder. Hard

    enough to tolerate without hormones consistently balanced. Tru, I have dcis,

    but high grade.I would rather live a shorter time than lose the vitality that those

    hormones give me.

  • slalu
    slalu Member Posts: 8
    edited April 2012

    DLB823: Dr. Lee was selling progesterone.The only need for progesterone is to protect the

    uterus when taking estrogen.(except when prescibed for menopausal problems or

    pregnancy issues. It can make you feel tired and for some cause pms type side effects.

    I am a patient of a top hormone and menopause specialist. Check out his website:

    info could help many of you. Dr.Alan Altman.com.

  • slalu
    slalu Member Posts: 8
    edited April 2012

    kara :A top breast surgeon in Boston and most hormone specialists agree that the

    combination of estrogen and progesterone is bad for the breast. Not so much estrogen

    alone. It can't be proven that estrogen will cause a recurrence. Many women taking

    it have less mortality from bc, maybe cancers found earlier. Not clear. Don't

    tolerate that quality of life  because of fear of higher risk, maybe not much

    higher statistically. I have throid disease and if estrogen level drops too low

    palpitations and anxiety would be intolerable.

  • slalu
    slalu Member Posts: 8
    edited April 2012

    kaara:I forgot to mention that premarin is not the most efficient way to replace estrogen:

    lost when processed in liver. A low dose patch like vivelle may be better..

  • Kaara
    Kaara Member Posts: 2,101
    edited April 2012

    slalu:  I had switched to the vivelle patch nine months before dx.  I was doing just great and never felt better!  I've had quite a challenge since going off all BHRT, but my bioidentical doc would not issue a new prescription when he found out I had bc.  I'm seeing a naturopath who is giving me all kinds of supplements and they are taking up some of the slack that I had from going off the hormones.  I'm beginning to feel better and am having less hot flashes than before even though I'm also taking tamoxifen now, which is supposed to protect my bones, as well as prevent bc cells from attaching to my estrogen receptors in the breast.  It's a crap shoot!

    Nautropath said we could revisit the BHRT issue once I have about a year NED behind me. 

  • dropjohn
    dropjohn Member Posts: 26
    edited April 2012

    I just started today on the generic of the Climara patch (.0375 mg/day - the one I'm using is put out by Mylan) - I finally found a doctor who was willing to listen to me and come up with a game plan.

    thank ye gods and little fishes. I did not agree to chemical castration, and was not warned of it. My quality of life has been steadily declining, to the point where it was not supportable. 

  • karen1956
    karen1956 Member Posts: 4,632
    edited April 2012

    Saw the "BHRT" doc today to go over my labs.....She Rx thyroid for me...even though my numbers were WNL she says my symptoms fit hypothyroid....also she is Rx DHEA and testosterone.......My Vit D levels were quite low.....so adding that to the regimine.....plus DIM....she will check levels again in 2 months...Sure hoping I get some relieve and improved QOL....I will post more later but it will probably be after the week-end some time.....Lots more info but I need to go look it all up...She did a good job explaining everything, but without my notes, I can't explain it all......

  • AnneW
    AnneW Member Posts: 612
    edited April 2012

    Sounds good, Karen!! I started Synthroid 2 weeks ago, too, for subclinical hypothyroidism. Numbers in "normal" range, but endo folks like LOW-normal. Can't tell any big difference yet. getting my D tested in a few weeks, I suspect that's low, too.

    I hope the DHEA/testosterone combo works. Are you using the androderm patch or a cream for the testosterone? I used androderm for a while several years ago, and the only thing I got from it was more facial hair!!

  • karen1956
    karen1956 Member Posts: 4,632
    edited April 2012

    Anne....Doc Rx sublingual....the DHEA and testosterone are being compounded together....doc feels that the cremes can be inconsistent....and for thyroid, she Rx Armour thyroid.....my Vit was 26....The doc I'm seeing is also a BC survivor and we use the same onc!!!  SO its nice that she has both a clinical and personal understanding to all this ....

  • slalu
    slalu Member Posts: 8
    edited April 2012

    kaara:

    I am interested to know if you are on estrogen only, as is better for the breast than taking

    progesterone also. You will have to fight for your homones, if you want to take them.

    Fortunately, my bipolar problem was why docs felt I needed hrt. Unstable hormone

    levels can cause suicidal mood swings. There is no proof that hrt after bc raises

    mortality , unless advanced, mets,etc. Then dangerous ofcourse.

    Dr. Patricia Kelly is a geneticist in Berkeley. She wrote a book:"Assess your true risk of

    Breast Cancer." It helped me after diagnosis and treatment. She discusses hrt in

    one chapter and explains what statistics mean in terms of actual numbers.

    It is worth looking at. She is the source for the doctor who prescribes my hormones.

    However, the real savior was Dr. Alan Altman who respects the patients concern

    for their quality of life and lets them make the decision. Where would I ever find

    another doc like him. Actually he is listed in the back of one of Suzanne Somers

    books as a hormone expert, menopausal expert and previously gyn. He relocated

    to Aspen Colorado from Boston .Still does consults and lectures all over the

    country about hrt. Also made a movie about menopause, releasing now.

    He would caution patients about bht. Uses state of the art estrogen patch

    or ring,and progesterone if no hysterectomy. Progesterone is used to

    treat many gyn or pregnancy problems, but will make you feel lousy

    without estrogen. I know because I was treated for endometriosis

    with various progestins and low estrogen birth control pills.

    I felt terrible all the time.But why didn't I get a terrible breast cancer

    from all that? Only dcis,but a high grade. If it returns it can be treated

    again, although difficult if same breast, probaby would be mastec.

    I have a top surgeon at MGH and for now feel better on this hrt

    than the birth control pills.

  • Kaara
    Kaara Member Posts: 2,101
    edited April 2012

    slalu:  I was on estrogen only (premarin) for twenty years prior to going on BHRT which included progestrone and DHEA.  My bc occurred shortly after that, so I really don't think the addition of the progestrone or DHEA had anything to do with it.  Prior to the premarin and my complete hysterectomy, I was on birth control pills.  I think that was the culprit in my bc dx, because I took them for over twenty years.

    At my age (71) I am going to have to think long and hard about going back on hormone therapy.  I didn't do rads and I'm taking tamoxifen and doing ok on it, so I don't think I'm going to push the envelope unless I really begin to feel crummy.  So far just a few hot flashes that I can live with. 

  • AlaskaAngel
    AlaskaAngel Member Posts: 694
    edited April 2012

    Had a subtotal hyst 3 years prior to my dx (ovaries left in). Never used any birth control or hormonal support.

    Medical providers acknowledge that excess hormones (such as testosterone level) can contribute to aggressive mood and behavior, but do not acknowledge that hormonal deficit also will create significant changes in mood and behavior. Instead it is more convenient for them to name the medically created loss of hormonal balance "depression", and throw antidepressants at it. They aren't doing the homework to understand how to manage hormonal balance adequately.

    A.A.

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2012

    Finally got the results last week of the 2nd Complete (24 hr.) Hormones test I've done, and my total estrogen is still exceedingly low, even without I3C.  Based on other hormone levels I don't fully understand, my ND added a supplement to increase Methylation activity to my regimen, and also a Liver Support product.  But she is also suggesting that I could consider adding a very small amount of estrogen+progesterone to protect my heart and bones.  I just don't think I'm ready to do that, but I'm conflicted.  I think she's been absolutely on-target with all of her other recommendations to date, and she has other bc survivor patients doing well with some estrogen and progesterone.  But I can't set aside my beliefs that (1) we are each very unique, so the fact that others are doing okay doesn't mean it's okay for me; and (2) bc can be tricky -- even mutating to survive --  so I might somehow end up feeding or fueling it (if it's still hanging around), instead of benefiting my heart, etc.

    OTOH, I want to be on the cutting edge of this stuff (e.g. hormone testing, etc.), because I totally believe in figuring out where we were out of balance in the first place, and trying to correct those imbalances as a way of staying healthy going forward.   I'm just not sure I trust adding any form of estrogen back into my body.  

    I'm not going to decide today or tomorrow, but I am open to any recent research or information anyone might be able to point me towards to support a decision either way.  

    And, Kaara, I love your new avatar!  I've always enjoyed your input, and it's so nice to have a face to put with your posts.    Deanna 

  • kcshreve
    kcshreve Member Posts: 349
    edited April 2012

    A new article just came across my computer - says bio-identical estrogen does not increase breast cancer risk. I wish they'd all get together, do some really, truly honest work and figure it out once and for all:  

    http://jeffreydach.com/2012/03/16/hormone-replacement-therapy-hrt-does-not-cause-breast-cancer-new-study.aspx