Bioidentical hormones..is anyone taking after breast cancer?
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AA,
Are you saying that primary goal of surgery, chemotherapy, and radiation is to "change the endocrine system?"
Further, are you saying that surgery, radiation, and chemo are "endocrine management" therapies?
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AlaskaAngel, I think part of the answer to your question is that conventional medicine operates pretty much on a one-size-fits-all approach -- a "standard of care" that doesn't allow for individual differences, other than the most obvious markers, such ER, PR & Her2 status.
I saw my onc yesterday for a 6 mos. follow up, and decided to tell him about the results of the first Complete Hormones Test my ND had done a few months ago. (I'm actually doing another one this week.) As I anticipated, he reacted with a smirk and some eye rolling, but then he did appear a bit interested -- maybe even impressed -- with the complexity of the report, took a few seconds to quickly flip through it, and at least seemed genuinely pleased that my estrogen levels are very low, albeit not in the best ratios -- the subtlety of which I believe eluded him.
Wouldn't it be wonderful if our docs could work together in this area, whether on a review board or simply by sharing their knowledge in our follow up care? Deanna
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thenewme,
Exactly my point. Why should a radiologist or surgeon or an oncologist be considered an expert on the changes to the endocrine system that happen due to cancer therapy?
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dlb823,
In a word - YES.
When I visited my gyn to deal with the vaginal issues and libido issues, I asked her, isn't it time those who see vaginas daily actually get some quality time to talk with the crisis-management-only specialists like the oncologists, after decades of lack of any discussion about such things on any integrated basis?
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AA, You've lost me.
You asked, "Why should a radiologist or surgeon or an oncologist be considered an expert on the changes to the endocrine system that happen due to cancer therapy?"
They shouldn't be considered endocrine experts. Who said they should be? I don't know know of anyone who considers them to be.
In my experience, none of my specialists operated in a vacuum. There was a lot of consultation back and forth between the various doctors/specialties as applicable to my situation, but I'd never suggest that they all should be automatically and absolutely included from the beginning.
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dlb823: I believe you are spot on, and that is why I refuse to be put into the "one size fits all" basket of treatment. I refused rads because they wouldn't give me something that was more suited to my low grade low stage bc, like the external beam partial breast rads which are 5 days 2x a day. Others were getting it, but I got the runaround and the bait and switch tactic, and I became so annoyed that I refused altogether. Alaska Angel is right...I was never given all my options for treatment, just what the MO's were comfortable with.
Now I'm doing the tamoxifen as a compromise, but I'm doing it my way, starting on a lower dose, 1/2 what was prescribed. I will continue this as long as I don't have serious SE's.
The one thing I can control is my diet and supplement program and together with my holistic doctor, I am doing everything I can from a natural perspective to prevent a recurrence.
A lot of these meds we take do have an impact on our endocrine system, so A.A. is right, there should be someone on the boards that understands this aspect of treatment and can speak to it.
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Another reason why oncs, for example, deny and distance themselves from any connection between drugs and many SEs is because they're afraid of being sued. I still laugh about my onc's PA doing a rheumatology blood test when I developed a trigger thumb while on TC. In retrospect, it was probably the fact that I'd had to go off the HRT I'd been on for many years and the sudden drop in estrogen that caused it. But she acted like she'd never seen or heard of such a strange SE, when I know from being on BCO that it's not uncommon. Then, after I had a passing out episode when I tried Femara, the same PA wanted me to stop Femara for a week then restart it with an anti-anxiety drug! In other words, it was my fault (not the drug's) I passed out because I was anxious about taking it! If they'd simply bothered to look at my estrogen levels, they would have seen that I didn't have enough to modulate. It's really sad that we have to figure this stuff out for ourselves. Deanna
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"It's really sad that we have to figure this stuff out for ourselves" I agree with you 100% Deanna. After treatment, we should all be spic & span clean and not complain, after all we do/did have cancer !
At least my GP conceded that I know way much more about my BC than he does....but I can just imagine my endo, onco and gyn arguing on a board about whether or not I'm menopausal, that would be quite a laugh
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AA, I agree with you, but you're setting the bar is so very high. Just one step in the right direction imo would be for oncs to view estrogen levels as something pertinent. I know some ladies here have an onc who will run tests on estrogen levels, but mine (the second one) wasn't one of them. To this day, it totally floors me that they write a scrip for 'hormone therapy' but testing for estrogen levels 'isn't cancer related.' ??? And why is all the focus on estrogen? They create all these drugs to lower estrogen levels. And what about progesterone? Estrogen is in charge of cells cycling in, progesterone is in charge of cells cycling out.
A local friend of mine went through bc treatments the same year I did. She was already menopausal and has a decent doctor who runs labs frequently to monitor her levels. Her estrogen level was 2. Two! So when her onc (my first onc) wanted her to take tamoxifen, she asked him why would it be necessary to take a drug that interferes with estrogen attaching to receptors when her levels are next to nonexistent in the first place? Shrugging shoulders were the response and he retracted the recommendation that she take the scrip. She walked out, never went to see him again. She's alive and well and doing great 7 years later.
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I had Tamoxifen automatically recommended for me after chemo (pre-menopausal going in) and had to request that my levels be tested. Silliness.
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Just saw this come up on google news. Interesting article. It has more results from the Women's Health Initiative that looked at conjugated estrogens and women's health. Remember, this study looked at synthetic estrogens made from mares' urine, not Bio-identical estrogens. Still interesting stuff.
http://www.latimes.com/health/la-he-estrogen-breast-cancer-20120307,0,1238385.story
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As if we weren't confused enough!!! From today's news...
http://www.latimes.com/health/la-he-estrogen-breast-cancer-20120307,0,1238385.story
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That is a very good question to ask my new MO that I'm seeing on Thursday. Are you planning to test my estrogen levels prior to prescribing a hormonal for me? If not, why not? My bioidentical doc tested me last year and I was a little over 1, which was low according to him. My progestrone was zero. Now that I'm off all hormones, it certainly couldn't have gone up.
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Dropjohn....I got your pm...thanks....I love what your wrote....what you write describes me so well....One thing that I get the sense from so many people is that I should be greatful to be through Tx and to be NED 6 years post Dx....well...I can't be thankful when so much has been taken away from me.....and then people look at me and say...you do so much!!! but its not me compared to others, its me compared to me!!!! I'm not the person I was before Dx and have just about given up hope of every being that woman...yes, I know I'm 6 years older, but come on....many 55/56 year old women have healthy wonderful sex lives, have a zest for life etc....all the things that I miss..... I really do love my onc and have a high regard for him....he specializes in treating women with BC or at high risk for developing BC....but his job as he said to me is to "keep me cancer free'...So many docs work in a box....no one is orchestrating everything.....not the pcp, not the onc no one!!!! How many more docs can I add to my arsenal!!! I've seen a psychiatrist, psychologist, onc....don't see my PS or BS anymore (my doing)...only see my pcp if I'm sick....and I like my pcp.....The new doc I just saw re BHRT.....she also has her little area of concern....SO...how do we find to quarterback our health (besides us doing it alone, or with the help of a spouse if we are lucky) to go through this maze and figure out step by step what is best for us.....No one can (or should) make the Tx decisions for us, but it sure would be nice having someone lay it all out for us!!!
I haven't checked out any of the past couple links as sometimes its all so overwhelming!!!!
Thanks for this thread.....Karen
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thenewme: I so understand. I went into see my family Dr. to get an order for a mamogram, and ultra sound, I somehow just knew it was breast cancer. Anyway, he just patted my hand and said Oh I think it's nothing. I had to insist that he give me the orders anyway, just to satisfy me, so he did.
The mamogram girl was a joke...she could have broke open the cancer trying to get my boob into the right position and using all the pressure the machine had to try to get the area into the picture. I stupidly put up with that till she gave up. (that really hurt)
On to the ultrasound. My cancer was more on the chest wall so I should have just stuck with my instincts and only had the ultrasound. (there's that hind sight again) I could tell by the look on this girl's face I had been right, it was breast cancer.
Then to the surgeon's office...the only guy not on vacation was the very young, new guy who drew the short straw, I guess. I literally had to tell him how to do the core needle biopsy...and to just do it, it's ok. (that was back when I was still brave). He left me hanging for over 5 days over a holiday before he called to tell me it was bc by phone and that he had made an appointment for me for I think 10 radiation treatments starting tomorrow. Excuse me, what? That's when I started to put my foot down a little. I didn't have insurance then, so I would have to do my own cancer treatment research, and find cash and make deals with the offices to get prices as cheap as I could, and in writing from a decision maker, I might add.
On to calling the radiation office....Oh only $32,000 up front to get started! Guess, I'm gonna die then. Did not have the radiation.
The breast surgeon was even more young/dense...she said if I had a double mastectomy I would not get bc again.
You are sooooo right about needing more people on our side. I'll stop there. Let's just say I am good at telling Dr.'s no about things I've done research on, and give them the print outs as back up. Then they will admit they don't really have the answers they are just following everyone else.
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Well, I know for sure that they test men's testosterone levels at the drop of a hat when there is any issue involving their private parts, and I don't think they use male horses to produce their supplemental testosterone.
Did they just happen not to think up the idea that it might be worthwhile to study the use of natural estrogen (alone) supplementation, or is it just easier to study what the drug companies would rather sell?
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It was mentioned in a news segment on TV last night that while insurance doesn't normally cover BHRT for women, in men it will cover "certain" hormone treatments. What is that...testosterone? That really makes me angry when I find that we are not being given the same rights as men when it comes to medical treatments.
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Hi ladies,
Just finished my rad tx and its time to move on to the f--king hormones. Went to see my pcp and he's checking my levels on estro, prog, and test. I may be on my own for possible tx. Its a shame I have to find a dr willling to work w/me. The AI or tamo is out of the question for me. Estro was not the only culprit in my BC dx IMHO.
Kaara, Like you've said a diet change and suppliments makes more sense. I've been taking the DIM and it seems to be working. I'm having minor bone pain (placebo?)
Are there any circumstances when the ins. co. would cover hormone replacement?(if your a girl?)
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chef: Congratulations on getting through rads! I'm back on the tamox and so far so good. I'm seeing a new MO on Thursday so will ask about testing for hormone levels..would only seem logical now wouldn't it. Off to the eye doctor this morning to see what can be done about my advancing macular degeneration. Not excited about this visit. Hoping for some good news like a treatment that works!
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For all those who tend to label all alternative med "dangerous":
The present info regarding estrogen makes me glad and mad.
WHY did women have to BE guinea pigs for the drug companies in the first place for the use of estrogen supplementation? How many developed breast cancer because of the progestin that was used for the combo? If the drug companies could develop that combination drug, why couldn't or didn't they spend a little time and money on offering natural estrogen alone?
I happen to be one of those women who has been predicting that estrogen supplementation isn't the problem, it is the progestin that is problematic. I've not personally used any of the progestin, nor have any of my sisters.
Alt med may not be all benign, but give me a break.... People can rant about the dangers of alt med all they want to, but I don't buy the belief that drug companies did their homework before using their combo drug on women.
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Right on, AA!
Our docs act as if a FDA approval is like a gold stamp of approval from above. I wonder why that is as I listen to the minutes of warnings on the TV commercials for the drugs big pharma wants us to buy. Everything we put in our body's will effect something either in a negative or in a positive way....usually both.
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This is new, for the group of all women, from NAMS (there are still concerns about supplementation for those with a family history of bc). A copy might be worth carrying with you to your medical providers for discussion:
Hello. This Dr. JoAnn Manson, Professor of Medicine at Brigham and Women's Hospital and Harvard Medical School. I would like to talk with you today about a new position statement on hormone therapy from the North American Menopause Society (NAMS) that was just published in the journal Menopause.[1] This position statement is freely available on the NAMS Website, and it also is accompanied by a patient education handout that can be downloaded and may be very helpful for patient care. I would like to acknowledge that I served in the writing group for this position statement and also that I am currently serving as president of NAMS.
What is new in this 2012 position statement? First, the statement does reaffirm that hormone therapy is the most effective treatment for vasomotor symptoms and other symptoms of menopause. However, now with a decade of research findings since publication of the first results from the Women's Health Initiative (WHI), it has become clear that there are important distinctions between estrogen plus progestin and estrogen alone in terms of benefits and risks. Furthermore, the benefit/risk profile of hormone therapy can vary by a woman's age, time since menopause, and her personal risk-factor profile. One of the reasons that previous guidelines have recommended avoiding treatment with hormones for more than 5 years is that estrogen plus progestin is linked to an increased risk for breast cancer after 3-5 years. This has been seen in many types of studies. Estrogen therapy alone was associated with no increase in the risk for breast cancer in the WHI Estrogen-Alone Trial, with an average of 7 years of treatment and up to 11 years of follow-up. These findings suggest that there may be more flexibility in terms of the duration of treatment of women with hysterectomy who are taking estrogen alone.
Overall, it is suggested that treatment with hormone therapy should be individualized -- that it will depend on the severity of a woman's symptoms, impairment of quality of life, her personal risk-factor status, and her personal preferences. Women who have early surgical or natural menopause may be treated until the average age of natural menopause, around age 51, in the absence of contraindications, and even longer if necessary for symptoms. This is also highlighted in the position statement.
Evidence has been increasing that different formulations and routes of delivery (for example, transdermal or low-dose estrogen) may have different benefits and risks. Overall, we need much more research on the role of formulation and route of delivery of estrogen, but we have some evidence that the transdermal route of delivery may have some advantages, especially for women who are at increased risk for thrombosis.
My colleague, Dr. Andrew Kaunitz, is doing an accompanying video on the subject of genital atrophy and the use of local vaginal estrogen. I would encourage you to watch his video as well.
The key point of the new position statement is that hormone therapy should be individualized. There is no "one-size-fits-all" approach to hormone therapy decision-making, and it will depend very largely on a woman's preferences, severity of her symptoms, and her personal risk-factor profile.
Thank you for listening. This is Dr. JoAnn Manson.
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Whoa there. Where's the beef? 1) There were early trials comparing both estrogen alone and estrogen with progestins (natural and synthetic) with placebo. The PEPI study set out to compare estrogen's effect on cholesterol levels in women, guess what, estrogen helped, but at great cost to the women who still had a uterus and were put at risk of endometrial cancer. It was the results of this study that led to the change in the original design of the WHI study by eliminating the planned estrogen alone arm. Ever wonder why the numbers of women randomized to each arm compared to placebo are so uneven, this is why. 2) The women in the WHI estrogen alone trial mentioned in posts above did not have a uterus, and most likely did not have ovaries also, or at least functioning ovaries after hysterectomy, so the results of women in this group cannot or should not be compared to women who have gone through natural menopause. Besides...3) The WHI estrogen alone study was halted eary due to the number of women having strokes in the estrogen arm.
Regarding the estring (which short for estrogen ring not e-string). My doctor suggested that I try this shortly after it was approved for use in Canada. The pharm rep had just been for a visit and she was able to get a sample. It was supposed to be non systemic. Well that is not exactly true, as I found out. I removed the ring after about three weeks because I didn't really like the feel of the ring when I had intercourse, sort of 'stiffened' up the cervical area, besides the discharge seemed pretty messy when I was used to being dry. I had a period within two weeks of removal and had to start the counting the months towards post menopause once again. I later found out that a study had been done using the est-ring on elderly women in a care home to help with vaginal 'atrophy'. Several women in the study had to withdraw because because of breast tenderness and/or unexpected bleeding. The effects of the est-ring are not one size fits all.
Kathy
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Thanks, Kathy. So the trials done earlier comparing estrogen alone, estrogens with progestins, and placebo were used to investigate whether there was an increase in breast cancer with the use of progestins as compared to estrogen alone or placebo? What did they show about the incidence of breast cancer?
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I would like to add a little perspective about "science"... [ this is coming from someone who has a Ph.d. is a "science" field and is also an altmed practitioner (me)]. Double blind studies are NOT the only example of science... The longest term "studies" are actually in chinese medicine where herbs were used and adapted as they found to work or not work...thousands of years of refinement. Was there observation? yes. Was it systematic? yes. Was it empirical? yes. Science comes in different colors, shapes and sizes. We in this country tend to believe there is only one type of science-- the kind mainstream medicine wants us to see.
...oh such heresy.... Q
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Kathy,
I used the estring for several years without problems of any kind and it did help for those years, but as time went by, the lowering levels of hormones weren't adequately dealt with using it so I stopped using it. I think the effect was primarily local but it was somewhat systemic in that it helped reduce the eye dryness and slowed the changes in vision deterioration while I was taking it.
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As a bit more perspective....
In the 10 years since I was diagnosed, the "atmosphere" we deal with has changed from being considered foolish by my medical providers for deciding to use the estring at all with a HER2 positive breast cancer diagnosis (with no trastuzumab use) that was HR+, and ditto for being a participant in the trial for low-dose use of testosterone for NED early stage breast cancer patients, and ditto for refusing to use any AI after stopping tamoxifen at 1 3/4 yrs, to one that might actually tolerate such individual "proof" that our treatment should be individualized.
A.A.
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Hi Kathy044 - Thanks for adding your perspective and voice of reason!
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Great post Quaatsi, especially coming from a scientific PhD
I really respect TCM, we have much much to learn from that tradition, as well as Ayurveda and Tibetan medicines
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estring is definitely systemic - at least for me. Not enough to compensate for the sudden loss of natural hormones though...
I have to see my oncologist next week and I'm dreading it.
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