Bioidentical hormones..is anyone taking after breast cancer?
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To me, the bioidenticals are just way too confusing. I would hate to make the wrong choice. Dont have a good dr ., who would be straight up on it.
These are the same Drs who act like arimidex or tamox are candy.
I dunno' anymore.
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Purple, I am not sure how that is calculated. Do you have a link? I ask because I think there may be differences in benefit, depending on your stage, grade, type etc. At least when I looked at the benefit for me, it was more than that. So far the SEs are not too bad, but thatbobviously varies a lot from person to person.
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You aren't ever going to get good info from a conventional doctor on bioidenticals. My BS said "estrogen is estrogen" when I asked him about it. That is so not true...there is good and bad estrogen...he just hasn't studied it. You have to go to a doctor that specializes in BHRT, and even then, if they know you have had bc they are reluctant to prescribe it because of the liability issues with the FDA. My ND knows that the BHRT is helpful to women because it balances the system, but he doesn't want to lose his license to practice medicine either. I understand his position.
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Medical "Compassion"
In response to:
"In 20/20 hindsight, I wouldn;t do chemo - the reduced risk of recurrence wasn't worth it for me. My onco score put me on the edge, and I figured I could deal with three months of hell - which I could. It was the fallout that killed me.
IMHO, I wasn't properly informed about the long term effects of chemotherapy - and concerns that I brought up before treatment around this were dismissed. I'm pretty unhappy with that."
My Experience
Especially devastating to me has been the medical failure over so many, many years of treatment of breast cancer to provide any genuine informed consent in advance of treatment, or any honest acknowledgement of their responsibility as medical providers to address the results. Plainly put, it is inhumane.
About a year or so ago, I attended a session at my major cancer center in Seattle that was offered to those newly diagnosed who were in the process of making decisions about treatment, to find out whether anything had changed since my diagnosis many years prior to that time. When I raised the issue, I was told that in the nurse's professional experience, I was the "exception" in experiencing significant sexual dysfunction due to breast cancer. I was advised to "seek counseling", which I then did. I was then informed by the counseling center that "the demand for counseling services by those presently in treatment is so great that we cannot offer services to those who are more than 2 years out from treatment."
A.A.0 -
Alaska Angel: You've got that right...I've experienced pain from intercourse and I'm only on 10mg of tamoxifen daily....I can only imagine how bad it would be for those on higher doses or on Als. I've said this before, but if we were men with this problem, there would be a solution for it.
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Even using the .i Vivelle patch, estring, and Estrace cream, I stll have genital discomfort in my daily life. I feel continualy *chafed* and raw. My clitoris has actually shrunk as well, which has certainly had an impact on my sexul life, as well as the fact that I am no longer a self lubricating mechanism - that whole section of the arousal cycle is missing.
It's hard to feel sexual when the usual response isn't there.
I just wrote a stiff letter to my (former) oncologist (and cc'd various folks in the admin at the hospital) about the fallout from chemo, and her lack of warning. I'm still angry.
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Bravo to you, dropjohn, for addressing your anger in a direct way, with those who are responsible.
I highly recommend in addition that others take the time to attend introductory newbie sessions whenever possible and speak up, to let others have a better chance than we had to make a truly informed decision, regardless of the bias of health care providers who have never undergone treatment.
A.A.
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dropjohn: are you taking antihormonal therapy? If you are, the fallout could be from that and not the chemo. I find that it has had an impact on me (slower response, pain on penetration) and I never did chemo. Maybe you need a little testerone added to your regimine..my BHRT doc was suggesting that before I was dx, but then everything came to a screeching halt when I got bc. Once I reach the one year mark cancer free, I am going to look into it again. QOL is important.
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Hi All,
I do take an AI, but being stage IV, my reason's are quite different than lower stages. I had already gone through menopause when diagnosed, so the AI hasn't created any unbearable se's. My libido is still intact, if not so rampant as when I was younger, but I'm not married or dating anyone so my frustrations are of a different sort. Anyway, I have a question about bio-identical HRT that I've asked before. I do understand their use for women who were thrown into menopause due to tx but why would you use them if you are post menopausal? Menopause is a natural process. Why would you want to circumvent it if this is a natural part of aging? I understand wanting symptom relief, hot flashes, sweats etc., but this passes. So how is taking bio-identicals truly natural when it is going against the natural aging process? Caryn0 -
Chemo contributed to mine, in pushing me to become more menopausal, and may have gone on alone to create the same problem with a bit more time. But the problem for me actually started within 2 weeks of taking tamoxifen after completion of chemo. So I agree with Kaara to a point, by my own experience.
A recent study showed that those who get the most benefit from tamoxifen are those who have very dense breasts. I would like to add a bit of info from my own experience, and a suggestion for using that information more productively, IF one opts to take the tamoxifen even though it can ruin one's sensual functions and sense of gender.
At completion of chemo I had a mammo and it showed I still had very dense breasts. After 3 months of tamoxifen, the breast density had truly disappeared and has never returned. The density is the support structure of the breasts, so the breasts sag without it, and in addition are significantly less sensual.
I think that medical practice should get closer to actual science in regard to tamoxifen. I think that those on tamoxifen should be monitored with mammograms for loss of breast density, and once it has been achieved they should be taken off the medication. I believe that is especially true when it comes to HER2 positive patients. I reduced my dosage on my own after the first year to 1/2 dose , and quit independently entirely at 1 3/4 years.
As an aside, I do not believe that the chemo did squat to deal effectively with the cancer for me, other than to push me toward menopause. I had originally suggested to my onc that having surgical ovarian removal plus tamoxifen would be adequate, without any chemo. Although i did not know it at the time, a year previously a European trial had demonstrated that ovarian ablation plus tamoxifen for ER+ patients worked just as well as CAFx6, the regimen that was commonly used at the time of my diagnosis. He insisted that I needed chemo without ever discussing the trial with me, even though the trial results were common knowledge among oncs.
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Alaska Angel: You are so right...my breasts are a lot less dense since taking the tamoxifen and I'm only on a half dose (10mg). It looks as though someone stuck a pin in them:( They were listed on my mammo as "moderately dense".
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I hate being a nudge but any answers/opinions to the question I asked above. I am really, really perplexed about circumventing the natural shift in hormones in a post menopausal women. I understand trying to alleviate the symptoms but they do pass eventually. Caryn
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Caryn: I think the main reason is to hold off the aging process as long as we can. It keeps our skin looking better, gives us more energy, keeps our libido intact, prevents mood swings, protects our bones, and basically balances our hormonal system. Although I'm feeling fine, I clearly don't feel as good as I did when I was on the BHRT, but better than I did when I was on only premarin. What the BHRT did was balance my hormones and put me on the right track to wellness. I was on it for only nine months before the dx, but I could really feel the difference. Without it, my supplementation program has had some positive effect, but I still have libido issues. When you are in a relationship and trying to enjoy intimacy with a partner, it becomes very difficult.
Personally, I would like to feel young and healthy as long as I can, but that's just me.
Hope that answered your question.
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Caryn, even the experts disagree on the question you've raised -- whether BHRT tho' "natural" is still unnatural, since we've already gone thru menopause. There have been several women on BCO who were dx'd with bc while on BHRT, so I don't totally buy the rationale that they're safe simply because they're non-pharmaceutical. But I do think that supplementing with them is safer than with HRT, as long as you have guidance from a really knowledgable hormones doctor who does the appropriate hormone testing and monitors your levels. But even then, there's no assurance you won't develop bc.
As Kaara said, supplementing with BHRT is supposed to protect our hearts, bones and brains, as well as keep our skin and other body parts from drying out. But, as with so many things, there's often a trade-off, including the possible increased risk of breast and gynecological cancers. Deanna
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Thanks, Deanna. That explains it a bit. I'm still unsure why women, especially women who go the natural route with everything else, would want to circumvent a very natural process even with bio identicals. We all make our choices I suppose. Caryn
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exbrnxgrl,
For those who are under age 55 the symptoms might pass, so I can understand anyone who is younger or even slightly older than 51 believing that the symptoms tend to pass for most people.
But the average age of menopause is 51, which means there are the same number of people on both sides of that number; and the average age for bc patients is 60 to begin with.
My onc thought all he had to do was tell me that I would probably become menopausal with chemotherapy. He left out any further details, which is pretty lousy for a guy who has been treating bc patients for 30 years now. No one in my family, which is loaded with women who have had bc, had ever done chemotherapy. My mother and older sister both had bc, and both said they had very satisfactory sex lives long after age 60. I am the ONLY person among the entire family whose "normal" pattern of sexuality was completely destroyed, at age 51, due to treatment.
Why would I not want to enjoy more normal aging, just lilke my sister and mother?
Why do these lies about treatment effects continue?
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Alaska Angel,
I was only asking about women who had gone through menopause with respect to wondering about use of bio-identicals exclusive of chemo or other conventional cancer tx. Sorry if I was unclear. I have the opposite problem...look great, feel great, excellent libido...no partner! I haven't had chemo but since I'm stage IV I probably will some day.
Caryn0 -
exbrnxgrl,
Your present sense of well-being is interesting in itself to me. Given that almost every darn form of treatment strips away our hormonal influences, I wonder if most of us who have bc also have stronger hormonal levels to begin with that encourage bc. I see posts by younger bc patients who are glad to get "past" the "temporary" sexual effects of chemo, and wonder just how much greater their risk of recurrence is because of that. In other words, I wonder if it just ain't really possible to have it both ways.
I'm not afraid of normal aging, but this is like watching it happen second by second fast forward, instead of year to year.
A.A.
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Deanna: I was one who was dx while on BHRT, but my doctors say that it wasn't the BHRT that caused the bc, but rather the 20 years of taking birth control pills that was most likely the culprit. They also don't believe that the premarin only that I was taking after my total hysterectomy caused me any risk, because there was no provera involved which is the one that involves the greatest risk to women. Personally, I have no idea what caused my bc...I'm just glad I caught it early, and I'm doing everything possible to make sure it doesn't recurr.
Caryn: Great that you are doing so well...I pray for you that it continues. You are wise to avoid the chemo as long as you can.
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Good point, Kaara. Just b'cuz one is dx'd while on BHRT doesn't automatically implicate it as the main culprit or even a contributing factor. Again, we just don't know. I was on HRT (Prempro) for quite a few years and feel that it was a huge contributor to my bc. But I also have some family hx (sister and cousins) and also used bc pills in my 20s. So I actually tend to believe that most of the time it's not one thing but a culmination of things that can be unique for each of us... Deanna
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Caryn, I have to agree with Kaara. Part of it is vanity, part of it is looking younger than my age and having always felt strong and healthy, and always enjoying having a sex drive, I take pride in keeping all of that up and am really disturbed by the changes that menopause has brought in so short a time. To me, menopause is the beginning of many things going downhill physically, and if there is a prevention for that, I'm in, even if it goes against "nature" because at least I feel better. To me, taking estrogen suppressing or blocking drugs also goes against nature and they don't make me feel good.
I did 3 years of tamoxifen and never thought about it possibly making me more saggy, stopped taking it in February and the past 6 months or so, have noticed them being lower down on my chest and not as firm. I know this doesn't sound like I'm going along with the program, but I'd love to go back to being premenopausal, and having a sex drive again, and having all the strong sensations back, and having the firm skin tone, and being able to sleep throught the night without being awoken by night sweats. I would do bioidenticals if my doctor would prescribe them, (but she doesn't want to take the risk, due to my ER/PR+ status), because I'm doing other things to lower my risk, like exercise and eating right.
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There are some things that I just can't buy into, and one of them is our collective and mostly passive acceptance of the blanket therapies and the assumptions underlying them, both by our medical providers and ourselves.
The majority of women on the planet never develop breast cancer. Now that we seem to find ourselves at a point where estrogen-stripping is THE goal, I'm asking myself (and you) whether medical providers should be thinking a little more proactively and less reactively about the basis for it.
If hormonal excess is the problem, then why hasn't there been more analysis into monitoring women's hormonal status as they age and establishing norms for that, to see if there are hormonal levels or other hormonal indicators to raise concern long before breast cancer develops in some of the women?
This is why I think it is terribly foolish to continue to drag so many of us through such ABnormal treatments, instead of establishing a specialized educational program focused upon graduating endocrinologists who have a thorough understanding of the endocrine basis for cancers.
We end up dumped on surgeons and radiologists and oncologists who have so little understanding of our metabolic system or our endocrine system, and all they can do is address it in a patchwork fashion.
Congratulations to those who have the wherewithal to raise genuine questions of concern about the present methods for medical treatment.
A.A.
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Regarding the natural aging process I heard one ND put it in perspective...he stated "we accept heart disease and high blood pressure as a natural part of the aging process, but we do things to keep it in check, so why not the same thing for women and their hormonal changes after menopause?"
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Well, Kaara, that's the best explanation I've heard yet but unlike heart disease or high blood pressure, menopause is not a disease. I'm lucky that when I went through it, pre-bc, I did have hot flashes but they passed. I understand meno symptoms can be unbearable for some.
Rose, yes, anti-hormonals are not at all natural but they got me to NED with few se's. At stage IV that's my priority. As for vanity, I either have good genes or am just plain lucky. Most people are shocked when I tell them I'm almost 56. I have 28 and 22 year old dd's and an almost 4 month old granddaughter. When I push her in her stroller people often assume she's my daughter (San Francisco has lots of older moms
Alaska Angel, yes I think estrogen dominance does have something to do with it. I got my period at a young age, 10 1/2 and had terrible problems with fibroids which are estrogen fueled. I was glad to go into menopause just so the fibroids would finally shrink and the crazy bleeding stop. My sense of well being is a little strange, even to me. I keep thinking that I should look/feel far worse considering I'm stage IV. I guess I can attribute that to being a perpetual Pollyanna. But that is just who I am and bc hasn't changed that. ETA- Maybe reading the Fifty Shades of Grey trilogy helped my libido too!
Caryn0 -
Momine
I was actually quoting some other poster in this thread who posed the question and asked if that would be worth the risk. I said no.
But, since you asked , I did a quick google.
This is what popped up when specifying the 2.9% reduction being the absolute benefit:
http://cancerology.blogspot.com/2009_12_13_archive.html0 -
Thanks for the link. As I read it, it actually says that, in the one study, with tamox, 12 out of a hundred women had recurrence, while with an AI, 9 women had recurrence. That first of all does not address what the recurrence percentage would be with no drug at all, and although the absolute reduction is around 3%, looked at another way you could also calculate the tamox/AI difference as a 25% reduction in recurrence with AI.
I am also curious about difference in benefit, depending on stage and grade. You had a low stage, low grade cancer and you are over 50, I think you said. You are not very likely to have a recurrence anyway, so the benefit of an AI should logically be much lower for someone like you than for someone like me with an advanced cancer.0 -
Purple, I can't edit well on this iPad, but I wanted to add, and forgive me if I have asked before, have you considered an ooph? As I understand it, even if you are post-menopausal, this can still cut estrogen a bit further than leaving them in. But you would need to discuss that with a doc, obviously.
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purple: Thanks for sharing that link. I think my MO's rationale in putting me on tamoxifen (even though I am post menopausal) is to switch me to an Al two to three years down the road. I will cross that bridge when I get to it, but doubt if I will make the switch. My early stage was such low grade and my margins and nodes were so clear that I am doubting that I will need this additional therapy. My early CTC tests showed zero circulating cancer cells which is a very good indicator of no recurrence or distant mets. According to what I've read, anything over 5 is an indication of possible recurrence or mets. My MO would not do this test as he deemed it unreliable, so I had it done by my ND and paid out of pocket for the reassurance it gave me. My oncotype score was also very low (13).
Momine: I agree...I think the ooph removal is a good idea if you have a more aggressive grade of tumor.
Caryn: It's so good that you had few SE's going through menopause..I don't know how I would have fared because I had a complete hysterectomy and was put on estrogen immediately, so I never had a hot flash until I was taken off my BHRT some twenty years later after dx! This same ND that I was speaking of above also said that the greatest risk from hormone therapy in post menopausal women comes from waiting five or six years before going on it. He believes that if it is started early on in the process, there is no danger because the body doesn't go through a huge transition...it just continues as before. It was also indicated that these medications should never be given orally, only transdermally for better absorption, plus they bypass the liver in this manner.
IMHO...very few women who are put on synthetic hormones are tested for their levels of estrogen prior to that happening...it's a "one size fits all" routine. In this instance alone you could be getting excess estrogen that you don't need. When I went on BHRT I was given extensive testing to determine my levels and then the estrogen and progestrone was prescribed accordingly....which alone is a much more logical approach to balancing a woman's hormone levels. I think this is why I felt so much better after I made the switch from synthetics to BHRT.
I think I could give up the BHRT forever as I have learned to cope with the hot flashes, but I would like to have some help with my libido. I'm not ready to give up that QOL just yet and neither is my partner. Does anyone know if testerone replacement is a no no with bc?
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Hi Kaara,
I'm sort of a veteran here, with IDC 1.6 cm and some DCIS, at 10 years out with no recurrence, and with no trastuzumab, no taxane, and no AI use. My older sister had IDC 2 years before I did, and did 2 weeks of tamoxifen, no chemo, and no AI, whereas I blundered through CAFx6 and some time on tamoxifen. I had thoroughly enjoyed a very active sex life and resent to this day not being given any information to indicate it would end with chemo/tamoxifen. Meanwhile, my older sister went on to enjoy 12 years more of a very active and enjoyable sex life before being diagnosed with IBC, whereupon she too had chemo and is now suffering similarly to me.
Back to your question about testosterone.... I was one of 120 participants in a study done through Mayo clinic to test the application of testosterone in a cream to breast cancer patients who had no evidence of recurrence. The duration of the trial was designed to be very limited because there was so much opposition to having any breast cancer patient exposed to testosterone, because of the understanding that testosterone breaks down into estrogen. Lots of other breast cancer patients thought I was an idiot for participating in a trial and that I was certain to have a recurrence due to participating.
The results of the trial were reported out in 2004, with the impression being that testosterone did not result in improvement in libido.
However, IMHO I'm not as sure about that. The applications were compared with placebo, but were only done for 4 weeks of actual testosterone use by each group of the trial. In addition, prior to the trial I had watched a TV presentation on Oprah about the use of testosterone by the general female population for those with similar lack of libido, and those women who claimed improvement were applying it directly to the clitoris, whereas the study just applied it mixed in a cream to the skin elsewhere.
Here's one Australian study were the general population of women were followed for almost 6 years, to see what the incidence of breast cancer was. They don't say whether it improved libido or not, but at least it indicates some positive outcome for the use of testosterone:
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AA: Thanks for sharing that.
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