Bioidentical hormones..is anyone taking after breast cancer?
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I have not read the whole thread but I have a question about testosterone.
Karen, you said your doc okays taking testosterone. When I was deciding whether to take Aromasin after 2 years of tamoxifen, (post menopausal) my cancer center sent me to an information session on AI's. They explained that we have the Aramatase enzyme which converts our testosterone to estrogen so that is why they recommend an Aramatase inhibitor to block the conversion to estrogen. So I am wondering how taking testosterone would be ok? I am so back and forth on what to do sometimes. I will say that the SE's of Aromasin were terrible at first but after 7 months things have been a lot better. I still have joint pain but not as severe as before..or else I am just used to it...lol
Thanks
Beth0 -
Pickle...I was using Bioidentical estrogen and testosterone pellets for almost two years prior to my dx. Out of the two, I think I miss the testosterone the most. I had a sex drive for the first time in my life. My skin was great. My mind was clearer. The night sweats went away. I had tons of energy and felt just so wonderful. The only negative side effect was some facial hair. The doc who was giving me the pellets said I could continue on my testosterone but not the estrogen, especially since I am on tamoxifen. My oncologist is even at least open to the idea, IF she regularly tests my blood levels. And I consulted with another oncologist at Baylor Breast Center in Houston whose area of expertise is hormones and breast cancer, and he also said he felt like I could go back on the testosterone if I really felt that my QOL issues warranted. I have not pushed the issue, and I may not. I do miss my pellets and I know that going back on the estrogen therapy is totally out of the question. It was a year in Jan. from when I had my last pellet insertion and not even a year yet from my bc dx. I am torn. I miss the libido and energy so much, but I am scared that the tamoxifen might not totally protect me from any conversion to estrogen.
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Open heart, I also miss my libido and energy but the information session made sense to me at the time. I wonder why we get so much mixed information. It can be so frustrating and makes it difficult to decide what to do.
Beth0 -
Beth, I'm post meno and am using a very low dose Testosterone cream that you apply right where you need it for improved libido.
It was RX'd by a ND. I occasionally use an Estradiol suppository, too. With that, I was told by credible sources including the integrative doctor @ UCLA that it's safe because it doesn't contain enough estrogen to go beyond the immediate area. I'm assuming the same is true with the very low dose Testosterone cream. Both make a huge difference in libido and improving the problems caused by low estrogen. Deanna0 -
I am using Vag-e-fem vaginal tablets twice a week. I started using them right after my dx. My tissues were still pretty "fat and happy" from the pellets, so my initial absorbtion was minimal. That does help with the dryness issue, but not the libido issue. I tried test. cream years ago. I saw an improvement initially, but after using it for a few months the increased libido effect diminished. But, I would be willing to give it another go. I got a script for scream cream and have used it once, it did help.
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thenewme is absolutely correct - HRT and BHRT are contra-indicated for patients who have previously had breast cancer. HRT & BHRT appear to raise the risk of recurrence.
On the other hand, we have QOL.
What we don't have is a statistical breakdown of how much HRT raises the risk of recurrence, or how much what particular HRT raises the risk of recurrence in what particular patient. No one can say how much greater the risk of recurrence is for a Stage 1 with 60/40 ER/PR+ on a ER 'heavy' HRT.
Without that information, we can't make informed decisions about our risk levels- all we can do is guess and hope and live with our decisions and the consequences.
For me, at this point, I feel so utterly screwed - it's not just the continual hot flashes and night sweats, or the 20 pound sudden weight gain, or the depression and lack of energy, or the fact that my crotch feels continually raw, or the chemo curl hair that came in gray - it's all of it together. I never would have gone through chemo had I had any inkling of these effects.
This is not me. This is not my beautiful life.
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I tell you ladies...I read these posts and I think I'm beginning to feel really blessed that I made it to 71 before getting bc. I didn't do chemo or rads and my brief experience with Tamox was not pleasant...still need to find out if it was actually the Tamox or my cold bug that was causing the severe flu like symptoms that I was having, but they went away when I stopped taking the drug. I will start back when I get over the cold completely. Yes, forget the libido, hello dry skin, thinning hair, and so on...gurrrr! Not one MO I've seen has brought this up or made any suggestions as to how I might solve the problem. If not for this site, I would be totally bewildered.
I did 20 years of birth control and another 20 of HRT and 1 of BHRT before being dx with bc. Now all of this was at the recommendation of my doctors who said it was providing multiple benefits to me, like protecting my heart and bones, helping to prevent bc, and keeping me young. Now, I'm being told the complete opposite by these same doctors, after I got bc! Pardon me, if I no longer accept their word as gospel!
It's a crap shoot to try and stay healthy in today's medical environment if you are taking any of the prescribed drugs that are being doled out. When guys started having libido problems, they came up with Viagra overnight, and what is more, insurance pays for it! They didn't pay for my BHRT!
I'll listen to what my doctors have to say, but I'll do my own research and the final decision will be mine.
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Sigh. Ladies I am reading here and so with you.
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thenewme, thanks for my chuckle this morning!!
I tried testosterone a few years back. Did nothing for me but increase my facial hair, which was bad enough to begin with! No increase in muscle mass, no weight loss, no improved libido.
Menopause sucks, no matter what way it is achieved. Chemo, surgery, or naturally, it robs your tissues, your brain, and your moods of vital juices.
I have learned to embrace and accept who I am and what time and cancer has done to my body. Menopause was coming. Gray hair was coming. (Actually, it was already there early. I just quit covering it!) At times I look in the mirror and wonder who the hell that is looking back at me. And I just keep pushing on with my mind and body, because to me, there is no other alternative.
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dropjohn,
I too would never have done chemotherapy had I known.
I believe people have a clear right to know in order to make a true decision about their care. That is what "informed consent" means.
Apparently many of the medical providers we have don't want to do what the law requires. They don't want to know (or even begin to admit) those facts, because if they did, they might not get as many patients to buy into it, and especially not those who are at particularly low risk.
AlaskaAngel
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Despite the fact that I had BC growing inside me for many years, I was overall very healthy. Not any more, treatment has me so debilitated, had I known, I would not have done chemo either
I have to disagree with thenewme: "HRT/BHRT (yes, they're one in the same)" is incorrect
"Conventional HRT is best exemplified by the commercial drug Prempro. Prempro is a combination drug that has both estrogens and a progestin. The estrogens are derived from the urine from pregnant mares and the progestin is medroxyprogesterone, a synthetic hormone not found in nature" Short of drinking urine, let's pop a urine pill
"There is lots of good evidence that conventional HRT actually causes disease!"
BHRT :
1. All hormones used are chemically identical to human hormones
2. The dosage is individualized to a patient's specific hormonal needs
3. The goal is to achieve a balance of activities of the hormones to improve quality of life0 -
Maud: You may be right, but unfortunately in the eyes of a conventional doctor or scientist..."estrogen is estrogen"...there is no difference. This is what my BS said to me when I told him I had switched to BHRT from HRT. Until studies are done and results published, this therapy will be off limits to women who have had bc. My bioidentical doctor stopped my prescription immediately when I told him of my dx. It was not up for negotiation. My naturopath feels the same way...doesn't necessairly agree that BHRT is dangerous, just that he must follow the guidelines laid down by the AMA, or risk losing his license to practice medicine.
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Kaara, this whole subject is new to me - because the tumour was over 90% pos for both ER and PR - I would have to do a whole lot of research on the subject before considering it, thus my presence on this thread... lol. A friend has been turned down by her treating physician because of her ER status, she was quite disappointed. Heck, most members of my medical team are adamant about phytoestrogens (do not take), so I'm being careful about that also.
Those pellets sound sublime though....
For the record, the author of the blog above is Peter Koshland, Pharm.D, is a graduate of the UCSF School of Pharmacy, where he is currently an Adjunct Professor of Clinical Pharmacy and a member of the Alumni Association's Board of Directors. He is committed to the health and well-being of his patients through close collaboration with practitioners in the application of evidence-based medicine. In 2009, Peter opened Koshland Pharm: Custom Compounding Pharmacy, which became the first compounding pharmacy in San Francisco to be accredited by the Pharmacy Compounding Accreditation Board (PCAB). Koshland Pharm makes customized medications and specializes in bioidentical hormone replacement therapy.
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I pray for the day when we see breakthroughs for women's health the same as men...I'll be on a walker by then, but hopefully my DD's and DGD's will benefit!
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Remember BHRT are not just estrogen and progesterone....they include testosterone, DHEA and others....and I forget who asked.....testosterone doesn't always convert to estrogen....that is why it is important to monitor values.....I too tried testosterone about 1 1/2 years ago and it didn't do anything...but I'm willing to try it again....I accept that I'm 6 years older since Dx, and that menopause causes changes no matter what/how you go through it.... gray hair doesn't bother....not happy about the weight, but if everything else was better, I guess I could accept it.....but I want to try to get some of the old me back....it would be wonderful to have some desire...to have some libido back.....my BHRT doc said that when I tried it before, I didn't give it long enough that to see effects on libido, you need to give it a few months.....I will give it time...and if there is no benefit, at least I can say I gave it my best shot....HAd blood draws last week...doing 24 hour urine later this week.....
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OMG....the testosterone made a new women out of me. I have know my husband since high school and we have been married for over 30 years, and I always had low testosterone levels and very little sex drive. We had so much fun while I was on my pellets. I miss those days so much. I may push my onc. about letting me go back on the testosterone part of my pellets, but honestly, I'm still a little scared that it might fuel another primary in my remaining breast. I know the Tamoxifen will offer some protection. I don't want to live my life from a place of fear. But I am not even a year out from my dx yet, so maybe I just need to get a few check ups under my belt.
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AlaskaAngel - I so agree with your last posting!!!!!
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I think we women are WAY too hard on ourselves sometimes. When we make such a huge decision as chemo, it's usually from a place of fear and emotion. We can be told that x,y,z may happen, but we can't see beyond "saving our lives" (which the chemo may or may not actually do. But we trust that it will, if that's our decision.) Sometimes we are told things that we don't remember in the heat of the emotion.
And, no one can really tell you what your experience will be. We have NO way of knowing, either, till we live it. Then it's too late.
Then we get into research mode, where most of us are now. We compare, somewhat unfairly, what we know NOW and have experienced NOW, to what we had no idea about then.
It's hard to get your head around sometimes. But if someone had told you how bad your menopuse or chemopause would be, you still wouldn't "get it" because you hadn't experienced it.
If life were so simple as "I wouldn't have done that if someone had told me", think of all the wars we wouldn't have had, presidents we wouldn't have elected, etc. It's moot, though, because here we are. We can only move forward.
Edited for spelling.
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Anne, the reality is that we rely on the professionals to be just that. My onco treats me like a 4 year old ! The only thing I was told was 'you're gonna lose your hair' dah.....I should have known better and said 'wait a minute here, give me 5, and I'll get back to you'. But I gave him my implicit trust, firmly believing he had my best interest at heart. Not so. He took a wild guess, based on some stats and my healthy looks, and threw the kitchen sink at me. I am convinced I was overtreated and paying dearly today. Now, when I go to him with all the repercussions of treatment, he acts annoyed !!!!!!
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"If life were so simple as "I wouldn't have done that if someone had told me", think of all the wars we wouldn't have had, presidents we wouldn't have elected, etc. It's moot, though, because here we are. We can only move forward."
Thank you, AnneW!
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Hi Maud,
The source you quoted, Dr. Koshland, is a commercial site from someone SELLING bioidentical hormones. It's hardly an unbiased source, but it's a great example of appealing to emotion rather than evidence.
As a counterpoint, here's an evidence-based article on BHRT/HRT. Ironically, one of the commenters is Koshland, himself. It's interesting reading, IMO.
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Hi thenewme, the source I cited is a blog, not unlike yours. He is an accredited pharmacist who is offering science-based alternatives for women who don't want to take urine pills. That's all.
You may want to jump on his blog and argue with him directly...?
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Yes, it is a blog, just like the one I cited, but I disagree that Koshland is offering science-based alternatives. He's offering alternatives that go against the advice and recommendations of evidence-based medicine.
As for the "urine pills," again - that's an emotional scare tactic (gross-out factor?) used by probably every quack out there in an attempt to make people think their "natural" BHRT is better than conventional HRT.
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Well: Premarin® stands for Pregnant Mares' Urine (PREgnant MARes' urINe); PMU for short
PREMARIN® (conjugated estrogens tablets, USP) for oral administration contains a mixture of conjugated estrogens obtained exclusively from natural sources, occurring as the sodium salts of water-soluble estrogen sulfates blended to represent the average composition of material derived from pregnant mares' urine. It is a mixture of sodium estrone sulfate and sodium equilin sulfate. It contains as concomitant components, as sodium sulfate conjugates, 17α-dihydroequilin, 17α-estradiol, and 17β-dihydroequilin. Tablets for oral administration are available in 0.3 mg, 0.45 mg, 0.625 mg, 0.9 mg, and 1.25 mg strengths of conjugated estrogens.
http://www.rxlist.com/premarin-drug.htm
ALL Premarin medications are non-synthetic organic, and ALL Premarin is derived from estrogens extracted from Pregnant Mares' Urine (PMU). If you ever doubt where Premarin comes from, just break open a pill and smell it!
"Why the big stink over Premarin? Every year, approximately 75,000 mares are impregnated and tied in small stalls, unable to turn around, take even a few steps, or comfortably lie down. Rubber sacks-which can cause sores-are strapped around the mares' groins so that their urine (known as PMU, or pregnant mares' urine) can be collected to make Premarin. The mares are denied free access to water so that their urine will yield a more concentrated estrogen. The foals resulting from these pregnancies are considered unwanted "throwaways," and most are shipped off to slaughter.
We're letting consumers know that Premarin is a prescription for animal cruelty," says PETA's Lisa Lange. "Women and their physicians can opt not to use a drug cruelly obtained from pregnant mares when great alternatives exist."
http://www.findings.net/supremarin.html
It is the nation's most-prescribed drug, Premarin, a hormone-replacement product whose sales approach $1 billion a year. It is used daily by eight million American women, who are supposed to take it for the rest of their lives.
Please check your facts before uttering 'quacks', it's such a tiresome, meaningless argument
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Here we go again on the "tiresome, meaningless, endless back-and-forth arguments." I guess it's ok to post misinformation, but it's not okay for someone to disagree and/or present evidence to the contrary?
Yep, premarin is derived from horse urine. Tis true.
I do fact check, and that's exactly why I question statements like "it is the nation's most prescribed drug" and "...great alternative exist."
My fact-checking penchant is exactly why I personally don't consider commercial sites like you keep mentioning to be reliable, credible, and unbiased.
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Maud, I don't think thenewme was questioning where synthetic progesterone comes from. What I understood her to say is that the information you've now spelled out, as true as it is, may only serve to deflect from the fact that women who use BHRT are still changing nature or altering the natural aging process. In other words, even though you're correct -- progesterone from horse urine is disgusting (and I used it for quite a few years!) -- BHRT may not resolve the more basic issue of whether or not any progesterone is safe for us, especially after we've had bc.
There's a very interesting post this a.m. on the other thread on this topic. Deanna
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And I don't consider "evidence-based" sites you keep mentioning to be reliale, credible and unbiased
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Thanks, Deanna. You understood perfectly.
Maud, I'd love to discuss more with you about reliable, credible, and unbiased sources.
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AnneW,
Sometimes people do depend on those with specialized education and experience to do their job and provide truthful information. The problem is, in our society we are "gullible" if we do, and "should have done our own research". Unfortunately, too many doctors count on that and use truth and lies for their own personal focus, given that most of them don't ever personally experience breast cancer or chemotherapy.
I don't know if you followed the thread I posted about the option of ovarian ablation. I'm one of those women who went to one of the most respected oncs on the west coast and when I asked my onc specifically whether the option of OA plus tamoxifen was equal to the chemotherapy being most commonly used at the time of my treatment, I was lied to and was told that it was not equal, despite trials that had been completed a year earlier that demonstrated the two choices were equal.
I also asked about participating in clinical trials. My onc failed to tell me I was HER2 positive and failed to mention the trial for trastuzumab that I would have been eligible for.
I agree with you, "I think we women are WAY too hard on ourselves sometimes." Blaming ourselves for not being told the truth, blaming ourselves for trusting professionals, blaming ourselves by a general self-accusation that we just didn't listen in the first place, or that "sometimes we don't remember things that we hear in the heat of emotion" is too easy to do in being too hard on ourselves.
I also agree with you that "if someone had told you how bad your menopause or chemopause would be, you still wouldn't "get it" because you hadn't experienced it." That is why it is so relevant for oncs to provide adequate reinforcement and counseling about it prior to treatment, instead of making sure to only mention menopause in passing like my onc did. After all, my mother and older sister both went through menopause and came out of it with healthy sex lives, so why should I have "got it" that there was any possibility that I predictably would not because of chemotherapy? I was basing my judgement on the FACT that my onc had been recommending chemotherapy to women for decades, and anyone (professional or otherwise) would have emphasized the difference to me. He had been prescribing chemotherapy without ever having the compassion to make sure there was clarity of understanding about the results, particularly for women over age 50 (and 2/3 of breast cancer patients are over age 55 at time of diagnosis). Would my onc have been that vague with male patients who are dealing with the possibility of impotence due to treatment? I hugely doubt it.
What I don't agree with is the rather strong assumption that women are that stupid. I think we are just vulnerable to believing that our care providers would ever be that cruelly dishonest with us. But several years after my diagnosis, slowly, very slowly, more and more articles have been published that openly admit that the results of chemotherapy such as debilitating chemobrain, and loss of libido, are not just figments of our imagination. Where was that information in the first decades of my onc's practice? When I asked about the possible effects on the brain my onc said that there had only been 5 people in his experience who had become "totally incapacitated" by it. So that was his criteria for whether any damage was worth considering.
I have more confidence in women. I think most are like me and do ask, but unfortunately those like me believe doctors are much more truly professional and truthful than many of them are willing to actually be.
A.A.
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Speaking of credible and evidenced-based sources, here's a recent article that's been on my mind...
http://www.jonbarron.org/natural-health/unproven-conventional-medicine-newsletter
Sorry if this seems off on a bit of a tangent, but I think it relates to why we need to be questioning and super analytical about everything we read or are told about our health! Deanna
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