Bioidentical hormones..is anyone taking after breast cancer?
Comments
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I'm hoping this thread can remain civil and any misunderstandings can be sorted out without getting angry at each other. Remember no two people think alike and we can always agree to disagree.
That said I agree that the boards should contain one specialist in each category, including a naturopathic doctor, but that's really far reaching.
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Day,
Your reference to a "surgery board" is confusing to me because to my knowledge our cases are not discussed at any "surgery board". Our cases are discussed at a tumor board. I indicated that I was confused about your mention of the surgery board before discussing the reasons why I believe we need other kinds of genuine experience and knowledge on the tumor board where our diagnosis, treatment and recommendations for it are made.
My interpretation was that you agreed with me; but I don't know how to interpret your comment about the "surgery" board. I agree, you don't need lessons and patronizing, and I agree that there may be other specialists that are being left out that we need. But right now we have none of their input, and that is something I think you and I believe should be part of the analysis and recommendations that is accomplished at the tumor board.
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Ok, AA, in my case there was a surgery board and an oncology board.
My oncologist is with Cancer Specialists of Oklahoma and he took over my care after the initial surgery (bmx with immediate reconstruction) that was performed by my BS surgeon, who is a specialist in oncologic surgery with the breast cancer specialization, and that was at the OU medical center. The BS had a surgery board that took care of the BMX, reconstruction and ALND. they would be coordinating with the oncologist, of course.
The oncologist had an oncology board (not tumor board), that took care of the chemo, anti-hormonal and everything else related to that. The oncologist is part of another hospital here in Oklahoma City and the board is with that hospital (Deaconess Hospital). I did not like any of the oncologists from the OU Medical Center where my BS is, and I found that my current oncologist was better.
So in my case, there were a surgery board and an oncology board, and I know at least here in OKC I am not the only one who had this separated.
So, you see, not everywhere there is a general oncology board, and the specialists can be from different medical centers. So what I was referring to, I was referring from experience.
Also, I know that both my BS and PS had to coordinate and ask the opinions of my endocrinologist (all the medical care I get except for the oncologist is at the same OU med center) when it came to the surgeries, because being a Graves Disease patient with hyperthyroid (and the respective treatment for that) there are specific precautions that need to be taken when I have to have surgery. I am generally happy with the OU because they DO take care of me quite holistically and being in the same database and system (not facility, there are several buldings, a whole campus actually)it's quite easy for them to coordinate on everything.
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Day,
Thanks -- The more we share here the more we learn. I hadn't seen a surgery board mentioned in any of the breast cancer books or discussions, just tumor boards, although it certainly makes sense to have one if there are many surgeons who collaborate and debate with each other to help make better decisions about a surgery that may be less definite for the approach to be used.
I was originally seen in small-town 1-hospital Alaska by an internist for the mammo/ultrasound. There were 2 surgeons here and I chose one. She postponed biopsy twice (both BIRADs 4's, unknown to me) but the 3rd visiting rads doc I think got her off the dime. When the results were IDC I flew to Seattle and saw a very good surgeon there at a cancer center and an onc there. All analysis and recommendations were done with one tumor board. I had IMRT rads in California based on the Seattle tumor board recommendations. There was no consult with, or analysis by, any other type of specialist. My actual chemo was done at our local hospital, with 3-month visits to the onc in Seattle.
I am not new to the medical arena, but until I had cancer, I had no idea that the treatment process was that isolated from integrated care, or so heavily biased in favor of slash, burn and poison and then dump the patient to cope on their own with the results.
A.A.
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Getting ready to schedule an appt with a doc who Rx BHRT.....leaning towards one of two docs who are family practitioner or gyn by training but now practice is exclusive to BHRT....some of the "flashy" practices with big ads just seem to much of just selling something, especially when I get the email response to request for info.....leaning toward the female....she is my age and also a survivor.....the other is a guy in his 40's.....Was waiting till I see my onc....appt was supposed to be today, but onc;s office called last week to see if I could change appt as they had a patient who could benefit from my time,....so now don't see onc till March 15th....hope I can get into one of these docs and get results back before I see onc.....And neither of these docs do the pellets.....
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karen,
Anxious to hear what your doc says about using HRT post bc. I loved my pellets so much and grieve losing them every day.
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So far everone I've contacted about HRT said they do not accept BC survivors. Maybe its a state law or fear........??????
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It's a liability issue for most doctors. As my naturopath said...he doesn't believe that BHRT causes bc, but he worked too long and hard for his license to jeopardize it, and until there are more studies done, he is opting out.
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Kaara....I've contacted a few docs who now specialize in BHRT and they do take BC survivors, but they don't Rx ER or PR for them.....but Testosterone is an option as well as other options. One of the docs I am considering seeing is herself a BC survivor. She does not have a one size fits all approach, so I think she is the one I will see. I am leery (or is it leary) of the pic practices with big fancy TV ads and websites...when I've written for info, its more like a "form letter" response. this one doc wrote me personally. Just need to make the appt today. I hope I'm making the right decision, but something has to change in my life...I need to get my "old" life, my "old" me back....
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Karen: Best of luck to you. I would like to do the same, because I'm certainly missing all that energy I had before I was taken off BHRT. I'm getting over a cold this week, and that, along with the tamoxifen makes me feel like I've been hit by a bus!
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I called the one doc today and she called me back...she had a cancellation for tomorrow!!! of course I grabbed it. I feel really good about her....she is not one size fits all. The first visit is an hour...then labs and 2 or 3 weeks later follow up visit. I hope I can get in to the lab after the appt tomorrow afternoon...she does not draw the blood, but sends you to the lab....
Kaara...for me its more than just lack of energy....libido and a host of emotional stuff!!! Will let you know how it goes....Karen
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I miss my HRT too. The hot flashes at night suck and interfere with proper sleep and I do not have the joy I had before. My integrative Doc would like to put me back on but I am so afraid. I just don't know what to do.
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Progesterone Preparations
and Progesterone Receptor-Positive Breast Cancer(from Christine Northrup, MD's book, The Wisdom of Menopause)
One of the questions I'm frequently asked is whether a woman whose breast cancer has tested positive for progesterone receptors can safely take progesterone.There is a great deal of confusion about what it means to have a breast biopsy that shows that the tumor is positive for progesterone receptors, especially in those women who have been using bioidentical progesterone at the time of their diagnosis.
Here are the facts. All breast cancers that are positive
for progesterone receptors are also estrogen receptor-positive. Because
estrogen is known to stimulate growth of these types of cancer cells,
many people automatically assume that progesterone must
do the same.
Just the opposite is true. Positive progesterone receptors indicate that a
cancer is receptive to the balancing and anti-cancer effects of
progesterone.
To understand this apparent paradox, remember that hormones
in the bloodstream and the fluid surrounding cells work by uniting with
receptors on the surface of the cell. The hormone fits the receptor
like a key in a lock. If the right receptor is there, the hormone
message makes its way to the chromosomes and turns on the appropriategene to produce a specific cellular effect. Progesterone signals the cell to stop multiplying,
while estrogen signals the opposite. For that reason,
bioidentical progesterone is probably beneficial for women with
progesterone receptor-positive breast cancer.
In general, women with estrogen- and progesterone-positive breast tumors have a good
prognosis, since the presence of these receptors means that the tumor is
very well differentiated and slower growing than more poorly differentiated tumors.
Though I'm convinced that bioidentical progesterone is safe and even beneficial for
women with estrogen- and progesterone-positive breast cancers, this is a controversial
area. Use your inner guidance and consult with your doctor.0 -
lucy88: Do you have a study or link to back that up, because my MO is just going to say "NO" when I tell him this.
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Kaara:
You would have to check with Dr. Northrup's book for references about that excerpt. Progesterone used to be a breast cancer drug.
But more importantly, your doctor should be giving YOU the evidence for HIS claims. What is his evidence against progesterone? PM me if you want to discuss more. I only check in periodically.
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Dr Northrup is a quack. Lucy88 has no legitimate studies on the role of progesterone concerning breast cancer. She can't post any.
I can prove Norhrup is a quack. I can also present evidence that shows that nobody with a history of breast cancer should be taking bioidentical hormones.
Lucy88 knows this and that is why she wants to deal with secret pms with you.
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Lucy88, back up this statement of Northrups,
Progesterone signals the cell to stop multiplying,
while estrogen signals the opposite. For that reason,
bioidentical progesterone is probably beneficial for women with
progesterone receptor-positive breast cancer.I'm seeing some studies over the past two years that point to progesterone has a role in breast cancer. What's your study group think about that and why don't they want to debate this in an open forum? From what I am seeing from the information that you are posting about his study group of yours, they are all woo miesters that would fail a high school biology quiz.
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Black Cat: Well then, show us your studies, and save the sarcastic quips. I'm here to learn, not be entertained or bullied.
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Black Cat, I too would like to see your study in a non sarcastic manner. I am interested because I took bio identicals and when my progesterone was raised my breast burned like fire. Show and tell time (nicely please).
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I met with a doc on Friday about BHRT....she is also a BC survivor (ER/PR+)...and happens to use the same onc that I do.....She does not Rx ER or PR for BC survivors, but did say for women with no Hx of BC, progesteron is breast protective......My onc allows survivors to take testosterone...he will also Rx the E-string or vaginal cremes.....I need to ask him about DHEA....I'm not taking anything yet till labs are back.....BHRT doc is not one size fits all....She ordered blood draws for Testosterone, thyroid (TSH, T4 and 2 others), B12 and D....she is also doing a 24 hour urine that metabolites (complete hormones, including estrogen, testosteron, DHEA)...I just have to see if they take my insurance....BHRT doc is also recommending DIM...plus a vaginal estradial creme to help with vaginal atrophy....I feel comfortable with her recommendations.....especially since I know that she has asked our onc questions about some of the BHRT and I know that onc is okay with the testosterone...onc Rx it for me about 1 1/2 years ago....I will see this doc again in 2 to 3 weeks once she has all the test results back and make decisions about what BHRT is indicated....and I see my onc on March 15th....Will keep you posted on what happens.....
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There don't seem to be any really good trials out there, and there's a lot of contradiction in evidence.
For example: (2006)" In our review, menopausal HT use in breast cancer survivors was not associated with increased cancer reoccurrence, cancer-related mortality or total mortality. Despite conflicting opinions on this issue, it is important for primary care physicians to feel comfortable medically managing the increasing number of breast cancer survivors. In the subset of women with severe menopausal symptoms, HT options should be reviewed if non-hormonal methods are ineffective." (http://www.ncbi.nlm.nih.gov/pubmed/16368466)
(2008) "Cumulative incidences at 5 years were 22.2% in the HT arm and 8.0% in the control arm. By the end of follow-up, six women in the HT arm had died of breast cancer and six were alive with distant metastases. In the control arm, five women had died of breast cancer and four had metastatic breast cancer (P = .51, log-rank test).
CONCLUSION:
After extended follow-up, there was a clinically and statistically significant increased risk of a new breast cancer event in survivors who took HT." (http://www.ncbi.nlm.nih.gov/pubmed/18364505)There are problems with all the studies - from lack of double blind studies to varying HRT regimes and so on.
The two most recent studies that I'm aware of are the Stockholm study and the HABITS study, which followed different protocols and had different results. The HABITS study was ended early due to the increased recurrence rate on the HRT arm.
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Oh, about the Oncotype scores and recurrence risks? Remember, those statistics are calculated assuming you're on five years of Tamixifen.
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Blackcat,
I am interested in learning all sides of a given issue but could we leave sarcasm, snarkiness and words like stupid behind? That benefits no one.
Caryn0 -
I've edited stupid out of my post. However, there is something about tooth fairy science that brings out the snarkiness in me. I will try to tone it down.
Karen,
The vaginal creams are proven to be safe and effective. You should not be scared of using them. It sounds to me like you have a good physician.
dropjohn,
Yes, there is conflicting evidence. Science does not fully understand the role of progesterone in breast cancer,yet. Quacks fill in the gaps with claiming that estrogen and progesterone work the same way in the breasts as they do in the uterus without any proof to back this up. They draw the conclusion that progesterone shuts down estrogen and that taking boatloads of bioidentical hormones are safe and beneficial for women with breast cancer.
I'm on my way out but wish to continue this tomorrow. I'll find the studies and post them. Thenewme did debate this issue some time ago on another thread.
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Hi,
Just a brief interruption here...because the discussion is definitely key to our well-being and worthwhile...
Without sarcasm of any kind here....
Do you really think there is going to be more definitive research done about the endocrine basis of cancer without also forcing the medical profession to acknowledge that we specifically need to train and then seat endocrinologists that specialize in cancer on cancer patient tumor boards, so that there is actual professionally knowledgeable planning included from the getgo for us?
With the medical profession still predominantly male, breast cancer in particular gets short shrift in this respect, but now that prostate cancer includes some future of endocrine management, can't we find a way to get our breast cancer organizations to FOCUS on the need for endowing a few training programs for such endocrinologists to get the train that the surgeon-radiologists-oncologists dominated and derailed for decades with chemo, back on track?
A.A.
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After BMX on 2/1 - my pathology was ER+(97%) - PR -0% - I would think that balancing my hormones naturally (bioidentical) would be a good thing. I am going to a holitic M.D. in March who does everything, bioidentical hormones, vit. C infusions, diet, vitamins, etc. She has been an M.D. since 1965. She does chelation thereapy, colon cleanse, etc. I am going to her to get tested for hormones, and anything else that would apply to cancer. I want to get all my ducks in order before I do any conventional treatment. I have prior to surgery changed my diet, mostly veggie, vitamins, D3 - Vit C, Vit E - Right now I am hopefully clean with the BMX - margins clear and no lymph node involvement. I just want to have a good quality of life. We do need to have the medical profession and the holistic profession join hands...can you imagine how better off our health care system would be if the knowledge of both professions came together to work for a positive plan of attack.
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barbiecorn: Congratulations on the choices you've made to improve your diet, and seek out holistic methods to improve your quality of life and prevent recurrence of bc. There is a lot of information on the Complementary and Alternative threads about this, so welcome!
I'm seeing a physician who does BHRT but I'm not considering that at this time. Once off it, I've had some hot flashes, but nothing major that I can't deal with. I am going to revisit with him in a year or so and see where we are. In the meantime, the diet and supplement program works well to replace the energy lost from going off BHRT.
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Re: "So far everone I've contacted about HRT said they do not accept BC survivors. Maybe its a state law or fear........??????"
Or maybe it's because HRT (BHRT) is generally contra-indicated, particularly for BC patients. Anybody who offers to send you PM information but refuses to discuss it in public obviously has something to hide.
I've discussed this before many times, and I welcome discussion. What I've personally found in my own research is that there is NO good scientific-based evidence that HRT/BHRT (yes, they're one in the same) is safe, effective, or recommended. At best, it's extremely controversial and not at all proven. If anyone has any factual evidence to suggest otherwise, I'd love to see it. Unfortunately, when we've discussed this before, we've only gotten sketchy information and testimonials and secret PM offers.
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It's very hard for people to get their head around the fact that circulating estrogen and progesterone in our bodies is NOT the same as the estrogen and progesterone receptors on our breast cancer tumors. It's much more complex than that.
I need to find a good, concise scientific article on that. Not just a "personal belief" quote out of a book. Does anyone have one??
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Hi AnneW, probably not what you're looking for, but your post about the amazing (and misunderstood) complexity of hormones reminds me of this quote:
"The claims on some of these sites (Lee's and Mercola's, specifically) are plain ridiculous. Also Lee's book "Hormone Balance Made Simple", makes me chuckle. Look for my book which is being published next month, "Neurosurgery Made Simple"
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