Treating estrogen responsive cancer naturally
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Mad BB - I am blessed in the fact that my works and has insurance, and hopefully I will be able to find a job here soon as well. Thankfully we did have a small emergency fund to fall back on, but that's about gone. We too are getting creative with piching our pennies, and I know I am also blessed in many ways with caring family and friends. I didn't mean to come across rudley to your comments. I'm just having a bad spell emotionally. It just all feels overwhelming to me right now. I thought I was doing ok, but maybe I'm coming out of crisis mode and the reallity of things is beginning to hit me more as I read and learn more about treatments, or rather the lack thereof. It just pisses me off that we are forced to make these choices. My doctor told me it was, of course, my choice, but basically said if I don't take it and it comes back that i will die. It won't be a matter of if, just when. Gee thanks doc. Not even that I MIGHT be one of the ones that survive, just that technically it's possible (like it's possible that I could land on the moon), but I know he thinks I'm signing my own death warrant. It sucks. I hate this stupid disease.
Someone said to ask yourself which decision will you regret making 5 years from now. Well gee, if it comes back, than yes, I will probably regret not taking it. But at the same time if I do take it and get another type of cancer or have a stroke or pulmonary embolism I will regret having taken it, so that question only further adds to the should I shouldn't I connundrum.Just once I would like for something be simple and straight forward.
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Oh Mini - I never thought you were rude, just that you needed to know you are not alone. And when talking about how far we have had to jump to do alts for cancer, talking just this morn, Hubby and I remembered that just a month ago he sold off most of his gun collection to a friend who gave him top dollar, bcz they love me, and we sold off the pool equipment from the place we just walked away from, and we sold the ...... hahaha, oh well cannot recall, but wish we had sold more - it will come - everything has a way of happening when it is supposed to and not when I think I should happen. My ideals of what happens when are usually based on fear or having the gimmes (as in give to me give-mes). I spent to much time too much time angry over finances and hopelessness, didn't know how we were going to do all this, and we have great insurance if you want to choose conventional.
Our friends, she has uterine cancer and went conv, she had reoccurrence, more chemo and rads, another reoccurence, more chemo and rads, then mets to spine, more chemo and rads I guess - all this in a few years. Our hubbys were talking, about me mostly not doing conventional, knew from beginning it would not be achoice, we knew for years it was not our choice, and her hubby told mine, they only pay $1000 copay ea year and the rest is covered so no sensse in worrying over the cost, and my hubby said, but the alternatives we choose are not covered so out-of-pocket and a huge expense but life and death without them..... and her hubby said, but the conventional is working for (her name). No, no it's not, we think really loud but what can we say. She has been through HRT prior to cancer, been through surgeries over and over, rads, chemo, drugs for hormones I am supposing, and she is not getting better. But they don't ask what is working for me to go from dragging out of bed and so sick with NO memory to gaining stregth and now working festivals and auctions and gardening and ready to bicycling tomorrow morn at sunrise. I feel so good. This is a turn around from within the last week too, so I am attributing it to the red and black raspberry ellagic acid I have added to my protocol. Who knows at the moment. Who knows, but I only have this moment. Even if I have cancer in me for the rest of my life, long or short of it, I feel that my QOL is great, better than it was five years ago or more.
Bringing that full circle to the topic of this thread, is that I am dealing with hormones which were very broken!!!!!! for years, the thyroid, the estrogen and progesterone and now the endo dr is testing to see how to balance me better than I am now. I am also using so many alt choices and the combination I have going for me is individualized and is working for me, thank goodness and nature too, so I am going to cram in some really good living while I can, taking nothing for granted but hoping I am tenacious enough to pull this off and live to 90 w or w/o cancer.
My understanding is the intense fear of cancer can be a downfall. Also the fear of estrogen and misunderstanding of these hormones.
Take a deep breath, I know, I have been where you are now, not knowing... learning, wading through all the info and nothing consistent which is the worst part I think....... soon you will know what is your best way and how. Conv or alt, you will be supported here on bco.
Hugs for you from me, you did not come across rude or judgemental to me at all. We're okay.
LOVEEssa
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Someone said to ask yourself which decision will you regret making 5 years from now. Well gee, if it comes back, than yes, I will probably regret not taking it.
Mini, a lot of people say that so I don't want to pick on you at all. It's an often heard comment in the world of BC. Just remember though, that, God forbid, should you have a recurrence, you could just as well be hormone-negative.
As long as we know so little about breast cancer, regrets are premature.
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Thank you so much for the kind words and encouragement. I said for a long time that there was something wrong with me; for at least 5-6 years. I went to the doctor and had tests, found some minor things that were taken care of, but kept having the feeling that something was wrong. I kept telling them but I was always told it was stress-related or peri-menopause, then menapause related. I knew it wasn't. I felt it instictively, but the answer was always no, you're fine. I resigned from job because I knew I could longer work under that kind of stress and scheduled my mammo for 1 week later (but 6 months later than I should have had it) so I wouldn't get busy and forget it even longer and that's when they found my tumor. My doctor told me that it was likely that the tumor had probably begun forming 5-7 years ago. What a coincidence. I have that same feeling inside me now. That I souldn't take this medicine. That ultimately I will regret it.
I know that there are times that we must live beyond our feelings. And I don't think I am listening to mine in a bad way. The kind that says oh buy it, it's on sale, when you know you don't have the money, or just take it, no one will see you do it, when you know it's the wrong thing to do. It's not an impulse. It's looking at the studies. Reading about the SE's, looking at the studies, seeing how the numbers are often skewed; and not to the conservative approach. Yes women that don't drink the Kool-aid die, but the majority of them live. Why? According to my doctor it's a genetic luck of the draw. Well if that's the case, then aren't I doomed either way? But what if I'm not in the minority? What if I'm in the majority? What if with dietarty changes and supplements and other lifestyle changes I can change things in a positive way? What if I'm on a genetic tightrope and the Rx will tamper with nature and throw off that delicate balance and send me on a course like your friend is on? I don't want to be a perpetual cancer patient. I'm 56 years old. I have a husband, kids, a 2 year grandson, and 5 week-old twin grandkids. I want to be able to enjoy them. I keep thinking of the line from Steel magnolias; it was when they told Shelby that having a baby with her diabetes could kill her. She said something to the effect that she would rather have 3 years of wonderful than a lifetime of just so-so.
I'm not against all medical treatment. My husband had chemo 30 years ago for his cancer and he's fine. A friend's son had cancer when he was 7 and endured all kinds of chemo and suregeries for brain cancer. He's in his late 20's now and fine. I know sometimes it works. But I also know that women that get other cancers from Tamox, even though the % is low, get them in far more advanced stages and have a considerably lower survival rate. And what then? More radiation and surgery, + chemo. I had surgery and rads. And maybe if my cancer was more advanced, I'd be more willing to take the meds, but I just can't get away from the fact that I think that I should at least try to combat this naturally. Can I really mess up my body any worse than the meds? Doesn't eating right and taking care of your body, etc. mean anything? If not, than why do doctors keep telling us to do those things?
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The drugs provide such minimal survival advantage from breast cancer and so many risks, I don't see any room for regret either way. Susan love has said 50% benefit but that's relative risk. Absolute risk is less than 3%. That means it has a 97% chance of not working and a percentage of causing new cancers and other problems.
If all these treatments were less theoretical we would know what we're dealing with. Don't you wonder how the treatment guidelines will change five or ten years from now?
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I think they will look back and see our treatment as we see the doctors that used to give a man a bottle of whiskey before they lopped off a limb. And I still say we're not going to see any significant change in the way things are until the start focusing on the commonalitities of those that survive without the drugs instead of the fatalities.
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I agree. The only other way we would see a change would be if enough people had such debilitating SEs that they refused to take the drugs. That would really worry big pharma
They are banking (pun intended!) on our fears!
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And, as some of you know, I had breast cancer in 1982; had a mastectomy and reconstruction, but no chemo, no drugs of any kind as follow-up. I was cancer free for 28 years and when I did get it again, it was NOT a recurrence, but a new primary.
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Where would we be without research? I'm new to this thread and had already decided no AI's or Tamoxifen for me. Enough SE's from chemo to last a lifetime...and my last one is supposed to be 29 Aug. I am so happy to find this thread!
Phytoestrogen: Will bind to estrogen receptor and has 10% of the function of human estrogen.
Human estrogen: Will also bind to estrogen receptor.
Regardless, which has the greater affinity for the receptor? That's the one that will have its function. If it's the PE, it will block the HE from binding and vice versa. Just having a problem finding a study that will confirm the binding affinities of either.
So many contradictions.
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We'll see that when 99% of men get this disease. You see how quickly they came up with Viagra when they needed it.
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I'm afraid you are right Mini - If more men had breast cancer it would make a huge difference in the research for a cure
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Oh just wait. I've yet to find one thing that has been straight up simple. For every pro there is a con. For every you should there's a you never should, and for every always there's a never. I have literally screamed "can't anything thing about this stupid disease be simple?" I've spun around so much it's a wonder I haven't screwed myself into the ground.
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About phytoestrogen and human estrogen - there is also the kickback from natural estrogen which down regulates the Bcl-2 gene and estrogen in a natural way..... you can read all the studies on bioidentical research back on page 3, but bringing this paragraph forward..... the quoteis from the book Outsmart Your Cancer. And the research on pg 3 reveals there are studies in Europe and worldwide on natural progesterone.
"""""It is extremely unfortunate that the medical community has resorted to using .... studies such as those mentioned above to warn women against any use of hormones - even bioidentical ones. In fact, the misunderstanding has gone so far as to terrify women if their breast cancerr cells are not only estrogen receptor positive, but also progesterone receptor positive. Once again, conventional medicine has now adopted the erroneous idea that natural progesterone is bad, when the studies that have been scaring them have only been done on non-bioidentical progestins. Given that natural progesterone promotes apotosis and down-regulates the Bcl-2 gene, it would appear to be a good thing if a woman's cancer cells are progesterone positive."""""
Consequently and very unfortunately, I went off the bioidentical progesterone I was using for a year, I was told by 3 mds that I should not use it bczof the PR+ and they were unduly concerned and wrong in their information. So I went for a year without the protection this could have given to me from the cancer since my bodyis extremely loaded with estrogen of all kinds --- human, estrogen held in fat tissue, and especially the xenoestrogens from the pollution that was in our country neighborhood and woods for the year we lived there before walking away, so I really needed this support. I am back on the bioidentical cream and for now using what I did before but the endocrinologist that I have now is running the tests and compounding my thyroid rx and creating a sublingual natural progesterone for me specifically.
Also, about women going off then natural progesterone for a week each month so they can (bleed) - now the natural endocrinologists who are truly into hormones and not the ones who are all about diabetes - they are saying to stay on and take in full benefit all month, why not they are saying. See the book by Dr. Neal Rouzier, Bioidentical Hormone Replacement Therapy for Men and Women. I trust my new endo, he gave to me this book and he is all about going natural in all ways. Though he is not against chemo, go figure, but guess he needs more info on what is available w/o the chemo.
Time for my Meeker raspberry morning mash - that is what Hubby and I call it now, making the raspberry mash, but it is pretty good to taste.
btw, Mini - I knew soething was wrong w me for some years too, but it was told to me by dr that I had CHF, but it was thyroid, then it was said thyroid and I figured I was just not on enough thyroid curatives, then the mass was found by me, and yes I believe it was growing for 5 yrs. I relate these masses to a pile of pennies, at first they don't multiply so much that you notice, then they are prolific and make the mass most apparent. I can feel the cancerbeing actve when it is, I know the symptoms I have and there is even a smell in underarm nodes that does not wash away, that is when I know I am not doing something I must do. There is also a little node on chest that acts as a guage, right now does not show.
I started a link some months back where they re just now discussing the unnatural smell that has been a SE for so many. Breast Cancer Symptoms - a comprehensive list from bc people
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Mini, I have never seen the number 22% as the percent lower risk for taking tamoxifen. There are all sorts of manipulated statistics but the actual stats I've seen have been single digit numbers. The doctors are good at what they do but we have spent more hours researching the alternatives tx than they have. Don't let his scare tactics get to you. He just needs to CYA.
Essa, I am so glad that you found a great endo! Thank you for sharing what you've learned with us. It is good to know that there are a few docs out there that understand. They are in the minority and so are we. We just have to get matched up with each other!
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I'm still looking and learning. I'm not sure I understand the homone treatments. These are different from HRT I assume??? I was taking estriol and progesterone prior to my diagnosis.
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"...> It won't be a matter of if, just when."
Your doctor is an ass, Mini!My husband had stage 4 colon cancer just a few yrs ago. He worked all through intense treatments and two serious surgeries. He had an ileostomy bag and a port and he looked like someone walkiung to his grave as he left for work every day.
He went to Boston because they said they would give him intraoperative radiation, but oops ,,....somehow they screwed up and couldn't do it. He had dirty margins and his future was pretty bleak.
A lot of ppl. would have given up- quit the job, basically ' waited'.
He didnt . He just kept putting one foot in front of the other. I was never quite sure how he did it. When he got home from work , he would just about collapse on the couch and konk.
Eventually , he went from emaciated and gray looking to 5 lbs overweight and healthy looking. He eats whatever he wants ( they said he would be a on a 'soft diet' forver) and no longer has a bag. he runs circles around most ppl. I know and his last scan showed NED. His drs. are stunned.
Sure, he could have a recurrence next year, but he figures the guy next door could get cancer and die before him, or as you said, maybe have a stroke and live disabled or just drop...
Keep your chin up, kid.
They dont know everything ..they are not God .
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I've been waffling for days about whether to say anything, becuase maybe I'm misunderstanding some of the earlier comments on this thread. On pg 4 someone wrote "estrogen is not the enemy", and maybe their only intention is to point out that the exact nature of the link between estrogen and receptor-positive breast cancer is not fully understood.
I haven't read the linked studies, and maybe this information is included in them, but I feel like I should say something in case others also haven't read them or the info isn't included. While there may be doubt about the role of estrogen in breast cancer, I don't think there is much if any about the increased risk of endometrial cancer if estrogen is "unopposed" (used without accompanying progesterone/progestin). I'll just include one link, and quote the summary of the paper: "Endometrial cancer risk increases substantially with long duration of unopposed estrogen use, and this increased risk persists for several years after discontinuation of estrogen. Although not statistically significant, the risk of death from endometrial cancer among unopposed estrogen users is increased, similar to the increased risk of developing the disease. Data regarding risk for endometrial cancer among estrogen plus progestin users are limited and conflicting." I hate to think someone might read this thread and decide to use estrogen because the link to increased breast cancer risk is unproven/not understood, and end up with endometrial cancer instead as a result.
I apologize if I'm misunderstanding the earlier comments, pointing out the obvious, or if this information is included in the linked research papers.
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Hi Purple32,
Thanks for the information. I have just finished reading the AnitCancer book and really liked his take on things. I don't have any idea what DIm or IC3 is so will google it. I want to find a different and safer approach to managing my cancer. Thank you for your help.
Kristina
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YW kristina
Good luck to you in your decision ...research!
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Kristina: Let us know what you find out ! I keep putting off doing research because I hate to dwell on cancer so much---but I probably should take something since I no longer take the Aromasin.
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Curveball - thank you for the comment and encouraging more discussion. I hope you have time to read or scan the research and to read the posts about how the estrogen receptor and the Bcl2 gene are down-regulated by natural progesterone.
The estrogen is not the enemy comment is based on the 'junk media reporting' - they do not interpret studies as they need to and too often cause crisis where there is real information hat can save lives.
Our own personal estrogen that our bodies supply for us is not the enemy. If we need - IF a huge IF, bioidentical estrogen supplementation, that is not the enemy. It is necessary for tests but we may or may not need some estrogen therapy --- but only if it is natural, bioidentical estrone, estradiol or estriol and supplemented in a way taht can be absorbed and without harm to the patient.
The risk of increased cancer and heart disease is from SYNTHETIC ESTROGENS that were prescribed in HRT.
After a study in July 2002, the news media reported that hormones were shown to increase risk of heart disease and breast cancer, but the studies were on synthetic estrogen and synthetic progesterone. They treated the natural bioidentical the same as the synthetic.
IMO - anytime we are talking about synthetic hormones, we are talking about increased cancer risks. There are other ways.
That is what the thread is there for, to talk it out.
That is why we must research on our own to know our own path. No one should ever take simple and complex statements from anywhere on bco or anywhere else ever and run with it.
PART OF THE STUDY ABOUT ENDOMETRIAL CANCER
""""The summary relative risk (RR) was 2.3 for estrogen users compared to nonusers (95% confidence interval [CI] 2.1-2.5), with a much higher RR associated with prolonged duration of use (RR 9.5 for 10 or more years). The summary RR of endometrial cancer remained elevated 5 or more years after discontinuation of unopposed estrogen therapy...."""""
As we see, this is about synthetic estrogen therapy that did not include progesterone or DID include synthetic progesterone - yes, upopposed but also SYNTHETIC.
As far as I know to date, the U.S. government has not done any studies on natural bioidentical estrogen or progesterone.... where this study comes from.... and the other studies in this threaad are from research by more alternatively, traditionally-minded doctors and scientist from all countries.
Thank you again for bringing this up for discussion.
LOVEEssa
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At the risk of sounding stupid...what is the difference between a natural bioidentical and a synthetic. I was taking both bioidentical e/p when I was diagnosed (in a cream form).
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Mini1
You don't sound stupid at all! I am tired of researching until my head is spinning. Why don't the damn drs. know more ?
Synthetic hormones are like hormone replacement therapy. My GYN wanted me to take this after menopause , but I refused . Just a few months later, their were reports that hormone replacement therpay ( HRT) caused heart attacks.0 -
So they are pills and not the creams?
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Curveball
Pls read the earlier posts. Our bodies need estrogen to keep healthy bones etc. We are dealing on a much more sophisticated level than the typical docs who just want to kill all our estrogen.
Mini
Forgive me to go off topic but i honestly feel a fear mongering which functions like a curse from my regular doctor. I fear death every time i talk to her. Stress worry. Is this the voodoo of the self fulfilling prophesy?
Then i speak w/ ayurvedic doctor and he says "you will live another 30 years". Of course he cant promise but this is like white magic blessing.
Your intuition was correct about the cancer when the doctors were wrong. Remember that.0 -
@madbluebird, sorry, but I think you are misunderstanding the results of the study I linked. It doesn't say that synthetic estrogen opposed by synthetic progesterone present an increased. According to the study, the data on are conflicting. Maybe risk is increased, maybe it isn't. As I understand it, it's when estrogen's effect is continuous, without ever being counteracted by progesterone, that the risk of endometrial cancer increases. It's true that the hormones used in the study were synthetic, but estrogen promotes endometrial growth, whether it's synthetic or bioidentical. Also, I'm only talking about risk of endometrial cancer. The study did show that with HRT including both hormones, some other risks, such as clotting, were increased.
@natkat, it's true that estrogen is required for healthy bones, etc. But with receptor-positive disease, estrogen also promotes cancer. It may not be "the enemy", but it does pose a danger to our continued health. Yes, the biochemistry is complex, and I don't completely understand it, but I don't think it's too simplistic to say "with receptor-positive cancers, the less estrogen there is, the less likely that the cancer will spread". Maybe at some point the detrimental effects on bones & so on exceed the benefit from reduced cancer risk. I don't know if that point has ever been exactly located. I hope it has, and that there's a way to regulate doses of tamoxifen or AI's so they don't reduce estrogen levels any more is than needed to keep breast cancer in check.
If your doctor uses scare tactics on you, I totally agree it's time to get a new doctor, but the fact that he has lousy interpersonal skills doesn't mean his medical advice is bad, nor do the ayurvedic doctor's reassuring words make his treatment more effective than standard medicine. I'm not trying to convince you to use standard treatments rather than alternatives, but if you choose alternatives, do it because you've looked at the facts, know the risks and benefits of each, and you've chosen the alternative path because you prefer its benefits and risks over those of standard treatment, not because you dislike the medical doctor's personality.
I'm bowing out of this thread now. The original post requested info about alternatives only. I've drifed off-topic, and I don't want to be a thread-jacker.
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Curveball
Thank you for consideration of topic. Pls read the many posts and research about estrogen metabolism. Your points are accuate as far as they go ... My research is leading in direction of complex hormonal balance. The notions of unopposed estrgen are more simplistic more old school. Certainly effective reduce estrogen = reduce cancer but i want my estrogen AND good health.0 -
Possibly off topic afterthought ... WHY are we sold the notion we must sacrifice our femaleness to cure bc? We must amputate our breasts and/or shut down our estrogen? Can we be well AND fully female?
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yes, yes, we can. I think the issue of bc developing is that we have gone off balance in our hormones to begin with, the door opens and we roll out of good health one way or another - be it heart issues or cancer - the rest is the history of hauling our arses back up the hill and through the door of health again.
Curveball, I will get back to your comments later, too tired to focus tonight. But for now, please read where we have been on this thread, as I will too.
Mini, everytime someone says to us that we are going to die, it is a tape that runs over and over through our heart and being, and we need to find the messages that are the reversal, the balm to the fear that Natkat mentioned. I have even heard this statement from a naturopathic type who said Do you want to die? when I was balking at doing it their way. But there is no way I accept this monotony, the death cry is what I call it. I am tenacious and there are more ways to get back to health for each one of us than we can count. Just start climbing the hill.
LOVEEssa
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I re-reading this thread,
EDITED TO ADD - COUSINITT welcome, I forgot to say that three times now, so back with a sorry I forgot face for you.
and anyway.......
I found this info from Athena that brought me back to questioning my ocnc yet again. He mentioned the ER PR changes and that was why he wanted my to have a biopsy, so he knew what we were treating (not that I allowed him to treat anything) but that was part of my reason for allowing the FINE CORE NEEDLE biopsy that ended up being the punch ripping of the cancer lymph node within my body biopsy - yes, I have issues, look at my face.
Anyway, when I found this info on the cancer having different sections and that seperate tumors can have native results, I am thinking why didn't the once explain this to me? Why do we have to find out in other ways? Thank you Athena for sharing the info.
Athena wrote::: """""You bring up the issue of degree of er positivity. That is another problematic area. Usually, so the story goes, the most reliable measure of one's degree of hormone responsiveness is via the pathologists report following surgery. But new findings say it appears that different areas of a tumor may have different degrees of receptivity. At first glance, this might not seem problematic, but I think it is. In my needle biopsy, the report said 95 percent er-pos. That would argue for a treatment plan with heavy emphasis on estrogen receptor suppression. But my post-surgical pathology report later put my positivity at only 10 percent, and only 1 percent er-pos. All of a sudden, I become very close to triple neg. Pathologists simply take a sample of the tumor and analyze it, but it appears that tumors have many stripes and that different sections may yield different results.
To me, this may partly (not completely) explain why so many stage IV sisters report that their receptor status has changed in mid-course. It seems that it can indeed change, but it's also believed that in multiple tumors there can be native differences."""""
LOVEEssa
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