Natural estrogen suppressants

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azlady
azlady Member Posts: 17
edited June 2014 in Complementary and Holistic Medicine and Treatment

Was diagnosed mid-July, had surgery Aug 3rd and will be doing multi-catheter brachytherapy for 5 days beginning Sept 19.

Have not scheduled a meeting with a MO yet (will probably do that the week I get the radiation) but have been told by my surgeon and RO that I should expect to be put on hormone suppressants.

Don't really like the idea of the SE of the ones I've read about and am wondering if anyone has tried a different type of treatment for ER+/P+, Her2-.

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2011

    azlady, the most common ones are I3C (Indole-3-Carbinol), DIM (won't try to write out that one!), Grape Seed Extract (currently in a trial at MDAnderson), and Myomin (a Chinese herb).  You'll find threads throughout the Complementary and Alternative Forums mentioning them.  Check the Natural Girls thread, and/or do a search (box to upper right) for some of those words.  

    It's unlikely you will find an MO to support you in going against the standard of care, although there is some very recent research (like last week) saying that Aromatese Inhibitors may not be needed by all early stage, older (post menopausal) women.  But most of us who have gone the alternative estrogen modulator route for whatever reason have had to educate ourselves on the options and find a naturapathic or integrative doctor to do hormone testing.   Good luck, and feel free to PM me if I can give you any more direction.    Deanna

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  • Seashellie
    Seashellie Member Posts: 152
    edited September 2011

    I've heard that i3c and DIM are contraindicated with Tamoxifin but that there is a study underway about that. Has anyone heard of any contraindications of using them with AI's? I'm currently on Femara but thinking about adding it to my arsenal. Trying to research it first but not finding much info. It seems to me that it would be okay based on the mechanism of AI's vs.Tamox.  Any thoughts?

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  • Melizzard
    Melizzard Member Posts: 121
    edited September 2011

    Don't forget calcium d-glucarate

    xoo

    Melissa

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  • 2doglover
    2doglover Member Posts: 1
    edited September 2011

    I just started taking Arimidex for ER/PR + (had the surgery, chemo, radiation) and have already started the continuous headache.  I am looking for alternative possibilities.  I'll look for the Natural Girls thread like dlb823 said to do.  

    dlb823, you mentioned recent research about Aromatese Inhibitors maybe not be needed for early stage post meno women?  where would I find this research?  I am only 46 but post-menopausal.  Any info on this would be great!

     

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  • dlb823
    dlb823 Member Posts: 9,430
    edited September 2011

    2doglover, here's what I was referring to:

    http://health.usnews.com/health-news/family-health/cancer/articles/2011/08/31/some-older-breast-cancer-patients-can-skip-hormone-therapy-study

    (You'll have to cut & paste that link).

    Deanna 

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  • DebConway
    DebConway Member Posts: 26
    edited September 2011

    Are you having treatment with the SAVI device? If so I can let you know about the positive experience with my treatment. I just finished my treatment a week ago and feel fine.

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  • azlady
    azlady Member Posts: 17
    edited September 2011

    Was hopoing to get the savi but my cavity healed too quickly!

    Am having the multi catheters (interstitial) put in on Thursday.  Have been trying to get info from anyone who has had that type of APBI but can't seem to find anyone.  :-(

    Fortunately, Dr Kuske will be doing it since I live in the Phx area.

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  • jamiebeth
    jamiebeth Member Posts: 50
    edited September 2011

    Small world, azlady! I live in Phoenix and finished brachytherapy at Arizona Breast Cancer Specialists in March of this year. Dr. Kuske's wife, Dr. Coral Quiet, was my radiation oncologist. I had the SAVI catheter, though, so can't give you much advice, but doubtful you need any anyway since you're already into your treatment.

    It's not so terrible, is it? It looks scarier than it feels, at least in my opinion. I had a great time freaking the nice ladies out waiting for their daily dose of external radiation with the tubes sticking out of my chest. Didn't hurt at all but looked pretty gory. (Sorry, I have a twisted sense of humor.)

    Take care, and good luck!

    Jamie 

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  • azlady
    azlady Member Posts: 17
    edited September 2011

    Hi Jamie

    Definitely is a small world.... was Zannis your surgeon too?

    Two more days to go and then I"m done with radiation Friday afternoon!!

    The multiple catheters (he put 20 in me) are actually smaller and less obtrusive than the savi but 3 of them are starting to feel sore now when they disconnect the tubes from the overloader.  However the two techs that are working with me there are great... as is everyone else in his office.. and I find that if I take 2 ibuprofen before the treatment that helps.  

    Am going to meet with a medical oncologist at 1 today and his office is right around the corner from Kuske's.  Boy do I have a lot of research concerning estrogen dominance, using DIM as well as natural progesterone to talk to him about.  Good thing is that I've heard he works with a naturopath with some of his clients so at least he is open to discussion of integrative medecine.

    Looks like your stats are similar to mine... did you wind up taking an AI?  

    Which medical oncologist did you go to?

    Feel free to pm me if you want to chat...

    BTW... you might wind up seeing me and Kuske in the Republic one of these days.  They were there doing a photo shoot of the treatment and I agreed to let them take my picture connected to the tubes.  :-))

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  • jamiebeth
    jamiebeth Member Posts: 50
    edited September 2011

    Very cool, re: your picture in the Republic. The techs at Dr. Quiet's office let my mother take a picture of me hooked up to the tubes, so I have the experience immortalized. ;-)

    I didn't use Zannis, although he's an excellent surgeon. I used Dr. Linda Liu instead because I found her more accessible and willing to answer all of my questions. Plus she came highly recommended. She did a fantastic job with my lumpectomy and I'd recommend her to anyone in the future.

    I've been to two different oncologists: Dr. Michael Roberts, and Dr. Kato. I'm currently with Kato. The reason I switched is that while they're both of the same caliber, Dr. Kato has a much better bedside manner. I figured that if I was to have a long-term doctor/patient relationship with my oncologist, I'd rather it be with one I get along with. 

    We do have very similar cases, don't we? How old are you, if you don't mind me asking? I'm 41 and was diagnosed right after my 41st birthday. Being pre-menopausal, the normal course of treatment would be Tamoxifen, but I can't take it because I'm sedentary. I have a neurological disease similar to MS which keeps me in bed much of the day. Tamoxifen could cause blood clots in someone like me.

    Both oncologists want me to have my ovaries either removed or shut down, which would decrease my chances of a distant recurrance by 6% (my oncotype was 19, borderline low/intermediate, and I'd have an 18% chance of a distant recurrance without Tamoxifen or ovary removal). I refused to do anything with my ovaries since surgical menopause would wreak havoc on my body. So, no tamoxifen, no chemo, no hormonal therapy of any kind. I'm taking my chances. The way I figure it, even though I'm only 41, quality of life is more important. Also, there's no guarantee the cancer wouldn't come back even with adjuvant therapy.

    I'm open to DIM. Right now I eat broccoli five times a week. I plan to look into a naturopath at some point--let me know how you like yours. 

    It's nice to meet you, and I hope all goes well on Friday. Believe it or not, having the SAVI catheter removed didn't hurt at all! And I'm a wimp! So I'm sure your removal will be easy. 

    You're more than welcome to PM me also. Take care!

    Jamie 

       

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  • azlady
    azlady Member Posts: 17
    edited September 2011

    The oncologist I saw yesterday was Kato but I'm not sure I will use him.  He really didn't spend the time answering some of my questions about integrative medecine and other alternatives... just kind of skipped past them.  I wanted his view point on looking at this from an estrogen dominance viewpoint and what he thought about natural progesterone and DIM.  He didn't make any comment on using DIM and just said that progesterone would not be appropriate.  Basically, he said I needed to take an AI for 5 years. I asked him to comment on some new journal articles that came out this past july that talked about possible heart issues related to taking AI as well as bone loss... I am 59 now and have ostopenia.  He simply stated that any bone loss would revert back once I got off the meds and that there was really no link between them and having heart problems later on.

     BTW... when I asked if I should have the onco dx teast done he said no so have no idea what my oncotype is.  The only test he wants to do is the CA-15-3 after I start arimidex.

    The other oncologist I wanted to interview is no longer accepting new patients but I did find someone else in Scottsdale that has extremely well respected by his colleagues so will call today to see if I can get in to see him.

    I know the surgeon you went to as well but decided on Zannis shortly after meeting him.... we just clicked and he appreciated my type A personality and needing to be in control.  :-)   I also liked the fact that he gave me is pager and said I could contact him 24/7 and he would get back to me no matter what.  He even called me while he was on vacation to give me the path results after my durgery.

    I think we are both fortunate to have so many excellent choices here in the valley!!

    Back to ABC at 2 for final treatment and catheter removal!!  YIPPEE

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  • Beana
    Beana Member Posts: 23
    edited October 2011

    Hi ladies - I'd be interested in anything you learn about doing something other than Tamoxifen or A-I.  I'm finishing radiation Monday and will have to face that decision next.  I don't want to do them, but know I need to do something else instead.  I'm 62 and a chiropractor forever, and took antioxidants throughout radiation until it messed up my swallowing and I had to quit all pills.  So I'm free-thinking and looking for options.  This is my second time around - first dx was 16 years ago when I did lumpectomy only.  I'll send you my list of supps if anyone wants it.  Love to all!  Jeana

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  • azlady
    azlady Member Posts: 17
    edited October 2011

    Just started taking Arimidex todoay.... will see if I have side effects.  Haven't found anything else at this time but will keep researching.

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  • vickilf
    vickilf Member Posts: 95
    edited October 2011

    Beana wrote:

    - I'd be interested in anything you learn about doing something other than Tamoxifen or A-I

     I would be interested in anything else too.  Wed. have doctor appointment and I know he will try and put me on Tamoxifen, I don't want it. I would like to do something natural also.  Any help for us?

    Vicki

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  • vickilf
    vickilf Member Posts: 95
    edited October 2011

    Before we are put on Tamoxifen or other drugs shouldn't we be tested to see where our estrogen, progestroene, testosterone levels are. Do doctors usually test these?  I had to ask for these tests.

     Also why can't we just eat the foods to lower our estrogene level and not have the side effects from drugs?  From what I've read Tamoxifen, other drugs don't stop the cancer from coming back, maybe the luck of the draw.. Wouldn't it be better to try natural foods to lower and be re-tested a lot? Don't drink cow's milk with all those hormones, dairy, eat organic? I'm just wondering. I guess I was so damaged from taking that Cholestrol medication that was NEEDED  and now maybe not needed and caused me major side-effects, that rare (not so rare) serious muscle problems (amoung a few side-effects) that I'm scared to take prescription drugs and try to go natural. 

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  • Kaara
    Kaara Member Posts: 3,647
    edited October 2011

    vickilf:  I hear exactly what you're saying and I agree 100%.  We are being told that the hormones our bodies make naturally are driving the cancer and most probably it is the chemicals that we are getting from our diets and the environment that are making the wrong kind of estrongen and increasing those levels.  I never had my hormones tested until I went to a private physician who specializes in bioidentical hormone replacement, and he balanced mine so that they are appropriate for my body and what it needs, and I feel much better and have more energy.

     Properly balanced hormones in the body protect against cancer, but big pharma doesn't make much money with that plan.  I sooo hate to think this way, but after so much research of the pros and cons of conventional medicine, I'm making my own decisions about my treatment. 

    I'm still going through the process of getting diagnosed...mammo...US...inconclusive...now another mammo and if it shows no change, then a biopsy.  In the meantime, I'm getting my body in optimal condition with diet and supplementation so I can have a fighting chance.  It's all natural so what can it hurt.  You're right..no milk or dairy other than organic eggs and some cheeses. 

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  • azlady
    azlady Member Posts: 17
    edited October 2011

    Have been on Arimidex for about 1/12 weeks now with no side effects!!  Of course, side effects (if any) may not kick in until I've been on it for at least 1 month but am keeping my fingers crossed.

    Go back to Kuske this Wed for my 1 month post radiation check-up and will ask him about if/when I may notice any effects from the arimidex.

    My next appointment with Kato is toeards the end of December.  That's when he will order blood work-ups.  Just hope he is more personable this time....

    I may have my gynocologist order hormone tests, including the urine test to determine ratio of good to bad estrogen.  He's really getting interested in naturopathinc medecine so I know he will be really interested in working with me on this if I decide to go that route.  Of course, as long as I don't have any side effects from the AI, I'm more than happy to stay on it. 

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  • vickilf
    vickilf Member Posts: 95
    edited October 2011

    So what kind of blood tests do we have for breast cancer?  What do the tests tell us?   Our Estrogen levels, anything else?

     What I mean is after our surgery, radiation..... do we get blood tests every so many months?  I have CLL cancer and have my blood tested every 3 months or so to see how my cancer is doing, do we have this for breast cancer?

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  • vickilf
    vickilf Member Posts: 95
    edited October 2011

    Hormone Balance: Estrogen, Progesterone and Testosterone
    By
    Barbara Minton | January 31, 2011

     I believe this is wonderful article everyone should read. (Maybe someone wll turn this link highlighted, I don't know how to. )  I was one of those lucky women to be given those synthetic drugs, known to as HRT, that were show dangerous to your health later on. Anyway I think this is a great article.

    http://www.alignlife.com/articles/hormones/Hormone_Balance__Estrogen_Progesterone_and_Testosterone.html

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  • Kaara
    Kaara Member Posts: 3,647
    edited October 2011

    vickilf:  Like you, I was taking HRT (premarin only) after a complete hysterectomy.  I never felt quite right, developing thyroid problems and other symptoms that couldn't be explained.

    Last year, I visited a private physician who put me on bioidentical hormones, including progestrone, plus some Vitamin D-3, and DHEA, which converts to testosterone.  In six months time, I was feeling like my old self again with energy to spare!

    Now there is this suspicious spot on my mammogram, and I have to get a biopsy.  I know the new hormone regimine I'm taking did not cause this...it takes many years for a small nodule to become large enough to be seen on a mammogram, so this happened during my years of taking premarin only, and not having balanced hormones.  It's just common sense.

    When I told my bs, he just smiled and said "estrogen is estrogen".  I knew then that I would never get any help or support from him.  The article you posted is great and just reinforces everything that I have learned about balanced hormones in the body and the protection they offer.  Thanks! 

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  • rosemary-b
    rosemary-b Member Posts: 2,006
    edited October 2011

    I believe Alignlife is an affiliate site. People can mke money refering people there through discussion boards like Breastcancer.org. Maybe their information is valuable and nobody here is an affiliate but I would hate to base my treatment choice on something like that. I haven't read the site because it bothers me that somebody would try to make money off my misery in this way. At least with MDs you know they are making money. They don't try to sneak it into a discussion board.

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  • FLwarrior
    FLwarrior Member Posts: 977
    edited November 2011

    Are any of you taking the natural supplements in place of Tamoxifen?  Which ones? how much?

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