For Informed People Using Alternative Treatments

Momine · January 2014

Brookside, that is pretty much the bottom line: get lean and stay that way. That said, making sure you get a LOT of fibre can also help. Adequate fibre helps eliminate estrogen from your system. I have also seen some things here and there suggesting that healthy intestinal flora may help.

BrooksideVT · January 2014

I am happy to hear that, Momine; both ideas are new to me.

hjpz · January 2014

I have no clue about the progesterone cream thing - that is why I haven't used it yet. To be honest I am very wary of adding any hormones to my body. It is just something I was going to look into. I have little to no body fat. I am 5'2" and weigh around 118 pounds. I walk 5 days per week, eat a ton of fiber daily, and am a vegetarian. My blood work for sugar, cholesterol, BMI, calcium, etc... are always in the normal range since my first diagnosis. Not sure what else I can do but doing something gives me some sense of control over this whole crazy cancer situation.

new2bc · January 2014

hipz,

Thank you for sharing your story. Did your hormones get out of wack recently? Did you monitor your hormones between the 1st diagnosis and 2nd diagnosis? I noticed you started Tamoxifen in December. Did you check your hormones before you started Tamoxifen? The reason I am asking all these questions is sometimes Tamoxifen fools the ovaries to start making more and more estrogen. In my case, I may need to stop tamoxifen for a brief time and check my hormones again. Are your estradiol levels high too? That is the bad estrogen putting us in risk for recurrence. Also, has anyone here tried Lupron shots? my oncologist mentioned that we may resort to it if I can not decrease my estradiol.

Have you considered taking the ovaries out? I am considering that option myself. Any ideas from anyone?

abigail48 · January 2014

I wonder about homones in bee pollen I've taken now for several years. as some whole sugars have minerals, vitamines etc, I'd think that all estrogens arn't the same either

abigail48 · January 2014

gary talking just now about vitalism. take in vital foods rather than toxic ones, taking in toxic foods will make your life toxic & people & other animals will relate to you in a toxic manner. He's now talking about sunflower seens, I keep forgetting to grind some up. dense vitamins & minerals scientific literature cardo vascular protective lowring homo cystine level, lowers chloresterol, has abundant phyto steroles. right from the broadcast to your eyes. good things for the mood as well. lots of selenium & magnesium

Momine · January 2014

New2, I had my ovaries out as part of treatment. There is downside, obviously, in terms of cardiovascular health, sexual issues etc. However, after 2 years, I feel pretty much back to my old self and we have no history of heart trouble.

GlobalGirlyGirl · January 2014

hjpz - I hope you get good news. Prayers your way.

hjpz · January 2014

new2bc - I have never had my hormones checked that I am aware of. It seems to me modern medicine isn't into checking hormone levels - at least that is my experience as I have asked two doctors and neither think it is necessary. I was on Tamoxifen for 5 years after my first diagnosis in 2001. I was also on the medication Zoladex for 2 years which put me into a temporary menopause. It seems to me there is a direct correlation to when I stopped my "hormonal treatments" of Tamoxifen and Zoladex to when my second BC formed since it has been 7 years since I have taken either and it takes about 6-8 years for a tumor to grow to a palpable size. I am not a Dr. nor a scientist but this is why I think my hormones are "off". I have also always had signs of what I would now consider hormonal issues - PMS, bad cramps, bad periods, hormonal migraines, hormonal acne. I asked my oncologist the first time if they have ever done a study on women's menstrual cycle issues who have had E+ P+ BC and he said no and kind of looked at me funny. I told him I think it is worth a study IMO. I just restarted Tamoxifen in mid Nov (2013) so I don't think that has a correlation to my current ovarian cyst issue but I could be wrong. I really want my hormone levels checked - I am going to ask again.

hjpz · January 2014

p.s. new2bc - Ovary removal was recommended but I declined since I read a lot of negative things about it (heart conditions, bone loss, etc..) I was actually at the OBGYN to discuss having my tubes removed because from my research that is where a lot of ovarian cancers originate. Obviously if my CA-125 is at a high level I will need to have at least one of my ovaries and tubes removed. We shall see. I am a little irked that none of my Dr.'s ever recommended an ovarian ultrasound for the past 10 years since my BRCA2 mutation was identified. Just reminds me to be my own advocate and to keep up on research.

Thanks GlobalGirly!

new2bc · January 2014

hipz,

When I asked my obgyn to check my hormone levels before I take Tamoxifen, he only did the test to show if I am in menopause (FSH). I wanted the test that shows estradiol, progesterone, testosterone, etc. I asked the nurse and she said they do not do these tests. My primary doctor is a woman and more advanced. She ordered the test which is by blood. The drawback to this test is that it does not give all the important info such as the ratio of 2/16, etc and is just a snapshot of your hormone at the time they draw blood. The most accurate one is called 24 hour urine test which my primary doctor does not do. If you have a naturopath doctor, they can order it but it is very expensive and insurance does not pay for it. I have not done this test yet. Life extension does this test and they do not require a doctor's order. But if your doctor does the test by blood, you can get an idea if your bad estrogen is high before spending a lot of money on the urine test. By the way, I had bad periods and acne too. I have never heard of Zoladex. Did you take it with tamoxifen?

abigail48 · January 2014

I had endrometriosis, I think, blood comming from everywhere, but all went away for a long time after I stopped having periods

hjpz · January 2014

new2bc - I wonder why conventional medicine is so anti hormone level checks?? I have had BC impacted by hormones twice - I have also had abnormal cervical cells (many years ago) -- I would think my request to check my hormones would be more than valid! I do not have a natropath as the only one close to me that I can see if 45-1 hour away from me. I think I am going to research doing the test on my own via mail or something. The book I just read said to do the test via saliva versus blood to get the most accurate reading since levels fluctuate. Not sure if this is true. At this point I would be happy with any test!

Yes I took Zoladex and Tamoxifen together (2 years/5 years). I actually found the Zoladex treatment on my own through European studies I found online. It had just gotten approved by the FDA for BC the year I started it but is used more widely now. It was originally used for testicular cancer. I had an injection in my stomach (a little tablet) every 3 months. I had hot flashes that would set your house on fire but at the time I did it as an alternative to chemo so I didn't care! hahaha

hjpz · January 2014

abigail - see! I am onto something with this bad period/hormonal breast cancer thing! I am not crazy!

Momine · January 2014

Hjpz, as far as I know, it is not that anyone is "against" checking hormone levels. It is more that it is very difficult, from what I can gather, to get any kind of accurate reading, especially in pre-meno women.

hjpz · January 2014

Could be Momine. I just started asking about the hormonal testing recently and was kind of thrown off that I was told it was not necessary. If the Dr. would have said what you just said about the levels not being accurate I think it would have made more sense to me! Thanks

Momine · January 2014

Certainly ask if that is what it is. I seem to have seen refs to this problem.

Lenn13ka · January 2014

I had my estrogen levels checked by my naturopathic Dr. It was the 24 Hr. Urine method. My estriodol and estrone levels were high and estrogen quotient was 0.1 ... Should be at least 0.4 or above. He has me on kelp (iodine) as a means to correct this. The test cost around $350 and wasn't covered by insurance but I have always had hormone imbalances and wanted to get this information and try and correct it.

new2bc · January 2014

Lenn13ka,

Thank you for sharing this info. I recently did the iodine urine test but I have not received the results yet. If I am deficient, my doctor will put me on iodine supplements. What dose of kelp are you using? Did your doctor put on anything else to reduce estrogen? My estradiol level was very high done by blood. I will do the 24 hr urine test in a few months. I am also taking indole 3 carbinol and ground flaxseed.

Lenn13ka · January 2014

new- he has me on 600 mg of Kelp which ends up being 400 mcg of iodine. I haven't had my iodine level tested yet. I am hoping my PCP will order one for me so insurance will cover it. She is pretty willing to work all the alternative angles with me, which is great. The naturopath just has me on the kelp for balancing the EQ. I will have it tested again in June.

hjpz · January 2014

Thanks the info on the cost of the hormone test . Il that is very useful IMO. I wish I had a naturopath near me. I was just talking to my hubby tonight about trying seaweed and kelp as healthy snacks so now I have another reason to try it!!

juneping · January 2014

hjpz,

I got mine in flakes form. And use it to add flavors to my salad or veggi. It's a little salty and very yummy...my sis add it on her rice.

cp418 · January 2014

hjpz - I'm jumping in here late but I just wanted to respond to one of your earlier posts. I TOTALLY agree with you regarding excess hormonal imblances present in some women. I also had many of the symptoms you mentioned - very long heavy periods, horrible PMS, headaches, breast pain, endometriosis and had to live with it for years using OTC medications for the pain/monthly symptoms. Gyns did not measure hormones and I often wonder about the "small breast cancer risk" in taking OC pills in women who have these hormonal imbalances. Gyn simply hands out the prescription as if one size pill fits all women's needs.

Likewise, when I was dx with ER+100%, PR+100% maybe I should not have been as surprised either with prior fibroadenoma hx and moderate dense breasts. I swear my body was flooded with hormones...... Again, Onc simply wanted to start me on tamoxifen after chemo without testing hormone levels. IMO it seems only the naturalpaths and nutritionists take any interest in the individual patient's metabolism and will order these tests. It's just ANOTHER reason for us to be proactive in our healthcare and to be informed, ask questions and use other sources if necessary. ok - end of rant.

juneping · January 2014

does insurance cover the naturopathic doctors and/or nutritionists? or is it out of our own pocket?

cp418 · January 2014

I have to pay for my Nutritionist myself including any labs ordered.

juneping · January 2014

thanks cp!!

Lenn13ka · January 2014

I have Blue Cross / Blue Shield. They offer a 10% discount to my naturopath and they paid for a lot of the blood work he did. They didn't pay for the estrogen level test or the blood work he did to monitor natural killer cells. Maybe it depends on the lab? They were all different.

My PCP will order any test she can for me so I can just give the results to my naturopath.

Every so often I feel like calling my insurance company to contest the costs that don't get covered. Standard of care for me was chemo and I didn't do it so I feel that I am saving them mucho bucks by doing it my way...