Decison on whether to take hormonal therapy

Hi Linde, two years ago, when I was diagnosed, they did not do the Oncotype test on node positive. So, it was basically a throw of the dice.  Maybe, I did not even need chemo, grrrrr, I really really hate THAT idea.  At first, the onco was overpowering, but I let him know whose body it was.  I told him that from now on I do not wish to be overtreated.  I'm already having to deal with permanent damage from chemo and most likely rads as well.

The urine test for hormones is done by naturopaths Linde. I did not ask my onco, because I know he would not know...but he did offer to do the Vit D.  I almost fell off my chair Lol

Sorry Linda, sounds like we both would love to turn back the clock 

Thank you mods 

Hello.  I was diagnosed july 2011 ER+ and PR+ both 99%, Ki67 21%; no detectable mets but unclean margins with hemorrhage at op site; went back and doc obtained clean margins. Mammosite four months after surgery; last month started a course of Aromasin; after two weeks had continual headache cause by the extremely high blood pressure it brought on.  Stopped the Aromasin due to b.p. and now it's normal.  Asked doc if I could try another anti hormone and was told that the others have worse side effects.  Adjavunct online states 9 or 10% improvement in survival for me (mine now stands at 82% survival) if an anti-hormone regimen is undertaken.  Asked doc about naturopaths; was referred to a Doc of Oriental Medicine.  In hopes of knocking down some hormones, I am taking the following herbal preparations (which are supposed to be "natural" aromatase inhibitors:  passion flower; curcumin; oregon grape root; quercetin and also these for anti-tumor -inflammatory:  "myco defense" (formulary of different mushrooms); lycopene; "zyflamend"; selenium and fish oils, vit D + calcium.  I was told to eliminate folic acid as it is somehow carcinogenic. This is just garnered from reading online.   I have read that too much of one item can have the opposite effect; so if anyone knows of a knowledgable naturopath or Doc of O.M. in L.A. area, please post.  

It has occurred to me that if I am successful in blocking the estrogens, might not the same side effects occur? ( As it seems the side effects are due to the blockage of estrogen. )

 If mastectomy could alleviate the need for this hormone treatment, I'd do it, but I don't understand how that could be effective systemically.  Every doc I have talked to said take the anti hormones; except a pharmacist, he said don't do it--the side effects are horrendous and the drug is too new.  It's hard to know what to do

lola2011, that's great that your doctor referred you to an Oriental doctor.  Did he do any hormone testing?

And yes, you can have some joint aches or other low estrogen issues with DIM, I3C, Grape Seed Extract or other natural estrogen modulators, but you don't have the bone loss of the A/I's or the blood clotting and other issues of Tamox.  

We're really fortunate to have quite a few naturopathic oncologists in Southern CA.  Depending on where you are in the LA area, here's a list:  http://www.oncanp.org/find_state.html#california  

If you ever have any reason to come to the Palm Springs/Palm Desert area, I can highly recommend mine, who is in La Quinta.  It was she who referred me to that association to give to others, so I'm sure anyone on that list is probably very knowlegable vis-a-vis bc.    Deanna

I am quite grateful for the replies and this website! I will definitely be checking into DIM and the naturopath list.  So much to learn, the exchange here is invaluable.  

Arimidex and osteo etc .....

Just when I think I have made peace with a decision not to have rads ( due to lung issues here ) I am faced with arimidex on my already bad bones. Is there anyone out there taking this nasty stuff who HAS osteopenia or porosis? This feels like marching myself right into the wheelchair.  I had a  bone densisty test yesterday, and from the yr 2000 I had 3 test comparisons. ( I was only 42 then) In 2000 osteopenia with numbers to show it , then a few yrs later it worsened  and was  much worse in 2006.  Now mind you, at one point ( early on) I was taking calcitonin . At another point, I was on actonel.  I stopped that  because of risks of femur breaking . ( class action lawsuit) 

 Add'ly , I exercised a lot then.  I  went through meno at age 41 and am 54 now, btw.

Now, in 2012, I have not exercised for at least a yr or more , have not taken anything for several yrs. Exercising has become painful and difficult  plus several times I had broken bones ( e.g knee) and just could not. I am expecting bad results on this latest test of course.  Possibly osteoporosis at this point. I have  a lot of back pain too.  Anyway, I will know soon enough for sure.

Still, I am sure my dr. will just say to add a lovely biophospate to the aroimidex mix.  I  am sick to my stomach.  All of this seems worse than BC!  I am 54 and can picture myself with a broken hip.  I have already broken 3 bones WITHOUT using a drug that accelerates bone loss.  This is SO depressing!

I have considered DIM, but then .... I think as lola does-

(lola said ) "It has occurred to me that if I am successful in blocking the estrogens, might not the same side effects occur? ( As it seems the side effects are due to the blockage of estrogen." )

 Right!  And then there would be accelerated bone loss, no ?

For all those with ' normal bones' now, it is one thing- still not optimal and no fun  I realize , but is there anyone out there in my boat ( I  am sure !) What do you do ?

I really appreciate any replies.

Many thanks to all.

http://community.breastcancer.org/forum/79/topic/736198?page=1

Hello,
I am researching this topic as I do not wish to take hormone blockers.  Either natural or artificial, it seems to me that the human body NEEDS its estrogens.  After all, cancer is the problem, not estrogen.  What I have learned so far is that ER+ cancer relates to the METABOLISM of estrogens. 

Estradiol and estrone are supposed to metabolize into estriol and 2 methoxy estradiol.  If the body fails to metabolize Estradiol and estrone into estriol and 2 methoxy estradiol the former 2 can become part of cancer pathology. (please fact check - I am just learning)

Likely the over-abundance estrogen-like substances now in the environment (processed foods containing soy products, pesticides, factory farm cows treated w/ hormones, plastic water bottles, etc etc etc) is responsible for overloading our estrogen metabolizing process.  We end-up w/ excess Estradiol and estrone our bodies failed to metabolize and these "feed" cancer cells.  Again, please fact check.  I am not an expert (yet).

In this case the solution is to enhance your estrogen metabolism.  Wish I could say more but I am still learning.
Will study the concept of methyl donors and the methylation process. Supposedly there is a reasonable list of substances which aid estrogen metabolism such as foods like berries and suplements like SAMe, MSM, etc. 
Will write more as I learn more.

I think DIM and flaxseed encourage the proper metabolism of estrogen.  I had my estrogen tested in February and they were OK, but could use improvement, so I added the DIM and flaxseed.  I'm going to have it tested again in the fall.

We obviously have to do what feels right for our bodies, and no one knows that better than we do.  I also think that whether we're pre vs. post menopausal can make a big difference when it comes to things that involve estrogen metabolism, as does what else we eat on a regular basis that might be a phytoestrogen or other estrogen disruptor, such as meat & dairy.  I've read all the pros & cons and believe that with a healthy, mostly plant-based diet, flax is beneficial, so I use it.  But I'm also a believer that organic soy products in moderation are good for us -- again, if we're not eating a bunch of chemical or hormone laden foods.    

Just my two cents worth on flax safety, which may not be the same for all of us, depending on many other factors.    Deanna