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Estrogen receptor

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I talked to my onco last week and asked him the type of cancer cells I had in regard to estrogen reception. I am so concerned about eating soy, since almost everything has it. He said mine was mildly and that I can eat soy but not make it the center of my diet.

What do your doctors say?

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

My oncologist told me there's no real research he can follow, therefore, won't comment. Now when I ask my nutritionist who had breast cancer, she tells me since not much known on soy, be careful. Eat as close to the food level and informed me I can have 2 servings of it per day. I have Whey protein, flax seed powder, chia seeds mixed with 1 cup of soy milk twice per day. Lots of good protein and calcium! If she didn't tell me this, I'd stay way away from soy. Note, this is only soy I get in a day.

My thoughts on docs, don't trust them as they are trained using meds and don't have much experience with supplements. Do ask your PCP, as they might have some good insight or enlist a good nutritionist...well worth it~

Hope this helps!
Jan

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Jan,
Thank you for your insight.
My onco recommended me to see a nutritionist, since I do not eat red meat, pork or chicken, and very little fish seafood.
He thinks is safe to have the nutritionist to monitor my vitamin levels.

Thank you!

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

My doc ordered hormone testing on my tissue to determine ER/PR sensitivity - mine was mostly negative. That's what I'm going on. I agree with Jan that docs are trained to TREAT with medicine, tests, etc.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Do you guys cook with soy sauce?
I was wondering because of the high content of sodium.

I do not cook with it, but I would like to use some from time to time.
How about tofu?

Pat51
Posts: 111
Joined: Feb 2011

Was you tumor also tested for the EGFR gene? If, so was your results negative or positive?

Pat

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I do not know. I re-read my biopsy and could not find anything related to it.
I have my 3 month appointment with my onco/gyno on November 2.
I am definitely asking about it.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Hi,

My original tissue was tested for hormone sensitivity - not sure if this is EFGR - results were slightly positive, mostly negative. My doc said that hormone treatment would not be effective for me.

Mary Ann (Daisy)

california_artist
Posts: 850
Joined: Jan 2009

EGFR (Epidermal Growth Factor Receptor)

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

That is what my doctor said to me, due to slightly positive receptor.

MJ5's picture
MJ5
Posts: 14
Joined: Feb 2011

The tumor biopsy I had showed that tumor was highly estrogen receptor positive, so my oncologist told me to avoid soy.

Most of what I have read about soy bean crops in the U.S. is that they are genetically modified that the crops are either sprayed heavily with the pesticide roundup, or that the genetic modification to the seed makes the seed produce its own Roundup.

I switched to almond milk several years ago. It tastes way better!

MJ

Double Whammy's picture
Double Whammy
Posts: 2300
Joined: Jun 2010

but my breast cancer was - so "they" assume the endo cancer was also ER+. I asked my oncologist about soy when first being treated for breast cancer. She said that recent studies showed that there is no definitive evidence that soy should be eliminated, something about identical results for groups consuming soy and eliminating soy. She did say to watch my intake, but if say I wanted some Chinese food, go for it - on occasion. I hate tofu, so no problem there. Don't like soy milk, either. I do avoid prepared foods because most of them have soy.

I think we need to be aware of potential bad things and do our research and make informed decisions about how we deal with them. I probably avoid soy more than necessary by someone's criteria.

I'm on Arimidex for breast cancer and so in my little brain, I've decided it's a good thing for the endo cancer too. My endo cancer was low stage, low grade, but it still makes me feel good to think I have some protection on board, whether it's true or not and whether I need it or not.

Suzanne

Rewriter's picture
Rewriter
Posts: 494
Joined: Dec 2009

I just want to put in a plug for almond milk. In looking for ways to get more non-dairy calcium, I bought some last week. For a day or two, I mixed three parts of almond milk with one part organic skim milk; it tasted great. Now, I can drink almond milk without cutting it with something else. In fact, I sometimes mix it with fruit (no sugar) and make some of the best milkshakes I've ever had. The fact that almond milk has no soy and contains 45 percent of the RDA of calcium in one cup makes it all the more delicious.

HellieC
Posts: 442
Joined: Nov 2010

I never thought of "cutting" a new milk with cow's milk as a way of phasing it into my diet. What a great idea. Almond milk is on my shopping list for next week. Must remember to buy the one with no added sugar though!
Thanks again
Helen

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Fayard,

My tumour was entirely upsc . My oncologist said UPSC is er negative so If I wanted estrogen replacement therapy on a low dose I coud have it. Here is an old thread about your question . I have been wondering how "Live now" is doing. I miss her . Shes a real hoot to read .

http://csnbeta.cancer.org/node/169399

here is an artical about er pr positive or negative for UPSC.

http://www.ncbi.nlm.nih.gov/pubmed/8005733

Grace

Cookiemookie
Posts: 6
Joined: Oct 2011

This is my first post, so I hope I am doing this correct!

I had(have)stage 1A endo adenocarcinoma grade 2/positve pelvic washing. I had a radical hysterectomy May 17, 56 lymph nodes removed all clear.

My tumor was + for estrogen so my Dr has me on Megestrol.

I too am concerned about soy. Also does this put me at higher rish for breast cancer? There is no family history of it and so far so good. I have a mammogram on the 31st.

Gracegoi's picture
Gracegoi
Posts: 59
Joined: Aug 2011

Megace is prescribed to those who have had breastcancer that is known to be estrogen positive so that may help eliminate your fears of getting it.

couldn't help but notice the positive washings so I did a little reading . There was one woman here who was in the same situation as you and was prescribed the same for her pelvic washings. I belive she was concerned about the side effects of megace. It always bugs me when women who may struggle with thier weight (And many women do) are given a drug that makes it harder in that area. Estrogen is stored in fat cells.

There are women who use tomoxifen and even uses both off and on.

Here is a link about megace and washings

http://csn.cancer.org/node/206969

It obvious the main wish of everyone here is that they get the best of care .

Since I got cancer its so easy for others to implant fear as to what I am or am not doing both on and off the internet because of thier brand of concern. See I just did some of it myself.

Good luck with your research and your mamogram.

Take care

Grace

JoAnnDK
Posts: 276
Joined: Jun 2011

,,,,,was mildly estrogen positive and I am on Arimidex. No breast cancer, but have it in my family. I was told that Arimidex is the least likely hormone suppressant to cause a weight gain. I think it is also the newest.

Is Megace a hormone suppresant?

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

JoAnn

Megace is a synthetic progesterone. I think one of it's primary anti-cancer uses was to protect women on HRT from getting endometrial cancer. The exact way Megace works is not really understood but you could think of it as a hormone suppressor or anti-estrogen therapy.

What concerns me about the drug is that it has the potential to flip a pre-diabetic into diabetes. It given with recurrent or metastatic cancer as as palliative treatment only. I think doctors want to prescribe SOMETHING for patients--they hate to say "there's nothing left to give you."

The literature on Megace list it as having steroid-like effects and that abrupt withdrawal of it can be dangerous due to adrenal suppression. I would feel safer on Arimidex--even though it probably costs a fortune.

JoAnnDK
Posts: 276
Joined: Jun 2011

I get the generic form of this - Anastrozole - and take one per day. It is $27 a month retail (with insurance) and would be $17 every 3 months through my mail in pharmacy.......but I have not yet gotten around to switching it over.

soromer
Posts: 130
Joined: Mar 2011

Dear Carolenk,

I had a reaction similar to what you write here, regarding Megace, when my oncologist prescribed it to me last month following disappointing CT results. My sense originally was that it was being offered as a last resort.

When I confronted my oncologist about it, however, she countered by saying that she has had patients on Megace and nothing else for 10 years. While they still have evidence of disease, they're no worse--and that's definitely a result I could live with. Furthermore, she said that I do have other treatment options (in particular, other chemo agents), but why not try Megace since I am strongly ER and PR+, and it's a relatively easy remedy to tolerate?

So we'll see in December when I have my next CT scan. Meanwhile, I'm also doing a ton of other complementary therapies, so I am not exactly putting all my eggs in this basket, so to speak.

And as I noted in my subject line, I am not dealing with increased appetite at all, despite having switched to a vegan diet.

It behooves us all to acknowledge that while these drugs are indeed dangerous and their mechanisms are often not well-understood, that some of them do work reasonably well for some of us, for some good amount of time. Would that we had something that worked for everyone, every time.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Your tumor seemed to be just like the one I had, mildly estrogen receptor.
I have not been prescribed anything. My tumor was stage 2, grade 3.
I wonder why you are in Arimidex and I am not?
Is there a protocol for this?

My oncology told me that he did not want to put me in any hormone medication for the next 3 years.

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

Fayad

From your photo, you look like you wouldn't benefit from an aromatase inhibitor drug (which is NOT a hormone but an enzyme inhibitor). You don't appear to have much fat on you--fat stores hormones. Arimidex blocks the enzyme "aromatase" the converts testosterone into estrogen.

I suppose you could ask to have your estrogen & testosterone levels checked by blood test. I have seen a 76-year old female who had the testosterone level of a woman 40 years younger--she was still sexually active & getting testosterone thru semen. So I suppose it's worth checking into if you have a male sexual partner.

JoAnnDK
Posts: 276
Joined: Jun 2011

Fayard, my tumor was stage IIIc, Grade3, with one lymph node being dirty. Little invasion, clean margins. I was doing some reading about hormone suppressors for breast cancer. I asked my gyn onc at Hopkins "why do they use hormone suppressants for breast cancer and not for gyn cancers?" She thought that was an interesting question and said she could put me on it and it would be a trial for her.

Fast forward a month to my gyn onc near home. I posed the same question to him and his response was the same. So I am taking it.

I was just using common sense. If the hormone makes a tumor grow, doesn't it make sense to suppress this hormone?

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Did you have hormone testing? I did and results were mostly ER and PR negative. I recall my doc saying that hormone therapy would not benefit me. Just curious.

Mary Ann

JoAnnDK
Posts: 276
Joined: Jun 2011

My tumor was tested and was mildly positive....I found the info in my pathology report

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I am a little confused. I am assuming my production of estrogen ended with the removal of all my reproductive organ, so this inhibits the growth of any type of cancer alike.

I am guessing the suppressant for breast cancer is needed because as long as we have our reproductive organ, and period, we are producing estrogen. right?

JoAnnDK
Posts: 276
Joined: Jun 2011

....does not end even with the removal of one's reproductive organs. I do think that progesterone production stops, but not estrogen.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I did not know that. I have an appointment on November 2 with my onco.
I will ask him about it.

Gracias!

carolenk's picture
carolenk
Posts: 909
Joined: Feb 2011

JoAnn is sort of correct--estrogen production does not stop with the removal of ovaries. Nor does progesterone or testosterone. The "mother of all sex hormones" is pregnenolone. Do a Google search on the pregnenolone pathway and you will see that sex hormones must be pretty important if there are more than one pathway by which they are produced.

I think it makes sense to at least ask for a blood test for hormone levels including free and total testosterone levels. Maybe you can get your family doctor to check your hormone levels.

My oncologist seems to have blinders on regarding hormone therapy...sigh.

Double Whammy's picture
Double Whammy
Posts: 2300
Joined: Jun 2010

As I said, I'm on Arimidex for breast cancer. My med onc did say it's sometimes used for endometrial cancer. It probably wouldn't be prescribed for my endo cancer because it was early stage, low grade, but I'm on it anyway. I have no idea if my endo cancer had been a higher stage/grade if I'd be on it. Friends who did have more aggressive endo cancer (UPSC) are not on it.

From Breastcancer.org:
Aromatase inhibitors stop the production of estrogen in post-menopausal women. Aromatase inhibitors work by blocking the enzyme aromatase, which turns the hormone androgen into small amounts of estrogen in the body. This means that less estrogen is available to stimulate the growth of hormone-receptor-positive breast cancer cells.

My ovaries may be gone, but I do have more than my share of body fat. My bc was ER+. We assume the endo cancer was too. I don't know if it was tested or not - again, it was early stage, low grade.

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