ER and PR + Ladies

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mdg
mdg Member Posts: 3,571
edited June 2014 in Stage I Breast Cancer

Ok, now that I am a few weeks into this whole breast cancer adventure (ha ha - if that's what we should call it....) I just don't know what to believe about foods and ER/PR + breast cancer.  There are so many things out there to read on nutrition to help prevent recurrence, what is reliable information or sources?  I asked the NP for my medical oncologist about nutrition recommendations and studies and not much information was offered.  Has anyone been given reliable information from the physician regarding what to avoid or add to your diet because you are ER/PR+?  Are there reliable websites where I can go for this information?  Are there studies that really provide sound results that I can review from reliable sources?  Any information would be appreciated. 

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2011

    mdg

    there are all sorts of theories out there-- all I can say is that I was one of the healthiest eaters I know-- almost no alcohol, very little junk food, lots of fruits and veggies-- and got bc anyway---

    I did see a nutritionist at the Farber- but don't look to the docs to give you info here-- it is not really there area..... some say soy is ok, others not----

    there is an alternative/health section on the forum, they may have some info.  Alot of us have liked the book "Anti-Cancer" diet..... but I think that many here have searched for studies that definitively prove yes/no on this food or that, but there are not too many.  Perhaps someone else can come along with some better info than me.....

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  • Anniemomofthree
    Anniemomofthree Member Posts: 608
    edited January 2011

    HI - love this new thread - I am E/81%+ and P/91%+ and her2neu+.  I still am struggling to understand what that really means.  I am 43.  Just got my period yesterday.  Start TCH on Monday for round #1.  I am clueless how this all ties to together.  I am a really healthy eater.  Have all the cancer nutrition books...not much on the E/P/Her2.  Would love insight, as well.  Sorry I can not offer any insight!

    Annie 

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  • mdg
    mdg Member Posts: 3,571
    edited January 2011

    I just am shocked at the lack of information and clinical studies available.  I have been an aerobics instructor for years.  I maintain a low body weight.  I cook mostly fresh - we don't eat much of food that is processed.  We hardly eat out.   I eat low fat and don't do fast food - fast food for me is a turkey sub on wheat!  I do drink wine.  I had my son right before I turned 41 and did not breast feed.  I just feel like if I did most of the things right and still got BC it terrifies me that no matter what I do it will come back.  I just want to do all I can to prevent it and no one really knows what that is.  Ugh.  It makes me feel so helpless.   It seems like part of the BC journey is accepting that there are so many things you will ever know the answers to.  I just want to do all the right things.

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    mdg I totally get where you are coming from. I remember my first visit with my onc. She gave me a print out of my treatment with the following on the top of the page:

    Health = Excellent

    Well, except for cancer. I too eat pretty healthy, no fast food etc, not overweight, exercise yadda yadda. Thing is anyone can get any disease or be hit by a bus. We don't know if we will recur or when or even if something else gets us first. We also don't know if we will be one of the ones that never has a recurrence. I am not going to worry about getting hit by a bus but I'll make sure I take the proper precautions when I cross the street. That's all we can do for cancer. Keep that belly fat down to reduce our estrogen levels.

    Ironically my doc was interviewed in this months Chicago Magazine Jan. issue (page 81). Here's part of what she said:

     "Patients want to know what they can do. It used to be you could say, 'There really isn't anything.' Now you can say, 'If you control weight after diagnosis of breast cancer, you'll be less likely to die.'"

    You can read this issue online here by clicking on the cover. You will get a pop up that allows you to turn pages. Free flash plug-in required:
    http://www.zinio.com/browse/publications/?productId=500328597&offer=500157047&bd=1&pss=1

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  • Anniemomofthree
    Anniemomofthree Member Posts: 608
    edited January 2011

    Lago  - I have been reading and really enjoying (sounds weird) all your posts.  You are always so positive and informative.  Do you know of a good place on this site for E+/P+ and Her2+?  I have been trying to find "my sisters" and the closest i have found is the TCH, which has been great.  This may be the best site.  I was reading last night (Dr. Susan Love) and was fascinated when I read that most DCIS is Her2+.  If that is the case, would it not be the case that you want to quckly get rid of the tissue and any other tissue (like a BMX) due to her2?  I began with a dx of DCIS and on the table, the path gave me a new dx of IDC.  

    I also am trying to understand what the role of menopause plays into the E+/P+...especially for me, since I am so hormonely sensitive (by the numbers, not my crabbiness :)  Onco said average age of menopause is 51.

    What happens to us after chemo when we are still pre-menopausal?  Do I avoid all the high hormone foods?  Or, since I have a BMX, and theoretically by breast tissues is gone, is it irrelevant?  

    So many questions... 

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    I didn't think that DCIS got HER2 stats. First I've heard of it.

    When you grow up eating soy as some Asian countries do, it CAN be a good thing against cancer. BUT, you can't start eating soy as an adult as your body won't process it properly and it can lead to bc due to the estrogen levels.

    Body fat = estrogen, is all I know. Okay, now give me the magic bullet to lose weight!! I eat very well, stopped drinking alcohol completely over 2 years ago after diagnosis. My physical limitations stop me from exercising daily but I am very physically strong. I have a GF that works out every day but doesn't have the body strength that I have. I don't get that.

    Anyway, there is nothing except what's already been mentioned. Keepy your body weight down and avoid estrogen foods. I know some ladies stop estrogen make-up and creams, but that's too much for me to worry about. I'm more worried about that bus!

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    Annie since you are hormone positive your onc will probably recommend some kind of hormone surpression… tamoxefin if you still haven't gone through menopause or an aromatase inhibitor. I have read that some HER2+ gals don't respond to tamoxfin and they think it might be because most of us are not highly ER+/PR+.

    I'm only 30% ER+ and 5% PR+. I will be going on a aromatase inhibitor because I was perimenopausal and chemo put me in chemopause. I'm going to be 50 in a month. My onc doesn't feel my periods are coming back but probably will monitor my hormone levels to be sure.

    When you are premenopausal your estrogen is produces from your ovaries. After menopause it's comes from fat, and this is why we tend to gain more in the middle after menopause. (Note this is a simplistic explaination.)

    ----------------------------------------------

    You BS would not have recommended a lumpectomy if it weren't appropriate. The survival rate for mastectomy and lumpectomy are the same. The goal is to get rid of all the cancer not the healthy tissue.

    I didn't have that option because my tumor was 5.5cm and I was only a A-B cup.

    ----------------------------------------------------

    I think you have found the most active threads but here are few more:

    ER+,PR+, HER@+++Prememo Gals
    http://community.breastcancer.org/forum/5/topic/761169

    Triple Positivers/Chemo regimens and experiences
    http://community.breastcancer.org/forum/6/topic/75575

    * Remember that only 25% of breast cancers are HER2+. With in that group more women are ER-/PR- so we are in a minority being triple positive.This is why you see few threads specific to our diagnosis of triple postive… but there are plenty of us unfortunately.

    ----------------------------------

    You are the 2nd person to compliment me in less than 24 hours about my posts. Thank you. At times I do think there are people that are "stalking" me ;-) 

    I'm glad I can help but remember I am no doctor. Always check with your MD. As far as being positive, I'm good at that online. In the anolog world I'm morose (kidding). As  you can see I also have a sick sense of humor that doesn't always go over but it's the only way I can survive this cancer diagnosis.

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    Barbe I too read that most DCIS is Her2+ and fast growing but it might have also been from Dr. Love's site. I did spot it here as well under the discussion section:

    http://cebp.aacrjournals.org/content/11/6/587.full
    "but that HER-2/neu overexpression is more common in DCIS than in invasive cancer"

    Beesie seems to have lots of knowlege on DCIS because that is her diagnosis. I haven't done a ton of research on this.

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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    But they don't even check the HER2 pathology in DCIS ladies! Do they just assume they're HER2+?

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  • Anniemomofthree
    Anniemomofthree Member Posts: 608
    edited January 2011

    Thanks for the insight.  I am 43 with regular periods.  I have a family hx with a mom/sis, hence the BMX.  I am going with TCH, not talk of tamoxefin.  Yet.  I am thin with a low BMI.  At this point, I feel like my course is set for the next year for chemo and hormones with the herceptin.  Only thing left is to understand post one year...and the nutrition /exercise angle.  I have great nutrition and my exercise is moderate - though I do have an extremely busy life running with three kids under 12.  

    And, yes, my DCIS was not given a HER2 status.  This was the first I read of "typically DCIS is Her2 positive".  I was very surprised...

    Thanks!!!

    Annie 

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    Annie if I had one more doctor tell me how "thin" I was when the first several months I was about to deck them. Granted I did gain about 8-9 so far on chemo but I know I'll lose it once I'm off. My exercise level is down do to feeling muscle soreness the last few rounds.

    I have read that premenapausal women who weight less than 127lbs have a higher risk of getting breast cancer… and we know that it's just the opposite for post menopausal women. Most of my life I have been 121 lbs or less till about 2006. When I started this journey I was 128 lbs which I felt was a good weight for me at 5'6", age 49, with a smaller type frame. You can see how annoyed I was when they all said I was so thin. Right now I'm the heaviest I've ever been but still not considered overweight by most.

    My point here is although we may be thin that doesn't get us out of hormone suppression.

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  • lago
    lago Member Posts: 17,186
    edited January 2011
    Barb I doubt they just assume. If you look at the article I posted they should think about testing. It seems that those that are HER2+ are more likely to get IDC. There is a lot of confusion on DCIS and how to treat but like I said I really don't know much about it.
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  • Anniemomofthree
    Anniemomofthree Member Posts: 608
    edited January 2011

    HI Lago - I totally agree on the thin thing!  My question to me oncologist was should i have some sort of hormone suppression post herceptin.  To that he answered that "we do not know what to do with your scenario".  Ughh!!!

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    "we do not know what to do with your scenario"

    I would think s/he would give you a bit more explanation regarding why they don't know what to do. I would also get a 2nd opinion especially since they "don't know what to do." Geez are they leaving the decision up to you or what?

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  • Anniemomofthree
    Anniemomofthree Member Posts: 608
    edited January 2011
    The good news is that I have one year to figure this all out...always a bright side!  Smile
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  • jo1955
    jo1955 Member Posts: 8,543
    edited January 2011

    In case anyone is wondering about your ER+/PR+ numbers I asked my onc what it means.  I was 100% on both.  He told me the higher the number the better for prognosis.  So what that tells me is I have an excellent prognosis.  Don't know information on HER2 positive numbers as it did not apply to me.  Just thought I would pass that on. 

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  • momand2kids
    momand2kids Member Posts: 1,508
    edited January 2011

    Annie

    one potential treatment for you might be lupron + tamoxifen or an AI.... lupron shuts down your ovaries (thus no estrogen-or very little) and tamox also has an effect on estrogen..... chemo can put you into menopause, but for some, their periods return after the treatment ends....

    This is something you do want to start to talk to your onc or a couple of oncs about--as it relates to you and your dx.  There are some oncs (mine was one) who felt the hormonal therapy was THE most important part of the treatment.  There can be side effects to those little pills--tamoxifen, arimidex, femara or aromasin..... there are other threads here under the hormonal therapy section where you can get some very specific information.  some people choose not to take anything at all.  I have been on lupron and femara for 18 months and am seriously considering going off both in the summer...... not because of too, too many side effects but because I really want to try to restore my body to its original self!!!!  

     hang in there- it gets better--I promise. 

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  • msbehavin
    msbehavin Member Posts: 30
    edited January 2011
    I talked with a nutritionist and her advice, eat 6 servings per day of vegetables, half should be raw, and 6 servings of fruit every day, half also raw. Get into the habit of steaming some asparagus in the microwave for lunch, putting some veggies in your scrambled eggs for breakfast, etc,, also,, NEVER microwave anything with plastic on it or below it,, so only glass and wash wash wash those veggies and fruit; and if you can afford it, go organic. Think of red meat as if it were a condiment and not the main meal of the day and fish three times a week. Chicken or turkey the rest of the time. Remember that almost every house in the US comes with xenoestrogens which are really bad for us. (Xenoestrogens are industrially made and widely used in the last decades compounds such as Xenoestrogens are industrially made and widely used in the last decades compounds such as PCB, BPA and Phthalates, that have estrogenic effects to the living organisms although they differ chemically from the naturally occurring estrogenic substances internally produced by their endocrine system) Everything from skin creams, to pesticides, to carpet has some in it and you have to do something to offset it. If you get an opportunity to see a documentary video called FOOD, Inc, that might give you some good advice on how to shop for groceries, not pretty, but necessary for us to understand why cancer is happening to us and to our children, and possibly our grandchildren. God Bless.
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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    Msbehavin, sounds like the Canadian Food Guide. 1/4 plate for protein, 3/4 for veggies with fruits as snacks and desert. In a perfect world.....

    One big thing I've learned and done for the past 15 or so years, is to shop in the OUTSIDE aisles of the grocery store only. That is where the fresh stuff is.

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  • lago
    lago Member Posts: 17,186
    edited January 2011
    Barbe, that would never work in our grocery store. First isle is produce (good) but last isle is cheese and frozen stuff like pizza ;-)
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  • Marple
    Marple Member Posts: 19,143
    edited January 2011
    Lago it's the same arrangement at my grocery store AND ice cream.Laughing 
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  • barbe1958
    barbe1958 Member Posts: 19,757
    edited January 2011

    Huh, you're right!!! I can recall that, the stores got smart! But that aisle usually has milk doesn't it? And yoghurt and cheese....

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  • lago
    lago Member Posts: 17,186
    edited January 2011

    Yogurt and milk are on the back wall so I guess that counts. Cheese is in the last isle with all the butter followed by the frozen meals like pizza.

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  • saturn
    saturn Member Posts: 139
    edited January 2011

    I know we should be avoiding regular milk and dairy, but is organic milk okay or should it also be in limited quantities?  I finally broke down and bought some organic milk and made my iced latte... it used to be my daily (often 2x a day) treat.  I haven't had one in a month and a half and it sure tastes good today! 

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