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Single Hormone Receptor Positive -> ER+/PR-/HER2-

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Comments

  • lillyishere
    lillyishere Member Posts: 789
    edited October 2020

    Hi Ladies, I just want to share some info regarding diet. I had a zoom meeting with a nurse who is trained as an integrative consultant. She reinforced on what most of us know: no red meat, no alcohol, no white flour and rice, and no milk but OK yogurt and cheese - thank God! :). Reinforcing what my grandma told me when I was a kid, to stay away from white foods (white sugar, flour, rice, and white salt).

    Meditation is very important she said. Life without stress - yeah, once we have this diagnose, isn't stress part of the equation?

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 54
    edited October 2020

    Hi LillyisHere - sorry to show my ignorance; but; are the diet recommendations (no red meat, alcohol, etc.) to help eliminate side effects; e.g., joint pain and stiffness, or are they to decrease estrogen? Sorry if I’ve missed this in a previous post and thx for some brief background

  • lillyishere
    lillyishere Member Posts: 789
    edited October 2020

    Hi Sarah, basically it is recommended as an anti-cancer diet. I am also reading books on changing lifestyles to fight this disease. Nothing new here but an anti-cancer diet, exercise, anti-stress, and being happy is very important for the body to fight the disease. Honestly, in my case, diet and exercise haven't been a problem but stress is difficult to keep it under control especially having young kids.

    Here is a link: https://www.mdanderson.org/prevention-screening/manage-your-risk/diet.html

  • beesie.is.out-of-office
    beesie.is.out-of-office Member Posts: 1,435
    edited October 2020

    The diet suggested on the MD Anderson site is an anti-cancer diet aimed at overall health and weight control. It's a pretty common sense diet, and is not overly prohibitive. I'm happy to use the MD Anderson suggestions as a guide but I don't believe in the need to completely prohibit foods, nor do I think any research supports such a strict diet. So going beyond what is suggested by MD Anderson (and various other cancer sites) is personal choice rather than medically recommended.

    I agree that getting stress under control is important, and often difficult. What I don't want to do for myself is add stress, which is what would happen if I worried about keeping myself on an overly strict diet that took away foods I enjoy and had me watching everything I eat.

    This is from the MDAnderson site:

    Our experts recommend following the New American Plate guidelines developed by the American Institute for Cancer Research.

    You can take the following steps to maintain a healthy diet, manage your weight and reduce your risk of cancer:

    • Eat a plant-based diet. Eating a healthy diet can help you stay lean. Fill 2/3 of your plate with vegetables, whole grains and fruit. Fill the remaining 1/3 or less with lean animal protein like fish and chicken.
    • Limit red meat. Red meat contains substances that have been linked to colorectal cancer. Pork, beef, lamb, deer and buffalo are all red meat. Aim to eat no more than 18 ounces of cooked red meat per week.
    • Choose whole grains over refined grains. Whole grains are high in fiber, which can help you stay lean and lower your cancer risk.
    • Avoid processed meat. Hotdogs, sausage, lunch meats and other processed meats contain cancer-causing substances, and eating these meats can damage your DNA, raising your colon cancer risks.
    • Choose plant-based proteins. You can make healthy swaps that will add more plants to your diet without reducing your protein intake.
    • Avoid alcohol. Research shows that drinking even a small amount of alcohol increases your chances of developing oral, breast and liver cancers. The National Cancer Institute recommends that women have no more than one drink per day and men have no more than two drinks per day.


  • lillyishere
    lillyishere Member Posts: 789
    edited October 2020

    Beesie, I agree with you. Honestly, I lived in the south of Europe and I do have a Mediterranean and organic diet and I like salty foods but not sweets. Always healthy, yogi, and never any weight issues and here I am. It is not working for us who have a similar lifestyle and are members of this community. I really want to change the diet and start eating junk food and hopefully, I will beat cancer :). I do blame the stress. I do believe stressful situations don't help. I argue with my kids to get enough sleep :). I'm reading a book called: Anti-cancer living.

  • sarahmaude
    sarahmaude Member Posts: 343
    edited April 2022

    This thread is very informative! I've been following rabbit trails of studies regarding ER+/PR-/HER2- tumors, and I'm actually kind of amazed at how much is undiscovered. With a Grade 3 tumor, and now and OncoTypeDX score of 49, I'm certain to be a Luminal B case. Pretty sure this site's definition of Luminal B is incorrect based on my reading. It doesn't have to be HER2+.

    I've had to self discover that the PR- is not the "garden variety" HR Positive case. My BSO was almost chirpy about my highly estrogen sensitive (89%) tumor with a mitotic rate of 2. Of course it was Grade 3, and path report also said fast growing. Seems to be some lack of training even in the BC professional community about this minority tumor type.

    I was encouraged to see that Beesie found some information that hormone blockers are good mitigation for us. I'd found one recently that implied the opposite, but maybe it was for weakly ER+ cases. I have a lot of questions still, I want to read through all the posts above.

    One question, has anyone had success in finding a way to further characterize their tumor? I think OncoType Dx is a great addition to our decision tools, but there really isn't much more information regarding tumor genomic details. I assume that we don't get testing in the clinical population unless there is an action possible from the results.

    And, another oddball question, how on earth can I have such a large aggressive tumor that showed no LVI or lymph node invasion. It just seems so strange that people have 1 cm tumors that are in nodes, and others like me have plum size tumors that stay in place?

  • sarahmaude
    sarahmaude Member Posts: 343
    edited April 2022

    Back from doctor today. I feel so special having this cancer type. OncoType DX confirmed that I’m strongly ER+, and negative for PR and HER2. MO also confirmed I’m Luminal B.

    She said chemo will bring my risk of recurrence into the teens. Prolia will also slightly reduce chance of bone mets. Then I guess that lifestyle changes and luck are what is left. Oh, and radiation. Still have that on my dance card. I think that is more about getting to the baseline risk level though, as it’s assumed for lumpectomy patients.

    I’m very interested to hear any more research treatments on cases of high grade ER+ PR- HER2- Based on these tumors sizes and lack of node involvement or lymphovascular invasion, it’s likely to be something distinct that just isn’t getting much attention. Reading the history here, there are many high RS results on OncoType DX. These are in the very far right tail of the distribution. Almost like triple negative.

    I hope some of you are still around to discuss and are paying attention to anything new regarding this type. I also hope you are living well and moving on.

  • lillyishere
    lillyishere Member Posts: 789
    edited April 2022

    sarahmaude, I had 3mm BC that has spread to the nodes. How can it be not aggressive? Grade 1 but it has left the breast. Highly positive too. I'm only on Exemestane and did not have chemo or radiation. I hope MO knows what he is doing.

  • katg
    katg Member Posts: 255
    edited April 2022

    Thank you for posting. This one showed up in my active thread so i clicked. I am not one of the types listed, but i am Er+/PR- and tumor out became HER2-+. I also had a big tumor, 5.4 with no lymph or vascular invasion. Really? But i have aggressive HER2 and BRCA2 to deal with going forward. I love the couple of pages of posts i have read and hope to read, visit and use the suggestions offered for healthy living.

    I still need to find my OncoType DX. I cannot find it in my records.....

  • sarahmaude
    sarahmaude Member Posts: 343
    edited April 2022

    Katg, from my reading, the loss of PR in HR+ BC for both HER2 + and - is a distinct tumor characteristic. I found one paper questioning whether the loss of PR happened when the tumor was created or along the way. It does seem to be something that is of interest. I do know treatment for HER2 is favorable.

  • murfy
    murfy Member Posts: 259
    edited April 2022

    Katg, the Oncotype is usually not performed if one is Her2+. The Oncotype is used to determine IF chemotherapy is warranted and therapy is a given for those who are Her2+. There are several theories on why our primary tumor is Pr-; for example, abnormal growth factors such as Her2 may cause Pr gene suppression, or there may be a mutation in the Pr gene (these may be responsible for low Oncotype RS), or there may be a loss-of-function of ER (which leads to loss of Pr gene expression. This latter hypothesis simulates a 'triple-negative' situation and may be why anti-estrogen therapy is less effective in some of us and also why some of us have such a high Oncotype RS.

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 54
    edited April 2022

    I’ll chime in …. I also had a strong Er+, PR- & HER2- tumor(s), with no lymph node involvement. Grade 3, high oncotype, a lumpectomy, chemo (Cytoxan & Taxotere), and radiation. I’ve been on Letrozole for 2 years. I admit, the Oncotype score and the single hormone receptor status are always lurking in the back of my mind.
    FYI - There was another thread that may be of interest - titled “High Oncotype Scores” (or something similar). With the new format, if I can find my “favorites,” I’ll double check the thread title.

  • believe60
    believe60 Member Posts: 86
    edited May 2022

    This thread has been so incredibly helpful to me, thank you all so much. I am realizing how little I knew as I went through the diagnosis and treatment process. I should have asked more questions instead of being a deer in the headlights! Upon biopsy I had been told it was “just” DCIS, no worries, it’s the “good” cancer, no rush to surgery. More than 2 months later the surgical pathology showed three 1 cm grade 3 tumors, along with 26 flecks of grade 3 cells, and a micromet to 1 of 4 sentinel nodes. ER+ PR- HER2-. (99% ER+). They told me the PR status wasn’t significant, so I never thought twice about it. Needless to say, oncotype came back high at 34. So I went through AC and taxol chemo, which I finished in January 2021. I was not referred for radiation as they said in cases like mine it didn’t affect outcome (whatever that may mean). Now I’m on arimidex for 10 years. I am post-menopausal at 61. Plus I get an infusion of zoledronic acid every 6 months. I am transferring to another doctor as I need someone who will talk to me and not at me. Were those 26 flecks somehow significant? I haven’t been able to find anyone else who had that sort of thing in their pathology. I guess whether or not I should have had radiation is a moot point now. I did have a double mastectomy.

    Part of me says don’t even look back, just embrace every day as I feel great these days. And I have my 4 beautiful children and 3 grandchildren nearby. With another on the way! Really, I am sograteful for all these things. But sometimes it gnaws at me that I don’t fully understand my diagnosis and prognosis. Especially on the days a new ache or pain makes me anxious! Not sure why I can’t quite let go. There’s nothing that can really change now, so just eating well, exercising and enjoying life. But thank you all for a place to vent. I really appreciate this discussion board.

  • murfy
    murfy Member Posts: 259
    edited May 2022

    Believe, it sounds like your docs are treating your situation aggressively and per protocol for your oncotype and your ER+/PR- status. I'm guessing that maybe 1 or more of the 3 tumors were IDCs and the flecks were DCISs. At least, my 'flecks' turned out to be DCISs.

    Best of luck with the rest of your treatment! You're so lucky to have a big family nearby!

  • sarahmaude
    sarahmaude Member Posts: 343
    edited May 2022

    believe. I completely understand what you mean when you say you want to more about your diagnosis and prognosis. I think I’m settling on knowing that more statistics on populations of people who are not me isn’t going to help. I would like to know more about my tumor. Basic IHC and my OncoType of 49 leave me wondering too much.

    Ultimately. I’m getting the nationally recommended treatment for my stage and grade. I’ve already lost 18 lbs and plan to lose 12 more after chemo. After that,

    I’m committed to being active and strong through movement and sensible eating habits.
    I will work to enjoy life with family, friends, my career, and hobbies I love.
    I’ll engage proactively with my doctors to monitor and manage everything I can.
    After that, I’m going to remind myself to accept what I cannot change, and just repeat lines 1-3 above.

    And anything interesting I fin about this cancer type I’ll share here.

    I agree with murfy, I think your doctor treated you aggressively. But that’s finding one who you can talk to is important.

  • lillyishere
    lillyishere Member Posts: 789
    edited May 2022

    I think I am not treated aggressively. I had small cancer in the breast, but 2 out of 5 nodes were positive as someone said, the horse has left the barn. It was my decision for BMX and I asked for chemo and if radiation was needed and I was told NO.

  • sarahmaude
    sarahmaude Member Posts: 343
    edited May 2022

    lillyishere. BC is such a puzzle to me. It baffles me that you could have a <1 cm tumor that went to 2 nodes. It sounds as if they didn’t try to oncotype your tumor. I would have thought the positive nodes would have led to chemo and radiation.

    Have you sought a second opinion? I do know that aromitase inhibitors are much more effective than tamoxifen for ER+/Pr- HER2- , so that is certainly in your favor.

  • lillyishere
    lillyishere Member Posts: 789
    edited June 2022

    sarahmaude, I had the same thoughts as you. Since the tumor was only 3 mm, it wasn't enough to check the Oncotype. I had 4 different opinions. I went to 2 large cancer centers. I assume the new guideline says no chemo and no radiation in my case. I understand no chemo because ILC doesn't respond well however, radiation? Guidelines keep changing and I will feel terrible if radiation will be as required in the future guidelines.

  • roareus
    roareus Member Posts: 68

    I was treated for stage IIA ++- breast cancer in 2013, ten years ago. I just learned this week that there is another tumores in the same breast. This time it's estrogen positive and progesterone negative, Her negative. Just trying to get some information on it. Looking for a lifeline. Word of encouragement...

  • cure-ious
    cure-ious Member Posts: 2,926

    ER+PR- and Her2- cancers do not respond as well to endocrine monotherapy as PR-positive cancers. One reason is that ER activity turns on the PR gene, so when PR is low it can mean that ER signaling is relatively weak and won't respond very long to anti-estrogens. However, in some of these tumors the ER activity is actually fine, and the PR gene just got turned off by other means. Moreover, PR-negative cancers respond quite well to CDK4,6 inhibitors, so the PR status does not matter as much these days. My cancer is PR-negative (extensive bone mets) and endocrine therapy is still working at 8.5 years.

  • roareus
    roareus Member Posts: 68

    Thank you for the information. Do you know if they have a way of figuring out whether or not estrogen signaling is weak? Thank you again.

  • threetree
    threetree Member Posts: 1,833

    Cure-ious - Thanks for posting that info. It's all very interesting and informative.

  • murfy
    murfy Member Posts: 259

    Roareus, typically, if estrogen-signalling is weak or absent, one's Oncotype would be higher than if estrogen-signalling is working. For example, my tumor showed 100%ER, but my Oncotype score was similar to that of a triple-negative. My ERs aren't working and that is likely causing the loss of my PR, which are dependent on functioning ER. However, many on this site also have been PR- and had low Oncotypes, suggesting functioning ER. Your doc will likely prescribe an Oncotype to check your largest tumor and determine if treatment is warranted. I hope all the additional info you will getting gives you peace of mind.

  • roareus
    roareus Member Posts: 68

    @murfy Thank you for the information.

  • cure-ious
    cure-ious Member Posts: 2,926
    edited February 1

    murfy, Thanks much, did not know that, they weren't doing oncotypes when I was diagnosed!

  • luck2468
    luck2468 Member Posts: 13

  • walsr014
    walsr014 Member Posts: 1

    Hi ladies,

    I’m 39 and joining the club. My oncotype is 26 and I’ll have my second round of chemo soon. I have been losing a lot of sleep over being diagnosed prg negative or low depending on pathology. I’m glad to know that so many of you are doing well. Is it true that most prg negative cases are in the clear after 5 years?

  • moderators
    moderators Posts: 8,740

    @walsr014 - Welcome to our community! We’re sorry for the reason that brought you here, but glad you found us and decided to reach out. Hope you get responses from other members soon. Let us know if you need anything from us, we’re here for you!

    The Mods

  • l8blmr
    l8blmr Member Posts: 144

    Hi Walsr014, Pr negative here, just celebrated 7 years! I didn't like the chemo, didn't like the AI, but found one that works for me. Oncotype was 24. My chemo was TC x 4 - not fun, but doable. It took a couple of years, but I found an AI that works for me. Changed a few diet things: no red meat, green tea every day, tumeric in anything, lots of cruciferous vegetables-cabbage, radishes, broccoli, cauliflower, brussel sprouts, no liquor…still like my glass of wine. Hang in there - you'll get through chemo and get to the other side soon. Big hugs and all the best for you in the next couple of months.

  • shelle1
    shelle1 Member Posts: 2
    edited December 23

    Glad to have found this thread. I am 58 yo.

    Feb 2024 Diagnosed

    Mar 2024 Bil Mastectomy (er+ 20%, pr-, her2-) 2mm (and DCIS) Not in lymph nodes

    Jul 2024 Signatera Test (neg)

    Nov 2024 Signatera Test (+ 0.07) Started Raloxafene

    They scanned everything and NO tumors. Feeling like this will be my life. Blood Tests, scans, and new treatments. I feel like I am at the beginning and that the prognosis is glim. Working on choosing things that make me happy and enjoying my time.

    I did change my diet ´no sugar, alcohol, bread, red meat, preservatives.

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