What to expect if ER+ PR- Her2- and postmenopausal?

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otter
otter Member Posts: 6,099
What to expect if ER+ PR- Her2- and postmenopausal?
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  • otter
    otter Member Posts: 6,099
    edited February 2008

    Hey, does anybody out there have a tumor like mine?  ER+ PR- Her2-

    At my "surgery planning session" last week, I got those details from my onco surgeon.  She said the results were "kind of good" (better, I suppose, if it had been ER+PR+Her2-).  I asked her what she thought my chances would be for needing chemo or rads after my mastectomy.  She said rads were unlikely, unless I ended up with 4+ positive nodes or a much larger tumor; but I would probably be taking an estrogen blocker/inhibitor.  She doesn't make that decision--there will be a medical oncologist coming along in a few weeks, I guess.

    I know tamoxifen is used for ER+PR+ tumors, and AI's are being used in postmenopausal women with ER+PR+ tumors.  But apparently the ER+PR- tumors are different--I've read that they don't respond as well (if at all) to tamoxifen and they tend to be bigger and more aggressive than ER+PR+ tumors. (That was the not-so-good news.)

    Is anybody else dealing with this same combination?  What are you taking?  How is it working for you (efficacy and se-wise)?

    otter

    (planning ahead for the inevitable) 

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited March 2008



    Hi Otter,



    I personally do not have the negative PR receptor, but there are women here who do and probably they'll stroll by and help.



    Since Tamoxifen is felt not so good when one is ER+ and PR-, that leaves the aromatase inhibitors (Arimidex, Aromasin and Letrozole) and the other hormonal, Falsodex.



    But, you have to be post menopausal, or if not, typically removal of the ovaries are recommended or suppression of the ovaries with Lupron or the like.



    So, I guess you could start thinking about which of those options you may desire too.



    Lastly, the new NCCN guidelines (National Consortium of Cancer Networks) has changed their tone on radiation in the 1 to 3 node+ patient as of 2008. The new guidelines urge patients to "strongly consider" the option of radiation rather than the old wordage of should be considered as an option. Just so you're aware, as radiation effectively kills cancer cells which remain after chemotherapy.



    All the best to you. Others should be along soon too.

    Tender

  • sunshinegirl
    sunshinegirl Member Posts: 28
    edited February 2008

    I have the same type of tumor as you. My tumor is er+ pr- her2-. I had my lumpectomy almost 1 year ago on Feb 6/07. I am postmenopausal. My doctor say it doesn't make much difference if I am pr- as long as I am er+ which is good. I am on arimidex for 5 years. I had lumpectomy and re-excision(close margins) with 5 weeks of radiation. My tumor is also 2 cm. So far I feel great with no side effects from arimidex. I read arimidex works much better than tamoxifen for tumors that are er+ pr-. As far as er+ pr- being more aggressive than er+ pr+ tumors, I've read they are more aggressive if they have a over expression of Her2 which ours do not.

  • IllinoisNancy
    IllinoisNancy Member Posts: 722
    edited November 2008

    Hi,

    I am a er+, pr-, her2- gal and my surgeon, oncologist and radiologist all said that my tumor is not more aggressive than any other.  They said as long as I'm ER+ that I should take the hormone pills for 5-7 years.  I am on Tamoxifen now but will change to Armidex.  I didn't do chemo because my oncotype score was only 9.  I had a lumpectomy and radiation.  Good luck with your treatments.

  • Diana_B
    Diana_B Member Posts: 287
    edited February 2008

    Hi Otter,



    I'm ER+ PR- Her2- as well.



    I was diagnosed with a regional recurrence this past November. I had been on tamoxifen since February, when my radiation ended.



    They've since switched me to zoladex and an AI, which is shrinking the tumour.



    I had heard that also about tamoxifen and PR- tumours, and it seems it was true in my case.



    The AIs are not too bad so far. Some bone pain, but not intolerable. Quite a lot of fatigue, but it seems to be getting better. Hot flashes of course.



    I hope that's of some use to you,

    Darya

  • sjoc
    sjoc Member Posts: 133
    edited February 2008

    I'm ER+/PR-/HER2- also.  My onc told me that he wished I were PR+ also.  I read that tamox isn't as effective for PR- as it is for PR+.  I'm premenopausal though, so I am on tamox.  My onc. said he will probably keep me on tamox for 2 years and then another 2-5 years on an AI.  As soon as my blood tests show I am postmen., I will be swithched to an AI.  I did have some SE's from tamox - hot flashes, depression and severe night time leg cramps.  I was hoping that since I was havaing SE's, that meant at least I was metabolizing tamox properly.  At my last visit with my onc. I told him how much I hated tamox, and he sadi I should love it because it is keeping cancer away.  Hope he's right!! - Sandy

  • Gitane
    Gitane Member Posts: 1,885
    edited March 2008

    Otter and Others,



    I have found two sources of information about ER+ PgR- Her2 - breast cancer.



    • The first is a 2007 ASCO abstract. Go to asco.org and look at the 2007 ASCO Annual Meeting abstracts. Abstract No. 538. What you want to look at are the presentation slides. Look under the abstract at #1 and click on the "slides" icon.



    Title of Abstract:

    Central assessment of ER, PgR and HER2 in BIG 1-98 evaluating letrozole (L) compared to tamoxifen (T) as initial adjuvant endocrine therapy for postmenopausal women with hormone receptor-positive breast cancer.

    B. B. Rasmussen 
Abstract - No. 538    2007 ASCO Annual Meeting - Category: Breast Cancer--Local-Regional and Adjuvant Therapy



    • The second is a study of gene expression profiles. This was also presented at ASCO in 2007 but I found it on Medscape, not the ASCO site. They found that ER+ PgR- tumors were a mixture of three different subtypes. This was based on the DNA copy number profiles of only 89 tumors so it's very preliminary research at this point. In analysis of patients treated with tamox or no adjuvant treatment, the Subtype 3 breast cancers defined by gene expression profiling tended to have poor outcome as compared to Subtypes 1 and 2. These differences are not observed using IHC to assign ER and PR.



    * Subtype 1 tumors manifesting the ( + + ) signature

    * Subtype 2 tumors manifesting the ( - - ) signature

    * Subtype 3 tumors not associated with either, but sharing patterns with both



    Title of Research Article:

    Gene expression profiles of ER+/PR-breast cancer are associated with genomic instability and Akt/mTOR signaling, and predict poor patient outcome better than clinically assigned PR status.



    Authors:

    

Creighton CJ, Osborne CK, van de Vijver M, Foekens JA, Wang Y, Zhang Y, Klijn JGM, Horlings HM, Hilsenbeck SG, Lee AV, Schiff R. Baylor College of Medicine, Houston, TX; Netherlands Cancer Institute, Amsterdam, Netherlands; Erasmus MC-Daniel den Hoed, Rotterdam, Netherlands; Veridex LLC, a Johnson Johnson Company, San Diego, CA



    Since it is early days in this kind of research and since we can't know at this point which subtype we have this is not much to go on, is it?







  • Girl53
    Girl53 Member Posts: 225
    edited October 2015

    All: Seems like no activity on this thread for a while, but my tumor fits this profile, and I'm curious about effectiveness of Tamoxifen vs. AI. Is latest info that Tamox not effective at all for PR- breast cancers, or slightly less effective than an AI?

    My tumor was very small -- 2mm -- and low grade. Will have SNB with upcoming CPM, and I hope no positive nodes. Have read a lot about AIs, and because I have some osteoarthritis, they scare me. A doc I saw yesterday said I could take Tamoxifen instead, but I don't know whether he'd noticed my PR- status.

    Hoping to know by mid-week when my surgery scheduled. Will see new onc this coming Monday. What a journey. I am scared. So glad to be in good company, though.

  • MsPharoah
    MsPharoah Member Posts: 1,034
    edited October 2015

    Girl53, like many breast cancer subtypes, there is little clear information about ER+/PR-/HER2- tumors. I was well into my treatment before my oncologist and I had time to talk about this. Her take was that this subtype was on a continuum...not as favorable as ER+/PR+ but she was emphatic that they have no research that provides a different protocol for this subtype. She told me to be happy that I was highly ER positive and that was just as beneficial as being slightly positive for both ER and PR. I have yet to find any research comparing patients with different levels of ER/PR positivity, so I am filing that comment away as a patronizing one. What I do know is that a low PR score will affect your oncotype result because that is one of the factors that determine your score.
    I also have read that Tam is not as effective with this subtype....since I am post meno, that was not an issue, but for the gals who are pre-meno, I would recommend that you seek out multiple opinions before you decide to suppress your ovaries and do AI instead of Tam.
    Good luck, this is the hard part....getting information and making decisions.
    MsP
  • PickleJar
    PickleJar Member Posts: 4
    edited February 2017

    Long time no post on this thread but I am looking for others with this type ER+ PR- Her2-

    My right breast is like this, ER at 20%

    But my left breast is triple negative

    I am trying to find out how I can get my hormone receptors retested - just to be sure. Has anyone done this?

    Because for me, the ER 20%... Is that number subjective, is it the pathologists interpretation? I would hate to take Tamoxifen if it's not going to do anything... :-/

    I called MDAnderson but they said a Pathology 2nd Opinion would not be testing the receptors.

  • bravepoint
    bravepoint Member Posts: 404
    edited February 2017

    I'm also ER+, PR- HER2-. My ER is only 3% so a very weak positive. My MO told me that he considers anything over 1% positive. I'm still going thru chemo, 6 more weeks of Taxol to go. Reading some of the side effects of tamoxifen, I'm wondering if the risk of those out weighs any benefits I might get from it. We'll be chatting about this at my next appointment as he wants me to start before rads begin 4/18/27.

    Anyone else have a weak ER+?

  • sfierri
    sfierri Member Posts: 2
    edited April 2017

    I am ER+, PR-, HER2- and post-menopausal. I'm just starting to read about it. My oncologist and surgeon didn't really talk about it.

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2017

    Mine was 95% er and less than 1% pr, her2-. I was already postmenopausal so went to AI drugs. I am 5.5 years out no recurrence. The problem we face is the majority of the people that are hormone positive are both er and pr positive and tamoxifen is an effective drug for this population. But the number of people er+ and pr- is significantly less and even less so are people er- and pr +. So statistical analysis is less valuable for us. The data just isn't updated and is based on tamoxifen use only.

    Remember that oncologist are focused on cancer treatment and throwing the kitchen sink at a problem. My advice is to look carefully at your pathology consult your doctor and make a decision with everything considered.

    Look at side effects and balance out a treatment approach. In some case going full throttle heavy chemo followed by hormone therapy might keep the cancer at bay in other cases it might not be that clear. Ask yourself what do you think will help you.

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2017

    I have been criticized on this board for going with your gut instinct. But I really truly believe that if you make a treatment decision with your mind and instinct in full agreement chances are good it will be the right decision.

  • Janebiggie
    Janebiggie Member Posts: 4
    edited October 2017

    chiming in this discussion. According to pathology from surgery mass I am ER+PR+HER- ; but Oncotype report said ER+PR-HER- (PR is just below 0).

    I am Pre-menopause. Haven't decided on treatment. Saw one MO who recommend "standard" ACT plus radiation and Tam. Will see another MO tomorrow.

  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    Jumping in because I have IDC 99%ER+ 0%PR- HER2- and am post-menopausal and am just diagnosed (April 9) and heading into surgery (lumpectomy and sentinel node biopsy) on May 7. So what to do this week? Research of course. I'm finding myself quite concerned about this combination of pathologies in terms of recurrence chances and treatment. Looking for information, advice, resources. Reassurance only if called for. I'm not into sunny-skies if it's about to rain. I want realism.

    And hello to those of you here whom I've "met" elsewhere since joining this amazing group of women.

    Thank you

  • Kelly325
    Kelly325 Member Posts: 3
    edited April 2018

    I was just diagnosed ER+PR-HER2- on Friday April 27th (two days ago) so I’m curious to anyone else’s experience I don’t have much more info yet getting 2nd and probably 3rd opinions as well as scheduled for MRI and genetic testing this week. I found my lump 2 weeks ago it’s just under 2cm and was not seen on 3D mammo only ultrasoun

  • bravepoint
    bravepoint Member Posts: 404
    edited April 2018

    I am 3%ER+ PR- and HER-, post menopausal and just over a year PFC. I had a lumpectomy and SNB then 6 months of chemo and 29 radiation treatments. it was a long haul.... I am now on Exemestane. SEs are minimal, some joint pain but exercise helps. I feel good and am living my life mostly back to "normal". Recurrence is always at the back of my mind but I like to think that i have done all that I could to beat this! My new motto is "Don't put off til tomorrow what you can do today!'


  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    Did any of you have the oncotype analysis done? I wasn't sure if my IDC ER99%+ PR0%- HER2- would trigger the oncotypeDX testing tu wouldn't it be important ? If the surgeon and oncologist don't suggest it, can I request (firmly) that it be done? I'm on Medicare + and excellent supplemental so I'm hopeful it'd be paid for but Husband agrees with me that we would pay out of pocket if needed for anything we feel necessary (and I realize I am fortunate to be in that position).

    I want to know as much as possible about this thing and the oncotype piece of the puzzle seems crucial.

    Thoughts?


  • PatsyKB
    PatsyKB Member Posts: 272
    edited April 2018

    meow13: In my not so humble opinion: Gut instinct always seems like a very valid element in decision making. I rely upon it in keeping my stress levels down and my mental health and equanimity in balance.

  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    Patsy, it sure sounds like you qualify so be sure to ask. Women that know initially that chemo is first line choice of treatment would not need the test since they are getting chemo anyway. They send your tumor at time of surgery to California after It is examined at the hospital lab. It takes a good 2 weeks to get it back. Ugh. More waiting. If you are in to statistics and where you will be if u doing nothing vs doing chemo, ALs this test will give you those numbers and you can make the best decision for you. Some women score low to moderate and decide chemo. Some score high risk and decide no chemo. It is an individual decision but it may help guide you on which way to go. I found piece of mind so important going through this journey.

  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    Patsy, it sure sounds like you qualify so be sure to ask. Women that know initially that chemo is first line choice of treatment would not need the test since they are getting chemo anyway. They send your tumor at time of surgery to California after It is examined at the hospital lab. It takes a good 2 weeks to get it back. Ugh. More waiting. If you are in to statistics and where you will be if u doing nothing vs doing chemo, ALs this test will give you those numbers and you can make the best decision for you. Some women score low to moderate and decide chemo. Some score high risk and decide no chemo. It is an individual decision but it may help guide you on which way to go. I found piece of mind so important going through this journey.

  • bravepoint
    bravepoint Member Posts: 404
    edited April 2018

    PatsyKB - I didn't have an oncotype test done. My tumor was grade 3 and a positive node so chemo was highly recommended.

  • wintersocks
    wintersocks Member Posts: 922
    edited April 2018

    Hi all.

    100 er + and negative for both PR and Her2. I am only just beginning to understand that this is not the most favourable combination although i don't know why entirely. I am due to see my onc in a couple of weeks and will talk this through with him. I have been told in the past that my prognosis is not great as the cancer is aggressive; but no real explanation given for that and I assumed it was because of tumor size.

    I am nearly 6 years of being ok and am due to have an MRI in a few weeks because of some arm pain but I have been told following a CT scan that cancer is not expected to be found.

    I am still on Femara although I was expected to move to Tamoxifen, but I decided to stay on letrozole and this as entirely my choice. Sometimes I cannot explain Why I decided to stay on it.

  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    wintersocks, 6 years you go girl! As you know different pieces of the puzzle can swing the pendulum one way or the other as far as chances of recurrence. The PR negativity is less favorable as the hormone is the "braking system" so we do not have that benefit. I guess we never know if the decisions we made as far as treatment is what keeps things at bay or if we would have been one of the lucky ones anyway. From what I read recurrence from PR neg tumors tends to be sooner rather than later. You seem to be on the good side of the coin flip as you are 6 years out. I don't know that I will ever "not worry" but my decisions were made so that I would not be "consumed with worry" I feel there is a difference and that is important to me as go on with my new normal. You have some time to gather any info and ask questions at your next appt. Seems like you are doing really well, that's great!

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    I decided to stick with AI drugs as long as I could, the pr negative er positive treatment studies convinced me of AI effectiveness.

  • DebAL
    DebAL Member Posts: 877
    edited April 2018

    meow, may i ask which AI are you on? One more month and i will start. I'm assuming i will give it time and if side effects too bad switch to another. Silly question but is sticking with the same manufacturer important?

  • Anna-33
    Anna-33 Member Posts: 192
    edited April 2018

    I am PR negative and premenopausal... I am on aromasin...

  • Okkate75
    Okkate75 Member Posts: 151
    edited April 2018

    I'm ER+ PR- and my onc said that was part of the reason chemo was recommended for my small tumor. It has aggressive features, and I think that's part of it. I did the Oncotype test anyway, and I came out at the top end of "Intermediate." He assures me PR- doesn't necessarily mean a worse prognosis, but I do expect to be moved to AIs pretty quickly. I'm coming to understand that there is just a bunch of stuff they do not know, so we just have to make the best decisions we can with limited information. Sigh.

  • Meow13
    Meow13 Member Posts: 4,859
    edited April 2018

    DebAL, I took anastrozole for about a year and a half. I was suffering from joint pain. I was still able to do 1hour a day on the treadmill 3.5 miles. But every morning the joint pain seemed to get worse. One day I finally called the oncologist I felt the pain was too great to get out of bed. It was slow and cumulative, I thought exercising would be enough it wasn't. I switched to exemestane and I still had some joint pain but my right eye got so dry I was worried about losing my eye sight. My eye doctor tried everything to help me but my oncologist thought I should take a break after a year and a half on that drug. Well the eye completely healed in just 2 weeks after discontinuing exemestane I was excited. My oncologist suggested tamoxifen and I was feeling so much better being off medication I said I don't want to. My oncologist thought that was fine. I have read that AI drugs especially anastrozole are equally effective for er+pr- and er+pr+ patients. Tamoxifen is about half as effective for er+pr- compared to er+pr+. It was recommended at dx that I have chemo because my oncodx score was 34. I didn't do it, I was barely grade 2 with a mitotic score of 1. I felt the oncodx was elevated due to 0% pr, but I was 95% er+ so I decided to do the anastrozole.

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