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

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Comments

  • wanderweg
    wanderweg Member Posts: 487
    edited March 2019

    congratulations Patsy! Personally, I am going to count one year from the date I had my mastectomy. I figure that's when they removed the cancer, and I have no way of knowing if there was any residual cancer that the chemotherapy got.

  • moth
    moth Member Posts: 3,293
    edited March 2019

    Congrats Patsy! Like wanderweg I count from the surgery date so I'm 15 months out. (at least i'm assuming that when wanderweg typed 'mistake' it was an autocorrect for mastectomy ;) )

  • PatsyKB
    PatsyKB Member Posts: 211
    edited March 2019

    Thanks, wanderweg and moth - I'll consider May 7 my anniversary date. It's my surgery date

  • meow13
    meow13 Member Posts: 1,363
    edited March 2019

    Celebrate PatsyKB!

  • debal
    debal Member Posts: 600
    edited March 2019

    hey patsy, great news! I also consider surgery date. I remember us going through all this at the same time. It's hard to believe it's been a year. Glad you are doing well!. I remember your saying "Onward!"

  • murfy
    murfy Member Posts: 259
    edited March 2019

    Onward and upward, indeed! Congrats! Had my one-year chemoversary last week and have never felt better. According to my insurance person, I can get a long-term care policy after 2-year remission which started on day of surgery. Looking forward to reaching THAT date!

  • PatsyKB
    PatsyKB Member Posts: 211
    edited March 2019

    Oh, thank you all for your good wishes. We need to celebrate everything we can in this life, don’t we?

    Murfy, I love the “chemoversary” - the more celebrations the better, so 1st surgiversary on May 7 for me and 1st BrachyRadiation-versary on May 30. That ought to do it.

    DebAL it was good to hear from you. Yes, I remember our parallel experiences.

    I haven’t dropped into BreastCancer.org in awhile but I need to do so more regularly.

    Onward!

  • wanderweg
    wanderweg Member Posts: 487
    edited March 2019

    moth - I was dictating that on my ipad and didn't go back and spell check. My ipad and phone both have a deep aversion to the word mastectomy! As do I. ;-)

  • Caitpow88
    Caitpow88 Member Posts: 4
    edited March 2019

    hi ladies! I can use as much advice as I can get! I was diagnosed October 2018 with ER + IDC, 4/14 positive nodes. Er on core biopsy was 30% and then decreased to 5% when retested. Ki 99% ! I have done AC and have completed #8 of abraxane (I had an allergic reaction to taxol). I am 30 now and have a 2 year old son.. I have had a lot of issues and really just want to make sure I am doing everything I need to do!

  • ruthbru
    ruthbru Member Posts: 47,688
    edited March 2019

    I sounds like you are following your doctor's treatment recommendations, which is the smartest thing to do. It might not be a bad idea to have them test the ER one more time, just so they have a better handle on the percent. I was only 'mildly positive' (11-25%......I don't think tests were as precise then as now) but was recommended to take an anti-hormonal for 5 years; so you will probably want to ask about that. Best of luck!!

  • murfy
    murfy Member Posts: 259
    edited March 2019

    Cait, it sounds like your tumor tissue might be heterogeneous for ER with different levels of ER in different parts of the tumor. Your Ki looks high. What was your PR level?


  • Caitpow88
    Caitpow88 Member Posts: 4
    edited March 2019

    My PR was 0 both times! I had a lumpectomy but I am currently waiting on biopsy results of a bead sized lump that was about 3 fingers above my scar :( I am devastated.

  • rrshannon
    rrshannon Member Posts: 59
    edited April 2019

    Cait hope you received your biopsy results and are doing good.

    I have my bilateral mastectomy and they will be testing some lymph nodes tomorrow and will be anxiously waiting for the final biopsy results. I always hate the waiting game.


  • She38
    She38 Member Posts: 2
    edited May 2019

    I just finished reading through everyone's posts. I wanted to share my experience and seek some advice on the hormone treatment.

    I am 39 years old, premenopausal. IDC with LVI and micropapillary features. Stage 2B Er90% and Pr<3% Grade3. My oncotype score was 52 and Negative PR score of 3.3 out of 10 and Positive ER score of 11.0 out of 12.5. I had single mastectomy followed by AC/T chemotherapy. My MO is giving me a month to recover from chemo before putting me on hormone therapy which will be any day now. He is suggesting Tamoxifen and Zolodex injections to supress my ovaries. I went for a bone scan and results found that I was -2.6 which suggests osteoporosis. My concern is with the Zolodex which I was told will lower my bone density further. I think I am leaning towards the Tamoxifen alone. What are your thoughts? Any other premenopausal women willing to share their experience?

    The AIs are for postmenopausal women. Not sure if anyone has found any research specifically for single receptor premenopausal. I have found very little.

  • lisey
    lisey Member Posts: 300
    edited May 2019

    She, if they suppress you're ovaries, they usually put you on an AI, not Tamox.  I'm still on Tamox, it's a good pill for me and just had a hysterectomy, but fought to keep my ovaries, so I could stay on Tamox. :) 

  • moth
    moth Member Posts: 3,293
    edited May 2019

    I think regardless of what you decide for your hormone therapy, you might want to consult an endocrinologist about treating the osteoporosis. I started on Prolia but there are other options. Some of them appear also have the added benefit of reducing risk of bone mets... The endocrinologist I met with has experience specific to treating osteoporosis and osteopenia in breast cancer patients and she was more knowledgeable about the options and how to treat this than either my MO or GP.

  • ruthbru
    ruthbru Member Posts: 47,688
    edited May 2019

    A friend of mine who already had osteoporosis made sure an endocrinologist was on her team from the start. Even though she was post-menopausal, she took Tamoxifen on his recommendation. I believe it actually builds bones.

  • meow13
    meow13 Member Posts: 1,363
    edited May 2019

    She38, you know being pr negative, AI drugs are roughly twice as effective as tamoxifen. It really is maddening that we don't know how effective meds are at cancer prevention. Not sure your case will respond to tamoxifen and if you do take it make sure they monitor you for possible endocrine cancers. My SIL was premenopausal and tamoxifen cause her to get uterine cancer, so mad at her doctor. He failed to recognize her condition since it is so rare. By the time she had the biopsy and was diagnosed she died roughly 5 months later.

    https://www.cancernetwork.com/articles/anastrozole...

    Another study dated 2014 supports this finding as well.

  • Kjchico
    Kjchico Member Posts: 21
    edited May 2019

    Hi, all. Was diagnosed with stage 1 IDC on April 15th. Will do a lumpectomy. I have yet met with my RO and my MO. Just with the BS. Having a MRI in 10 days. My tumor is only 8mm however is grade 3 poorly differentiated.

    My receptors are E+ 75% staining, weak intensity, PR negative, HER2 negative. My Ki67 staining, which concerns me is 93%- strong intensity, I don't know node involvement as yet. The biopsy report said I was “near triple negative", but my BS brushed that off. Said I was E+ and that was what counted. I'm confused whether my tumor is considered aggressive because of the high grade, and also the very high Ki67. Guess I'll find out answers soon. I'm 66 years old. I am against doing chemo. Just radation.


  • meow13
    meow13 Member Posts: 1,363
    edited May 2019

    kjchico, did they recommend oncodx test? It might help you decide on your treatment. I had 2 small separate 1cm tumors, one ilc one idc, no nodes, 95% er+ and pr negative her2 negative. My grade was 2 on ilc and 1 on idc, both mitotic scores of 1. No ki67 mentioned, my oncologist doesn't regard it as useful. My oncodx was 34 suggesting chemo. Well I chose AI drugs made it 4 years on them. I am on year 8 no cancer. I had mastectomy and DIEP reconstruction.

  • Kjchico
    Kjchico Member Posts: 21
    edited May 2019

    I haven’t seen the MO yet, my appt.is not till May 22nd, so I don’t know if they will do the test. Maybe I shouldn’t worry about the Ki67 score quite yet. Thank you for your reply!

  • debal
    debal Member Posts: 600
    edited May 2019

    kjchico, I'm sorry you find yourself here. We are in a unique group as single receptor positive. MRI will also clarify if there are other areas of concern in both breasts. Oncotype will give you information for chemo benefit. Most of us that are pr neg tend to fall in intermediate or high oncotype score. Small tumors can still have aggressive features. AI drugs will be an option for you. There are many decisions to make along the way. We are here to support you. The waiting is difficult. Hang in there.

  • Kjchico
    Kjchico Member Posts: 21
    edited May 2019

    Thank you so much! Just impatient, I guess. The first thing I will do tomorrow (Monday) will be to call the imaging center and get my MRI moved up - if possible. This will give all an opportunity to see the report and not have such as small window between the RO and the MRI. Maybe I have no cause for upset, but with a Ki67 score of 93% and a grade 3 tumor, although in stage 1, I’m not sure. I guess for me, patience is a virtue.

  • meow13
    meow13 Member Posts: 1,363
    edited June 2019

    Bumping, I notice there are newer threads for er+ pr- her2- cancers. This thread had much discussion on taking AI drugs several people were strongly er+ but no pr receptors.

    I think there is a group in the UK and in Australia looking at the behavior of that specific combination.

  • fairydragonfly
    fairydragonfly Member Posts: 132
    edited June 2019

    Thank you for bumping this thread Meow13!

  • PatsyKB
    PatsyKB Member Posts: 211
    edited June 2019

    Meow13, can you point me in the direction of newer threads discussing er+ pr- her2-? As you know, I'm STRONGLY ER+ and 0%PR-...the more I know, the better!

  • meow13
    meow13 Member Posts: 1,363
    edited June 2019

    I don't see it, it could be under idc. I'll search.

    https://community.breastcancer.org/forum/96/topics...


  • PatsyKB
    PatsyKB Member Posts: 211
    edited June 2019

    Thanks, Meow13!


  • Cutie
    Cutie Member Posts: 10
    edited August 2019

    Hello everyone,

    Do you know about ER-, PR+, HER2-? I am trying to see if someone has like me. I have ER 0% PR90% HER2- from initial pathology report. After chemo, no residual was found from BMX and 3 nodes removed. I originally had some abnormal nodes found in ultrasound. I am thinking to do only note radiation. But for hormonal therapy, most are for ER blocker. I thought I need PR blocker me. Does anyone know about this? Any suggestions is appreciated

    Cutie

  • anna-33
    anna-33 Member Posts: 108
    edited August 2019

    Cutie... The oncologist told me aromataseinhibitators have shown better effect than tamoxifen on singlereceptor, but I do not know why. Plus zoladex and zometa

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