Strong ER+/ PR weak (negative)

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Mom_of_twins
Mom_of_twins Member Posts: 180
edited October 2016 in Stage III Breast Cancer

Hi there! I think I've seen some talk of this topic somewhere on these boards, but couldn't find the old threads and thought I'd start a new one. Any of you strongly ER+ and weakly or negative PR? On initial biopsy, my ER was >95% and my PR ranged from 5-20% (different lab values, but it was definitely weak). After neoadjuvant chemo, my PR was totally negative. I asked my oncologist and outside opinion oncologists about the significance of this, and they all say that endocrine therapy should still be effective, especially due to my high ER level. The most they said is that it's ideal for both to be strongly positive, but the ER is most important.

They also said that AIs have shown to be more effective for this subtype (Luminal B), so I'm doing ovarian suppression and Anastrazole. I've read that this subtype has a poor prognosis and other scary stuff about PR-. Ugh.

I would love to hear your thoughts, and any long term PR- survivors? I put in the stage III forum because I was either a stage 2B/3A initially, but don't know the extent of my nodal involvement due to neochemo. Also wanted to know how people were doing who were PR- with lymph node involvement.

Please share your stories and ER/PR percentages! Thanks!!

Comments

  • balance
    balance Member Posts: 49
    edited October 2016

    75% ER posiive, negative PR...so far so good:).

  • Kicks
    Kicks Member Posts: 4,131
    edited October 2016

    I'm ER+/PR-, (HER2-). It's 7+ yrs since IBC DX, Stage IIIc. Had 19 pos. nodes. Still here - NED (No Evidence of Disease). Still as active as ever. Started Femara in 2/2010 (was only available in brand name then) and have been on letrozole (generic form of Femara) when it became available in the generic form - will be on it forever.

  • TectonicShift
    TectonicShift Member Posts: 752
    edited July 2020
  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    TectonicShift,

    I know what you mean and I think you're right. I was inquiring more about percentages, but I do know that the staining is assessed as weak to strong. Interesting caveat, though...which I don't fully understand the implications related to this scenario. I do know that the intensity of my estrogen receptors was "strong" per my pathology report. I would have to do some more research to further understand, or maybe one of you wonderful, knowledgeable women can also chime in! :

    Thanks to others for sharing and for the encouragement! I'm hoping to hear from many others!!

  • LM070917
    LM070917 Member Posts: 323
    edited October 2016

    Hey, I had 90% ER+, 30% PR+, so similar to you. I am now 1 yr out and am on arimidex and zoladex for the next 5/10 years. I'm doing well, keep active, no longer drink, watch my weight and what I eat, particularly estrogen related.

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    Thanks for sharing! Bumping for more responses!

  • SpunkyGirl
    SpunkyGirl Member Posts: 1,568
    edited October 2016

    I'm ER+/PR-. I think I was about 90% ER, and I think no PR. I rarely run into anyone else with this combination. Honestly, I don't think they've got the exact science down on each of these BC types. I alway advocate that you listen to what your treatment team is recommending for a treatment option, but also do your research too. I took Tamoxifen for almost 5 years before stopping it. I did not feel that the long-term use of it or the AIs outweighed the risks associated with each. I hope I'm right:). Good luck finding what works for you

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    Thanks for sharing, SpunkyGirl! And nice to hear you're at least 5 years out!! May I ask what stage you were

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    mom_of_twins - ER+ 96%, PR+ 7%, node positive - stage 2B, but also Her2+. I had complete axillary dissection, a BMX, chemo and targeted therapy, but no rads, and just passed 6 years from diagnosis.

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    Thanks, SpecialK!! So happy to hear you're 6 years out! So you had chemo before surgery? If so, how was your response? You might have noticed that I started another thread awhile back inquiring about residual disease after chemo, and just curious what your situation was, as we have a very similar diagnosis. Thanks so much for sharing!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    mom - no, I had surgery first. Perjeta had not yet been introduced for early stage use when I was diagnosed so that did not drive neoadjuvent treatment, and I was having a BMX with expander placmement anyway, so no need to try to shrink the tumor. The mass was well placed - not near the skin or chest wall so it was easy to remove without concern for narrow margins either. My SNB was negative in the operating room, but positive in the lab, so five weeks after BMX I had full axillary clearance surgery and another larger node positive node was found. I had some healing issues and had two surgical tries to close my skin but ultimately had to have the left expander removed, and then I started chemo. I was way outside the normal timeline for start of chemo after surgery - usually they like to see less than 60 days and the sooner the better - I was over 100 days from first surgery to first chemo. Our diagnosis is similar from the standpoint of tumor size and nodal status, and if I was treated today I would have met the criteria for Perjeta and had neoadjuvent chemo. Sorry I can't offer any PCR info but I hope you are doing well! There are a bunch of neoadjuvently treated folks on the TCHP and triple positive threads who probably have similar tumor size and nodal status, but I don't know if it is an apples to oranges comparison because the drug regimens are different.

  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited October 2016

    my tumor was 60% ER + and <1% PR - . I had LX first, 4 rounds of TC, then a BMX. I will be having a full hysterectomy this week. The reason my doctor has been so aggressive is that I also carry to gene mutations, PALB2 and Chek2. Both are implicated in breast cancer, ovarian cancer, colon cancer, lung cancer, uterine cancer, and pancreatic cancer, all of which my family has in abundance. I'm sure I will be on an AI for a minimum of 10 years.

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    Thanks so much for sharing, SpecialK! Interesting about your sentinel node. So was only one node biopsied initially? I'm glad they found the other one. I only had 5 nodes removed, so I often wonder if any were left behind.

    I was told that they're moving toward removing less nodes, and letting radiation take care of the rest.

    And I agree, not sure if I can compare with HER2 ladies, but I will check out those boards for PCR info. I have learned that there are a lot of ER+ ladies who didn't get a PCR. Praying hormonal therapy does its job. The positive lymph nodes haunt me!

    Mustlovepoodles, thanks for sharing!! Glad you're doing well and I hope you continue to do so! I will also be on an AI for at least 10 years, too. Starting Prolia soon

    Would love to hear from more ER+/PR- ladies!!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    mom - yes only one node lit up strongly with dye and tracer on the SNB during my BMX and since the operating room pathology exam did not reveal any gross disease my breast surgeon did not take more nodes at that time. My BS was one of the pioneers of SNB, was a principal in the early trials at an NCI center. He does not routinely take any more nodes than absolutely necessary. The only reason he advocated for ALND, and was backed up 100% by my MO, was because of the Her2+. My situation is very unusual in that I had only IST (isolated tumor cells - only 20 of them) in the SNB node, so "clinically node negative", but a much larger positive node further up. If my surgeon had not been as experienced as he was things might have turned out differently for me. I had another 11 taken in the ALND surgery, but that is a low number of total nodes in a level 1 & 2 ALND. Most people, and likely you also, have more nodes than that. If you look at people's sig lines you will see ALND with nodes removed in the 20s and sometimes even 30s. The remainder of my number of nodes in my sig line are nodes removed from the SNB done on the other breast, two were removed from that side. I would not have wanted to rely on the combination of chemo and rads to eradicate a positive node that was the size of a stage 1 breast lump. Because I had the ALND surgery and chemo I did not need to do rads, I asked both the BS and MO on two separate occasions and both times they were consistent - no need. As far as comparing the PCR rates for ER+ disease with those who are Her2+, and/or triple positive, remember that the Her2+ people received targeted therapies that potentially made the drug regimen more effective. It is hard to know for Her2+ patients how much the tumor is driven by hormones and how much by the overexpression of Her2.

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    SpecialK, thank goodness they found that node and you had such a good surgeon/team!! I agree that most people have 20-30 nodes in levels 1 and 2. My surgeon did say I had fewer nodes than most and had very little "fat pad" in the axilla.

    Clearly, I'm sure I had more than 5, but my surgeon was confident I didn't have more nodes with cancer. Imaging didn't reflect that, and she said she manually felt all of my nodes during surgery. Who knows. Praying that I only had those two and nothing was missed. My nodal ratio was one of the reasons that radiation was recommended as I was in a "grey zone." I imagine if I had more nodes removed, I may have gotten a pass on it.

    And I agree about the HER2 differences; I've been told that PCR rates are higher with triple negative, and HER2 because of the targeted therapy. It might be comparing apples to oranges, like you said.

    I'm faithful in taking my AI and am hoping for the best! Am also going to enroll in a Palbociclib trial soon, so doing everything I can.


  • SpecialK
    SpecialK Member Posts: 16,486
    edited October 2016

    mom - is this the PALLAS study?

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    SpecialK, yes it is

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    Bumping for more replies

  • AnnKat
    AnnKat Member Posts: 11
    edited October 2016

    Hi everyone, I've just joined this forum. My 62 year old mom is diagnosed with Invasive Ductal Carcinoma Est+, Prog+, HER2-, between stage IIb & IIIa. She has a tumor on her breast 1.2cm and a 3.4cm tumor in the axilla that broke out of her lymph nodes. PET scan came back negative for spread. Doctor suggested treatment order chemo, surgery, radiation, and hormone therapy. My mom will have her first round of chemo this Wednesday. She will have four rounds of AC (once every 3 weeks) and 12 rounds of Taxol (once a week). I've been juicing fresh organic vegetables and fruits for my mom since her BC diagnosis a month ago. I've also been giving her immunity boosting supplements called Beta Glucan to help keep her body strong in order to deal with chemo. I want to ask if there's anyone who juice raw vegetables and fruits and or take supplements DURING chemo to help control or reduce the severity of chemo side effects? I've heard that patients undergoing chemo therapy will be very prone to infection and so I'm afraid feeding my mom raw vegetable & fruits might cause her to have infections. My mom's oncologist said it's okay for my mom to continue taking the Beta Glucan supplement during chemo because the ingredients are all natural but my mom's surgeon said she shouldn't take any supplements during chemo as it might interfere with the effectiveness with chemo treatment. I'm not sure which doctor to listen to? If there's anyone out there who know someone or personally have taken supplements and eat raw vegetables & fruits during chemo please let me know. Thank you and good luck to all who's battling this terrible disease.

  • Mom_of_twins
    Mom_of_twins Member Posts: 180
    edited October 2016

    Hi AnnKat,

    So sorry to hear about your mom. Not sure how much this helps, but my oncologist discouraged supplements during chemo, except for a multi-vitamin (with no more than 100% of daily allowance for each ingredient). I also continued on Vitamin D, because I had been on it for low levels.

    As far as raw fruits and veggies; I ate them at home when I could wash them, etc., but avoided them out at restaurants. I felt more comfortable preparing my own salads, etc., just because I didn't want to risk bacteria. No one told me to do this, but it was just what I was comfortable with.

    I hope all of her upcoming treatments go as well as they can! Will be thinking of her

  • LM070917
    LM070917 Member Posts: 323
    edited October 2016

    Hey Ann, yes I did green juicing all through my chemo and I believe it really did help- no infections, no complications etc. I did 80% veg and 20% fruit. All fruit and veg I used was organic, so no pesticides I also removed red meat, sugar, alcohol and dairy from my diet- because they all promote ER+ cancer. I still don't have them and I'm a year out now. I kept supplements to a minimal during chemo, I mainly did probiotics, vit d and magnesium. No green tea during chemo as it does interact with it, afterwards is fine. Same with others supplements, I would really take them after chemo to flush out the body. I would also try to exercise even if a 30 min walk during chemo as it actually helps with side effects and obviously in the long run. Also use frankincense and myrrh essentials oils as they are anti-cancerous.

  • flatnfab54
    flatnfab54 Member Posts: 44
    edited October 2016

    I was 95% er and pr -, but her2 postive. 8 years out

  • SSInUK
    SSInUK Member Posts: 245
    edited October 2016

    re nutrition - I went to a lovely renowned cancer specialising nutritionist for a while. Sugar and alcohol is a no brainer - just not good - but dairy is complex. She told me to reduce dairy during chemo to help the liver and concentrate on high quality protein to rebuild the body (fish chicken lentils nuts) along with veg/fruit etc. Definitely lots of juicing!!But post chemo her view is that there is opposing research on dairy. While milk has been explored as promoting ER+ cancer (low BC rates in Japan due to zero dairy?? Or is that the fish:soya??) - it has also been shown to have a protective effect by bone strengthening. On her suggestion I go for moderation - organic, and use oat rice and hemp milk too.

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