Fill Out Your Profile to share more about you. Learn more...

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

Options
145791018

Comments

  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
    Options

    TomMorrow, there is a pretty good correlation of high er and low pr values to elevated oncodx scores. The problem to me is oncodx is only giving the end results of their analysis. I was very unimpressed with the sample size of 651 stated on my report. Now of that 651, how many are lobular with er+ pr- I suspect a small percentaged based on the overall population of BC diagnosed. My oncologist admitted he is not a statistician but he is a believer in using chemo on healthy patients to knock out as many bad cells as you can. My score was 34 not 23. In the end, your wife should look at all the information and do what she thinks is right. With the er+ pr- diagnosis AI drugs make sense. I personally took a health hit taking them for 4 years but I am ok just not as painfree as I was before cancer.

  • Lightlee
    Lightlee Member Posts: 11
    edited July 2018
    Options

    I did neoadjuvant chemo and no response. Chemo included AC, Taxol and Carboplatin. I was originally diagnosed as TNBC per my core biopsy. My core biopsy was retested and I was actually ER positive.

    Per my final pathology I was 60% ER moderate staining, 0 PR. Invasive ductal carcinoma Grade 3. Tumor was 2.5 CM.

    I am now taking Anastrozole for five years. Scary to think the chemo could not stop my cancer. We stopped my chemo early after 4 ACs and 10 Taxols/Carbos because my tumor started growing so rapidly you could visibly see the tumor starting to protrude from my chest. I was pretty upset at the time. I also did Radiation. I hope the AI is effective.



  • bravepoint
    bravepoint Member Posts: 232
    edited July 2018
    Options

    Lightlee - Did you have any surgery?

  • Lightlee
    Lightlee Member Posts: 11
    edited July 2018
    Options

    Yes, I had a lumpectomy. My order of treatment was:

    Core Biopsy

    Sentinel Node Biopsy and port placement

    Neoadjuvant chemo (4 ac plus 10 Taxol/Carbo). My chemo was stopped early due to tumor growth. Definitely wanted it out!

    Lumpectomy

    Radiation - completed feb 201

    Anastrozole - prescribed for 5 years

    If I had more knowledge at the time I would have postponed the sentinel node biopsy to coincide with my lumpectomy.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited July 2018
    Options

    lightlee: out of curiosity, did your MO discuss the zero PR and offer any views on what that meant, or how it would impact hormone therapy?

  • Lightlee
    Lightlee Member Posts: 11
    edited September 2018
    Options

    Tom,

    My primary OC advised me ignore the Korean study which stated that single receptor positive cancer has a worse prognosis than TNBC. They did not feel that the study results were applicable to the US population.

    A second OC told me that my odds of recurrence decreased from 70% (as TNBC and no response to chemo) to 30 to 40% as single receptor ER positive. They went on to say that patients that are both ER and PR positive have a better prognosis than someone that is single receptor positive

    Both OC advised that I take an AI for five years.

  • Lightlee
    Lightlee Member Posts: 11
    edited July 2018
    Options

    Update: I saw my other OC today she said my odds of recurrence are about 10-15%! I like that number much better.

  • manc
    manc Member Posts: 28
    edited July 2018
    Options

    Hi everyone does anyone know being Er6 Pr4 am i in this single receptor group. Is Pr4 low enough to be minimal. Thanks.


  • PatsyKB
    PatsyKB Member Posts: 211
    edited July 2018
    Options

    I don't know for certain, Manc, but ER6 seems pretty low; pretty close to 0.

    By comparison, I'm ER+99, PR-0 - definitely single-receptor. My MO doesn't dwell on the single-receptor aspect; we treat it as a hormone-receptor positive cancer and I had the OncotypeDX test done. Oncotype #24, so on the cusp. No chemo - my choice and MO agrees. 10-yr risk of distant recurrence 15% without chemo; benefit of chemo only 3% - not enough for me. I'm on the AI drug Letrozole for the next 5-10 years (no side effects after 1 month...knock on wood).

    I'd discuss with your MO if I were you. Did you have the OncotypeDX test done? If not, your MO can order it.

  • moth
    moth Member Posts: 3,293
    edited July 2018
    Options

    Manc, I think you're close to triple neg. I was approx 10% ER and PR 0 and I'm being treated as a TNBC.

  • manc
    manc Member Posts: 28
    edited July 2018
    Options

    Really sorry everyone this is an Allred score i should have. Been clearer. I wondered if Pr 4 on an Allred is very low I'm in UK maybe scoring is different. Thanks .


  • moth
    moth Member Posts: 3,293
    edited July 2018
    Options

    Allred scores are out of 8 so I think 6 & 4 don't make you single receptor.

  • JuniperCat
    JuniperCat Member Posts: 392
    edited July 2018
    Options

    Hello. Can you please tell me what an “Allred score" is? Thanks

  • murfy
    murfy Member Posts: 254
    edited July 2018
    Options

    Here is an on-line medical dictionary description of Allred scores. These numbers would indicate that Manc is ER+/PR+.


    https://medical-dictionary.thefreedictionary.com/A...


  • bravepoint
    bravepoint Member Posts: 232
    edited July 2018
    Options

    moth - I am Er 3% and PR 0 but my MO does not consider me triple negative. I am on an AI for 5 years. Guess they all have different opinions when it's so low.....

  • TomMorrow
    TomMorrow Member Posts: 28
    edited August 2018
    Options

    My wife and I went for the second opinion at the Moffitt Cancer Center, primarily to discuss two topics. The first was whether he recommends chemo because of the Onco score of 23. He explained that the 15% recurrence risk that is generally associated with a 23 score was not necessarily the percentage that we should focus on. This is because the 23 score does not take into account tumor size or grade (as examples). He was able to go to a special section on the Onco website (presumably for oncologists) and look at a subgroup analysis. By using the 23 recurrence score, 6mm tumor size, grade 1, and AI hormone therapy, he said the risk percentage we should focus on is 5%, which is what the score was recalculated as with the additional tumor characteristics factored in. If my wife took Tamoxifen instead of an AI, the percentage went up one point. We also discussed the 2018 TailorX study and how to weigh the fact that the study shows that the population tested, which had recurrence scores between 11-25, did not benefit from chemo compared to the observational statement that some 50 and younger with a recurrence score greater than 15 "could" benefit from chemo. He thought, again based on my wife's entire profile, that the study supported the no chemo decision. Both he and my primary MO calculated, at best, a 2-3% reduction which is statistically insignificant. Thus, both MO's were in agreement on no chemo.

    The next topic was the low PR (we just referred to it as being PR negative). I asked a lot of questions here. His bottom line conclusion was for me not to worry about the PR, especially since my wife is highly ER positive. He said the negative PR was factored into the Onco score and risk of recurrence already, but did agree that an AI would be the better hormone therapy to use. This was also consistent with the view of our primary MO, who also said that I should not worry or focus on the low PR, as this is not the only piece of information that is important in determining overall prognosis and recurrence risk.

    I will admit that I have been pretty stressed out for the past month solely based on the PR. But I have a highly recommended primary MO and a second opinion from one of the top MO's at a major NCI cancer center who are both telling us to not worry or focus on the PR (and I will just caveat that this is solely based on looking at my wife's entire profile, rather than a blanket view that negative PR is not something to potentially focus on more in other situations). So I've decided to take their advice, stop researching and reading about possible implications of negative PR, and trust the recommendations and treatment plan that is now in place.

  • moth
    moth Member Posts: 3,293
    edited July 2018
    Options

    bravepoint, they were at first going to consider it positive & do endocrine therapy but when Oncotype categorized me as triple negative they redid pathology on the biopsy and on the tumor, decided it's very weak & probably less than 10%, and currently they feel they can't say the benefits of hormone therapy would outweigh its risks. They've actually been really reluctant to make a specific recommendation but I & my MO are both leaning to no.

  • meow13
    meow13 Member Posts: 1,363
    edited July 2018
    Options

    I believe more studies are needed but the presence of pr receptors does change the behavior in er cancers. See the link I posted. Most of the focus was on whether adding progesterone with tamoxifen in er+ pr+ has better outcome.

  • murfy
    murfy Member Posts: 254
    edited July 2018
    Options

    TomMorrow, thank you for sharing your and your wife's medical 'adventure'! Your wife is very lucky to have you by her side. Your due diligence has been helpful and appreciated. I hope you will continue to give us updates on her progress. Best of luck!


  • MM19
    MM19 Member Posts: 3
    edited July 2018
    Options

    Hello! I am new here and so glad to have found this thread! I was diagnosed with ILC 2.5mm ER 100%+, PR -, HER-, grade 2. I had a lumpectomy and sentinel node removal. I am currently in the middle of 19 radiation sessions. I have been worried about the negative PR, grade, etc. I am not in menopause yet, at 52, but thinking an AI will be the way to go as soon as possible.

    Doc says they can't/won't do oncotype testing due to size, and no chemo also due to size. But like everyone I stress due to grade and negative PR receptor.

    I was on combined HRT for 8-9 months prior to finding calcifications on mammo in late January. Just wondering if anyone else here was also on HRT prior to diagnosis....

  • moderators
    moderators Posts: 7,913
    edited July 2018
    Options

    Welcome, MM19! We're glad you've joined us here, but we're so sorry for the reasons that bring you to our community. We hope you find this to be a place of support as you continue with your treatment. You are not alone!

    The Mods

  • murfy
    murfy Member Posts: 254
    edited July 2018
    Options

    Hi MM19, I'm glad you found us! I was on HRT for 1 year when I was your age. When I stopped, all menopause SEs were gone, so it served its purpose. You are very lucky to have found your BC at such an early stage. You doc seems to be following current protocol and surgery/radiation/AI should be all you need for a cure!

  • Gudrun
    Gudrun Member Posts: 93
    edited July 2018
    Options

    Dear PR- negative ladies,

    I'm writing here to hopefully help some of you lose fear of the pr negative factor of your tumor.

    This September I will be 5 years out of:

    ILC at 55 years, 1.7cm, stage 2A, Grade 2, ER 100%/PR0%, Ki67 20%

    BMX, no chemo, no rads, I've been on letrozole so far.

    I'm just coming from a second opinion of one of the most prominent breast cancer professors here in Germany. He recommends not more than 2 more years on letrozole if I tolerate it well, which is the case.

    love to all of you, Gudrun


  • murfy
    murfy Member Posts: 254
    edited July 2018
    Options

    Gudrun, yours is positive news indeed! Just curious, is your doc suggesting that you stay on Letrozole for longer than 5 years?


  • Gudrun
    Gudrun Member Posts: 93
    edited July 2018
    Options

    Imurphy, yes that's correct, but only if I was fine with it since there was no huge benefit according to him.

    So he suggested taking the letrozole for two more years at the most. Thereafter, there was zero benefit, he said.

  • Gudrun
    Gudrun Member Posts: 93
    edited July 2018
    Options

    Imurphy, yes that's correct, but only if I was fine with it since there was no huge benefit according to him.

    So he suggested taking the letrozole for two more years at the most. Thereafter, there was zero benefit, he said.

  • TomMorrow
    TomMorrow Member Posts: 28
    edited September 2018
    Options

    I thought I would post this in case anyone is interested in what my wife's MO is recommending for the hormone therapy phase of her treatment, given her low PR status (and 23 oncotype score).

    I may have said this before, but he wants to take a more aggressive treatment since recommending against chemo (and the aggressive treatment/no chemo recommendation was backed up by a second opinion at one of the major cancer centers). He is recommending an oophorectomy, but doing ovarian suppression injections until she has the surgery in a few months, and using an AI (letrozole) instead of Tamoxifen. He said she would likely be on this for 10 years (but will evaluate later when new studies are completed).

    He is also recommending Prolia injections every six months for two reasons. Although my wife is 49, she has genetic features that make bone loss more likely, so this injection should help with that. However, he also said that if she were to have a distant recurrence, it would more likely show up in the bones and this injection would make it more difficult for the cancer to spread to the bones. Other than having the injection every 6-months, I don't know how long she will be taking it. When I discussed this with her second opinion MO, he said that its usually done for no more than 2 years (at least where it is being used in a preventative situation).

    Finally, he is recommending 6-month alternating 3D mammograms and MRI's for the next 5 years, with a baseline mammogram and MRI to be done in December.



  • Lightlee
    Lightlee Member Posts: 11
    edited September 2018
    Options

    Thank you Tom for posting an update. Sounds like your wife has a good treatment plan!

    I had chemo as I had a Stage 2a, grade 3 Tumor.

    After completing chemo, surgery then rads my OC prescribed me Anastrozole for five years. They also mentioned extending the hormone therapy for a total of ten years pending results of some current ongoing studies.

    I am also receiving Prolia injections every six months I had mild osteopenia too. I think the plan is for me to continue receiving these injections as long as I am on hormone therapy

    In regards to scans they only recommended annual 3d mammogram. They also did a special scan of my incision area when they did my mammogram. I also had a PET due to other issues which was negative for mestastic cancer. Yeay!

    My doctors did not recommend me alternating mammosand MRIs every six months. Was that a recommendation from Moffitt?







  • TomMorrow
    TomMorrow Member Posts: 28
    edited September 2018
    Options

    My wife had a PET scan last week because she has been having, what she describes as, pain in her pelvis and femur. Thankfully, the scan came back clear.

    Both of the MO’s suggested the alternating 3D/MRI plan, primarily because of very dense breast tissue.

    Have you had any side effects from the AI or prolia injections?

    She is also having a baseline bone density scan done.

  • meow13
    meow13 Member Posts: 1,363
    edited September 2018
    Options

    Me too very dense breast tissue mri once a year.