Newly diagnosed ER+, PR-,HER2-

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Gigibozo
Gigibozo Member Posts: 27
edited September 2019 in IDC (Invasive Ductal Carcinoma)

Hi all. First post. I was recently diagnosed with IDC. What I knew going into lumpectomy on 6/13 was that the single tumor was ER+, PR-, HER2 -. The tumor is grade 3. The pathology report says that the tumor is 2.1 cm. I am stage 2a. Thankfully, the nodes were clear and the margins were also clear. I will now wait for oncotype testing to determine need for chemo.

In reading the boards, I see references to ER+/PR- not having a great prognosis. That combined with the stage 3 designation has me very nervous. Anyone out there with similar? Any questions I should be asking my surgeon at follow-up next week?

I hope this post is clear. Running on little sleep (uncomfortable from surgery). This has been especially difficult for me since I had a lung cancer diagnosis last year (biopsy showed unrelated to this breast cancer). Thankfully that was stage 1a, but the surgery was hard to get through. Clear follow up scans so far:)

Thanks in advance!

Comments

  • balance
    balance Member Posts: 49
    edited June 2019

    So sorry about your diagnosis. As you can see from my stats, I was also ER +, PR-, HER2-, grade 3. My tumor was smaller than yours, but I had a positive node. I'm 7 years out...so far so good. Wishing you well.

  • Beesie
    Beesie Member Posts: 12,240
    edited June 2019

    So sorry you've been diagnosed. You will find lots of ER+/PR-/HER2- women here:

    https://community.breastcancer.org/forum/137/topics/858729

  • Fairydragonfly
    Fairydragonfly Member Posts: 194
    edited June 2019

    I'm in the same boat as you. Getting my oncotype results back on Thursday when I see my oncologist. Keeping you in my thoughts and eager to hear more from others going through this

  • Murfy
    Murfy Member Posts: 342
    edited June 2019

    Gigi, as you also had that lung cancer diagnosis, you could ask your doc if genetic testing is in order. Might help with determining your follow-up treatment.

    Best of luck!!!


  • Gigibozo
    Gigibozo Member Posts: 27
    edited June 2019

    Balance - Thanks so much for the well wishes.

    Beesie - Wow! Thanks for the link. Lots of info to digest.

    Fairydragon - Let me know about your oncotype results. It will probably be at least another week for me.

    Murfy - I has genetic tests done. Thankfully I was negative for all nine mutations.

    I am particularly concerned about the grade 3 component of this. I had my mammogram (normal) this past August. My breast tissue is very dense, so I had my yearly ultrasound in November. Surgeon said this mass was not there then. Mass was identified on MRI in late April. Chose to have the MRI because my lifetime risk was 20.1% (threshold for additional screening is 20). Lucky to have has that risk conversation with my specialist at that time.


  • Murfy
    Murfy Member Posts: 342
    edited June 2019

    Well, one 'good' thing about grade 3 tumors is that they tend to be fast-growing and, therefore, more responsive to treatment! However, here's hoping your Oncotype shows low numbers!

  • rrshannon
    rrshannon Member Posts: 117
    edited June 2019

    I also had a normal mammogram 5 months prior to my ultrasound that found my ER+ PR- tumor. My 2nd opinion at City of Hope stated she would have started chemo without an ONCO due to the PR- . Though by the time I finally got the appointment with her I had my ONCO results. It was over the holidays and took a while to get both the ONCO results and the 2nd opinion appointment.

    Wishing you luck with your recovery, results and your treatment.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    Well a small percentage of us are er+ pr-, her2-. I had 2 tumors ilc and idc both 95% er receptors and 0% pr. My grades were 1 for idc and 2 for ilc. Both had mitotic scores of 1, slow growing. My oncodx came back at 34. Both tumors measured 1cm at greatest extent no nodes. I declined chemo and went for AI drugs made it 4 years. I am now 8 years NED.

    Interesting thing about er receptor only behaves like triple negative as far as recurrence srsts but AI drugs are roughly 2x as effective for er+ pr- as tamoxifen.

    If I were grade 3 I might have seriously considered chemo but as it was I was not willing to do it to possibly prevent recurrence.

  • Salamandra
    Salamandra Member Posts: 1,444
    edited June 2019

    They've reconfigured the staging system so now your stage should reflect the prognosis/recurrence risk. Your grade is accounted for in your staging, and is just one piece of the puzzle.

    However, all of it is just statistics and odds. Yes, a stage 1 grade 1 triple positive will have better odds than a stage 3 grade 3 triple negative negative diagnosis, and the whole spectrum in between. But it is still completely plausible that the first person would recur and metastasize and the second person would live out a long life and never deal with cancer again. The odds are very useful at the population level for health care policy and developing standard of care (e.g., AI vs tamoxifen for PR-), of much less value at the individual level.

    That said, everything about this process is nerve wracking and it is so normal to be nervous. We have to learn to live with uncertainty in a whole new way.

    Sending

  • Scrafgal
    Scrafgal Member Posts: 631
    edited June 2019

    For anyone interested..I just bumped up a thread for Long term Oncotype test survivors. My score was 46. I found that thread helpful.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    For everyone diagnosed with fast growing aggressive cancers don't despair. These medications can work the best on knocking out your cancers. Sometimes the slow growing ones can be more insidious.

    Getting diagnosed as soon as possible is our best hope of a cure.

  • Pessa
    Pessa Member Posts: 519
    edited June 2019

    I am an 9 year survivor of ER + PR - HER -, stage 1 BC Had bilateral mastectomy, chemo and on year 9 of anastrazole. NED

    I was diagnosed with lung cancer about 3 years after BC diagnosis. Originally stage 1B, now stage 4. Doing well on current treatment.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    Is the lung cancer a second primary or is it metastasized breast cancer?

  • momand2kids
    momand2kids Member Posts: 1,508
    edited June 2019

    Not sure if this is helpful-- I was er/pr+ her - but my oncotype showed I was closer to pr-. Onc said that pathology (pr+) ruled the day-- but I suspect I was a very lowpr+. Anyway, I am almost 11 years out----lumpectomy, - had chemo (oncotype 27) and radiation and AI for 5 years. All good- and I do my regular mammograms, onc visits and an MRI every other year--- this all seems to work for me--- I hope you get good news about your treatment... others are correct-- the treatments seem to work best on the more assertive tumors


  • Pessa
    Pessa Member Posts: 519
    edited June 2019

    My lung cancer is a second primary. No connection with the breast cancer. I also had melanoma 25 yrs ago. No recurrence

  • Kjchico
    Kjchico Member Posts: 35
    edited June 2019

    I went to my post-op surgery appointment recently. Clean margins, no node involvement. 😎 My lumpectomy was 6/14/2019.

    The only issues was the IDC was grade 3 and they found a friend next to it - medium-grade DCIS. And also the obnoxiously high Ki67 (93%!) - which we knew about from the biopsy. I'm ER+ (weak staining 75%), PR-(0%) and HER2-.

    The next steps are what treatment options the team recommends. I go to my radiation oncologist July 1 and medical oncologist July 3. Back to the surgeon July 18th.

    I am very curious on what my Oncotype score will be. I'm 66,


  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2019

    I hope you'll keep us posted, Kjchico - I was diagnosed last year. (My info's below.) Doing well. Like you, I had IDC + a little DCIS; ER+/PR-/HER2- although my ER+ was 95%, so somewhat higher than yours. I'm always searching for information about Single Receptor ER+/PR-/HER2-.

    My Oncotype was 24, at the high end of intermediate and, based upon the TayloRX report, and after much thought and polling of three doctors, I chose not to have Chemo. Because I qualified for SAVI Brachytherapy, I was able to do that and get my radiation done within about a week and a half (5 days of 2x daily treatment with a weekend "off" in between). Letrozole (generic Femara), an AI for 5-10 years...now 4-9 because I'm a year in.

    Good luck - looking forward to your next report.

  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2019

    Gigibozo Thank you for starting this thread - I too was diagnosed with IDC, ER+/PR-/HER2- last year. I'm sorry you're going through this but welcome you to a wonderful family of people who will support and share and be your community whenever you want us. This website saved my ass last year when I felt lost! I don't drop in as much as I should, but will make a point of checking in more frequently as it seems there's always something to learn or something to impart to people who need information or just a pat on the back and a little comfort.

    Please keep us in the loop as you go through your next months.

  • PatsyKB
    PatsyKB Member Posts: 272
    edited June 2019

    Gigibozo - btw, I too had my mammogram a few months prior to diagnosis and it showed nothing alarming. Then I had my yearly MRI which DID see my little "something." I strongly recommend the twice a year protocol - mammogram and 6 months later MRI every year without fail. An ultrasound did not see my nugget, nor did a follow up mammogram even though they knew where to look. Thank goodness for the MRI - my tumor was grade 1, stage one and no nodes were involved.

    Also, like you, I was high risk (hence the 2x year screening ordered by my primary care doc years ago). Ironically, I went through genetic screening/counseling in 2017 BECAUSE of my high risk (soooo many abnormal mammograms and biopsies plus at least 10 relatives with cancer going back just 3 generations and including 5 breast cancers). A 32-gene panel showed - get this - NO genetic abnormalities which would indicate risk of any of the cancers screened for. Including "My Cancer" which I developed the next year.

    Go figure. Of course it's important to remember that only 8% (by some measures) of breast cancers are genetic.

  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2019

    PatsyKB, my case is similar but I had 2 tumors 1 idc the other ilc both 1cm, my nottingham scores were 5 and 6, so grade 1 and 2 with mitotic scores of 1. ER 95% and PR 0%, her2 negative. I had a single side mx with DIEP reconstruction. I did 4 years on AI drugs, my oncodx score was 34. I didn't do chemo. I had no nodes and good margins so no radiation. Oncologist wanted me to do the chemo.

    I found some information on the possible meaning of being pr negative, but in the studies most are weakly er positive and a bit more aggressive. There were 2 articles about the difference between tamoxifen vs anastrozole and it was encouraging to see anastrozole being almost 2x as effective.

    As far as recurrence our case behaves more like triple negative. So the first 5 years is where nearly all recurrences happen. My oncologist says for along time researchers believe the absence of pr suggests the cancer is no longer feeding off estrogen. Not so sure about that since anastrozole seems to be working. There are theories about the aggressive behavior I had a couple links posted in the other thread. But again most of those were fast growing.

    I am on year 8, no cancer. Have no idea how I got it, I had none of the risk factors as far as family history or based on my health and health habits. I get so tired of reading about exercise, weight and alcohol, bunch of meaningless noise atleast for my case.

  • Kjchico
    Kjchico Member Posts: 35
    edited June 2019

    Thank you so much. Yes, I will keep all up to date. I find out my Oncotype results on July 3rd. I’m really curious about the results. ❤️

  • Gigibozo
    Gigibozo Member Posts: 27
    edited June 2019

    I went to my surgeon for post- op check this past Wednesday. No Oncotype results yet. He said 7-10 days. This coming Monday makes it two weeks since it was ordered. Anxious to know my score and make decisions.

  • Kjchico
    Kjchico Member Posts: 35
    edited July 2019

    Oncotype is 47. I start TC (4 rounds) tomorrow. I will do great! 🤞

  • Gracie-2
    Gracie-2 Member Posts: 1
    edited August 2019

    hello everyone, i was operated on the 7th may 2019, the result came out on the 7th june. The diagnosis showed INVASIVE DUCTAL CARCINOMA then i did IMMUNOHISTOCHEMISTRY, the result showed ER=POSITIVE, PR= NEGATIVE HER2 NEGATIVE. for the ER, the mark is on no. 3 that is STRONG STAINING, meaning the proportion score is 3 and the intensity is 3= 6. now the doctor wrote this to me to buy for chemo: I.V Epirubin 150mg stat, I.V Cyclophosphamide 1g stat, Tab Capecitabine 1.5g 12 hrly for 2weeks, and in betweet the third and fourth chemotheraphy, ill have to undefgo the whole mastectomy.

  • voraciousreader
    voraciousreader Member Posts: 7,496
    edited August 2019

    gracie! So glad you found us! Wishing you well! Keep us posted. We are here for you

  • Askmissa
    Askmissa Member Posts: 76
    edited September 2019

    What does "srsts" mean?

  • ik0106
    ik0106 Member Posts: 44
    edited August 2019

    Is it possible that your ER/PR/HER status could be different from the biopsy results to the results from the surgery pathology?

  • TomMorrow
    TomMorrow Member Posts: 43
    edited August 2019

    My wife's surgical pathology was different from the biopsy results. Her PR on biopsy was 97% (strong) but on surgical it was only 5% (weak). Her ER was slightly lower, 97% (strong) v. 90% (moderate).

  • Totallytubular
    Totallytubular Member Posts: 62
    edited September 2019

    Hi, sorry you are going through so much treatment. I had an Onco score of 21 and had chemo CMF as a back up and now 3 years out on Arimidex. My doctors at Sloan Kettering were quick to notice that it is ER positive so receptive to hormone treatment and AI.. they seemed more sensitive to Onco number than negative progesterone. I know I read everything on the internet. lol. best of luck to you and your health - it's treatable.

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