Newly diagnosed ER-,PR+...anyone else?

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Kim2331
Kim2331 Member Posts: 2
edited January 2016 in Just Diagnosed

I just got diagnosed today. I'm 33. Mother of a 5 year old and a 9 year old. No family history. This came out of the blue. I had pain in my left breast and under my left arm one evening. Checked and felt a lump in my left breast and one under my left arm. Doctor did an exam and sent me for a mammogram and ultrasound. The radiologist did biopsies immediately afterward.

On the pathology report it says grade 2-3 and it says ER- and PR+. The HER2 is pending. Anyone else have the PR+ without the ER? From google I've read that it is rare and somewhat controversial. Anyone else have experience with this? I'm meeting with a breast surgeon next Wednesday and then I'll probably get at least one other opinion. Anyone know what they do to treat ER-, PR+

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  • JohnSmith
    JohnSmith Member Posts: 651
    edited January 2016

    That sounds odd and I didn't think was possible, but I'm just a layperson. I'd definitely pursue the second opinion.

    My understanding is that PR & ER are tied to each other. I was once told by a Doc that PR is a subset of ER. Essentially, PR is an estrogen regulated protein. I asked the Doc why there weren't any PR specific drugs. He responded saying that Tamoxifen which not only blocks the Estrogen receptor (it's primary target), it also blocks the progesterone receptor in the process.

    He went on to say, if your estrogen receptor isn't working (or is low), you'll have an inactive (or equally low) progesterone receptor.

    I'll add this topic to my favorites and look forward to future replies.

    Best of luck...

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  • MaineRottweilers
    MaineRottweilers Member Posts: 156
    edited January 2016

    I am ER-, PR+ (50%) and Her2/neu +++. There is very little information about this subtype. I had a consult at Dana Farber because my oncologist wasn't sure what to do with me. DFCI didn't have any additional suggestions, they told my oncologist to treat me as though I am triple positive so I will go on AI when I am ready to take a break from chemo (I am stage IV). I will be marking this thread as a favorite. If you come up with additional information, I would love to hear about it.

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  • HausFrauMi
    HausFrauMi Member Posts: 124
    edited January 2016

    I have only had the needle biopsy results come in --my ER is negative PR is 2% + They are having to do the FISH on the HER2 since the initial test was inconclusive?? I can't remember what word the nurse used yesterday.

    I am waiting to hear from the 2nd surgeons office today for an appointment. I had my genetic testing blood work taken yesterday so have the 2-3 wait for that to return. At the moment it is a Stage 1 (1.3cm tumor) and a Grade 3 tumor. I am 42 and my mom died from breast cancer in 1989 at the age of 38 so I qualified for genetic testing on 2 fronts. There is no other significant cancer in my family. Most people have heart disease issues.

    I had an initial consult with a surgeon last week but found out some additional details regarding her not getting good margins. I would prefer 1 lumpectomy vs 2 if I can help it!!! The US showed negative on my lymph nodes but I am bit paranoid and expecting they find some little sneaky buggers in there after surgery.

    Not sure how long the FISH results take. Biopsy was Monday Jan 11th.

    I am still debating lumpectomy vs double mastectomy with my family history. However, I am leaning towards lumpectomy and whatever else is recommended chemo/radiation. I have children 7&9. I am not interested in having such a major surgery but won't rule it out in the future if needed.


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  • Citrinetiff
    Citrinetiff Member Posts: 88
    edited January 2016

    Hi,

    I also have ER- PR+ HER2-. The tumor was tested three times (once by Oncotype-score came back at 51), and it has remained the same. It's true that it's quite rare, and that is why my oncologist is treating me as though it were TN (triple negative), so AC 4 rounds every 3 weeks, and then Taxol every week for 2 months.

    I had a partial mastectomy and SNB. I am comfortable with that decision since studies I read stated partial mast/lumpectomy and radiation have the same long-term survival rates as a mast. I will also have 8 weeks of radiation.

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  • Ag23
    Ag23 Member Posts: 37
    edited January 2016

    I'm also adding this to my favorite topics. I'm triple negative, but my pr is around 30%. They are planning to do more testing of the tumor after my mastectomy on feb 4. I'll update you all with their findings. If I forget to include on this thread, post a reminder for me:o)

    I was treated w standard tn chemo, but did not respond. Surgery is next, then rads, then hopefully a trial of some sort. That piece I'm concerned about since I was already kicked out of one trial for having too many pr receptors.

    Best wishes to you all! This is a sucky club to be in, but you will find a lot of support on these boards

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  • exercise_guru
    exercise_guru Member Posts: 716
    edited January 2016

    I have a situation where the tumor on my left breast was only Her2+ but it came back after surgery ER+ so I am sure can insist that your doctor retest the pathology post surgery. I am sure a surgeon would anyway.

    Also I would ask if an MRI would show your nodes better so you can understand what your options are. My advice is to wait until the HER2 is back and ask them to rush your genetics for the smaller 6 panel because certainly a Gene would impact your decision.

    My situation was a little different in that I had double so a Bilateral Mastectomy but they only had the BRCA1 & 2 test back in two weeks. It was two weeks later post surgery I found out I was Palb2. So glad I had done the BMX.


    BTW YES absolutely get the best Breast Surgeon you can. That really matters.

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