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Is ER+ PR- common?

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noey69
noey69 Member Posts: 20

Hi all,

I was diagnosed at the end of February with Invasive carcinoma with lobular and ductal features; 18mm spiculated mass. ER+ PR- HER2-

I've had lumpectomy and they did find macrometastases in one sentinel lymph node. Awaiting Oncotype score now.

I have a few questions/ wonderings about others' experiences...

  1. Even though the mass was small and it was only found in 1 lymph node... how do I know that it isn't in other places? I've kind of gotten paranoid with every ache and pain now wondering if it has spread elsewhere.
  2. I'm also a little curious about the PR- component. My surgeon mentioned that it could impact follow up treatment - something about Tamoxifen not being as effective. Anyone have experience with that? Is there a different course of treatment b/c of PR-?
  3. Radiation.... do I really need it? I have such sensitive skin, I'm paranoid about how that will play out.
Thanks in advance for any advice or sharing!

Comments

  • sarahmaude
    sarahmaude Member Posts: 338
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    I think it’s in the 10-12% range of cases. I have it. Also waiting on my OncoType score. I have researched myself to exhaustion. Not sure what your grade is, but because I’m ER+, HER2- Grade 3 and PR- I fall into the Luminal B category. That search term has provided more articles.

    My understanding is that my type can statistically do really well initially, but seem to have a statically higher risk of late recurrence or metastasis. For my type, it’s definitely more likely, but absolutely not certain, that I’ll end up with a higher OncoType score.

    I did also see that the aromatase inhibitors are better choices for my type. It turned out I couldn’t take Tamoxifen anyway due to a recent DVT, so I’ve been on Arimidex for over a month now. I am happy to say I only have really minor side effects from Arimidex.

    I’m keeping in mind that statistics are just that. We are individuals, and all research is based on groups of individuals that may have other quite different characteristics, so we shouldn’t get too fixated on those numbers. And those numbers aren’t dire. Not as good as the most common ER+/PR+/HER2-, but they are still so much better than a generation ago, and I expect us to keep learning more, so I’m moving forward with the belief that I have many many good years ahead of me. And so will you

  • sarahmaude
    sarahmaude Member Posts: 338
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    Oh, and with a lumpectomy, radiation is the standard. I’ll have that either in a month, or following chemo should my OncoType DX indicate I’ll benefit from it.

  • noey69
    noey69 Member Posts: 20
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    Thank you for sharing. Mine is grade 2 I believe. There was 1 lymph node involved. I feel like I’m in the dark as I still haven’t even met for radiology consultation yet, so I have no idea when that treatment will start. Trying to make plans for work, but also wanting to get all of this over and behind me. As we all know, limbo isn’t a fun place to be.

    Wishing you the best and continued healing!

  • kotchaj
    kotchaj Member Posts: 211
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    Hi Noey69,

    My tumor was ER+, PR-. I had 21 lymph nodes taken out with my mastectomy. 20 had cancer. I've gone through 2 chemos, surgery, rads and am now on Arimidex and starting back on Verzenio. I'm on Arimidex for life and on Verzenio for two years. I was worried about rads, as I'm pale. I'm half English, lol. My skin held up remarkably well and I peeled a bit after it was done, but that was it. I religiously applied my mometasone cream prescribed by the Rad Onc 2X a day. My skin was pinkish, but that was it. I was very surprised and so was the oncology team at how well I did with them.

  • noey69
    noey69 Member Posts: 20
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    sarahmaude

    Did you get your Oncotype score yet?

  • sarahmaude
    sarahmaude Member Posts: 338
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    noey69, I talked to the testing company late Friday, and they said they’ve sent the score to my MO. I’m going to call tomorrow and ask if I can get the score in advance of my appointment. My brain processes better when I’ve had time to think.

    Otherwise, I’ll get it on Tuesday morning. I’m really happy I don’t have to reschedule my appointment to wait on my results.

    Did you get yours

  • noey69
    noey69 Member Posts: 20
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    sarahmaude, I did get mine. It actually came in minutes before my appointment with my radiologist. On a side note, I have 2 different doctors. I'm not sure why or if that is normal - haha. I will meet with oncologist next Wednesday. Anyway, at my appointment on Friday, my Dr. said the score was 19, but that was a "gray" area for me since I'm peri-menopausal (but am 53) and had some (just 1) lymph node involvement. I'm thinking no chemo, but he said the onco would be reviewing pros/ cons and then I could decide.

    I am with you. I like knowing information before the appointment so I can digest the information and do a little research so I know what they are talking about and I can be prepared with questions. Fingers crossed that you get that info soon.

    Take care!

  • sarahmaude
    sarahmaude Member Posts: 338
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    So, I got my OncoType Dx score. It's a 49. So, I'll be getting chemo. At least there is no ambiguity in my number. I was fairly certain this would be the case, but was kind of hoping I was wrong.

  • noey69
    noey69 Member Posts: 20
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    Sarahmaude, I’m sorry for that news, but glad that at least you have that information and can prepare a little more - mentally and emotionally- for your appointment. your appointment is tomorrow

  • sarahmaude
    sarahmaude Member Posts: 338
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    Noey69, I'm actually really glad to have today to prepare better for tomorrow. And the lack of ambiguity is helpful to me. I almost just waited to call, and when I did, I first got an answer that heavily suggested they wanted me to wait for tomorrow. I was very polite and said it would really help me to at least know the score. She called back within minutes with the score. I think she didn't want to ask the Dr. again, but it was being scanned into my chart, so it all worked out.

    I work better with more information sooner. Happy surprises are okay. The other kind, time helps. And really, having the score I got gives me comfort knowing that chemo will be helpful in reducing my risk of recurrence.

  • noey69
    noey69 Member Posts: 20
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    sarahmaude, I just wanted you to know I've been thinking of you and your situation and hope that your appointment gave you a clear path of treatment that you feel comfortable and confident with

    Take care!

    N

  • sarahmaude
    sarahmaude Member Posts: 338
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    Noey69, I'm moving forward. For me, chemo increases my odds of distant free survival by almost 25%. I didn't think about the fact that greater risk also might mean much greater reward.

    I do have pretty good peace of mind, and my focus is on getting through chemo. I'm pretty healthy other than having cancer (snort), so I'm hoping that will make my treatment more manageable. I'm also armed with all the wisdom of the women who've gone before me and shared small comforts and coping aids. Knowing that a lot of people go this road without the prep, both mental and practical, that I've had is empowering. I've got my kit of knowledge and "stuff"

    Have you seen an MO and gotten post surgical staging? Was your node a microinvasion or an actual positive node? If it's a microinvasion, you will be stage IA. If it's actually "positive", then you'll be IIA. If you end up Stage 2, join us in the Stage 2 Sisters thread.

    I'm thinking about you too and hope you are doing well. What's next for you?

  • noey69
    noey69 Member Posts: 20
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    Hey sarahmaude - 25% is significant! I wish you all the best and mild side effects.

    I did meet with my MO yesterday. I am Stage IIA, as the lymph node was positive. She explained that my odds of recurrence were low... around 16% with AI's and that would only improve by about 5-7% with chemo. She said that the same result is being shown by just shutting down ovaries from producing estrogen (something still being studied, but likely to be proven). Since I'm so close to being post-menopausal, she is recommending Lupron injections until hormone levels indicate that I'm solidly in that stage.

    So, that's where I am. I have my simulation appointment tomorrow for radiation. I'll have 4 weeks of that and then monthly injections and meds will begin late May.

    I will be checking out the Stage 2 Sisters thread!

    Thanks for the message! :)

  • katg
    katg Member Posts: 209
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    Stage 2...... I was happy with that. 5cm tumor, but no metastasis. Wait, the tumor confirmed Her2+. No wonder my tumor was big. Add in BRAC2 and i do not get to rest easy thinking all is good. Nope. On that Herceptin and projeta every 3 weeks. Femara every day. Today i had the specialized surgery on my nose to remove a Basel cell. 3 cuts and it is good, but the stitches and the bandage remind me more wound care in the middle of my face. I put off finding a new dermatologist and finally accepted a new one at the City of Hope with my PA Alex's recommendation. 4 months after she suggested.

    Tomorrow i see my Breast surgeon after my mammogram. Only my 2nd mammogram ever and after I remove my last breast, only MRI's. Crazy. The hope is no cancer has arrived, so i can have the surgery once my DVT is over. Sarahmaude...did you have one? I saw you wrote DVT!