ER+, PR+ weak positives

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LivinLife
LivinLife Member Posts: 1,332
edited August 2020 in DCIS (Ductal Carcinoma In Situ)

I've learned so much from everything I've read on this site so far! I so appreciate everyone sharing what you've learned as part of your journey, your experiences, concerns, what's worked out, what hasn't..... Thank you - it's helped so much as I'm such a newbie. I looked at my pathology report again as I'm learning and still grappling with what I will do. Have MRI Friday and appointments with surgeon and RO next week which will help inform and decision-making as well. I see on my report my "aggregate" actually measures 3x2.5x1 cm from what they can see (such dense tissue). Also my ER and PR positives are weak - less than 5% intensity. I've read research has generally focused on 10% and above - even 10% seems weak? Anyone have such low intensities, take Tamox or AI and think it's helped? I'm post menopausal so I'm assuming IF they suggest and I take it would be AI?

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  • Beesie
    Beesie Member Posts: 12,240
    edited August 2020

    LL, from reading your other posts, it appears that you are leaning towards a BMX. If you go that route, then with pure DCIS, or even DCIS with a microinvasion (as I had), endocrine therapy will not be required. After a MX for DCIS, your recurrence risk is low enough that the risk reduction benefit from Tamoxifen or an AI will be less than the risk of serious side effects from these meds. In other words, with this diagnosis and a BMX, you would put yourself at greater health risk by taking endocrine therapy than not taking it.

    If you have a UMX (a single mastectomy), then you have a decision to make on whether to take endocrine therapy as a preventative against a new primary breast cancer in your contralateral breast. And if you have a lumpectomy, then endocrine therapy can provide risk reduction benefit both relative to a recurrence of this cancer (DCIS recurrences are DCIS ~50% of the time and invasive cancer ~50% of the time) and as a preventative against a new cancer. With such low ER and PR, how much benefit would you get? I'd guess not much but there has been studies done to suggest that even 1% ER/PR positive provides some benefit and warrants taking endocrine therapy.

    It's important to note however than these studies have been done on patients with invasive cancer. For these patients, the most significant benefit of endocrine therapy is a reduction in the risk of distant metastasis - in other words, these meds can be be life saving. With pure DCIS, since it is non-invasive, this direct benefit does not exist. So whether endocrine therapy is warranted for low ER/PR DCIS remains a question. And ultimately it depends on your risk level after surgery. If you have a 15% risk of recurrence and rather than reduce your risk by ~50%, with low ER/PR, your risk might be reduced by 20% (I pulled that out of the air), would that be worth it to you? Would it be worth it to you if your starting recurrence risk after surgery was 30%?

    Some light reading:

    http://www.clinicsinsurgery.com/pdfs_folder/cis-v4-id2484.pdf

    https://www.current-oncology.com/index.php/oncology/article/view/3238/2413

    https://www.cancernetwork.com/view/predicting-endocrine-therapy-responsiveness-breast-cancer

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC28818...


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  • LivinLife
    LivinLife Member Posts: 1,332
    edited August 2020

    Beesie thank you so much for your thoughtful reply!! Funny how things change - it was just days ago I thought BMX was overkill. As I've learned more - the Grade 3 and comedo-necrosis and not a tiny area from mammogram - who knows what the actual size will turn out to be - I strongly doubt it will remain 3x2.5x1 cm tho who knows. Yes, I appreciate what you said about the benefits of BMX - I've thought a lot about my comfort of doing that. I'm not that much overweight - maybe 5 pounds tho my breasts are so large and now with age - gravity - I do not see me missing them at all really. It's helped me to see other people on this site say that as well. I figured most would feel more the loss and obviously that's true for others. I cannot imagine going with UMX due to being large breasted, asymmetry and what I believe would be physically uncomfortable. I also think b/c I'm large only having one breast would be very emotionally uncomfortable - or to be disfigured in one breast. I doubt I'd be open to lumpectomy with the Grade 3, necrosis, etc. since I'm really supposed to avoid radiation at all costs. My scleroderma doc said "unless it's absolutely necessary" and he does not think it is. I can't imagine he's thinking lumpectomy and AI??? I would not really be comfortable with that. Maybe he's thinking MX is the choice to make? Though I wasn't ready to ask and he's not the one I want to ask anyways. Doc-wise I really just want to talk with my BS and RO next week (Friday), see what they say about my DCIS, recommendations they think are best and then as I've read over and over on this site- I have to make the best decision for me that I'm comfortable with. I'm kind of thinking this might be the hardest part of all of this- deciding which path to take? Thanks so much for all the articles you sent!! I so appreciate that! I'm off work today so am going to do a little around the house and then read them. I appreciate how giving you are of your time and knowledge - willingness to share! I'm actually a psychologist - rarely ask for help and haven't had too many people I could depend on the rare occasion I did. This has taught me different for some reason. People are responding! I have a number of people in my personal life who are showing up in different ways and I'm open to it (not always the case either)! I'm usually the one showing up for others - professionally obviously tho personally as well. I just feel so thankful - I know you get that.....

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  • LivinLife
    LivinLife Member Posts: 1,332
    edited August 2020

    I thought I should reply after reading each article or I'll forget some points... I'm older than I was in grad school : ) "light reading" :) I wondered if you were being sarcastic...yes... It reiterated your point about limited benefit of AI, esp. with MX or BMX certainly. The other main take-away was low positive ER actually being an increased risk factor or more serious marker. Almost adds to reasoning for MX (BMX for me). I will print this (and likely the others which I haven't read yet) to "mark up" prior to talking with my BS and RO next week. They may not ever recommend AI anyways though if so I now have questions and comments. Great article!! Thanks!!

    Edited to add: Ditto for 2nd article which also seemed to speak more than the 1st about limited benefits and increased risk of side effects to your point Beesie....

    I think some of the information in the 3rd article may be helpful as I move forward. I was shocked to see (4th article) the "new" recommendation for 1% cut-off for positives... Mine was less than 5 and it's making less and less sense to me that it's a good thing or for a Tamox or AI recommendation. Interesting on the fixation process and times. I saw the time noted on my path report - now I have more understanding of what goes into that as well. Thanks much Beesie! These will be great references - next week and after!

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