Single Hormone Receptor Positive -> ER+/PR-/HER2-
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Hi Beesie,
Thank you so much for all of that information. You are such a gem! I find your knowledge and analysis really helpful. I think everything you described is part of why my MO said my case is tricky and that one of the factors even at the point of hormone therapy will be “whether or not we consider you high risk”.
To your points and in case it’s helpful to anyone else for comparison, my case had the following stats:
Tumor Size: 1.5cm on MRI, 1.3cm on US and 1cm at excision at surgery (I mention these differences because you may remember I was in a study taking Ibrance alone for the 12 days before surgery and MO said it’s possible that could have shrunk the tumor slightly but we can’t know for sure.)
Nodes: negative
Hormone Status: >90% ER+, 1% PR+, HER2-
Grade: 2
Mitotic Rate: 1
Ki67: <5% but MO thought this could be an underestimation because of the Ibrance - we’ll never know because my biopsy missed the tumor!
All of that said my Oncotype came back at 17 (And you may remember Oncotype suggested my PR may actually have been somewhat higher) Even if there were no effects of Ibrance on my Ki67 that score of course put me unfortunately in the range for at least considering chemo.
So what I’ll hope for is the possibility that I’m technically not Luminal B or that it is a moot point since I decided to do chemo as much as I really didn’t want to!
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I had my first radiation treatment today and I feel extra emotional, but in reading these posts, I believe I may fall into the ER+ PR- HER- category.
I have a surgical pathology report from the biopsy, but not one from the surgery. Do they do it for the surgery as well?
My biopsy report says: ER Percentage score(0-5) 5 (67-100%) Intensity score(0-3) 3(strong) Allred ERA Score (0-8) 8
PR: Tumour on stained slide too small for interpretation
HER2 overexpression Negative, see comment: 0
Comment: ER stains well on internal controls. blah blah blah Recommend repeat ER, PR and HER2 on excision as tumor volume on stained slides is very low.
So, does MO have pathology report from surgery? I was never given any paperwork.
I am seeing an ND tomorrow-she requested my records, but I am really confused and upset, wondering about the er+pr-her- . No one has addressed the PR-..
Thank you if you have any thoughts...
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toria, sometimes ER, PR and HER2 is repeated on the surgical sample, and sometimes it isn't. In your case, it sounds as though it had to be, because the biopsy sample was to small to get any result for PR and the result for HER2 is considered unreliable.
Based on the info you provided, you cannot assume you are ER+/PR-/HER2-. The ER+ sounds as though it's the most reliable result, but no result was given for PR and the HER2- could be subject to change with a larger sample. That said, since you aren't getting chemo, it's probably safe to assume that you are HER2-. But the PR is still up in the air.
You need to get a copy of your surgical pathology report to be able to more fully understand your diagnosis.
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Thank you. I am going to call in the morning and request the report. I have myself in a tizzie over this-so emotional lately. Post-surgery has been much harder on me. Pre-surgery I was obsessed with covid maybe? I dunno
Thank you for the suggestion. xx
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Toria, that you are Grade 1 is a good sign and suggests you had a less aggressive tumor even if PR-. Would also suggest that you ask for a copy of your surgical pathology report for your records. Good luck with your treatment!
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It looks like I'm joining this little "club" of single hormone receptor tumors. Mine was 2.0cm, tested weak ER+ (1-10%), PR-, HER2-, grade 3, Ki-67=80%, 0/5 nodes, clear margins.
I haven't met with my MO, yet...my appointment is Friday. I did have my local pathology verified by MD Anderson and they concurred, so that makes me confident that my tumor was what it was. An Oncotype or Mammaprint hasn't been ordered, but with the high grade and high Ki scores, I'm wondering if I should bother pushing for either?
I also wanted to say "thank you" to everyone who has contributed to this thread, you have all been extremely helpful!
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hi blusteryday, sorry you had to join our club but you will get so much support here. Is there any chance your tumor was automatically sent for oncotype? Glad you had the pathology verified.
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I confirmed yesterday that MDA has not sent it for Oncotype, which really was disappointing to hear. I just "assumed" (we know what that means) that it HAD been ordered and sent already. I meet my MO this Friday, and am trying to decide how "pushy" I need to be on this front.
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Hi Blusteryday,
I'm sorry you find yourself here but hopefully like me you'll find these boards a wealth of information. I am certainly not an expert and have not been here too long but have done quite a bit of reading so here's my two cents for what it is worth. While your ER is technically positive, given how low it is combined with your high KI-67 I would guess that your doctors will propose treating you aggressively, as if your tumor is Triple Negative such that chemo will most certainly be recommended. I'm not sure if Oncotype or Mammaprint will be relevant/applicable with such low ER. Regardless, my understanding is that those tools are typically used to determine if chemo will be beneficial but in your case I think doctors can answer that just based on the tumor biology you already described. While I would imagine no one wants to have chemo if they can avoid it, speaking from experience (I'm in the middle of my treatment now) it is doable. Also, I've read that even though your tumor might be aggressive, those are the kinds that can respond very well to chemo. Hope this is helpful! The early days of waiting for results and treatment decision making can be tough so do hang in there!
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Hi Blusteryday - sorry you’re going thru this ! Personally, I would try to get an Oncotype / Mammaprint. I had the Oncotype test (my doc sent this automatically). I felt it was one more piece of information to assist in my treatment options and decision.
BTW - until I received the Oncotype, I was thinking I wouldn’t have chemo since my BC was discovered early. I was 58 years old, high ER%; Grade 3, no nodes. The Oncotype result was high. After that result, I couldn’t start chemo (Cytoxan & Taxotere) quick enough! I don’t look back with any regret on that decision. Good luck to you !0 -
Hi Ladies, I am ER+, PR-, Her2- but I haven't heard from any MO that it may be a problem. Why would different from ER+, PR+?
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hi lilly, many MOs skirt around the issue because it really doesn't change the course of treatment. If you are into statistics having lower/ neg PR is less favorable than being PR positive.
The times it becomes tricky is when ER is really low, PR neg, her2 neg. The chemo regimen is different for triple neg vs those that are positive
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Lilly,
I noticed you have LCIS/ILC which may be gave differently than IDC so maybe this is a reason it might not have been mentioned?
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Thank you for getting back to me. In my report it says ER: POSITIVE (90%, MODERATE), PR: NEGATIVE (<1%, STRONG), HER2: NEGATIVE (1+). When I asked MO, he said ILC is treated like IDC. I guess there are no other treatments for ILC alone. But having ER+ only makes me wonder.
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Blusteryday, I agree with KeepingCalm. With a 2cm tumor that is grade 3, with very high Ki-67 and very low ER, I think your MO is in effect treating your diagnosis as triple negative and has decided that chemo is required no matter what, making the Oncotype and Mammaprint tests unnecessary. These tests will either result in a high score, which would confirm the need for chemo, or a low/intermediate score, which would be highly discordant with the pathology and would create confusion about what to do.
As for what your Oncotype score might be, the Oncotype formula puts a lot of weight on ER and PR, so your low ER and negative PR will automatically drive the score up. In fact looking just at the PR- without consideration to the ER%, in the TAILORx study less than 3% of PR- patients had a low Oncotype score, whereas over 42% had a high Oncotype score. Ki-67 is another significant driver of the Oncotype score, and although the TAILORx appendix didn't break out Ki-67 % against Oncotype scores, from reading this board, having a such a high Ki-67 usually drives a high Oncoype score. Lastly, there is grade. In the TAILORx study, less than 7% of patients who had grade 3 tumors had low Oncotype scores. So while it's impossible to know what your Oncotype score would be, it's a pretty safe bet to say that you wouldn't get a low score, which normally comes with a "no chemo" recommendation. You might get an intermediate score; at your age that would mean a "consider chemo recommendation", and your pathology would tip the scale towards chemo. A high Oncotype score would of course come with a chemo recommendation. So while I completely understand your interest in knowing your Oncotype score, my guess is that your MO is absolutely certain that your score would not change the treatment recommendation, and for this reason did not send a tissue sample in to Genomic Health for testing.
Lilly, I think Deb is right that many MOs skirt the PR- issue because the treatment protocol doesn't change. But studies have shown that PR- cancers are more likely than PR+ cancers to be larger, more likely to be grade 3, and more likely to be node positive. As a result, the long-term prognosis for ER+/PR- is less favorable than it is for ER+/PR+. I don't know if being PR- itself as an independent factor that drives the less favorable results (I'd have to dig back into the research to see how it is referenced) or whether it's these other factors (higher grade, larger tumor, positive nodes) that causes this difference in prognosis vs. PR+ cancers. Of course this is talking about an "average" PR- patient, and individual experiences can be completely different. It's very possible that someone could be diagnosed with a small PR- cancer with no aggressive features. But overall, being PR- isn't as good as being PR+.
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Beesie, there've been at least of couple of papers showing that PR- is an independent prognostication of less-than-stellar prognosis. One paper showed that PR-, grade 1 or luminal A subtype was not different from PR+, while PR-, high grade/Ki-67 or luminal B had the less stellar prognosis. It may ultimately boil down to what is the cause of the PR-. In Blustery's case, perhaps her low ER is responsible, making her borderline TN. Too much we don't know...
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Murfy, thanks very much for that information!
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Thank you Beesie. I had a small tumor but I was node positive too. Also ILC complicates it.
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In one large study it was determined that PR- in ILC is not as much a long term prognostic factor as compared to PR- IDC. That study showed that Ki67 was a greater prognostic factor for later reocurrence. For ILC Pr- was not a significant factor after 5 years.
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Thank you all for your input and guidance. My appointment today went as well as could be expected. My MO made the comment that he thought about calling me on Wednesday to discuss ordering the OncotypeDx, but decided he'd wait to talk to us first. He suspects I'm triple negative and is almost certain the ER expression is negligible. He considers anything <10% as "negative", but wanted to test to make sure. He is going to expedite the process and call me when he gets the results, or see me on 7/10...whichever comes first. Yet another "sit back and wait" period, again...
I've decided I'm going to try to relax and enjoy my body in the "healthy" state it currently is in, before the next round of treatment begins. I'm finally healing up from surgery and feeling closer to "normal" again.
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blusteryday- Interesting..... My MO considers anything above 0 to be positive so with an ER of 3% and PR -, I have been taking Exemestane for nearly 3 years.
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Interesting, Bravepoint. In my case I've got >90% estrogen + (and so will definitely be doing some sort of hormone maintenance treatment at the end of chemo) but 1% progesterone +, so even though technically positive for progesterone, my MO said we had to consider that essentially negative in terms of informing the chemo decision for me, which I'm doing. In the case of estrogen positivity though, it stands to reason that one could argue there could be some benefit to estrogen modulators for even a small percentage that might be positive. Presumably there's research on this I just don't know it!
Bravepoint, if you don't mind my asking, were you post menopausal before diagnosis? I'm curious what my path will be since I am currently 39 ... MO said we'll talk about that after chemo and have to make a guess as to how high risk she thinks my situation is in terms of whether or not ovarian suppression should also be considered.
Blusteryday, you have great insight in terms of trying not to worry while you're in this holding pattern. I probably spent too much time worrying and now that I'm amidst chemo realize that during the time you're feeling good you should definitely do your best to live your life!
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Bravepoint, I'm not sure why he considers <10% as "negative", but I'm thankful he is sending my tumor off for Oncotype to verify the suspected recurrence possibility/aggressiveness. I found in my preliminary path report the following: "The vast majority of the tumor is negative for estrogen receptor, but a small number of tumor nuclei show weak positivity". That sentence offered me some clarity that my tumor is very weak ER positive.
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KeepingCalm - I was 53 at the time of diagnosis. Chemo through me into menopause.
Blusteryday - I struggled with the ER % as I didn't think an AI was really necessary with such a low positive %. I decided to take on both of my oncologists advice. The SEs are there but tolerable.
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My wife has been struggling recently with trying to lose weight, even on a calorie deficit diet, and with her mood. She had an oophorectomy and is taking Letrozole. At time of diagnosis (2-years ago), she was not in menopause but two of her oncologists recommended the oophorectomy and AI treatment because of her PR being negative. Her OBGYN has recommended DHEA and low doses of testosterone, progesterone, and estriol (estrogen). My wife discussed how these would interact with her AI, as well as recurrence risk and the OBGYN said what she was prescribing was safe. After reading some, I'm not sure this is the case. Has anyone discussed taking some or all of these treatments with their MO and have any guidance to share?
Thank you.
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The OBGYNs recommendation might help with mood and weight in a menopausal woman, but would likely be contraindicated in a woman taking letrozole to prevent BC recurrence. DHEA and Testo work on mood and weight following conversion to estrogen, but letrozole would block that rendering DHEA and Testo ineffective. Your wife's cancer treatment is aimed to lower estrogen, so giving estriol is usually not advisable. Progesterone is typically ineffective in the absence of estrogen. I would discuss with your oncologist first and/or get another opinion about taking steroids.
In my case, surgical menopause caused a change in fat distribution to around my waist and mood swings. However, with time and a few lifestyle changes (ie, yoga, tai chi, walking regimen, low sugar and all organic), I'm in a better place. Of course about a year on AIs my weight was creeping up again and I'm now practicing intermittent fasting with great results.
Best of luck to both of you....
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Thank you. She has an appointment with her oncologist next week for the results of her 6-month scan, so she plans on discussing these issues then. I was surprised that the OB was adamant that the prescribed treatment was safe, after reading some about it.
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In case anyone else has a similar question about whether taking DHEA and low doses of testosterone, progesterone, and estriol (estrogen) for issues with weight management and mood, the MO said she could absolutely not take this. He was actually shocked an OBGYN with knowledge of her breast cancer diagnosis would recommend and say this was safe to take. Some studies show this to negate the effects of the AI medication.
On a different topic, he did suggest that she could try Tamoxifen as a possible way to solve some of her current issues. I am a bit reluctant because when we discussed her initial diagnosis with her two MOs at the time, both recommended going with a more aggressive treatment with hormone therapy because of her negative PR. So she had an oophorectomy and started with an AI. He did say her recurrence risk could increase from 6%, where it is currently, to 7% with the change in medication.
Is anyone with negative PR taking Tamoxifen, or have any insights their MO may have shared about the right hormone therapy with negative PR?
Thanks.
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I know that AI better reduce your recurrence risk then Tamoxifen, so it depends on how severely her SE's are messing with her life to take that chance. There is ZERO way she should be messing around with any sort of hormone therapies. Yikes!
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