Er+ Pr- her2- survivors?
hi. I’m really reaching out to see if there are any long term survivors of this type of bc. Online Google searches have me pretty scared. I’m 42. My oncotyoe was 21. Node negstive with stage 2A.
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Mine was ILC …. over 20 years ….
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Yunakagome, have the docs discussed your treatment options? I have been BC free for 8 yrs now.
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I had a mastectomy with reconstruction. I just finished TCx4 chemo dec 18. I meet with my dr Jan 5 to talk about the ET which I think will be AI. I want to ask more about the pr piece because no one has mentioned it to me since my diagnosis in June and from what I read I’m so worried now. Research saying it causes a 2-3 fold risk of reoccurrence and much lower survival. Man it’s scary to read about so I just put it away and I’m going to talk to the dr about it. I really wanted to find others who had the same.
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Your docs and treatment are right on! I'd also be interested in what your docs say about your low PR and whether there is additional risk. However you were treated aggressively and I'm thinking you should be optimistic about your treatment outcome! Congrats on accomplishing the hard part!
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I’m completely freaked out. Right now it’s like I can hardly function with the fears. I have two kids 10 and 13 and I’m so upset.
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I'm going to try to address your concerns here, rather than engage in a back-and-forth via private messaging. (I'm sorry if that seems callous, but my home situation is extremely complicated right now, so I hope you understand.)
I can understand your fear of that low "PR" value. My tumor, which was a 1.8 cm Grade 2 IDC, was strongly ER+ but PR-. I don't know/recall the percentages, but those histologic results were confirmed by Oncotype testing. My Oncotype recurrence score was 26. When my oncologist saw that report, I received a call immediately to discuss plans for chemo. I ended up getting 4 rounds of Taxotere & Cytoxan, which were tolerable. Chemo was followed by 10 years of Arimidex/anastrozole. It would have been a shorter regimen, but my oncologist considered me "high risk" so she recommended going all 10 years. (I was post-menopausal before all this, so an AI was the preferred choice.)
If I recall correctly (and I no longer have the relevant articles), when the Oncotype recurrence score is calculated, the PR value is in the denominator of the equation. That means the higher the PR expression, the lower the Oncotype score; and vice versa. A negative PR result bumps that score and corresponding risk up, something that a handful of studies have confirmed. On the other hand, although the PR value does reflect the risk of recurrence, it's not accurate or helpful to rely on PR alone when estimating recurrence risk.
So, your Oncotype score was 21, correct? That's not very high, but you are young, which might explain why chemo was recommended for you. (What did your oncologist tell you about that?) I see that you have already finished 4 rounds of Taxotere/Cytoxan, so that's not what you're asking about. In January, you'll be discussing starting an estrogen-blocking regime. All I can say about that is this: the recurrence risk reported by the Oncotype score assumes that you will be getting that estrogen-blocking therapy. The traditional approach has been tamoxifen or an aromatase inhibitor (e.g., Arimidex), although there are newer strategies now and the plan might be different for a younger woman.
Your oncologist is the one directing the traffic. If you have questions or doubts, he or she should be able to answer those questions. As for whether anyone with an ER+ PR- tumor is still alive, there's plenty of evidence here on these boards. My dx and treatment were in 2008. 😊
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that’s ok @otter thanks for the reply :) did you make any exercise or diet changes post diagnosis? Why did your oncologist say you were high risk?
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@otter i also wanted to ask how you felt stopping the AIs. Was it scary? I am thinking you were pretty confident in the data to do so. How are you feeling now? Did chemo or the AI have any lasting affects on you? Your diagnosis sounds very similar to mine. I read that pr less than 10-% is treated like a negative pr now. And greater than 20% is treated”good” and more lum a like. I’m in between at 15%.
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@yunakagome, I had very few problems with Arimidex/anastrozole. When I first started (summer of 2008), nobody really knew how long to stay on an AI. There were studies underway investigating whether it was more effective in post-menopausal women to start out with a few years of tamoxifen and then switch to an AI. Also, at the time I started, Arimidex and Femara were considered equally effective and the choice of one over the other was based on side effects.
Five years vs. 10 years was a big unknown, so I said I would split the difference (7 or 8 years). Around year 6, the Breast Cancer Index (BCI) came out. It was being used to determine whether there was a benefit in extending AI treatment past 5 years. I didn't do that because it was irrelevant by then. By year 8, my onco was urging me to continue to 10 years. She said she wouldn't have advised that if I hadn't been "high risk."
I've mentally blocked out the 4 rounds of Cytoxan/Taxotere, but you've had that regimen as well so you already know.1 -
@otter why did they think you were high risk? Did you have any pos nodes? I’m am worried I’m high risk also.
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@yunakagome — No, I did not have any positive nodes. I assume my med oncologist considered me high-risk because of my Oncotype recurrence score, which was 26. Scores from 26 to 100 are associated with a high risk of distant recurrence of the cancer*. (I'm glad I was at the low end of that range!) The good news is, the benefit of chemotherapy is likely to be greater in cancers with those higher scores.
I really think you need to discuss your worries with your cancer team, specifically with your medical oncologist. What did your oncologist tell you about your risk level, with vs. without chemo? With vs. without estrogen-blocking treatment? Also, the risks, benefits, and long-term effects, vary with age, and you are younger than I was at my diagnosis. It's critical that you and your cancer team communicate about your concerns.1 -
@otter i have only met with my dr once so far. He said I’m low risk saying oncotype 21 with an 8% risk in 10 years and 5% now where I did the TCx4 chemo. I was given a copy of the oncotype papers and it said 8% on it so he was quoting oncotype. I just don’t believe it to be honest. Because of my pr15%. I don’t understand how all the studies online say 2-3 x risk for low and negative pr yet he was saying my risk was so low. He never mentioned pr to me. I plan to ask lots of questions on Jan 5 appt to see what he says. Jan 5 we’re supposed to discuss the AI because at our first meeting he said he wanted me to focus on the chemo and then talk about the next steps. If anyone else has thoughts on this also, please feel free to comment.
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Yunakagome, IMHO, your ER+/PR+ BC was caught early, you were treated aggressively, your recurrence risk is low. Believe the science, trust your doc (NOT Google), and try not to worry so much. May 2026 be the year of new modern technologies and medicines to prevent and treat this disease once and for all!
Peace and love to all!
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@murfy thank you so much. You’re so kind.
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@murfy that 8% risk was assuming I took an AI or tamoxifen. I don’t know what it would be if I didn’t take it (I plan to take it). The Dr said the chemo brought that 8% down to 5%. If the ET didn’t work as well because of the PR, what would my risk be then I wonder? Because that was a thing I kept reading about with lower PR, is that’s the ET doesn’t work as good. And also that low PR usually has high ki67%. My dr is going to tell me mine when I see him because he sent for my ki67% to be done. He is estimating mine is 20% as a guess but we don’t know for sure yet. I think I read over 14-20% is high?
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Yunakagome, your low Oncotype score suggests functioning ER and, therefore, AIs or TAM should work great for you. After treatments, my risk went down to 12% and I'm happy with that. I'd be ecstatic with 5%! I believe that >30% is the threshold for high Ki67; mine was 55% and I chose that to mean that it responded well to chemo, which is very effective in fast proliferating cells. 8+ years later all is well!
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@otter thanks for the message. I just don’t think my risk is 5%. Oncotype says 5% but that low PR has got to increase it…. I plan to update you all when I talk to my dr and let you know his thoughts on it. Thanks to everyone who’s been writing me :) The support feels so warm.
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@otter hi, I saw my doctor today and told him about my worries about the PR situation and he said to me that he wouldn’t change what he said to me previously about the fact that I’m low risk and have a 5% chance of recurrence using AI after the chemo. He did acknowledge that lower pr do have a higher risk than luminal a but he said he wouldn’t change my specific risk score based on the lower pr and the stuff we talked about Today. He also said that I would not be able to take a parp inhibitor (brca2+) because I’m not high risk enough and he doesn’t feel the risks and benefits would weigh out properly and he said the same thing about the CK4 inhibitors.
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I told him that I’m having trouble understanding how I can have a 5-8% risk in 10 years when I’m Lum b. He said that’s why we’re doing AI and not TAM but didn’t feel my reoccurrence risk was higher than oncotype quoted.
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Your scores and genotype do not suggest luminal B. Your doc sounds reassuring with good reason! You've got this!!
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@murfy my MO tells me I’m lum b because of my PR. My ki67% came back as 25% which sounds high? My MO says I’m lower risk given my treatments and according to oncotype. He said he thinks I have a good prognosis. I pray he’s right.
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