Is ER-/PR+, HER2+ rare?

Aleksandra30

Hello! I am recently diagnosed and I just received my core biopsy results, which show ER-/PR+, HER2+. I cannot really find much information about it online, therefore I am turning to you for help. Is anyone out there with similar diagnosis? What does this mean for my treatment and future?

Thank you!

ElaineTherese

Hi Alexsandra!

About 25% of breast cancer patients test positive for an overexpression of the protein HER2, which encourages the cancer cells to divide and divide and divide. That's why HER2+ breast cancer is typically Grade 2 or Grade 3 and is considered aggressive. About half of the breast cancer patients who test positive for an overexpression of HER2 also have cancer that is fed by hormones (ER+/PR+). Hence, triple positive BC patients typically get BOTH targeted therapy for the overexpression of HER2 (Herceptin and Perjeta [if tumor is bigger than 2 cm]) and hormonal therapy (Tamoxifen or an aromatase inhibitor) to starve the body of the estrogen that has been contributing to the development of cancer cells.

So, about half of HER2+ breast cancer patients have diagnoses similar to you (or 12.5% of the breast cancer population overall). Since you are ER-, you are unlikely to be a candidate for hormonal therapy. So, that treatment option is not available to you.

In the past, testing positive for an overexpression of HER2 was a bad thing. Compared to HER2- patients, fewer BC patients who had HER2+ cancer were still alive, five years after diagnosis. However, with the development of targeted therapy (Herceptin and now Perjeta), the survival rates of BC patients who are HER2+ are about the same as for other BC patients. That is to say that over 90% of HER2+ cancer patients who were diagnosed at Stages I and 2 are still alive after five years, and that over 75% of HER2+ cancer patients who were diagnosed at Stage III are still alive after five years.

The big difference between the HER2+ and HER2- crowds is the length of active treatment. For example, I had five months of chemo (AC + THP) and then a year of Herceptin after that. It's a marathon, not a sprint.

((Hugs)) and best wishes!

Aleksandra30

Hey ElaineTherese!

Thank you so much for the answer!

Since my tumor is less than 2cm I may not qualify for Herceptin and Perjeta (based on your response) and I do not qualify for hormonal therapy as well?

I have read a bit about HER2, but I know that ER - with PR+ is rare and is treated similar to triple positive cancer (from what I read). I also found an article that says that positive/negative diagnosis may be wrong and will eventually become either double positive or double negative.

ElaineTherese

Hi!

No, you WILL qualify for Herceptin for a tumor that is smaller than 2 cm. However, the national guidelines specify that Perjeta is only recommended for tumors that are 2 cm or more. Sorry; that was confusing. I should note that some oncologists order Perjeta for breast cancer patients who do have tumors < 2 cm, but they might have to work harder to get insurance to cover it.

Yes, you may get hormonal therapy for ER-/PR+; I really don't know much about that variant. I do know that breast cancer patients who are ER-/PR- typically don't. Also, yes, the details of your breast cancer may change after surgery and the doctors are able to examine more of the tumor. (A biopsy only takes a sample.) However, if you do neoadjuvant (before surgery) chemo, your tumor may disappear (as mine did).

Best wishes!

exercise_guru

Alek It really depends on where you live. I had a tumor that was smaller and I had surgery then chemo. this disqualified me from perjeta but I did have TCH chemo. If I had chemo then surgery I suspect I could have gotten perjeta but this option wasn't offered to me. Also I suspect you will also be offered Hormone therapy. They also did not do a mammoprint on mine because of the HER2 but I did have a sentinal node biopsy to make sure that the nodes were negative.

I think the take home is to have a list of questions when you go to your MO and advocate for yourself. I personally would want Perjeta I think I should have gotten a 2nd opinion.

MinusTwo

I was ER/PR negative but HER2 positive. I agree that you should advocate for chemo before surgery since that's the only way you're likely to get Perjeta. Even if you don't get approved for Perjeta, the neo-adjuvant chemo with Herceptin seems to be the new preferred care for HER2+ cancers.

Edited to add, you will need an MO (medical oncologist) for the chemo.

Aleksandra30

Thank you all ladies for responses!

ElaineTherese: Is Herceptin for tumors less than 2cm and Perjeta for bigger ones? Am I understanding this correct?

This is amazing that your tumor disappeared without surgery! Does this mean that they never took it out? I was under impression that they have to removed it entirely and biopsy it to know exactly what we are dealing with.

Exercise_guru: I live in New Jersey. I will have a lot of questions here because this all is still very new to me. Why do you say that having HER2 excluded you from the possibility of doing mammoprint? As far as the questions go, I am not sure what I am dealing with right now. I was diagnosed 8 days ago and this is all a bit too much information for me to understand now. I felt the lump in my left breast about a month ago. I followed up with obgyn who sent me to do ultrasound and memo. That was followed up week later by core biopsy (they removed 5 tissue samples from two lumps in my left breast). One of the lumps came back as IDC, grade 2 (not stage specified). My doctor sent me to breast surgeon, I will be seeing on the 17th. It is my understanding that they will want to schedule a surgery to remove the tumor (size: 18 mm). What kind of questions I should ask them? Finally, why do you regret not being able to take Perjeta? What are the benefits of it that other medicine do not offer?

MinusTwo: Should I find oncologist before I see my breast surgeon? I was told that before removing the tumor, we do not know what we are dealing with for sure, and therefore I would be most likely recommended the surgery. I am not sure if I do not harm myself by refusing the surgery. My HER2 level (not sure if this is the right word?) was 4.6.

Thank you again all for help! HUGS!!!!

ElaineTherese

RE: Herceptin, Perjeta -- Breast cancer patients with HER2+ cancer that is > 5 mm are typically offered Herceptin. Breast cancer patients with HER2+ cancer that is > 2 cm may receive Perjeta in the United States as part of pre-surgery (neoadjuvant) chemo. So, as you can see from my signature, I got both Herceptin and Perjeta. Again, some BC patients have been able to get Perjeta in other circumstances; it is considered desirable because it is the latest targeted therapy for HER2+ breast cancer and is considered to be a powerful medication.

Yes, indeed, chemo wiped out my lump but that doesn't mean that I didn't get surgery. Just to be sure that the scans (MRI and PET scan) were accurate, my surgeon removed a golf-ball sized amount of tissue that surrounded the surgical marker inserted at my biopsy. Then that tissue was sent to pathology which confirmed that there was no active cancer left.

Because my lump disappeared, we may never know my true stage. However, we suspect that I was Stage III (lump was bigger than 5 cm on MRI + I had one compromised node), so we assume that's what I was.

Aleksandra30

Thank you so much! It is much cleared now. I am at 18 mm, so hopefully I could qualify for both. This is really amazing! How did you know how many nodes were compromised?

ElaineTherese

I had both a breast MRI and a PET scan before chemo; one node lit up and was enlarged. The radiologist then performed a fine needle biopsy after locating that node via ultrasound. It tested positive for cancer.

But all the other Levels 1 and 2 looked normal; I had all 20 removed during my lumpectomy and they were found to be cancer-free.

Aleksandra30

This is amazing! You are truly making my day

MinusTwo

Yes, I too had an MRI & CT with contrast and also a PET/CT before surgery.

Aleks - it was my choice to find & interview an MO before I did anything else . Since you're HER2+ which would likely lead to neo-adjuvant chemo (before surgery), you should talk to your BS and indicate you want to have an MO on board to discuss the total treatment plan. If you meet with any resistance, I would find another BS for a second opinion.

Surgeon's cut. Oncologists look at the entire pattern of treatment. Most of them work together and many even present your 'specs' to a tumor board before any treatment. Also if you're thinking about reconstruction, you'll want to find & interview a PS (plastic surgeon) & make those decisions before any surgery.

Aleksandra30

Hi MinusTwo: I am seeing my surgeon on Monday and I will ask her all these questions. I probably will be treated in Englewood, NJ Breast Cancer Center, however I reached out to another Breast Cancer Center by Rutgers University to have them as a back up. I hope that they will be able to schedule MO visit for me soonish since it has been over a week from my diagnosis and no one even told me about getting PET scan. I wanted to be proactive and went ahead and scheduled MRI before I see the surgeon. Do you think I will need a plastic surgeon if I only do lumpectomy?

exercise_guru

I have a little bit more time to post now. I was told that when the tumor came back negative for ER/PR but positive for HER2 that was a good thing because I had Herceptin as an option. I think its important to know that there are many tumors that only a fraction of them are HER and only a fraction of them are ER or PR meaning these elements are found inside the tumor even if its not he entire tumor. I think the one in my left breast was like only 3% ER or maybe it was PR but in any case Chemo was pretty much a guarantee because of the HER. f your young it is worth it to try to find out about Genetics because th

MinusTwo

Alek - most docs won't do a PET/CT and most insurance companies won't pay for it - so don't be disappointed if you don't have one. I'd put meeting with an MO on top of the list and start listing questions for that visit. Don't borrow trouble too far down the road until you meet with the MO.

ElaineTherese

MinusTwo is correct; only a small number of us get PET scans. I got one because my tumor was big and Grade 3. I did not get plastic surgery with my lumpectomy, but some breast cancer patients do. I am a C-cup, so a lumpectomy didn't have much of an impact on my affected breast.

ChiSandy

To answer your original question, yes—ER-/PR+ is relatively rare. In fact, even ER+/PR+ being more highly positive for PR (in my case, 97%) than ER (75% for me) is pretty unusual. Had the percentages been reversed, my OncotypeDX score would likely have been lower (though at 16 it was still considered “low-risk,” especially at my age).

So why would you even get anti-hormonals? Because progesterone (also a female hormone) seems to play a greater part in tumor-cell behavior than previously thought, and can help an AI or SERM work better. (That is why Luminal A cancer—ER+/PR+/HER2- is considered less aggressive than Luminal B—ER+/PR-/HER2-). Because you are HER2+, the downside is that you’re not a candidate for genomic (OncotypeDX, MammaPrint, Prosigna) testing—they are for Luminal A (& rarely Stage I cancers with 0-3 positive nodes when the tumor is in a “gray area" as to whether to prescribe chemo; and they are used not just prognostically but to guesstimate the likelihood of chemo’s benefits outweighing its risks, or if the tumor would even be aggressive enough to be vulnerable to chemo. But in your case, chemo is already a given, because targeted therapy is usually started concomitantly with chemo and then continued for a year after chemo is over. The upside is that you can get targeted therapy, one more weapon in the arsenal that will improve your chances.

livebig

I am ER-/pr+ her2+

However my PR is only slightly positive - 4%, so my onc is basically treating me as hormone (PR-) negative.

Do you know what percentage PR you are?

And just to encourage you - my tumor was huge, and 6rounds of neoadjuvant TCHP totally knocked it out. I'm now NED.

Stay positive! You are doing right to educate yourself and ask questions. Keep that up always! Wishing you the bes

Aleksandra30

First of all, thank you all for responding! I know I have a lot of questions and sometimes I do not even know how to ask them correctly. Thank you for being here and being so caring and patient

Exercise_guru: Could you please tell me what you mean by Genetics because your sentence got cut off? I am a bit disappointed that they didn't have me see the oncologist or at least schedule one. Almost a week and a half will pass by the time of my appointment with surgeon and I do not want to wait another dreadful week to see MO.

MinusTwo: I will def insist on seeing one. Problem is no one even offer this. Surgeon seems to be normal path to follow where I live (I even checked with my obgyn and she confirmed). It is unfortunate about PET, I will try to ask the surgeon about it.

ElaineTherese: I am a DD, but I think I will want to see someone at some future point of course. It may be too early now, there is still so many things I don't know and I am trying to wrap my head around all of it.

ChiSandy: Thank you for more inside into the ER/PR status. Do you know if there is any genomic testing available for Her2 positive patients that may determine the risk of reoccurrence?

Livebig: Thank you for encouraging words! I am trying to stay super positive and carry on with my life. Also, trying to be as much prepared as I can for my Monday visit. It is amazing about news about your tumor size and therapy results! Is there a reason why you didn't go thru targeted treatment? I am attaching the biopsy results. I think I am 1% PR and 0% ER if I am reading this correctly.

Aleksandra30

Hello ladies,

I seem to be unable to find anything about this P53 (all the way at the bottom of the biopsy), tested at 91%. Anyone can help me with that?

Thank you!

exercise_guru

sorry Aleksandra phones are useful but mine has a mind of its own when I type on it.

I originally had a left tumor that was pretty much the same pathology. Because of my age (42) ths insurance paid for genetic testing . This factored into my decision for a DBL mastectomy.

Now about herceptin and perjeta. My MO wanted it but since I was given surgery first my insurance wouldn't cover it and it's not standard of care post op for node negative. But the upside is they got everything out and the nodesign were clear. I hope if there was anything anywhere the Chemo kiled it.

Aleksandra30

Hello everyone,

I got a very good update today. I went to see surgeon and she seems very positive about my future. They don't see anything in lymph notes on MRI and she classified the cancer as stage I. She told me to not worry too much about P53 and ER/PR status as they are very low either way (0% and 1%). MRI did change the size of the tumor to 2cm and I do qualify for both Perjeta and Herceptin. I will also start with chemo after I talk to fertility specialist. Things are looking good and I am very happy today! Finally I got some clarity!

Hugs,

Alek

ElaineTherese

Glad to hear you had such a productive meeting with your surgeon! You asked above about genomic testing -- will you get tested for BRCA mutations? That could have an impact on your surgical options. Many breast cancer patients with BRCA mutations choose to get a bilateral mastectomy and an oopherectomy. Since I tested negative for BRCA, I was fine with just a lumpectomy.

Happy that you qualify for Perjeta! I was happy I was able to get that, too.

Aleksandra30

Hi ElaineTherese!

I did get the blood drown yesterday for genetic testing and since we are starting with chemo, not the surgery and we have more time, they will test for more mutations and genes (since I am only 30). I will also see fertility doctor tomorrow to start egg freezing process going. I finally have more answers, which makes me very happy!

Aleks

Meow13

bump

Aleksandra30

Hi Meow13! It seems that my intial diagnosis was more ER-/PR- than what I inially thoguht. They consider this negative and in my over two year treatmnent, they have never considered me hormone positive.

Meow13

New member is looking for others with actually er- pr+ and her2 negative. Couldn't find anyone or threads.

Aleksandra30

Do you know her PR/ER %?