Is ER-/PR+, HER2+ rare?

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!

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!

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.

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.

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.

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.

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 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.

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