Her2 positive

Hi Ellen, and welcome to Breastcancer.org. We're sorry that you had to find us, but glad you did, and hope you get responses from other community members soon.

Worrying about cancer coming back is one of the most common cancer fears after treatment, as you can read in the article Common Breast-Cancer-Related Fears. Every individual and every cancer is different, so it's important to talk with your doctors about your particular chances of recurrence and receive regular follow-up tests to see how things are going.

Please keep us posted on how you're doing.

Best wishes,

From the Mods

Thank you so much! I already have a list with questions.....

I wish the best for all of us!

Thank you Jen! It is a hugrshock to learn that you have cancer! I didn't know how to handle this mentally! I have 3 kids and this is my first concern... thanks for your respond!

I wish you from the bottom of my heart all to be good with your surgery! I will pray for you!

Ellen

Dear Ellen12345, Just live like you are the luckiest woman on earth and that it is never coming back. Unfortunately I believe that the statistics are a crapshoot and you just happen to be the person that gets a rogue wandering cell that sets up housekeeping in one of our major organs.

For all that do become metastatic, many many more do not

CENOK,

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.

In the past, testing positive for an overexpression of HER2 was a bad thing. Only 40% of 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.

By the way, I live in Norman, OK. I was too lazy to drive to OKC, and just went to a local cancer clinic. It was fine.

((Hugs))

Thank you Elaine Therese and Beatmon.

I neglected to say that I am ER negative, PR negative, HER2 positive. I am struggling with all these terms. 3+ was also on the report. That is what is confusing me. I think it means the protein levels are high enough to define it asHER2 positive?

I still haven't been told, but do assume, HER2 positive means my DCIS is invasive.

Elaine Therese (Therese is my confirmation name!) is the ER negative and PR negative a good or bad thing?

Beatmon, I am reassured by your posts.

I do apologize for asking questions when I don't have all the details

Can't wait to get the appointment at OU. MY PCP has FAXED in the referral and path report to OU Breast Institute but they are closed until Tuesday.

Hi CENOK2017:

You mentioned: "I was first told DCIS, and then sample sent out for further testing. Just found out today that pathology report came back HER2 positive." Later on you note: "I still haven't been told, but do assume, HER2 positive means my DCIS is invasive."

Pure DCIS is by definition "non-invasive".

Unless you were told that invasion has been definitively identified, then your assumption about having additional invasive disease may not be correct.

- Under clinical consensus guidelines from the National Comprehensive Cancer Network (NCCN) for Breast Cancer (Version 2.2017), apparently pure DCIS (with no evidence of invasion) is typically tested for ER and PR status (but not HER2 status).

- Under NCCN guidelines, invasive breast cancer should be tested for ER, PR and HER2 status (when feasible).

Although NCCN guidelines do not recommend HER2-testing of apparently pure DCIS (because HER2 status has no impact on treatment recommendations for pure DCIS that is HER2-positive as explained in more detail in this post), some institutions do perform HER2 testing on apparently pure DCIS. Because of this variation in practice, it is not clear based solely on the reporting of HER2 status whether you have either: (a) apparently pure DCIS; or (b) DCIS plus some invasive breast cancer.

In due course, please be sure to obtain complete copies of all pathology reports (including any supplements or addenda thereto with ER, PR and HER2 test results), so you can see whether any invasion was identified or not, and which tests were performed and on what type of disease(s).

BarredOwl

[Edited to add: Those found to have pure DCIS (based on the combined pathology findings from all biopsies and surgeries), are never treated with chemotherapy plus HER2-targeted therapy under current guidelines (regardless of HER2 status). However, such patients may be candidates for endocrine (anti-hormonal) therapy (e.g., Tamoxifen, an Aromatase Inhibitor) if the DCIS is ER+ and/or PR+).]

Hi CENOK2017:

It sounds like they did not make clear to you whether further testing identified any invasion or not, so clarification is needed.

By the assessment of the pathologist, DCIS (Stage 0 disease) is confined to the inside of the ducts, and has not invaded the surrounding breast tissue ("non-invasive").

The pathologist uses special stains to assess the integrity of the myoepithelial cell layer surrounding the ducts. If they can see that cells have broken through this layer into the surrounding breast tissue (an area of "invasion"), then the diagnosis becomes invasive breast cancer (Stage IA or higher). When the size of the invasive tumor is ≤ 1 mm in greatest dimension, it is considered "microinvasive" disease (abbreviated as "T1mi").

If it turns out that an area of invasion was identified (which is not clear at this time), be sure to write down the features of the DCIS and of any invasive disease (if present) separately.

- For the DCIS: What is the estimated size, grade, architecture (e.g., solid, cribiform, papillary); ER and PR status, (and HER2 status if assessed)?

- For the invasive disease: What is the estimated size, grade, histology (e.g, ductal, lobular) ER, PR and HER2 status of the invasive disease?

HER2 status can be determined using different methods:

(a) Immunohistochemical methods ("IHC"), which detect the HER2 protein over-expression); and/or

(b) In Situ Hybridization methods (e.g., "FISH", "CISH"), which assess HER2 gene amplification).

If HER2 status is determined by validated IHC, then under applicable 2013 ASCO/CAP guidelines for HER2 testing, the result is reported as:

0 ("negative") OR

1+ ("negative") OR

2+ ("equivocal") OR

3+ ("positive") <============ "3+" or "+++" indicates HER2-positive status

The waiting and worrying is very hard. I felt much better once I met with the breast surgeon and hope you do as well.

Even if you get a good explanation from the surgeon, as best practice, be sure to obtain the written pathology reports for your review and records and confirm verbal information against your written report.

BarredOwl

Hi astyanax66:

There is a more general Forum for those with HER2-positive invasive breast cancer here:

https://community.breastcancer.org/forum/80

In that Forum you will find a variety of threads pertinent to specific regimens and to specific types of disease. For example, there is a thread for those with "triple-positive" invasive breast cancer (i.e., ER+ PR+ HER2+) here:

https://community.breastcancer.org/forum/80/topics/764183?page=1173#idx_35161

Those with smaller, node-negative (pN0), HER2-positive invasive tumors might receive a recommendation for a regimen of paclitaxel (TAXOL) plus trastuzumab (HERCEPTIN). There is a thread for those on a paclitaxel (TAXOL) + trastuzumab (HERCEPTIN) regimen here:

https://community.breastcancer.org/forum/80/topics/849280?page=8

By the way, the question of systemic drug treatments (chemotherapy, HER2-targeted therapy and/or endocrine therapy) is within the area of expertise of Medical Oncologists (not surgical oncologists), and you most certainly should request a referral to a Medical Oncologist to obtain expert advice regarding systemic therapies.

Best,

BarredOwl

=======================================================================

By the way, most of the people posting here are in the wrong place. This Forum is:

Forum: DCIS plus HER2-positive Microinvasion

Thus, this Forum is for people with a very specific diagnosis:

(a) DCIS (of any size and of any ER, PR and (if tested) HER2 status);

plus

(b) HER2-positive invasive breast cancer that is "microinvasive" meaning that the largest invasive focus is "T1mi" in terms of size:

"T1mi" = Tumor ≤ 1 mm in greatest dimension