We are 201,675 members in 81 forums discussing 147,028 topics.

Help with Abbreviations

All TopicsForum: DCIS plus HER2-positive Microinvasion → Topic: Her2 positive

Topic: Her2 positive

Forum: DCIS plus HER2-positive Microinvasion —

Meet others with this diagnosis.

Posted on: Aug 24, 2017 12:15AM

Ellen12345 wrote:

Hi ladies!

I'm new here! I was diagnosed with breast cancer her2 positive in June! I already did my 3rd chemo, totally will be 6. After that I will have double mastectomy and reconstruction! I was wondering if any of you knows about the chances of the Beast coming back after double mastectomy! I don't Know why but my head is stacked on this!

Thank you all,

Ellen

Log in to post a reply

Page 1 of 1 (15 results)

Posts 1 - 15 (15 total)

Log in to post a reply

Aug 24, 2017 08:14AM Moderators wrote:

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



To send a Private Message to the Mods: community.breastcancer.org/mem...
Log in to post a reply

Aug 24, 2017 08:21AM jenco60 wrote:

Hi Ellen, My name is Jen and I am Her2+ Cancer Patient with a reoccurance after a lumpectomy. I went through a trial for Her2+ and 22 radiation treatments and my cancer came back. I am now scheduled for a mastectomy 8/29. I should have done it first!! Anyway, I did not choose bilateral for a few reasons. Once you have a bilateral mastectomy you will have NO sensitivity in your chest again. I have D cup breast so it was hard to make this decision. After discussing this with my surgeon we decided single left breast mastectomy and a reduction on the right side in one year.

Once you reconstruct, remember you are creating a new barrier in your chest. Check with your doctors to determine what is best for you but ASK QUESTIONS. Good doctors are open to unlimited questions. Question any after chemo and the side effects. If the doctor does not speak with you, dump them and get a better doctor and oncologist. I have been going through this since October 2015. I work full time and I have never missed a day of work.

We will survive, why not on our terms.

Log in to post a reply

Aug 24, 2017 05:56PM Ellen12345 wrote:

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

I wish the best for all of us!

Log in to post a reply

Aug 24, 2017 06:00PM - edited Aug 24, 2017 06:06PM by Ellen12345

This Post was deleted by Ellen12345.
Log in to post a reply

Aug 24, 2017 06:03PM Ellen12345 wrote:

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

Log in to post a reply

Oct 20, 2017 01:19AM susanduffy wrote:

well Ladies, my first post back after a 10 year success. I have had her2nu estrogene positive stage 4 cancer .10 years has been great but it is chronic.and it is back I had a partial mastectomy right side 6 months chemo,36 bouts of radiation and a full treatment of herceptin. And to top it off 3 years tamoxifin . All that is key, especially the part about ,,partial mastectomy.. I asked for a full bilateral and the surgeon said No. They did that then,so I say Yes to the bi lateral ...no needto worry everyday

Log in to post a reply

Oct 20, 2017 03:44AM Beatmon wrote:

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

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)
Log in to post a reply

Dec 22, 2017 02:59PM CENOK2017 wrote:

Beatmon,

Hello, I live in Eufaula, OK. I was first told DCIS, and then sample sent out for further testing. Just found out today that pathology report came back HER2 positive. Since I went to a womens health imaging, neither they nor the radiologist could tell me anything My PCP is referring me to OU Breast Institute in OKC.


Can you tell me where you went for treatment and if you were satiisfied?


I do not really understand the diagnosis for HER2 positive.


I'm petrified as I am sure you were. We have just moved to OK.

Dx 1/2/2018, IDC, Right, 6cm+, Stage IIB, Grade 2, ER-/PR-, HER2+
Log in to post a reply

Dec 22, 2017 03:38PM ElaineTherese wrote:

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))

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
Log in to post a reply

Dec 22, 2017 08:16PM Beatmon wrote:

Hi, Cenok , Elaine has covered the her2+ story. I use Coletta Cancer Center at Mercy Hospital. Think the world of my oncologist, Dr. Michael Keefer. Her2 treatment is pretty standard as pointed out. Since I’m Stage 4....still on Herceptin and Perjeta.

Best of luck and try not to be too scared.

Brenda

Dx 7/27/2012, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ Surgery 8/9/2012 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right Surgery 12/1/2013 Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Surgery 7/1/2014 Reconstruction (left); Reconstruction (right) Dx 8/9/2014, IDC, Both breasts, Stage IV, metastasized to lungs, Grade 3, ER-/PR-, HER2+ Targeted Therapy 8/27/2014 Herceptin (trastuzumab) Targeted Therapy 8/27/2014 Perjeta (pertuzumab) Chemotherapy 8/27/2014 Taxotere (docetaxel)
Log in to post a reply

Dec 23, 2017 12:45AM CENOK2017 wrote:

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.


Dx 1/2/2018, IDC, Right, 6cm+, Stage IIB, Grade 2, ER-/PR-, HER2+
Log in to post a reply

Dec 23, 2017 09:12AM ElaineTherese wrote:

CENOK,

Therese is my confirmation name, too! The ER-/PR- means that you won't be doing hormonal therapy. Some studies have shown that ER-/PR-/HER2+ cancer is a bit more aggressive than triple positive, though not by much. The good news is that because you are HER2+, there are an increasing number of options for dealing with your kind of cancer. In addition to Herceptin, there's Perjeta, Kadycla, Nerlynx, and Tykerb, though you probably wouldn't receive some of these treatments unless your cancer recurred.

You may have a combination of DCIS/IDC. I do know that many women who are diagnosed with DCIS often don't know whether their cancer is HER2+ or not because it is not invasive.

((Hugs))

DX IDC June 28, 2014, 5 cm., 1 node tested positive (fine needle biopsy); 0/20 after neoadjuvant chemo + ALND; Grade 3; ER+ PR+ HER2+ Neoadjuvant chemotherapy starting 7/23/14 ACX 4, Taxol X 12, Perjeta X 4; Herceptin: one year Chemotherapy 7/23/2014 AC Targeted Therapy 9/17/2014 Perjeta (pertuzumab) Targeted Therapy 9/17/2014 Herceptin (trastuzumab) Chemotherapy 9/17/2014 Taxol (paclitaxel) Surgery 1/12/2015 Lumpectomy: Right; Lymph node removal: Right, Underarm/Axillary Hormonal Therapy 2/25/2015 Aromasin (exemestane), Zoladex (goserelin) Radiation Therapy 3/9/2015 Breast, Lymph nodes
Log in to post a reply

Dec 23, 2017 12:56PM - edited Dec 24, 2017 09:46AM by BarredOwl

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+).]

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).
Log in to post a reply

Dec 26, 2017 10:48PM CENOK2017 wrote:

Barred Owl,

Thank you so much for the explanation.

Yes, I was originally told DCIS by radiologist. At the same meeting, I was told they were sending tissue 'out' to see if invasive. 1) the radiologist at the imaging center could not tell me where sample was sent...what?

2) when 2nd pathology report came back, the imaging supervisor told me er neg, pr neg, her2 positive. I asked her what that meant and she said she was not a dr.. ok, understandable. She also said 'it says 3 plusses'. I have no idea what that means. Her+++ or hrade 3+.

3) I asked supervisor to have radiologist call me and explain. She said ok then called back later and said radiologist would not call me because he was not an oncologist radiologist.

4) Called my PA who was surprised at radiologist, too. My PA at least tried to explain a little of the path report but she admitted she was not really trained in that either. She has faxed OU breast institute with pathology reports and a referral for me to see a breast surgeon. They are closed until tomorrow.

The waiting is the worst...thinking the worst.

My stereotactic biopsy area is sore, too, even after almost two weeks.



Dx 1/2/2018, IDC, Right, 6cm+, Stage IIB, Grade 2, ER-/PR-, HER2+
Log in to post a reply

Dec 27, 2017 02:19PM - edited Dec 27, 2017 02:36PM by BarredOwl

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

Stage IA IDC, 9/2013 BMX. Right: IDC (1.5 mm, grade 2) with DCIS (5+ cm), 0/4 nodes, pN0. Left: DCIS (5+ cm), 0/1 node, pN0(i+).

Page 1 of 1 (15 results)