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All TopicsForum: DCIS plus HER2-positive Microinvasion → Topic: Extensive DCIS ER+ / PR- / HER2+

Topic: Extensive DCIS ER+ / PR- / HER2+

Forum: DCIS plus HER2-positive Microinvasion —

Meet others with this diagnosis.

Posted on: Jul 10, 2017 03:07AM - edited Jul 10, 2017 03:40AM by LBBS_CJ

LBBS_CJ wrote:

In June 2015 I was diagnosed with extensive DCIS (8.7cms). I had a [right] unilateral mastectomy with sentinel node biopsy. Pathology: margin 1mm in size and clear; 1 intramammory node biopsied and clear; sentinel node biopsy clear; but there were two 1mm invasive tumours found in the breast tissue that was removed and they were ER+ / PR- / HER2+. My case went to the Board of Oncologists at the Princess Margaret Cancer Centre in Ontario, Canada where it was determined that no further treatment was required. I was offered Tamoxifen, which I am currently taking, but I was refused Herceptin for the HER2+ cancer because the two tumours found were 1mm in size each. It has been 2yrs since my operation with no sign of reoccurrence (knock on wood). I have my good days and my not-so-good days, where I find I am worrying about the HER2+ diagnosis. My Oncologist released me from his care in August 2015 and am now followed by my Family Doctor. I feel slightly abandoned at times.

What I am wondering is, is there anyone out there with similar diagnosis, who did not qualify for Herceptin, and are doing well?

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Jul 10, 2017 07:11AM - edited Jul 10, 2017 07:13AM by MinusTwo

Sorry that you are worried. It it scary to feel abandoned.

It is obviously different in Canada. In the US if you have invasive cancer & if you are HER2 positive, you have Herceptin. You may have Perjeca as a neo-adjuvant treatment with the herceptin. You will not normally get Perjeta after surgery unless you have special considerations.

Hopefully others from Canada will add their history.

Edited to add - DCIS is NOT invasive. If you had invasive tumors, you no longer are diagnosed with DCIS but IDC (invasive ductal carcinoma) or ILC or IBC, etc.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 10, 2017 10:42PM - edited Jul 11, 2017 09:28PM by BarredOwl

Hi LBBS_CJ:

Although you are in the right forum (for people with DCIS plus HER2-positive Microinvasion(s)), the title of your thread does not correspond very well to your question. You aren't asking about the DCIS component, but about the node-negative, ER+ PR- HER2+ microinvasion(s). You might get more replies from others with similar diagnoses with a revised thread title. If you wish to revise the title, you can send a Private Message to the Moderators and request that they revise the title of your thread to something like, "Node-negative ER+ PR- HER2+ microinvasion(s)" or even more generally, "Node-negative Hormone receptor-positive, HER2+ microinvasion(s)".

By the way, your treatment plan (Tamoxifen alone) appears to be within our current local clinical consensus guidelines for breast cancer from NCCN (Version 2.2017). Assuming the histology of the microinvasions was ductal, lobular, metaplastic or mixed, then for hormone receptor-positive (ER+ and/or PR+), HER2-positive, node-negative (pN0) disease, where the tumor is ≤ 0.5 cm (including microinvasive), the guidelines provide (emphasis added):

>> "Consider adjuvant endocrine therapy [x,y] ± adjuvant chemotherapy [z,aa] with trastuzumab [bb,cc] (category 2B)"

Thus, for the above situation, treatment plans either with or without (±) chemotherapy plus trastuzumab (HERCEPTIN) are within guidelines.

The results from the APT Trial (ClinicalTrials.gov number, NCT005424510), which influenced treatment guidelines for small, node-negative HER2-positive tumors, were published in late 2015:

>>Tolaney (2015), "Adjuvant Paclitaxel and Trastuzumab for Node-Negative, HER2-Positive Breast Cancer"

>>Main Page: http://www.nejm.org/doi/full/10.1056/NEJMoa1406281#t=articleDiscussion

>>PDF version: http://www.nejm.org/doi/pdf/10.1056/NEJMoa1406281

In the above 2015 publication, "The median follow-up time was 4.0 years. . . "

Note that it appears that only 9 patients (2.2 %) in the study had microinvasive disease (Table 1).

The discussion of the paper indicates that patients may decide this question differently, after a personalized risk/benefit analysis.

Just recently, seven-year follow-up data was recently released at ASCO 2017:

>>Tolaney (ASCO 2017), Abstract No. 511, "Seven-year (yr) follow-up of adjuvant paclitaxel (T) and trastuzumab (H) (APT trial) for node-negative, HER2-positive breast cancer (BC)"

>>http://abstracts.asco.org/199/AbstView_199_191222.html

This abstract reports after "a median follow-up of 6.5 yrs . . ."

Results from abstracts may be preliminary in nature. Those with pending treatment decisions should be certain to discuss any outside information with their medical oncologist to ensure accurate understanding and applicability to their particular situation.

BarredOwl

________________________________________

"T1" = Tumor ≤ 20 mm in greatest dimension

The T1 size category is further subdivided as follows:

T1mi Tumor ≤ 1 mm in greatest dimension

T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension

T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension

T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension

________________________________________

CORRECTION: The full-length paper of the APT Trial was published in the January 8, 2015 issue of the New England Journal of Medicine. Per my copy of Version 2.2015 of the NCCN guidelines for breast cancer (published in the April 1, 2015 of JNCCN ), the option of chemotherapy plus trastuzumab for very small HER2-positive tumors was first introduced into Version 1.2015 of the guidelines.

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+).
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Jul 10, 2017 10:46PM - edited Jul 10, 2017 11:51PM by BarredOwl

Hi MinusTwo:

Re: "In the US if you have invasive cancer & if you are HER2 positive, you have Herceptin."

You seem to be suggesting that in the US, everyone always gets Herceptin, regardless of tumor size or nodal status, which is not an accurate summary of our local practice.

Under the NCCN guidelines for breast cancer (Version 2.2017) applicable to ductal, lobular, metaplastic or mixed early stage invasive breast cancer, that is HER2-positive, chemotherapy plus trastuzumab (Herceptin) is generally recommended for either:

(a) tumors that are greater than 1 cm in size (any early stage lymph node status);

OR

(b) any early stage tumor size (pT1, including T1mi; T2 or T3) having a specific level of lymph node involvement (i.e., "Node positive (one or more metastases >2 mm to one or more ipsilateral axillary lymph nodes").

In contrast, with smaller (up to 1 cm in size, including microinvasive), HER2-positive invasive tumors AND either no nodal involvement (pN0) or limited nodal involvement (pN1mi), the NCCN guidelines provide that chemotherapy plus trastuzumab is an option or is considered. This means that the option of chemotherapy plus trastuzumab is considered in a case-specific risk/benefit analysis. Thus, in this subset, treatment plans that either include or do not include chemotherapy plus trastuzumab are both formally within guidelines.

I am a layperson with no medical training. The above is not a comprehensive summary of all possible situations, and there may be appropriate exceptions. Patients should confirm all outside information with their Medical Oncologist to ensure receipt of accurate, current, case-specific expert professional medical advice.

BarredOwl

------------------

"pN1mi" is a lymph node status: "Micrometastases (greater than 0.2 mm and/or more than 200 cells, but none greater than 2.0 mm)"

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+).
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Jul 10, 2017 11:31PM - edited Jul 10, 2017 11:47PM by BarredOwl

Moderators:

As an aside, the current title of this Forum is rather confusing: "Micro-invasive DCIS that is HER2 positive"

There are two types of disease present in this situation:

(1) some DCIS, which is "non-invasive"; and

(2) very small "invasive" tumor(s) each ≤ 1 mm in size, at least one of which is HER2-positive.

I recommend revising the title of this Forum to something like: "DCIS plus HER2-positive Microinvasion"

Additional Explanation:

As MinusTwo correctly noted, by definition, "DCIS" is confined to the inside of the ducts and is deemed "non-invasive" according to the determination of the pathologist.

Instead, what is "micro-invasive" is the associated "invasive" disease, which according to the determination of the pathologist has "invaded" the tissue surrounding the duct, and meets the size criterion for a microinvasion ("T1mi" = Tumor ≤ 1 mm in greatest dimension).

Also, it is unclear from the current Forum title what is HER2-positive (the DCIS or the microinvasion). In fact, this Forum is for those with HER2-positive microinvasion, because the HER2 status of invasive disease can impact advice regarding systemic drug treatment. (The HER2 status of the DCIS is not relevant to systemic treatment decisions under current clinical practice.)

Once any invasion is present (no matter how small), the pathologic diagnosis is "invasive" breast cancer (Stage IA or higher), and is no longer Stage 0 (pure DCIS).

When DCIS and microinvasion are both present, it is sometimes called "DCIS with microinvasion" or "DCIS-MI", but despite the name, DCIS-MI is an "invasive" breast cancer diagnosis. Patients with DCIS-MI should always consult with a Medical Oncologist.

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+).
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Jul 11, 2017 12:23AM Moderators wrote:

This makes sense. We'll change the name. Thanks for the recommendation.


To send a Private Message to the Mods: community.breastcancer.org/mem...
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Jul 11, 2017 12:39AM BarredOwl wrote:

Thanks!

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+).
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Jul 11, 2017 02:04AM MinusTwo wrote:

Barred Owl - thanks for the clarifications

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jul 11, 2017 08:40AM - edited Jul 11, 2017 08:49AM by LBBS_CJ

The DCIS was high grade measuring 8.7cms. The two 1mm invasive tumours were ER+ PR- HER2+ (and know that I very clearly stated this in the body of my discussion). The team of Oncologists at Princess Margaret Cancer Centre decided [in a round-table discussion] to treat my cancer as Extensive DCIS.

I apologize, BarredOwl, if the 'title' was confusing. Please know that this was my first post and it is in the correct Forum. I was merely looking for support and wondering if anyone else has been in this same scenario.

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Jul 11, 2017 08:02PM - edited Jul 11, 2017 08:09PM by BarredOwl

LBBS_CJ:

I understood your post. I did not intend any criticism or lack of support in suggesting that you consider revising the title to increase the likelihood of achieving your goal to meet "anyone out there" similarly situated. Many members only skim the titles of posts in the Active Threads (without regard to Forum), so those you wish to connect with may not read a post that appears from its title to be about DCIS.

When I posted you had received a single reply from a person (not similarly situated) that suggested that had you been in the US, you would have necessarily received a recommendation for Herceptin. I meant to provide reassurance that such treatment is not mandated under our local guidelines, but is an option that is considered after personalized risk/benefit analysis.

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+).
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Jul 30, 2017 06:42AM Rlsteadman wrote:

I had DCIS with a 1.2 mm invasive in 2013 that was Her2+. I had lumpectomy with radiation. I had 3 oncologists say it was to small to treat with Herceptin. I had a recurrence this year and had a mastectomy. It was 5cm DCIS that was suspicious for micromets but they didn't find it in the staining upon pathology. Had all the lymph nodes removed and nothing was there. I don't know if it was also Her2+ since they couldn't prove the Invasive componentwith pathology. Still need to meet with oncologist in August but I don't think they will give me Herceptin. It's very scary since I've had BC twice in less than 4 years.

Radiation Therapy 1/9/2013 Breast, Lymph nodes Dx 10/23/2013, IDC, <1cm, Stage IA, Grade 2, 0/3 nodes, ER-/PR-, HER2+ Surgery 12/2/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel Dx 5/16/2017, Right, Stage 0 Surgery 6/22/2017 Mastectomy: Right; Reconstruction (right): DIEP flap

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