My mom just got her HER2 report

Godblessedeveryone

what am I supposed to do now?

As my mom's previous report is quite good as Doctor mentioned, her lymph nodes and margins were clear and no cancer found. Her ER/PR is positive.

So now Doctor says my mom is under Stage 1A, he recommend us to do chemotherapy for 4 cycles, and take the medicine for 5 years plus radiotherapy.

My mom doesn't feel like doing chemotherapy, is it okay not to do it? What are the suggestions? Can anyone help? She's so upset, and I'm trying my best to cheer her up.

farmerlucy

I'm sorry no one has seen this. I will bump it by way of this reply to see if you get some responses.

Lilyn

Hi I know this is a difficult time for you and your mom. I was diagnosed with bilateral breast cancer. One tumour was similar to your mom's small, no node involvement and estrogen and progesterone positive.Because of Her2 status it was recommended that I do 4 chemo treatments and a year of Herceptin. Chemo seems daunting but u get through it and keep moving forward. just to let u know that was in 2009:-). Important to listen to what your oncologist recommends. X

BarredOwl

Hi Godblessedeveryone:

Sorry to hear the result of reflex testing for HER2 was positive. Probably, your mom was shocked and needs time to absorb the information about her treatment plan. She is lucky you can help and support her.

From the date format on her other report, I am thinking you are not in the US, but please let me know if that is not correct.

If she needs more information about the basis for the recommended treatments, she may wish to consider a second opinion, including a review of the pathology and HER2 test results. The second opinion process offers additional input, explanation, and discussion, which may be valuable in gaining an understanding of risk / benefit of each type of treatment.

From your other threads, she is ~ 55 years old, has IDC (grade 3), which was 1.5 cm, ER+ PR+ and now said to be HER2+ or "triple-positive"

A 1.5 cm tumor is "T1c" in size, and this is reflected in the stage information on the previous pathology report posted elsewhere:

pT1c N0 Mx (Stage IA)

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

For triple-positive IDC that is node-negative and greater than 1 cm, chemotherapy plus trastuzumab (Herceptin), followed by endocrine therapy is "standard of care", based on NCCN consensus treatment guidelines.

Some patients wonder why they need additional treatment if the tumor was removed and the sentinel biopsy was negative. Many patients do not understand that lumpectomy plus breast irradiation are local treatments only. They only address the problem in the breast. In contrast, chemotherapy, HER-2 targeted therapy, and endocrine therapy are systemic treatments (they go throughout the body), and can address the possibility of distant spread.

Even though she is node negative (N0), the possibility of distant spread remains. The tumor was in there for a while before it was removed, providing a potential opportunity for cells to escape the breast either by the lymphatic system or via the blood stream before surgery. If any cells already moved to distant sites (laying the groundwork for a distant recurrence (i.e., metastatic disease)), these can be reached by systemic treatments (and reduce her risk of distant recurrence).

While her doctors have noted some positive aspects of her diagnosis which are encouraging (compared to other possibilities), they are also recommending standard treatments, because HER2-positive disease is an aggressive form of breast cancer. As many have noted before, trastuzumab (Herceptin) has been a game-changer for those with HER2-positive disease.

As you may know, lumpectomy plus radiation is comparable to mastectomy in terms of overall survival, and this is the basis for the recommended radiation regimen. This should have been made clear to her before choosing lumpectomy.

Be sure to update your profile information to indicate the correct size of 1.5 cm ("T1c" in size), which is more common and will ensure you receive appropriate input.

Hopefully, others will come along, including some members with node-negative, "triple-positive" T1c size tumors, to share their thoughts and experiences.

BarredOwl

debiann

Being HER 2 positive makes your mom's cancer a more aggressive type of breast cancer. Prior to the drugs Herceptin and Perjeta, those with this type of BC had a very poor prognosis. As Barred Owl explained above, it is possible for cancer cell to escape the breast and still have clear lymph nodes. It is for that reason that chemo is recommended. While not a walk in the park, 4 chemo treatments will not be that much to endure.

Meow13

Can she do hormone therapy and herceptin? I'd get a second opinion. I also did not do chemo which was recommended. I am glad I didn't I am 4 years out.

However I was her2-.

Meow13

Also GodBlessedeveryone, what are her concerns on chemo. For example she can do cold caps to prevent hairloss. I think there are many drugs to get you through the side effects.

jjwla

I am very confused regarding HER2 status. My HER2 (FISH) result was 1.5 on my biopsy, 2.1 after lumpectomy surgery and 2.4 on the retest. My oncologist says that reluctantly, I will have at least 6 months of Herceptin, no chemo (my tumor was 0.4 cm.,Stage 1a, No positive lymph nodes). I am also ER+, PR+. He determined chemo by the size of my tumor. I'm reading here that I should have chemo because I am HER2+. That's one point of confusion for me. I was diagnosed January 22, just after I turned 66. I've figured out that I'm going to be anxious no matter what the treatment. If he prescribes something, I'm anxious and if he doesn't, I'm anxious.

Dx 1/22/16, IDC, Stage 1A, Grade 2, 0/4 nodes, ER+/PR+, HER2+, DCIS

Surgery 3/11/16 Lumpectomy Left

BarredOwl

Hi jjwla:

The information that I provided above is specific for tumors with all of the properties noted, including size larger than 1 cm. The recommendations under the NCCN guidelines vary depending on histology, size, node status, and ER, PR, HER2 status, and they are not the same for those with smaller tumors.

If I understand it, you have been advised that you have IDC that is 0.4 cm, node-negative (N0), ER+, PR+, HER2+, which is Stage IA, with a tumor that size-wise is T1a:

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

Under the NCCN Guidelines for breast cancer (Version 1.2016), for IDC that is node-negative (N0), hormone-receptor positive and HER2 positive, where the Tumor ≤0.5 cm,

Consider adjuvant endocrine therapy ± adjuvant chemotherapy with trastuzumab (category 2B)

Such patients should consider adjuvant endocrine therapy.

In addition, the ± symbol reflects that chemotherapy plus trastuzumab is a suitable option.

The inclusion in the guidelines of chemotherapy plus trastuzumab is quite recent (2015) and is based on the results of Tolaney et al. or the "Dana-Farber study" (Tolaney SM et al., Adjuvant paclitaxel and trastuzumab for node-negative, HER2-positive breast cancer, N Engl J Med 2015;372:134-141):

http://www.nejm.org/doi/full/10.1056/NEJMoa1406281...

The decision about chemotherapy plus trastuzumab (Herceptin) entails a personalized risk-benefit analysis, and patients work with their doctors to decide what to do in their particular case. The risk assessment is complicated by the fact that patients with T1a disease (T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension) are a less studied subset of HER2-positive patients, and the available studies are small. As a result, there is quite a bit of variation between studies regarding the magnitude of the risks of recurrence (loco-regional and distant) that they face. In addition, for these smaller tumors, there is not as much clinical evidence available about the results of treatment.

There is a relevant thread here for smaller HER2+ tumors (Calling all t1A . . .), so please pop over there and say hello. In reading the "calling all t1A . . ." thread, please note that the guidelines changed in 2015, so decisions made by members on this thread before the change do not reflect current practice.

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

Those who elect targeted therapy usually receive chemotherapy as well (e.g., paclitaxel plus Herceptin), because the clinical trials used combination treatment. If you have received a recommendation for trastuzumab alone, you should ask for information about clinical evidence for the use of trastuzumab (Herceptin alone, how many patients had Stage IA disease or T1a-size tumors in the studies, how the results compare with paclitaxel plus trastuzumab and why the regimen is best for you.

If you would like a second opinion (which could include a review of pathology slides an HER2 test results) if you are unsure what to do, or would simply like additional discussion and input, you may find a second opinion to be very helpful.

I am a layperson with no medical training, so all information above should be confirmed with your medical oncologist to ensure accurate, current, case-specific expert professional medical advice.

BarredOwl

jullis

So sorry this has fallen in your lap. No, it's not easy, for sure...but it's definitely 'doable.' I had a similar diagnosis last year and believe me, it was a long year but I'm here to say...I'm okay and at peace knowing I did everything the doctors ordered. I was shocked at the diagnosis and feared the treatment protocol, but I am almost through the year long Herceptin treatments after chemo and radiation. I see the light and I'm grateful for my loving family and my superb doctors. Please urge your mom to see this through. She is much stronger than she believes she is and with a loving daughter by her side, she'll be okay. God Bless.

jjwla

BarredOwl, Thank you so much! I did seek a second opinion at UCLA and am going to start treatment there. The doctor there told me that the trend today is to look at the characteristics of the tumor, not just the size. Her recommendation is chemo, herceptin with perjeta if I can tolerate it and radiation and the ten year course of an aromatase inhibitor like femara. She told me that herceptin and a chemo like taxol work synergisticaly. She told me that there are no studies of taking herceptin alone post surgery and that there probably would not be any studies because it would not be fair to the patients. I found that there are pre-surgery clinical trials of taking herceptin and tykerb (in Europe) and then measuring how much the tumor shrinks but this is in a clinical trial. I read the article you referenced and it made me curious about herceptin so I called Genentech, the maker of herceptin. They told me that my present doctor is prescribing herceptin in an "off the label manner." They told me that herceptin is given with chemotherapy or post chemotherapy. The article you gave me and the conversation with Genentech helped me make my decision to change doctors. By the way, the advice you gave to ask my doctor which studies he was basing his treatment on (trastuzumab or herceptin alone) is the same advice my Radiologist gave me. She happened to call me just as I came out of UCLA and told me that I deserved an explanation from my present oncologist and that I should go to see him. So, I'm planning on taking a copy of the notes from the UCLA doctor and speaking with my present oncologist. I have no idea what he will say.

Dx 1/22/16, IDC, Stage 1A, Grade 2, 0/4 nodes, ER+/PR+, HER2+, DCIS

Surgery 3/11/16 Lumpectomy Left

BarredOwl

Hi jjwla:

I saw you had some responses in your other thread here:

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

Did you obtain expert pathology review of the HER2 test results as part of the second opinion at UCLA?

It sounds like you are comfortable with a proposal for systemic therapy in general, but received quite different recommendations regarding the particular regimen (herceptin alone versus chemotherapy plus herceptin and perjeta). The two medical oncologists you have consulted have different approaches, so better understanding their thinking may be helpful.

In a situation like yours, the guidelines discuss the option of a regimen of paclitaxel and trastuzumab, in light of the single-arm Tolaney et al. study linked above, but both of the regimens recommended to you differ from this.

With regard to the addition of pertuzumab (perjeta), in the adjuvant setting (systemic treatment following surgery), NCCN guidelines include perjeta as an option for larger tumors (T2 or above (> 20 mm)) or node-positive tumors (N1 or above):

bbA pertuzumab-containing regimen can be administered to patients with ≥T2 or ≥N1, HER2-positive, early-stage breast cancer.

For more background, here is an article noting the rationale for the addition of pertuzumab (Perjeta) as an option under NCCN guidelines for breast cancer in certain patients with ≥T2 or ≥N1, HER2-positive disease in the adjuvant setting:

http://www.ascopost.com/issues/may-15-2014/nccn-clinical-practice-guidelines-in-oncology-2014-updates/

Thus, the NCCN guidelines do not appear to include perjeta in your situation, but please confirm this point with your team. Of course, guidelines describe what is generally done, are snap-shots in time, and are not mandatory. In appropriate cases, patients and their doctors may choose to depart from what they provide.

Note that the FDA-approved label for pertuzumab (version approved March 22, 2016) includes certain uses in the metastatic setting and in the neoadjuvant setting. However, it does not appear to include use in the adjuvant setting by my layperson's read. See "Indications and Usage" at page 1, column 1. See also, commercial site:

Pertuzumab Label: http://www.accessdata.fda.gov/drugsatfda_docs/label/2016/125409s109lbl.pdf

Commercial site: http://www.perjeta.com

In general, NCCN guidelines do include some uses of various drugs which are not approved by FDA and are considered "off-label" (and may require insurer approval). The question becomes the nature and quality of the evidence available for the use in question.

Regarding adjuvant pertuzumab (Perjeta) in your case, you may wish to inquire about the specific clinical (e.g., age) or pathological features of your case that support the addition of perjeta. The addition of such an agent is not without risk, so if considered, the risks must be weighed against the potential benefits.

You may also wish to ask for more information about the nature of the evidence available (or extrapolated from) for use of perjeta in the adjuvant setting (e.g., that led to incorporation into the NCCN guidelines for ≥T2 or ≥N1, HER2-positive, early-stage breast cancer), and whether there is any evidence for an improvement in event-free survival (e.g., recurrence) or overall survival in any setting.

Possibly reasonable minds could differ about the addition of perjeta, as it does not appear to be within the NCCN guidelines in your situation based on size and nodal status. As suggested in the other thread, a third opinion may be helpful (including pathology review). Or you may wish to inquire if there is a "tumor board" (multidisciplinary board) at UCLA, and if they would consider your case.

As a layperson, I have no idea what the regimen should be in a specific case. Please confirm all information above with your medical oncologists to ensure you receive accurate, current, case-specific expert professional medical advice.

Sending you luck as you learn more and come to a decision about what is best for you.

BarredOwl