confusen her2+

Konakona

I just came back from my oncologist appointment and he told me I am her2 positive. I was equivocal at biopsy so they did a FISH test and it came back negative, also I had a mammaprint test done that said I was her2 negative. there were discrepancies about my ER status so he had the tumor retested her2 came back at positive 2.40. How is this possible?

Eleanora23

Hi Konakona,
I just wanted to reply briefly as we are in similar situations. I have two upcoming Oncology consults, one with someone who only does BC and has worked with HER2 clinical trials, and I hope to get some clarity on this. I am now FISH her 2+ after surgery path and mammprint shows me as HER2= as well. I seem to be "weak" HER2 if there is such a thing (equivocal on the IHC test ) so I hope to get more information on that (degree of positivity...is the spectrum important, say, from highly + to low +) I will flag this thread and try to remember to update as soon as I have any information. YOu do the same, it would be good to exchange the info.

Best wishes, Ellie

Konakona

Thanks Eleanora 23 , I will see my oncologist on the 11th and should have more information, but for now he started me on Herceptin, 18 sessions.

Are they giving Herceptin to you also?

Eleanora23

HI, My treatment is as of yet undecided. I am meeting with a new oncologist next week as I have one more surgery (I hope just one more) to. This time I am going to one that has much more experience with breast cancer. Best of luck !

Eleanora23

Konakona, I just wanted to add , that given that your FISH test (the gold standard for HER2 status ) was negative, I'm not clear why he decided to go with HERCEPTIN. In all the reading I've done HERCEPTIN is only for those with HER2 postiive. K

Konakona

hi Eleanora, the FISH test from biopsy was negative, they repeted it after surgery and it was positive 2.4

Truffles1968

Yes this happened to me. I was equivocal on biopsy then negative on FISH. Surgery was positive on FISH (2.0). My HER2 specialist oncologist at Hopkins sent a sample to Mayo. Mayo came back negative. My oncotype also showed negative but oncologist said he would not use that result as it has not been proven for HER2 diagnosis.

I would definitely get another opinion. My ki 67 rate was low- 5% and I have ILC so my oncologist thought that it didn't add up. It delayed my treatment since we had to wait for another test but worth it in the end.

I know it is difficult to have such a surprise after surgery. I hope you get answers soon

Eleanora23

OK Kona, keep us posted. I read you are starting the Herceptin, and are you also starting any other drug therapy or just the Herceptin alone? I will update as soon as I know what the new ONC thinks about my discrepant results. However the post-LUMPEX pathology does indicate her2+..

eLLIE

Konakona

I did 3 rounds of FEC, started TAXOTERE after, thats when he aded the Herceptin, I will have round 5 on the 13th . So far compared with the FEC side effects, a walk in the park, just runny nose and a little leg pai

TwinEagleMom

Hi Ladies-

I just had this happen to me as well. At biopsy my tumor tested ER- PR- and equivocal for HER2. FISH then came back negative. So we moved forward as if treating for triple negative. I had neoadjuvent chemo and then lumpectomy. I found out last week that the post-surgical pathology showed HER2 positive. I will be starting herceptin and perjeta Next week. Perjeta will be for 6 treatments, herceptin willcontinue for a full year.

My MO said that I am only his second patient to ever have this happen. Glad to know that I am not alone!

Konakona

My Oncologist did not mention Perjeta and I see a lot people having it in combination with Herceptin post surgery. I will ask him next week.

Does anyone know what the protocol is for having Perjeta post surgery

SpecialK

Currently Perjeta is only FDA approved for neoadjuvent use in tumors over 2cm, or node positive patients with early breast cancer. Some oncologists have been able to get insurance to approve it adjuvently but it is usually in patients with those same staging criteria. Can't hurt to ask though.

Konakona

Thanks SpecialK, my tumor was 1.4cm and no node involvment. I will ask him anyway

TwinEagleMom

Konakona and SpecialK-

I meet the neoadjuvant standards, since my tumor at diagnosis was over 2 cm. I know that my MO thought he might have to fight the insurance for the Perjeta. He seems to have gotten it approved pretty quickly though. It's worth a try!

jjwla

Hi All, I am new to this Board, diagnosed with IDC in January, had my lumpectomy. Initially, my biopsy was FISH neg for HER2 (1.5), tumor was barely positive with FISH (2.1) and then they redid the test and it came out even higher 2.4 again with FISH. I am Stage 1a, tumor was .4 cm. Tumor is grade 2. Luminal B. Also have DCIS. My oncologist was going to have me treated with Herceptin for only 6 months (had one treatment) and I was supposed to start radiation today. He tried to convince the radiologist that I didn't need radiation. I wanted to add Perjeta to the Herceptin because I had read about it and it seemed like something that would add another dimension to deal with HER2+. I was told it was not cost effective, was "overkill" and also that insurance could deny it because they give it along with chemotherapy. However, I understood that if I pressed, the doctor would work it out. I decided to go for a second opinion and now have a real dilemma. This is an upcoming well known oncologist who has now told me that I should have chemo (Taxol) or others, Herceptin for one year with Perjeta if I can tolerate it, radiation and then aromotase inhibitors for ten years. She told me that the trend today is not to look at the size of the tumor but at the characteristics and nature of the tumor itself. So I have one oncologist who minimizes treatment for me and another who wants to go all out. I cancelled the radiation treatment, spoke with the radiologist who told me that they "owe me an explanation." Never having had this second opinion experience, I think I will take the second oncologists notes and go to my original oncologist and ask him to explain his approach. I have to decide what to do in the next few days. By the way, I also just found out that you can have some cancer cells that are HER2+ and some that are not--at the same time. How confusing. I'm also thinking of asking for a second retest for HER2 with a different lab since this seems to determine so much in my treatment. Suggestions anyone on what to do next? Anyone else have this kind of experience? Thanks to all of you for using this Board. It's been so very helpful in reading everyone's experience.

Dx 1/22/2016 IDC, DCIS Left, <1cm, Stage IA, Grade 2, 0/4 nodes, ER+/PR+, HER2+ (FISH)

Surgery 3/11/2016 Lumpectomy: Left; Lymph node removal: Sentinel

Konakona

If it ispossible to have HER2 cells positive and negative in the same tumor, how many times do they test the tumor for it? I mean, if they test once and miss the her2 positive part if the tumor, that would mean there are people that are her2 positive not reciving the treatment they need.

wabals

I would suggest a 3rd opinion at an academic institution such as Dana Ferber or Johns Hopkins. They are up to date on all the latest trends.

smlowry7

Hello!

In reading your post I see I'm not the only one dealing with mixed her2 status. I was dx in Feb 2016 and due to the size and the wavy edge of part of my tumor the radiologist wanted a biopsy from both sides of my tumor. The results were: biopsy at 9o'clock: 100% ER+, 90% PR+, Her2+++. Biopsy at 3o'clock: 100% ER+, 95% PR+, Her2-. The comment on the path report said that 90% of the tumor cells in the first 9'oclock biopsy was completely her2-, but 10% of the tumor cells show strong membrane reactivity and so the result is regarded as her2+. This was verified and the same percentages were obtained on the FISH test for the her2+ and her2-.

I saw my MO's partner today because mine was out of town for an emergency. She mentioned that she thought my tumor would have melted more by now since I have treatment #4 of 6 of TCHP tomorrow and my tumor is her2+. I explained my "unique" situation and she went over my path report with me. I asked if maybe the HP had taken care of the 10% that was her2+ and now only her2- was left. I also asked if it would change my treatment plan or if I would need another chemo treatment that is her2- specific. She said she would talk to my regular MO about another biopsy now vs waiting until surgery after chemo is done. She also said that her2- specifically would have a different/stronger combo, but since I had her2+ as well getting the HP was important and some chemo can't be mixed with HP. I asked if I could do a her2- specific chemo treatment for extra coverage after the TCHP and she said it wasn't protocol, but my situation was complex so she would discuss it with my MO. She didn't say no so I'm hoping they will give me extra coverage. They sent my specimens for blueprint and it was inconclusive due to not having enough tissue sample and they couldn't find any cancerous cells in the tissue they received.

Has anyone had a similar situation of her2- and her2+ in the same tumor? If so, what was your tx plan to address both aggressively? Thanks in advance!

Konakona

I am her2- at biopsy and blueprint but her2+ at surgery sample, my tumor was 1.4 cm

My chemo regimen is 3 FEC 3 Taxotere, I did taxotere number 5 last Friday. I started Herceptin after I was done with FEC because according to my oncologist they are very toxic toghethe

meg2016

I just wanted to bump this because I have similar tumors but just found this thread. I have been doing neoadjuvant THP (four rounds complete) and my tumors have shrunk, but not enough to move to surgery so now moving on to to AC based on some tests last week. The thought is whats remaining is probably acting more like ER/PR++ and HER2-. Wondering what treatment plan you all are moving forward with? I am going to a major research center (Dana Farber) and I feel good about the approach that they have taken, which is to check several times along the way and change course as needed. But I'm curious what approach and response others with similar diagnosis may be finding?