Low HER2 ---Does anyone have the same??

klcnp1

I have been recently diagnosed with a perplexing case of breast cancer, I am stage 1A, Mucinous Colloid Cancer that is Grade II, ER+/PR+, HER2 LOW (that's the real issues...some of the tumor was negative and some low + but not enough to call me HER2+), tumor was 1.7 cm in left breast only, and Oncotype Reoccurrence score 25 and Mammoprint High Risk (-0.132) with blueprint Luminal type.

My HER2 testing on biopsy was equivocal. My HER2 testing on tumor was equivocal via ICH and FISH thus sent Hi Resolution HER 2 in which pathologist called it HER2 low (not enough to call me a HER+) so we sent Oncotype and it showed me again in the middle zone with score of 25, after much discussion we sent Mammoprint which shows barely in high risk zone.

I am starting radiation first and then trying to decide if I need chemo. With the Mammoprint coming back as high risk they want to add chemo but they aren't sure how to treat with me being Stage 1. They don't think I need the entire ACT tx, and don't know whether or not to treat me with Herceptin. Chemo may reduce absolute risk by 2% so I am not sure if the benefits of chemo will out weight the risks for only a 2% reduction rate as I am sitting at 11-12% reoccurrence rate now.

Has anyone else been diagnosed as HER2 LOW...if so, what was your situation and treatment plan if you care to share.

Thanks.

Moderators

Hi Klcnp1-

Have you checked out our HER2 forum? Lots of great info there, and knowledgeable members who may be able to shed some light on your HER2 level. You can find it here: https://community.breastcancer.org/forum/80

The Mods

gracie22

Hi, that is an interesting diagnosis. Mucinous is usually pretty indolent, but your HER2 status and high risk mammaprint certainly add a wrinkle! Your HER2 testing is the big question. Did your doc try a completely different lab/pathologist for a retest? FISH is usually the definitive test (I am not familiar with the Hi Resolution HER2 test mentioned) and to have inconclusive results from that is unusual. There are central and local labs; if your doc used one, ask that it be retested in another since it is important to get a definitive answer; results are unfortunately not consistent across labs, particularly for borderline HER2. That said, your 25 oncotype score is low for an HER2+ tumor; the oncotype is not usually offered to HER2+ folks, but when it does happen the results are usually quite high (like well over 50), so it is possible that you are HER2-. Also, chemo is usually given prior to radiation; not sure why they are proceeding with rads without settling the chemo/HER2 question. Assume you had a lumpectomy (?). Hopefully others will be along to talk specifically about inconclusive HER2. Wishing you good luck.

gracie22

Adding to above, some docs believe that Herceptin is important for some HER2 low patients, basically that ER+ can skew results, and testing can make them seem HER- when they are actually HER2+

http://www.dddmag.com/article/2013/08/more-breast-cancer-patients-should-take-herceptin-studies-hint

klcnp1

My FISH was inconclusive as well, that's why they sent the High Resolution and when that came back: HER2 low..they sent ONCOtype then that came back middle of the road. SO I am not actually HER2+ ( I have some negative and some +) so they are calling me HER2 low..because I don't fit in the negative or positive box! Initially based on ONCOtype Score, we were doing radiation only but decided to send Mammoprint...we needed to get treatment started. We were hoping the Mammoprint would help to support the decision of radiation only. Now that Mammoprint came back high risk (I'm barely in the risk section)...they think I need chemo but aren't sure how to treat me being stage 1, Gr 2, luminal B and this weird HER2 LOW....she isn't sure if I need Herceptin or not. I seem to be perplexing the medical field.

Italychick

I was classified similarly, although not sure of your test numbers. They did three levels of fish type testing on me, and finally came out with a HER to I think CEN17 ratio that was either 2.2 or 2.4, can't remember, which put me right at the cutoff. The MO said I could do Herceptin or not and it was up to me. Chemo was already a given because of negative ER/PR receptors. I did a ton of reading and researching and decided to do the Herceptin because it appears to be a powerful drug.

Having said that, Tamoxifen and AIs were not available to me because of the other negative receptors, so since I was recommended chemo anyways I added the Herceptin and figured I would monitor my heart function and if it got affected I would stop the Herceptin. My ejection fraction never changed so I did 18 rounds of Herceptin. You have the added wrinkle of being able to doTamoxifen or an AI so that may impact your decision.

I don't understand doing radiation before chemo since I believe standard of care is chemo first.

Best of luck making your decision!

klcnp1

I am about to start Radiation as they are still perplexed about my results if I even need Chemo...The mammoprint just came back yesterday. So they started radiation thinking I wouldn't need chemo..now they aren't sure but they didn't want me waiting any longer without any type of treatment. They are now discussing my case with many other for ideas/opinions as the science is not dictating how to treat me because I am outside of all the boxes.

Tinyfrog

What have they decided for you now?

I came back HER2 equivocal for the first 3 tests, and positive on a test called Chromsome 17 probe, which should have settled it. But when I met with the oncologist, she questioned it, given that the KI-67 is low and not what you'd see in a HER2 driven tumor. Luckily here in Wash DC, they have a new cancer center that has a tumor board of experts that meets weekly to discuss cases like mine. If they decide to go with HER2+, then she will put on a chemo light program for 12 weeks (less toxic and less duration) because Herceptin is suppose to be given first with chemo, then a year of Herceptin only (I may try to talk her down to less than 1 year if possible). If they decide to go with HER2-, then she will run the oncotype. Although I heard from the surgeon that they did decide to go with HER2+, but I haven't heard it from the oncologist yet. I am still waiting for the genetic test results. Personally, I was leaning for opting for chemo light whatever their decision, because I had multifocal and by pure luck it was caught. I may not be that lucky next time.

klcnp1

They have decided I am HER2 negative, I am about to complete radiation and they offered light chemo but I refused as the risks outweighed the benefits for me with only a 2-3% absolute reoccurence risk reduction. They said insurance would not pay for Herceptin since I wasn't officially HER2+. Hope all goes well for you and your treatment. It is a tough situation with things fit in the middle ground and its not black and white.

Tinyfrog

Thank you so much for responding. Do you get a flag when someone responds to a post you've made? I'm new and have to go back and check all of my previous posts for comments in the active topics section. Is there a better way of getting notice?

Thanks so much for the well-wishes, that's really kind and considerate. I haven't been doing that in my comments that I"ve just started posting, now I feel like a schmuck.

For me, it's not really a tough situation. You see, at first I was very angry for several weeks because they didn't catch the cancer from the 2.5 cm lump in early 2013, that I brought to their attention. Since then I had 5 mammograms, 2 US, 1 fine needle and 1 core biopsy, and an MRI that all came back normal. And that was going to be the end of that. At the last minute they decided to send me to the breast surgeon, who was going to take out what they thought was a giant fibroadenoma. It ended up being a 9 cm phyllodes with multifocal IDC and DCIS. Now, I've reframed my experience, and I feel very grateful to the surgeon who decided to take it out - which is the only way they found the cancer, and lucky that the pathologist took random samples throughout (8 out of 15 slides had cancer tumors), instead of just chucking it after thinking it was just a phyllodes.

Even though they took 8 biopsy samples of the phyllodes, they missed every single tumor. So, instead of being mad about that, I feel lucky that it was a fast growing phyllodes that drew attention to itself. I don't have much faith in myself, the numerous tests I've subjected myself to, or the crappy primary care that didn't follow up on the detailed reports or explain to me what dense breasts meant to catch a small lump if there is a recurrence. I am however, getting excellent cancer treatment from my entire team of young female doctors - radiology oncologist, BS, medical oncologist.

While, obviously, reading about the heart problems with Herceptin was a turnoff. Being on the fence was enough for me to want to do the targeted therapy, and the chemo light. I don't consider myself to be an anxious person (I use to be a marathoner, high altitude trekker, and remote adventure solo traveler), I am not going to push my luck, or wonder if they got all of the cancer out. I've been meaning to follow up with the ladies I see on here, who had small tumors and/or no nodes and still metastasized. Good grief.

Do you mind if I ask how you got this number - 2-3% absolute reoccurence risk reduction.?

MinusTwo

TinyFrog - check the highlighted link that says "add to my favorite topics" then answers on those thread will come up in "favorites" when you log on.

I was HER2+ only on the last test they ran. I had I had 6 rounds of TC chemo with Herceptin & Perjeta every 3 weeks before surgery. Then Herceptin for the rest of that year - so not another whole year. If I remember, it's 17 total infusions 3 weeks apart. I know others do a different protocol at closer intervals but that was easiest for me. Consider getting them to run the Herceptin at 60 or 90 minutes for fewer side effects.

klcnp1

You can turn on notifications to send you an email when someone responds. Also, save to your favorite topics and it will show up in your favorites when you log in.

Sorry to hear of your complicated story. But what you will find is Breast Cancer is not straight forward and sometimes presents in weird ways. You are blessed that is was removed and found and you can move on with a great medical team who can get your through your journey.

When you are discussing the research and the outcomes, usually its discussed in relative rate reduction like 10%. So you think it means that if you have a 13% rate, it would drop to 3%....NO, its not, it equates to 2-3% ABSOLUTE rate of reduction so it drops from 13 to 10-11%....Thats a big difference. Lots of chatter about it on this site.

Tinyfrog

Thank you MinusTwo and klcnp1 for your responses and for answering my questions.

Oh boy, MinusTwo - I see you had the Herceptin before surgery to get that very large tumor down. Yikes. My tumor is already out, so hopefully they won't be hitting me so hard with the Herceptin. I am a little wary of the cardiac SE some people have had. And thank you so much for the suggestion to ask if they can run the chemo for a longer time period. I am not working, so I can sit there all day if I need to in order to leave feeling a bit better.

klcnp1 - Sorry, I'm not quite understanding. How do you get a number to begin with for risk of recurrence? And then from there, the absolute rate of reduction?

klcnp1

Have you they sent an Oncotype on you? I'm assuming if you know about chromosome 17, they have? If so, your MO can give you your predicted 10 year risk of distant reoccurrence based on your own clinical pathology.

.... First, when discussing percentages, we have to be specific. Risk reduction can be discussed in relative or absolute terms. A relative risk reduction of 50% may sound like a lot but if only 2 women out of 100 have mucinous breast cancer and for those 2 women, the chance of revisiting the disease is a relative risk of 10% , then the absolute benefit is quite small AND, what little benefit there is, it doesn't appear for many years further out in time.

BarredOwl

Please note that a person who is deemed HER2-positive would not be "eligible" for the OncotypeDX test for invasive disease. The test is validated for use in certain patients with hormone receptor-positive, HER2-negative invasive disease. The formal eligibility requirements are set forth here:

Formal "Eligibility": http://breast-cancer.oncotypedx.com/en-US/Professional-Invasive/OncotypeDXBreastCancerAssay/PatientEligibility

klcnp1 later noted: "They have decided I am HER2 negative . . " With a determination that she is actually hormone receptor-positive, HER2-negative, then use of recurrence risk information from the Oncotype test would be appropriate in her case.

BarredOwl

klcnp1

@Barredowl I know you are not eligible for ONCOTYPE if HER+, however, since she was equivocal x 3 and knew of her chromosome 17result (done on Oncotype) thought maybe they had sent oncotype for further info.

BarredOwl

Hi klcnp1:

Based on my personal experience, I felt that other, newer patients might find a short explanation of the eligibiltiy requirements to be helpful.

Re your comment: "since she was equivocal x 3 and knew of her chromosome 17result (done on Oncotype) thought maybe they had sent oncotype for further info."

Tinyfrog said the tumor was "positive on a test called Chromsome 17 probe", and that the HER2 status is now being reviewed by the tumor board. She also said: "If they [the tumor board] decide to go with HER2-, then she [the MO] will run the oncotype." It seems from this, that she has received a test that assesses HER2:CEN-17 ratios, but has not yet received the Oncotype test.

The wording above in bold font might be read to suggest that chromosomal CEN-17 testing is "done on Oncotype." For the benefit of other members who are not familiar with these tests, I note that the Oncotype test and tests that determine HER2:CEN-17 ratios are distinct tests conducted for different purposes. The Oncotype test for invasive disease is a a gene expression profiling test ("GEP") that relies on quantitative Reverse Transcriptase-Polymerase Chain Reaction ("RT-PCR") to measure the levels of messenger RNAs ("mRNAs") transcribed from 16 cancer-related genes and from 5 control genes ("21-gene test"). Computer-based methods are used to calculate a "Recurrence Score" ("RS") from the mRNA expression data, and the recurrence risk information associated with the particular RS is used to inform decisions about whether to add chemotherapy to endocrine therapy in hormone receptor-positive, HER2 negative disease. The Oncotype test provides no information about HER2:CEN-17 ratios.

BarredOwl

Tinyfrog

BarredOwl, yes, you are correct in your interpretation of my circumstance. This is what is written in my file: HER2 2+ FISH HER2/TP53 ratio 3.1 HER2/SMSCR ratio 2.2. Standard HER2 analysis show ratio 1.2 and gene copy 4.3 (equivocal). Neogenomics testing with additional probe on Chr 17 suggests HER2/SMSCR ratio 2.2 and therefore positive.

If the tumor board decides to go with HER2+, then I will keep my Wed appointment to discuss next chemo steps. If they went with HER2-, they would postpone next appt for additional 2 weeks out and run the Oncotype.

I just heard back from the nurse, and am told to keep my Wed appt, which means they went with Her2+, and will not run the Oncotype. So, the recurrence rate is calculated from the Oncotype test? I would actually like to have that test run too so I know what that rate is. But I guess the test is expensive and suppose to be run in HER2- cases only so that you can decide if you want to do chemo anyway. If you'e already going to do chemo, then they won't run the test.

My breast are extraordinarily dense, and they actually feel like they're implants, when they're not. I want to know how closely to watch them because it's going to be hard to find lumps.

Tinyfrog

The final test said HER2 +, and I'm also grade 3; but my KI-67 was only 7%, which was not what you'd expect with HER2 + (usually if HER2+, then higher KI-67). I am still waiting for my genetic test results. My paternal aunt died from breast cancer at 26, but that's not in the notes from the oncologist, and I don't think factored into it.

MinusTwo

Tinyfrog - I've re-read the posts and it looks like you haven't has surgery yet - true? Can you go ahead and fill in your details on My Profile? It makes it easier to remember & respond.

Yes, Herceptin has some heart risk. I was monitored with Echo scans regularly. Others have MUGA scans but it seems more invasive. It is my understanding that damage from Herceptin usually repairs itself. However if you have Adriamycin chemo, any damage is permanent. That's why I started out with Taxotere & Carboplatin with Herceptin & Perjeta added. Since I did not have a complete response, I did have to do Adriamycin & Cytoxan after surgery. MO did stop the Herceptin for the period I was doing the 'red devil', and then started again once my heart was deemed in good shape.

TofAvila

I had two different FISH tests, as the first one came back equivocal. I ended up going to UCLA for the second test, as well as my lumpectomy. UCLA is a Cancer Research Institute ( as are many other teaching hospitals) and so I had access to Dr John Glasby, Director of oncology at UCLA. He agreed to monitor my test results and chemo from UCLA - even though I live three hours north. My local medical oncologist is fine with this. Perhaps you might seek out a second FISH test at an institution that has a funded cancer research center, as they normally have access to latest and greatest information.

I did a lumpectomy, no nodes, clear margins stage 1, grade 3 HER2+ - so my treatment is 6 rounds of TCH, followed by radiation and Herceptin for one year. My tumor was 1.4cm. Hope this helps.

bevin

I am Her 2+ 1, which is considered low. My onco stated they don't treat Her2 +1 with Herceptin. As I understand  herceptping with +1 her2, is not NCCN guidelines protocol . Good luck with your decisions. It seems like you have a lot of good input here. I am not sure if I read, but if you haven't you can always get a second opinion too.