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Macushla
Macushla Member Posts: 8
edited May 2018 in Just Diagnosed

Brand spanking new to the site, was chagrined to see you can't search within a topic. Or if we can, I can't see where.

I found a lump in my breast in mid February, tons of tests, after mammo and ultrasound they found a second tumor as well. MRI confirmed it but showed no node involvement, no metastases. Core needle biopsy showed that I am strongly ER/PR+, one tumor is def HER2- (the smaller 1.5 cm one) and the other is def HER2 equivocal (the 2.3 cm one). Had both ISC and FISH tests done, with no change in results.

On the scale (0-1 being negative and 3+ being positive, the one tumor consistently comes in at 2.1)

After the tumor board reviewed my case twice they decided it should be treated as HER2 -, and I had on April 9, a left side nipple sparing mastectomy and immediate reconstruction. Pre-pectoral, silicone with biomesh wrapping.

Post op pathology showed exact same results. One tumor is def negative and the other is still firmly at 2.1 equivocal with literally the smallest percentage as can be towards the positive end. My surgeon also did a sentinel node biopsy and removed 3 nodes, 2 had microcarcinoma. It apparently does not count as having metastacized or as true node involvement and is not counted as such in the staging as the instances are so small.

Surgery was done in a larger hospital and city about 50 miles away as they have a plastic surgeon who specializes in breast reconstruction after mastectomy, so they sent me there. For adjuvant therapy I asked to be assigned a medical oncologist in my own city. I have just this past Friday met her and she (medical oncologist) staged me at 2A or 2B: T-2, N-0, M-0 and did not feel a PET or CAT scan was called for. Yet, throwing me for a loop, she wants to treat it as full blown HER2+ and pushed to put me on a year long course of chemo with trastuzumab in spite of the fact that studies have been showing that the drug is really best for 3+ tumors, and to ideally be used PRE surgery. Also - I have concerns about the cardiotoxicity of trastuzumab. It apparently works very well in shrinking HER2+ tumors....but my entire breast was removed, no tumors in there to shrink and no actual breast tissue anymore. I'm very confused.

I am getting a second opinion about treatment as the studies and abstracts I have read say the HER2 targeted therapies work best when the tumors are strongly 3 and above an the results for stubbornly low equivocal results such as mine are negligible. A YEAR of chemo that is specifically for strongly HER2+ tumors before surgery, does not to me seem to be the best course of treatment for my situation. I'm doing my research and while they say it can be considered, even in the cases where it is used they consider th ere

So as of now, I have not had a prescribed course of treatment but am waiting for a second opinion. Does anyone else have experience with equivocal results??

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    I also was equivocal +2 no change after FSH, I have the undisputed top breast cancer oncologist in Seattle. Herceptin was not on the table I had 2 tumors 1cm each one idc and one ilc. My oncodx was 34 chemo was recommended but I decided to go with AI drugs er+ pr-. I am 7 years out so far so good. I had a mastectomy with diep reconstruction. Nodes negative.

    I would think insurance wouldn't cover herceptin but definitely get another opinion.

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  • Macushla
    Macushla Member Posts: 8
    edited May 2018

    Thank you Meow13 (love the kitty pic!) I appreciate your story and insight. I am def getting a second opinion esp as I have done extensive research myself now and if anything, it is contraindcated and can do more harm than good because of the cardiotoxicity, except in those strong positive HER2 cases where it is extremely helpful. But - it's our lives!

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  • Patchie
    Patchie Member Posts: 3
    edited May 2018

    Macusha, what did you decide? My HER2 was also tested twice and equivocal both times. On May 31 I'm having a bilateral mastectomy with tissue expanders, and they plan to test the tumor again once it's removed. My oncologist said that the tumor would be treated as HER2 positive if it tested as equivocal again. Also I haven't found a lot to read about equivocal HER2, and was wondering if you could make any suggestions.

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  • Macushla
    Macushla Member Posts: 8
    edited May 2018

    Hi Patchie. Well, I have been to 4 hospitals, seen 7 doctors, had 5 tests done - every single one of them was repeated at least once. A second and third opinion on treatment, including from Dana-Farber Cancer Research Hospital. No one has agreed on treatment from the beginning. The repeated test results have all been different when repeated in a different lab or even in the same lab by different people! The results have all varied differently, but I am always equivoocal. The Tumor board heard about my case 3x before deciding to treat it as HER2- citing that the equivocal tumors tend to have ore in common genetically with HER2- ones as well as the fact that the efficacy of the chemo with herceptin is simpy not there unless they are strongly positive. They recommended it be treated as neg and I had a unilateral mastectomy with immediate reconstruction.

    First appt with a medical oncologist after surgery, she said she wants to treat me as HER2+ and put me on a yearlong course of chemo with herceptin! I said....."Uh......No. My case had been seen a lot and the concensus was to treat it as neg. If it were + the treatment would have been chemo FIRST to shrink the tumors, then surgery. Are you telling me now that you think it should have been positive and I had a mastectomy for nothing??" I asked "What if you treat an equivocal as positve and then find out after pathology that it is actually negatve?" The answer was that "it simply doesn't work." Sobering, and I did not want to do a year long course of cheo with herceptin. As I'd said, my Her2 result was 2.1. All the research i have done bears witess that HER2+targeted therapy Does.Not.Work unless the testing cones out at 3 and over. I understand the benefit of knowing the status defiintively - believe me, it's MY life! -

    She recommended 2nd opinion, which I did. The 2nd opinion doc had been on the tumor board that had decided about me earlier and said "When I saw your records I knew who you were because I had seen it 3 times on the board and had said then that I was glad you were not my patient!". No one wants to be the one to make the arbitrary decision, I get it. In any case, post surgical pathology showed the results as....you guessed it, still equivocal! She also recommended chemo but suggested I go to Dana Farber for another opinion and get the oncotype dx done for a final decision. As you know, that test is only for HER2- tumors, and she felt very comfortabele saying it was negative, So, if you're keeping track, 2 completely opposite treatment plans,

    Dana-Farber was amazing. The dr was wonderful and walked me through the sample results for the oncotype as it hadn;t come back yet. We were all hoping for a definitive answer finally, She explained that in the scale of 0-100 they treat 0-18 as low risk, chemo is not indicated. 31-Up as high risk, chemo is indicated. The intermediate range of 19-31....she shrugged her shoulders and said it's a toss up. "It's not clear that the benefits of chemo outweigh the associated risks." Very important statement there. She said it would be up to the patient and the doctor to decide.

    Two days later back home I got the results: 25. In the middle of Intermediate of course, as nothing has been clearcut with me diagnosis except that I am 100% ER+. This is the doctor who recommended I go to Dana Farber. In going over the score results of 25, she shocked me by saying she recommends weekly chemo for 4 months. Bear in mind I have no more tumors, had a mastectomy, and the initial consult of radiology is that it's negligible if radiation is indicated. I asked why chemo - as there are no tumors to shrink and no metastasis and she said SHE recommends chemo for anyone with an oncotype dx score of higher than 11! Well within the "low risk - chemo is not indicated" range! That did not sit well with me, She then said I have 24 hours to decide (this was Tuesday) because as of this coming week - I am 8 weeks since surgery and they like to start chemo then, so that means that she would have to schedule day surgery for me within 2 days to have a port put in. I said I would need more time and that she should know that right now I am leaning towards no chemo as every single test has been equivocal about everything and I need to be convinced there is substantial benefit. I also cited some medical journal articles I ahve read and abstracts talking about the over treatment of breast cancer, including the very study the oncotype test cites. I said that since 1/2 the partiipents were given tamoxifen only and the other half were goven tamoxifen plus infusion chemo, was she saying that the women who were only given tamoxifen were having their lives endangered? No? Well, then why is it not a valid choice for me and why are they pushing chemo based on my test results which show between 2-4% increase of benefit? That is statistcally within the margin of error, and if it is up to me - WHICH IT IS - I am refusing infusion.

    It's not the short term stinky side effects I fear, it's the long term liver/heart damage and risk of other kinds of cancer. I have seen it in my sister, ended up having to have a complete hysterectomy as she started showing signs of endometrial cancer, which is a not uncommon side effect of this chemo. This doctor did NOT like that I am not down for infusion therapy and that I had done my homework so thoroughly. She actually asked me that if my score was 31, would I take chemo. I said does it make a difference? The score was 25! SHe then said she wanted to retest because they had tested the biopsty sample and not from the surgical pathology sample. I noted that on the company website it says that either is acceptable. She then called the doc from DF who then left me a voicemail saying she was going to ask to have it retested as the other doctor had just called her and told her it was the wrong tumor - the smaller one, not the larger one she had wanted. Well which is it?! She asked me how I felt about her retesting it, and I said "Honestly? I feel like you have real confirmation bias here and are looking for a reason for my score to be higher - for me to be at higher risk - so that you can feel justified in ordering chemo. And, I feel like I am being bullied into this". Yes, I actually said that.

    Interestingly, they also did a blood test to determine where I am in menopause (I'm 50) and surprisingly the results came back as me being post menopausal! I had zero symptoms, but I did have the birth control implant in for a year - and it may well have completely masked all symptoms, I had been planning on refusing cheno infusion completely: for me, my personal situation, I need to work and I am single, supportung 2 kids in college, the proposed benefit shown on the oncotype dx test results did not outweigh the serious risks to me. As one of the docs had explained, endocrine therapy is the main treatment, I'm strongly ER+ and might expect a 40% benefit on top of my 10 year prospect (which is quite good already) so that is substantial.

    Finding out that I am post menopausal was great. I can now skip tamoxifen which has its own risksm and take aromotase inihibitors for 10 years, I have a radiology consult second opinion to see if they want to radiate the 2 micro metastasis in the nodes, (one is a 1/3 of a milimeter , the other 1.3 milimeter) although Dana Farber said they would not radiate. Have rotating mammos and MRIs every 6 months probably forever now, and I am hyper vigilant. If something comes up I will deal with it and if some day I have another tumor or something happens i will re-evaluate.

    WHat I have learned is doctors hate equivical results! And all of mine were - IHC, FISH, oncotype - all showed undefined results. I uderstand they want to cover their asses, but there is a real trend towards over treatment. The difference in treatment for HER2+ and - is real and substantial. The effects are as well and if you do not test stringy positive, it is not recommended! It will simply not wrk on a negative tumors and you will have wasted time with an ineffective treatment when you could be having the correct therapy .

    Here are some of the abstracts ad journals I cited, as well as a Time Magazine article about the trend. BEST of luck and wishes coming your way!


    Ugh. I just realized we can't publish links, if you want you can email me at Macushla2104@yahoo.com and I'd be happy to send you the links!

    http://www.cancernetwork.com/sabcs/trastuzumab-doe...

    http://tcr.amegroups.com/article/viewFile/16010/12...

    https://www.ncbi.nlm.nih.gov/pubmed/29223481

    http://time.com/4057310/breast-cancer-overtreatment/

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  • Melrosemelrose
    Melrosemelrose Member Posts: 3,018
    edited May 2018

    FYI- I received Herceptin under the NASBP- B47 clinical trial. It is my understanding that the initial clinical trial findings that were recently presented at the San Antonio Breast Cancer Symposium 2017 that Herceptin did not improve outcomes for Her-2- low. Here is a link to an article. https://www.healio.com/hematology-oncology/breast-...

    Hope this helps your research.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited May 2018

    I was equivocal as well, my oncodx score was 34. I was 95% er but pr negative. I believe my oncologist is very thorough no herceptin not even discussed with me but chemo was pushed. I didn't do chemo but did 4 years AI. I am 7 years NED. I think we expect doctors to be in agreement about how to treat us but there seems to be alot of inconclusive evidence on how proceed with treatment. In the end it is up to us to make a choice and hope for the best. They tend to go with standard of care.

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  • Macushla
    Macushla Member Posts: 8
    edited May 2018

    Yes, absolutely. And I am not expecting someone to have a crystal ball. But I was expecting that after all the initial talks of "the decision is up to you it's a gray area as to whether or not there is benefit", that they would abide by my decision. I hoped to have an oncologist who would say "Good choice! I'm behind you, let's do this" - not matter which route I chose to follow.

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    https://community.breastcancer.org/forum/80/topics/864835?page=1#post_5212039

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    https://community.breastcancer.org/forum/8/topics/809420?page=252#post_5166045

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    https://community.breastcancer.org/forum/80/topics/861897?page=1#post_5145080

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  • Icietla
    Icietla Member Posts: 1,265
    edited May 2018

    https://community.breastcancer.org/forum/80/topics/861897?page=1#post_5133654

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  • waytooanxiousmommy
    waytooanxiousmommy Member Posts: 144
    edited May 2018

    I am equivocal for HER2 as well. I go to a teaching hospital and tumor board did not recommend Herceptin. I am triple negative so I had 5 months of TAC chemo and then a lumpectomy and am waiting to start rads.

    Chemo sucks and yes it can be dangerous. Through this whole thing I have done a few things to protect myself. I am eating healthy (lost almost 20 lbs during chemo even when most people gain weight) and I am exercising 30 minutes each day. So far no lingering side affects of chemo and healed quickly from surgery. I am also getting a lot of emotional support from therapy and support groups. I feel great and people tell me I look great and I believe it despite the bald head.

    I have chosen a medical team I can trust and I am turning things over to them and am trying to focus on the things that I can do something about.

    If I were you I would not do the Herceptin since I think you know that its not right for you. Do the requisite research and then STOP and listen to your gut. Saying this because you can make yourself crazy trying to control something that can't be controlled. There is no way to know for sure. For me I have accepted that and I try not to let myself fall into the black hole of Google. It is hard I know. I have my moments of fear, anxiety and panic.

    Eat well, move your body, be loved and enjoy the present moment for its all that we have for sure. We all go when its our time. Breast cancer is only one thing that can kill us. The only thing that is for sure is that eventually we will die of something and it is not up to us to chose when and how we will die.

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