MOs conflicted on HER2-clock ticking-Please Help if you can

shortney36

I began local treatment (biopsy) and then moved to the NCI Moffitt near me. During that transition my original biopsy locally was Her2 ICH equivocal, FSH equivocal and then I moved to Moffitt and they came back ICH equivocal and Dual ISH negative non amplified. No neoadjuvant straight to surgery... not expecting positive nodes, got 7.

To do due diligence, I went to see the local oncologist again after BMX and before chemo egan for E+ 90%, P+ 85% Her-. Her nurse said, wait she is positive! Apparently, there was another addendum of FSH that said positive 2.2 that was never sent to me or Moffitt from the originating local surgeon I saw. That set off a storm last Friday of further testing.

Local Pathology:

ICH equivocal, FISH equivocal, Fish positive 2.2 ( biopsy sample)

Moffitt pathology:

ICH negative, Dual ISH non amplified/ Her2 negtive (biopsy sample)

ICH equivocal, Dual ISH not amplified/ Her2 negative, but Intratumoral heterogeneity observed. (mastectomy sample).

Her2 negative (LARGEST LYMPH NODE SAMPLE).

Moffitt tumor board called it Her2 negative.

The local oncologist who has a huge following here, says if it ever says +, I should be treated as +, because those cells are the aggressor no matter how low amplified. She said my tumor is acting like Her+ ( large, grew quickly from DX to BMX, many positive nodes, grade 3). She recommends: TCHP , then HP, then Lupron and AI (heratinimb)

The NCI/Moffitt oncologist says there is no strong data that shows I am not negative and no clear indication that my low HER2 amplification would benefit from HER2 therapy. The Moffitt Tumor Board called it Her2 negative. They say ACT/ NO herceptin.

I am the least qualified person to make decisions and with everything I am facing, am trying hard to keep it together in case I go down the wrong path. I am choosing the NCI center, as there is less chaos and runs smoother in all aspects scheduling/professionalism/insurance authorizations etc. But, it is weighing on me so hard that there is non-consensus and that I may be the one that causes a recurrence by making the wrong choice.

DATNY

I agree with your first MO. If it's her2+ should be treated accordingly. This means adding HP to your therapy. They have little side effects (unless you'll be one of the unlucky 2% with heart problems). These therapies are shown to be extremely effective, so they will offer you an added level of protection. And given the numbers of nodes involves, I would take the most aggressive and comprehensive treatment offered to me.

Alicethecat2

Hello Shortney

If you have the opportunity to take Herceptin - with a HER2+ tumour - I would take it.

I speak as a Grade 3 HER2+ positive six-year survivor.

Your onc will monitor your heart. I had no problems.

Grateful thanks to Dr Slamon and the team who developed this immunotherapy treatment.

Good luck

Alice

NotVeryBrave

Perhaps a tie breaker? Johns Hopkins does pathology for second opinions. I would see what one more reputable facility has to say.

While the potential long term serious SE's from HP are few, they still exist. And being on Herceptin for a whole year if it's not needed would be a waste.

kiki2017

My first post ever but it is rare that I see another person with this HER2 issue. I hope this helps you. I am at one of the top cancer centers in the US and the tumor board decided that since I am very borderline, better to treat me with Herceptin/Perjeta and not need it than to not treat it and really have needed it. I was more than okay with that approach since I would always wonder (if my cancer returns) if I really needed the Herceptin/Perjeta if I had not had it as part of my treatment. I agree with your oncologist's statement, "The local oncologist who has a huge following here, says if it ever says +, I should be treated as +, because those cells are the aggressor no matter how low amplified." A lot of times test results can vary from labs/pathologists depending on quality and experience. Best wishes to you and God Bless...

TriciaK

I think if there's any chance you could be positive I'd go with your first local Onc, better to be over treated than under with her2+. I it was me I;d want the herceptin.

gigibee

did they do oncotype testing? Asking because that also tests Her2. I was similar in that my biopsy was positive using IHC method but FISH method and oncotype on actual tumor at lumpectomy came back negative. FISH is the standard and considered more accurate. I was treated as negative.I would consider rerunning the pathology at Johns Hopkins as mentioned above. Also if you are negative wondering is Herceptin/perjeta would even help

meg2016

I had differing Her2+ results on multiple pathology opinions. They said in this case they treat as her2+ because likely at least part of the tumor is her2+, different tissue samples may show up differently on different tests.

PeachyJeanne

My original biopsy came back ER+/PR+ HER2- I also and a FNB of a lymph node that came back positive. I had neo-adjuvant ACT dose dense chemo June-Sept 2016 followed by a unilateral mastectomy (left) in November 2017. There was some residual cancer in the breast but 4/4 nodes came back negative. The whole node positive to node negative presented a question regarding the need for radiation. There is some indication the risks outweigh the benefits in this scenario. After much agonizing, i enrolled in a clinical trial and was randomized into an arm that will not receive radiation. I thought I was moving toward having exchange surgery and 5-10 years of Tamoxifen.

Then I found out the pathology from the mastectomy showed HER2 equivocal and was sent for FISH. The first test failed so another tumor block was requested for testing. That test came back showing amplification. I have just started Herceptin and Perjecta with the first few doses including CMF chemo. It was a real gut punch after thinking I had infusions behind me; but I've come to terms with the fact that getting the right treatment is the ultimate goal. So I've put my big girl pants on and will get through this year of infusions.

I was told biopsies are small samples of the tumor and there are cases where there are different cell types throughout the tumor so HER2+ was not captured. This is why official diagnosis is not determined with biopsies, but after surgery.