ILC with HER2 equivocal

mmckowen

I am recently diagnosed (<mo ago) and the waiting is driving me nuts. I had a mammo and u/s 06/16 and 08/17, 3 biopsies done 09/06/2017 showed ILC, ER/PR positive but HER2 has come back equivocal 3 times. Surgeon cancelled my MRI originally said didnt need it since going to do a right mastectomy, but I stood my ground because either they are taking both breasts or I want to know for sure the left is clear. I still want bilateral but will feel more at ease with the MRI. The tumor is at least 10 cm but they do not know if 1 or 3. Both breasts hurt and I haven't had breast pain since my hystero in 2009 and having arm and axillae pain. I can not find anything about what is next for the HER2 and chemo before surgery, pros/cons etc.

toomuch

mmckowen - You've come to the right place for support and information. Keep in mind that everyone's experience is different. I think that it's fairly common for the Her 2 test to be equivocal on the IHC test. It should be reported out as 0 or + 1 = negative, +2 = equivocal or +3. = positive. My initial test was equivocal but was sent out for confirmatory FISH testing. Was that test done on your tumor? This test is usually reported as positive or negative and is considered to be more accurate in diagnosing Her2 positive breast cancer. I had my tumor sent to a NCCN designated cancer for a second opinion on the pathology. If your doctor's are uncertain, you may request this.

A list of NCCN designated cancer centers can be found here:

https://www.nccn.org/patients/about/member_institutions/qualities.aspx

I found that the period of diagnostic workup and waiting to begin treatment was the hardest part. I'm sorry that I can't help with any advice about presurgery chemo because that was not offered to me. I wish you the best.

beach2beach

mmckowen, Sorry you find yourself here. I did not have chemo so I can't answer to that. I do agree with you on the MRI. I opted for a bilateral mastectomy instead of a lumpectomy. Had I decided on the lumpectomy my surgeon said I would go for an MRI to make sure nothing was lurking in the left breast. If that gives you piece of mind, I'd push for it. Chances are good that the other breast is clear, but having that MRI would give you some feeling of security.

Checkout the Chemo threads, I'm sure there are posts there are on pre-surgery chemo. Of course post there too and I'm sure you will get many replies.

Mojojennijo

i am her2+ and Have a 7.3 cm primary they also weren’t sure on mri if I had one or 3 tumors. I have 2 but the other is 1cm they call a satellite tumor. They don’t seem to pay it much mind. So for me I have 6 months of chemo. Ac for 8 weeks. It’s dose dense every other week schedule. Then I start herceptin, perjeta and taxol for Around 4 months if all goes as planned. Then I’m having mastectomy and because I’m over 5cm in the primary tumor I have to have chest wall radiation after everything is done.

But according to my oncologist her2+ tumors get you chemo first.

I’m still learning things as we go along and am no expert. Definitely something to talk to your oncologist about. I had so many scans after the mri and then the mri biopsy. They wanted a ct and bone scan from neck down and then because of those results they did a pet and auxiliary ultrasound.

Annette_U

same result here and then they did a FISH test- was negative. I had FEC chemo first, then 8 weekly Taxols before double mastectomy. Had CAT, MRI, nuclear bone scan and PET , all ' cept MRI during treatment. If you have 10 cm they can see then I would go with a double- you will no doubt get radiation too.Hard to get great cosmetic symmetry even with implants after full breast radiation. The MRI should give them an idea on any/how many nodes are positive.I know you want to get on with treatment but give some serious thought on who your medical team will be and the extent of surgery you care to go through. Are you comfortable having one removed and then will you worry yourself to death about the other?

gigibee

I am new here and in the equivocal boat...my original biopsy done via IHC method came back her2+, I had my lumpectomy 2 weeks ago the results were equivocal. Now waiting on FISH results. It's been two weeks. If it is negative they want to do oncotype which I understand takes more weeks for results...the waiting is the hardest part in all of this.

Meow13

My results her2 equivocal or +2, still considered negative. My oncodx was a 34 chemo was recommended but I chose to do just AI drugs. Ok after 6 years. I had one ilc and one idc no nodes er+ and pr-.