HER2 equivocal and LVI positive on path report?

ek25

I just had a second biopsy (this time an MRI-guided), which unfortunately changed my diagnosis from DCIS to IDC.  I just got my pathology report back and while I'm waiting for the doctor to call me to discuss it, I'm kind of freaked out about a couple of things and was hoping a few of you could weigh in who had similar situations.

I am scheduled for a lumpectomy and sentinel node biopsy next week so I don't yet know my stage, but the path report said it is IDC, .5cm, grade 2, ER+/PR-, HER2 equivocal (my score was 2), but that LVI was present.  I'm kind of freaked out by the latter two things.  Because I was HER2 equivocal, my results automatically got sent for FISH testing and I probably won't know those until next week.  Does anyone know what percentage of the time the FISH results come back positive or negative with a score of 2?  I looked and didn't find any studies out there discussing it.  

Also, I've seen other threads on this site about LVI.  Some people seemed to say their oncologists weren't too concerned about it, but everything I've read looks scary.  I'm mentally preparing myself for a positive sentinel node following surgery next week.  It seems the only "good" thing I have going for me is that my tumor is small, but what I've read is that LVI presence is positively correlated to tumor size, so why is mine positive with such a small tumor.  That's what scares me and makes me think it's something really aggressive.  Not a grade 3, but as a grade 2, it's not as nice behaving as a grade 1 either.

Can any HER2 equivocal or LVI positive women weigh in here with their experiences.  I'd really love to hear them.

Thanks. 

ashley2

hello ek25, I am her2 equiv with Fish negative, and LVI involvement. but no nodes involvement. I had mastectomy, chemo ACx4 Taxolx12( more 3 to do) and herceptine (I am in NASBP b47 trial - herceptine arm)  . I'll start 33radiotherapy ( because of the LVI) 1 month after chemo. this is my experience with LVI. I'm scary also because of the LVI, not many infos about, ...we'll see .........

good luck 

ek25

Hi Ashley,

Thanks for your note.  Can I ask what your equiv score was before it was sent for FISH testing?  I know some places send it if it's a 1+ and others only send it if it's a 2+.  I'm hoping I come back negative as that's just one less scary thing to deal with.  I had some DCIS mixed with the invasive, and I saw somewhere where DCIS is almost always HER2+ although they don't test for it with the DCIS diagnosis.  Fingers crossed!  That's encouraging that you had no node involvement.  I need to hear from more people like you.  I have my surgery this Tuesday where they'll clean things up and hopefully get clean margins and also do the sentinel node biopsy.  

That's great news for you that your nodes were negative, but smart to have done the chemo I think.  Since my tumor is so small and I'm young, I'm afraid they might recommend no chemo if my nodes are negative (assuming I'm HER2-).  It scares me that if LVI is present they wouldn't give me some sort of systemic therapy.  Hope chemo wasn't too rough for you.  

Best wishes. 

mdg

I had a equivical HER2 score (I don't remember what it was) and then was negative on the FISH test.  I also had LVI.  I was DX in Dec 2010 and am doing fine now.  There is not much info on LVI but what I found also scared the crap out of me.  My doc said he would be more concerned if I was grade three than having LVI.  I was grade 2 with a 1.4cm tumor. 

ek25

mdg,

Thanks for your comment.  I actually just got my FISH back last night and mine was negative too, so that's a relief.  I am also a grade 2.  Can I ask why you had chemo for a relatively small tumor that was grade 2 and you were Stage 1 with no nodes?  Was it because of the LVI?  I'm just trying to get a sense of what my path might be.

thanks again. 

GottaloveNED

Just saw this thread. I was HER2 equivocal after 2 regular tests and the FISH test. My onc gave me the choice of herceptin or not, but with a recommendation of yes. My tumor grew from not visible on the mammo to 5.5 cm. in a year, so I voted yes too. I had 1 node positive, so chemo was always in my treatment plan. I can't put my hands on my path report right now, but the first test was 1.9 and the second was 2.1, I think. I had 4 dose dense cycles of AC and 12 weekly treatments with taxol/ herceptin, and then just herceptin for a year every 3 weeks. The herceptin didn't have any SE's for me, so it was just a case of committing to a year of infusions. I figured better safe than sorry.

mdg

I got two opinions on chemo. One med onc said no and they other thought I could benefit.  I had to make the choice myself......blech!  It was the hardest decision to make in the process!

I chose chemo for a few reasons:

1.  My son was only 4.  I wanted to do everything I could to beat this.

2.  LVI - that was so scary for me.  Everything I read about this was scary.

3.  Grade 2 - a gray area

4.  Oncotype score 17.  My doc said at the score of 17 no chemo but at 18 it would be a personal choice as that would have bumped me into the intermediate range.  With the clinical trial currently evaluating if the oncotype score ranges should be adjusted, it made me believe there were enough people questioning no chemo at higher scores in the "low range"

5.  I found out about Penguin Cold Caps and realized I could keep my long hair during chemo and not have to broadcast to the world that I had cancer.

6.  I was 45 at diagnosis.  I was in great health (other than BC of course). 

I guess I had to make the decision that I knew I could live with.  I did not want to look back with regret.  I knew that based on my personality (type A and worrier) that if this came back and I had not done chemo, I would never forgive myself.  I guess if I do chemo and it comes back, God has a greater plan for me. 

Each of us has to evaluate the information given to us and apply to our own life/personal situation.  It is a hard thing to know what to do, but you will figure out what is best for you in your treatment path.  Feel free to PM any questions.

Best of luck!