Invasive Lobular Cancer HER2+ve - anyone else?
 

I am triple positive - ER+ 90% PR+ 95% HER2+++ ILC. Being in a minority, I wondered if anyone else has lobular cancer that is HER2+. I only had 2 replies on the US breast cancer forum, so thought I would try here too.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Sue,

If you use the 'Search' button on the top bar and type in 'Lobular Her2', you will be able to see previous postings on this particular type of breast cancer. I think there are 5, 6 active members who are lobular and Her2.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Thanks Jackie,

I did do that already. I'm actually worried about my pathology report and will ask the oncologist tomorrow about whether we should get a second opinion. Also going to ask if it showed as pleomorphic.

Sue

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

You are welcome.

2nd opinion is always good idea. My oncologist never communicated 'fully' with me. My BC was weakly ER+ (5%? 10%) in 2003 and he told me (during the first meeting when I was taking ample notes) mine was ER-, so I couldn't use hormone therapy. But after I completed chemo and radiation, 2, 3 different medical providers mentioned about taking Tamoxifen because my BC was ER+. I thought they were 'crazy'! I finally called the oncologist's office and got it clarified and started taking Tamoxifen.

After the chemo for my recurrence in 2007, my hormone status had changed to ER-. It was not communicated to me until I (just last month) inquired about aromatease inhibitor after Tamoxifen and then was told that it was not necessary.

Looks like you have caught it early (node negative). Andrea Barnet Boudin had her ILC treated successfully. She hasn't have time to get on the Board lately, you might want to send her an e-mail.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Hi Sue and Jackie--

I am ILC---invasive lobular cancer that is also HER2+

What is the deal? are we that much of a minority?

I am ER and PR 0% --big time negative

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Asked the onc about the lobular HER2+VE pleomorphic thing today. He will request a copy of my path report for me. He said that most HER2+ve lobular cancers are pleomorphic. It does put us in the rare group - 1% of all breast cancer population.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Hi Sue-

I am unsure of what the ve is after the Her2+ in your post??

--and
not clear on what pleomorphic is?

I looked at and read my pathology about a zillion times and never saw plemorphic--

can you pls define for me and perhaps it is noted in other language on path reports in addition to pleomorphic--

Thanks so much---

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

The +ve is just an abbreviation for positive. I'm not 100% sure what pelopmorphic is, I'm still researching it. I think it's basically agressive. If I find out more I'll post it. I'm looking for an article I previously found that indicated pleomorphic HER2 lobular responds better to herceptin. If I find it, I'll post it.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Thanks Sue!!!

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

I found it:

http://jco.ascopubs.org/cgi/content/full/26/35/5823

This is the best definition I can find of pleomorphic:

In recent years, a new variant of lobular carcinoma, known as pleomorphic lobular carcinoma, has been described. The pleomorphic variant shows most of the architectural features of classic lobular carcinoma, but is composed by large and pleomorphic cells. In addition, this variant is reported to have a more aggressive clinical behaviour when compared to its classic counterpart. In fact, the behaviour of the pleomorphic variant is more similar to that of high grade ductal rather than lobular carcinomas.

I don't yet know if mine was pleomorphic hopefully I'll find out.

Sue

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Thanks for this Sue-

I reviewed my pathology report again and there is no mention of pleomorphic.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

I got a copy of my path report this morning when I popped into my GP to see how his receptionist is. She just had a breast off as a result of going for a checkup because of my diagnosis. He said he has had 5 women recently diagnosed - it's an epidemic.

It is pleomorphic. What that seems to mean is that lobular is usually less agressive than ductal, but pelomorphic is a more agressive form of lobular which puts it up about equal to invasive ductal.

Now I have more results to research - I am extremely bored being off work. I am a software engineer so am usually quite stimulated by working.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

HI Sue-
so sorry about that---did it indicate right on your report that it was pleomorphic?

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Yes it did - quite clearly. I'm now researching the nuclear grade etc.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

I think the nuclear score is part of a 3 part series called an SBR Score

My path shows:

Tubule score+Nuclear score+Mitotic score=SBR Score

I had 4 ILC tumors:
All my Tubules are a 3--and all my Nuclears are a 3---3of4 Mitotics are a 2--and one is a 1.

Evidently the highest SBR Score is 9--I am 8/9 for 3 tumors and 7/9 in one tumor--

I am not sure what tubule-nuclear and mitotic are indicitive of---

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Mine was grade 3 made up of Nuclear grade 3, tubule formation 3 and Mitoses 3 which add up to 9 - ie grade 3. Just means it's very agressive. That's the highest grade they give.

I also had no lypmhovascular invasion which is apparently good.

It also said I had extensive lobular carinoma in situ surrounding the invasive tumour, so it sounds like it had just started turning bad.

Boy, am I lucky it was found so early, that's all I can say. I was told it was 11mm but it was actually elongated 11mm x 6mm x 7mm which as my husband says is equivalent to a 5mm circular shape.

Now I want an MRI of the other breast seeing lobular is so sneaky, but my onc said nothing would happen while I'm having treatment anyway. But I'll be asking for one later.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Good idea on the MRI---my ILC was NOT seen on the mammogram--it was dx from the MRI I had---

That is one of the reasons I had a bilat---this ILC is just too unpredictable--and I just can't imagine doing this again--here I am 14 months later--still feeling like crud and still going for weekly treatments--who knew!!!!

Good Luck--

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

My LVI--lymphovascular invasion was 'intermediate'--so I wasn't a negative--but not sure what intermediate means---what did your research indicate?

thanks---

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

My LVI was noted as absent. Went to the GP today to ask for further clarification of the report and he said LVI is indicative of possibility of local recurrence.

I actually freaked out a bit because when they described the margins taken they were only talking about the invasive tumour - I'm going "what about the extensive LCIS?!!!!!" have they got that as well. The doc said usually when they cut these things out they are a mess with sometimes more than 1 type mixed in. He said as it said "No involvement" re the margins they should have got it all. I certainly hope so.

Re: Invasive Lobular Cancer HER2+ve - anyone else?
 

Hi,
I am new to this site, so im not sure exactly how to operate the responses....
but i am not new to cancer, unfortunately. I had a recurrence of lobular breast cancer that is HER2 +++, ER+, node negative the second diagnosis. I was initially diagnosed in 2000 at age 46 with the exact same pathology but 3 positive nodes. The cancer returned in a breast area that had been removed with mastectomy in 2001. Then I had chemo but not Herceptin. I am now getting Herceptin and responding well. I had re-mastectomy, and 28 rads to chest wall this time. No previous rads.
Anyway, I am seeing my oncologist tomorrow and I will ask her the definition of pleomorphic. I had also seen the article of the study you mentioned (although only 4 subjects, because we are so RARE! ).
I am now NED .
I recently connected with another of us rare HER2lobs on this very site. Sheis doing well.
I hope you are doing well!
SherO