Invasive Lobular Cancer HER2+ve - anyone else?

[SuePen]

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.

[Jackie07]

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.

[SuePen]

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

[Jackie07]

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.

[Cal-Gal]

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

[SuePen]

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.

[Cal-Gal]

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---

[SuePen]

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.

[Cal-Gal]

Thanks Sue!!!

[SuePen]

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

[Cal-Gal]

Thanks for this Sue-

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

[SuePen]

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.

[Cal-Gal]

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

[SuePen]

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

[Cal-Gal]

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---

[SuePen]

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.

[Cal-Gal]

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--

[Cal-Gal]

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

thanks---

[SuePen]

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.

[SherO]

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

[SuePen]

Hi Shero - I'm OK. Still scared about the whole HER2 thing. I mentioned above about asking for an MRI - didn't get it that year and was diagnosed with a new cancer (not lobular) in the other breast a year later. My original surgeon should have ordered one before the first surgery - turns out the other cancer was actually there at that time but was missed. In a way I'm glad they didn't find it as I avoided a BMX - just had a lumpectomy on the new one and rads again. I switched surgeons and am much happier with the female one I chose - very neat stitching, so good you can hardly see the scars. I now have mammo/ultrasound alternated with MRI every 6 months. So far so good although I'm nervous about my next MRI in October.

[suzan w]

Hi!!! I had invasive lobular...Her2+++, ER+, PR+. have been told by my onc. not a very common combination.

[SuePen]

Yes, Suzan - about 0.1% of bc patients I believe - we're very special. Good to see you doing well after 7 years!!!

[Andrea Barnett Budin]

Hi SuePen and y'all,

I don't get to the boards as often as I used to ('04 etc....). Much happening in my life. Not all good, but mostly, and I remain -- ONE WITH THE UNIVERSE, because of, and in spite of, it all... And I AM STILL STABLE (since '99). Miracles do happen!

Yes, I was dx in '95 with ILC -- age 50 (post meopausal). They didn't do the Her2 thing in those ancient days. I was borderline ER/PR. They put me on Tamoxifen, hoping I would derive some benefit from it.

3 yrs later the canser recurred. (Disrespect intended. Feels empowering... :o)...) Still ILC (invasive lobular carcinoma) but then throughout my liver. Then ('98) ER/PR -- negative. Hmmm. Then -- I asked to be tested for the HER2 gene, then only done at UCLA, where Dennis Slamon, the master behind the Herceptin saga was. My husband and I had been reading about all things breast cancer, though never expecting metastasis. Ever positive through and through, attitude-wise! Turns out -- I was 80% HER2 positive. That's how they graded it back then.

This was Aug '98. Herceptin was fast-tracked by the FDA on September 28, 1998 and Herceptin became available to all metastatic bc patients. Thank you God and Dennis!!

I was told this means -- highly aggressive form of bc. Which is why I chose Taxotere (along w/my 3rd onc's suggestion). I asked him why he chose that chemo drug. Answer: Because it is THE MOST AGGRESSIVE WEAPON WE HAVE IN OUR ARSENAL (again, '98). I decided to fight fire with fire. Take the harder road, my Inner Voice told me. Other oncs had suggested kinder gentler chemos, as they all KNEW I'd be on "long-term chemotherapy for the rest of my life".

Well, you can read my story below. I'm still here.

About 5 yrs ago my then new onc (brilliant w/what appears to be a personality disorder) questioned that I was ILC AND HER2+. Said that would be VERY UNUSUAL! I asked if he was questioning my original pathology reports. He said, Well, (he shrugged) doesn't matter. He also said it was remarkable that I was still alive. Guess so.

The right surgeons, 4 awesome oncs, fabulous nurses w/savvy, the right chemo, meditation, guided imagery, tenacity, tons of supplements daily and THE POWER OF THOUGHT and POSITIVITY brought me here I believe. And, I do BELIEVE!

I just kept putting one foot in front of the other, seeing that I was in a process and envisioning myself far far into the future, some 13 yrs later, glowing, healthy and well! These are essential ingredients for success in my view.

Any questions, please, please, ask away. I am here for you. Always. Even when away from the board. You are my Sisters. Family!

With Love and Light,

Andi

[Kimbythesea]

Hello fellow Her2+ Lobs. I am so glad we live in the age of advanced medical science and the internet so those of us with this rare diagnosis can find one another.

What I'd love to see is a Triple Positive ILC patient who has survived 20 years with no problems.

This really scares me and I'm having trouble wrapping my head around the sneakiness of the lobular and the ickiness of the HER2NEU positive factor.

I asked my Onc if there have been any other women with my ILC Her2Neu positive status at the cancer center in Ventura, CA where I go, and I was the first.

[Lani]

I recently researched for an old classmate of mine who had triple negative pleiomorphic lobular bc-- there was not that much to research in comparison with her2+. Just google entrez pubmed and enter pleiomorphic invasive lobular breast cancer. If you have any affiliation that helps you access original articles go for it. Much more needs to be done to characterize this type of bc.

[Jackie07]

Come across one abstract stating the outcome is similar to the more common Invasive Ductal Cancer:

Ann Surg Oncol. (http://www.ncbi.nlm.nih.gov/pubmed/21913022#) 2012 Apr;19(4):1107-14. Epub 2011 Sep 13.
Lobular breast cancer: same survival and local control compared with ductal cancer, but should both be treated the same way? analysis of an institutional database over a 10-year period.

Fortunato L (http://www.ncbi.nlm.nih.gov/pubmed?term=Fortunato%20L%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Mascaro A (http://www.ncbi.nlm.nih.gov/pubmed?term=Mascaro%20A%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Poccia I (http://www.ncbi.nlm.nih.gov/pubmed?term=Poccia%20I%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Andrich R (http://www.ncbi.nlm.nih.gov/pubmed?term=Andrich%20R%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Amini M (http://www.ncbi.nlm.nih.gov/pubmed?term=Amini%20M%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Costarelli L (http://www.ncbi.nlm.nih.gov/pubmed?term=Costarelli%20L%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Cortese G (http://www.ncbi.nlm.nih.gov/pubmed?term=Cortese%20G%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Farina M (http://www.ncbi.nlm.nih.gov/pubmed?term=Farina%20M%5BAuthor%5D&cauthor=true&cauthor_uid=21913022), Vitelli C (http://www.ncbi.nlm.nih.gov/pubmed?term=Vitelli%20C%5BAuthor%5D&cauthor=true&cauthor_uid=21913022).
Source

Department of Surgery, Senology Unit, San Giovanni Addolorata Hospital, Rome, Italy. lfortunato@tiscali.it

Abstract

BACKGROUND:

Invasive lobular carcinoma (ILC) is believed to be more often multicentric and bilateral compared with invasive ductal cancer (IDC), leading clinicians to pursue a more aggressive local and contralateral approach.
METHODS:

Retrospective review of a consecutive cohort of breast cancer patients operated at one institution from January 2000 to January 2010 was performed. Median follow-up was 4 years.
RESULTS:

There were 171 ILC (14.5%) and 1,011 IDC patients in the study period. Median age (63 vs. 65 years) and tumor diameter (1.7 cm) were similar in the two groups. Diagnoses of ILC were more frequent in the second half of the study period (55/465 vs. 116/662, p<0.01). Multicentricity was reported in 108/1,011 (10.6%) IDC and in 31/171 (18.1%) ILC patients (p<0.01). A positive margin of resection at initial surgery was documented in 71/1,011 (7%) IDC and in 21/171 (12.3%) ILC patients (p<0.001). Although the rate of mastectomy decreased over time in both groups, this was more pronounced for ILC patients (p<0.001). Locoregional control, contralateral cancer, overall survival, disease-free survival, and survival according to diameter, nodal status, and type of surgical intervention did not differ between IDC and ILC. On multivariate analysis, stage of disease and hormone receptor status were associated with disease-free survival, but histology was not.
CONCLUSIONS:

Although ILC is more often multicentric, bilateral, and associated with a positive margin of resection, local control and survival are similar to IDC. ILC can be treated similarly to IDC with good results.

[Andrea Barnett Budin]

I just recently started a thread for her2+ invasive lobular.

Please check it out.

Andi

[Aussie Girl]

Hi,
I am an Australian pathologist who has grown her own HER2 positive cancer. I have just finished my first round of TCH chemo.

Pleomorphic lobular carcinoma (PLC) was reported in the early 1990's, but pathologists have become more aware of the diagnosis in the last few years as the E-cadherin stain which helps pick which cancers are lobular and which are ductal became widely available.

Invasive PLC closely mimics invasive duct carcinoma and PLC in situ mimics DCIS. Invasive PLC is usually grade 3 and appears to behave similarly to grade 3 invasive duct carcinoma, and a bit worse than classic invasive lobular carcinoma which is almost always Grade 2.

Don't get too hung up on the "pleomorphic lobular " bit. It is a handle for pathologists to help with diagnosis. Until E-cadherin came along these cancers where often misdiagnosed as grade 3 invasive duct carcinoma.

PLC should be treated in the same way as all breast cancers are - on the basis of size, tumor grade, ER status, Her2 Status, node status, presence of distant spread etc.

LVI is important, if extensive, particularly increasing the risk of local recurrence and also as a factor in pushing an oncologist towards a particular type of chemo, or a radiation oncologist to give local radiation to chest and nodes.

In my opinion, invasive and in situ pleomorphic lobular carcinoma should be completely excised if feasible.

Low grade classic lobular carcinoma in situ (LCIS) can be wide spread and does not necessarily have to be excised (which can be hard to do without mastectomy and then it can turn up in your other breast anyway.) Classic (LCIS) is always ER+ and can be controlled by the other hormonal therapy, chemotherapy and radiation provided for the higher grade lesions. I would not have a double mastectomy for residual classic LCIS unless I had a very strong family history and my oncologist advised it.

Your oncologist will be able to provide you with information about your specific risks and best therapy. It just takes time to get it clear in your head.

See this site for an excellent book you can buy to help you in your journey.
http://www.breastcancertakingcontrol.com.au/

If you have any specific pathology questions, I'll do my best.

Aussie Girl