ILC - The Odd One Out?

Dear 614,

FISH stands for "Fluorescence in situ hybridization" (FISH test). The FISH test is what my doctors used to determine if my cancer was positive or negative for HER2 (I am negative). There is more info about the FISH test on this website ; http://www.breastcancer.org/symptoms/testing/types...,

From what I understand, the FISH test is less commonly used, and was ordered for me because my initial pathology results were inconclusive for HER2. I guess FISH is more accurate. Hope this helps!

PS, I read your post above and I wish you a good outcome with your suspicious area. This BC stuff is not an easy road! Take care.

According to the Mayo Clinic Breast Cancer Book, FISH is a test.

"For HER2+ immunohistochemistry results, a doctor may recommend a FISH test to confirm whether the HER2 gene is over amplified (positive). FISH uses fluorescent DNA markers to find extra copies of the HER2 gene. The results are generally reported as being either positive or negative. "

FISH stands for fluorescent in situ hybridization.

Here's some interesting ILC related news.

Dr. Francois Bidard, a French based MO, recently contributed to the forum by publishing new results for HER3 mutated stage IV breast cancer. His team used a chemo-free, dual HER2-blockade [Herceptin & a drug called Tykerb (Lapatinib), a protein kinase inhibitor] on a patient which resulted in a complete metabolic response in 2 weeks, followed by a confirmed partial radiological response, and the disease has been controlled (NED after surgical removal of the liver metastases) with no chemo for more than one year.
HER3 mutations are rare in IDC and more common in ILC (I believe up to 15% have this mutation).
Based on the research, he has encouraged advanced staged ILC patients to get HER3 testing.
(Correction: HER3 gene mutation testing)

Please check out his thread in the research section of the forum:
HER3, a new target in stage IV breast cancer (lobular subtype++)

John, is HER3 only present in metatastic or HER2 negative patients? Do we know if it is present in HER2 positive patients also? I know there is a greater percentage of HER2 negative patients with ILC, but not all of us are.

thank you!

thanks, JohnSmith, for highlighting the news. But, please, keep in mind that it is about MUTATION testing of the HER3 gene (by sequencing)... People asking their Med Onc for "HER3 testing" will get a negative answer otherwise (as "HER3 testing" will be understood as the HER3 protein immunostaining, which has no interest). TheHER3 gene has been integrated in most but not all targeted sequencing panels.

Dear John,

I was surprised by your post (about not finding any test available for HER3 aka ERBB3 sequencing). A quick glance on the web (suggested keywords : targeted sequencing ERBB3 cancer) showed me several sequencing providers : FoundationOne or Quintiles Comprehensive Cancer Panel include ERBB3, for example... Please note that several other sequencing companies do exist in the US and worldwide, and I just mentionned two big US companies I know. GenomicHealth is probably offering a similar service, but I was not able to find it. The test you're mentionning is about the HER3 protein, which level of expression is detected by immunohistostaining - as previously said, the HER3 staining has no interest.

Can we get this test done privately, and if so how?

Dr. Bidard, Thank you very much. I thought that was the case, but wanted to be sure. Best of luck in your further research. If you need research partners in Greece, do let me know.

I don't know...I thought cancer, ILC or any kind, can metasasize anywhere.

I know ILC can metastasize to the lungs I just was curious if it forms an actual nodule or if it grows in the "sheet-like" fashion like it does in the breast.

I just met with my MO this past week to discuss stuff -- my pathology slides were revisited by a different radiation guy out of town, when my 'grey zone' case was discussed recently -- and some ductal was discovered mixing in with the previously identified lobular only. My MO says apparently I have a 'hybrid' ..... like a Prius car I guess.

Anyways, his lobular comments were this: lobular so hard to detect initially as it starts growing as delicate fern fronds, and only when big enough gets sufficient density in the middle that shows on a scan -- sort of like palm of hand, with frondy fingers -- which is why when they actually do surgery they are frequently surprised by the larger size, as the extensiveness of the fronds don't show until you are in there. He says lobular is generally slow growing and can even hibernate for a while, but it can, down the road, become active again [usually later than ductal] so he encouraged me to stay on Letrozole for not just 5 or 10 years, but forever. Along with the dormancy issue, he says he always worries that lobular is more likely to have a local recurrence than distant, { but I did have my bones, liver and lungs ... apparently the most common first sites ... scanned just in case -- so far fine}. I am in the dark too regarding whether it maintains the same sneaky delicate structure and growth pattern when [if] it spreads distally, as that would make detection a challenge........

Also very interesting about the Her2- and-- I was only declared negative after the FISH.......

phoebe
That's a pretty good description and consistent with the research I've been doing during the last year or so.

I prefer not to use the term "sneaky". Biologically speaking, if it proliferates, it probably does so in the same manner it did within the breast, although I haven't researched this very much. Mutations often occur when it proliferates, but at its core, I think the loss of the sticky adhesion protein, E-cadherin (which is the hallmark of lobular) never changes. Without E-cad, the cells don't clump together very well, and grow exactly the way your MO described it. It's an interesting question.

In terms of surveillance, I've questioned the lack of post-surgical imaging technologies; NOT to detect ILC in the breast, but to detect possible distant progression. This is an area that worries me. Depending on where you live, the standard of care is often "no scans" after a double mastectomy. For those that fall into that category, one must wait for disease to progress before justifying new diagnostic imaging and/or facilitating access to a new therapy, which defies all logic.
The only thing I've thought of as a way around this problem, is to seek out "radiology clinical trials" that involve experimental (next generation) imaging technologies designed to deal with this potential problem.
There would be a couple benefits to participate in a imaging clinical trial. 1. There's no (or little) cost, especially if done at a big medical school, 2. There's a chance that the new imaging might detect rogue growth, which would normally be undetectable leading to advanced progression that may be too late to treat effectively.
The only other option is liquid biopsies, but generally speaking, the technology is still in its infancy, despite being optimized for Stage 3 & 4 at the moment.

In the end, we simply need better therapies, which is slowly starting to happen. Despite the chronically understudied nature of ILC, the needle of progress is moving forward.
- The "RATHER" consortium may be a good source of potential ILC targeted therapies.
- A European group finally developed the first working ILC mouse model.
- The first international ILC Symposium will be happening next year (Sept 2016), in Pittsburgh, Pennsylvania, USA.
- The University of Pittsburgh has the ILC Biomarker trial launched. We need "newly diagnosed" patients for this.
- The "RATHER" consortium started Phase 2 of their ILC clinical trial evaluating PI3K inhibitors (~50% of ILC has PI3K pathway activation).
- There are a couple other trials that might warrant Stage 4 folks to participate in, since the therapies, in theory, may be useful against ILC.

Wish there was a "like" button, @JohnSmith....thank you!

You always have such helpful and well researched information John, thank you.

Bec65 -- good to know...... ps how is your hair doing on the letrozole? Mine was initially thick post chemo, but now thinning a bit with a recent quarter sized bald spot at back