ILC - The Odd One Out?

phoebe58, lol about hair! It's now been a year and a half since I finished chemo (2/14), and 10 months that I've been on Femara. I seem to have less hair that I did before BC, but I can tell things aren't in their final form yet -- I'm still gaining more of that baby fine hair around my hairline on my forehead. And, of course, those two nasty hairs that grow on my chin and the eyebrows I DON'T like are doing just fine! I don't know if you experienced eyelash loss, but no one told me they will all fall out again well after chemo is over. Mine were so lush and lovely by June 2014, then they all fell out again in July. Apparently it can take two years for the grow/shed/grow cycles of the individual eyelashes to get off sync with one another. That seems about right in my experience, as I'm just now noticing that they seem back to normal.

It's been a while and this thread warranted a bump.

For those unaware, a European group published new ILC data recently. It discussed ILC molecular alterations and stratification of three groups with different clinical outcomes, including a group with extremely good prognosis. Discussions about this can be found here: "BC genomic analysis reveals invasive lobular carcinoma subtypes".

The specifics of how this new data can be exploited to propel progress forward is unknown to me, but I suspect it's valuable to researchers when creating the proper framework for future experiments. From a clinicians standpoint, it's tempting to speculate if "outside of the box" oncologists might implement a therapy based on this new data, hoping it results in a ILC remission.

Despite the chronically understudied nature of ILC, the needle of progress is moving forward (feels like snail pace) with these developments:
- The "RATHER" consortium in Europe may be a catalyst to potential ILC targeted therapies.
- A European group finally developed the first working ILC mouse model (I didn't realize this was important and I often wonder the value of any model that can't replicate the complexities of the human body - i.e. Tumor Microenvironment)
- 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.

Am I missing anything?

Knowing that ILC is being researched more now gives me that extra glimmer of hope for the future that I sometimes need despite the fact that so far as I'm aware, I'm currently okay. It's a big deal. Thanks.

Just dropping in officially after having posted once on another page, this time with a signature line.

I'd like to thank all of you for your very interesting information and particularly JohnSmith and Gohan1983 who have reached out personally.

I've waited to post until after a 2nd oncologist opinion. She confirmed my treatment as standard and necessary. I was not surprised, due to my particularly high disease burden, but I am worried I'll be able to live through it all - the cure really can be worse than the disease. For example, if you are post-menopausal and haven't read it, you might be interested in this:

Effect of adjuvant chemotherapy in postmenopausal patients with invasive ductal versus lobular breast cancer

I'm sure it's already appeared in these pages; I'm new and may not have seen it.

I am so sorry you have joined us because of cancer, clj, and hope you find the help and support you need here.

Yours is not the largest tumor I have read about on these threads. As you have probably read, it takes a long time for docs to recognized lobular.

If you have not had surgery yet, please look into a clinical trial the University of Pittsburgh is running just for newly diagnosed lobular patients. Its aim to rate the efficacy of anti-estrogen drugs as treatment for lobular. This is important work and the first directed just at lobular. Here is the link: http://www.upmc.com/media/NewsReleases/2015/Pages/...

In any case, your doc will probably recommend chemo prior to surgery to shrink the tumor. Please research this carefully. MD Anderson does not recommend neoadjuvant chemo for lobular. I had six rounds of Adriamycin, Taxotere and Cytotoxin. I still had micromets in 2 of 4 sentinel nodes and no effect on the tumor. The anti-estrogen drugs might be better route if your lobular is estrogen positive.

Hang in there and prepare to earn your Masters degree in breast cancer. ;-)

Sue

clj - So glad you found this site. I had a large lobular thin and irregular fern frondy shape ILC, and could not see or feel it. I wasn't aware of until it finally showed on mammogram [central 'yolk' the only visible thicker part was much smaller, but longest length they figured was >9 initially ]. They wanted to shrink it first. My original MO put me on TAC, but after I got the Taxol done, a new MO came along at just the right time, saving me from AC and swapped me onto Letrozole to shrink it better, as he said ILC does not often respond well to chemo........ I concur with Sue. That is apparently the new standard, so please do inquire, esp if yours is hormonally sensitive. [if you can figure out how to put your diagnosis info on so it shows below your comments it helps us all understand your situation] When I finally did DIEP surgery they assumed it was well below 5 but with the thin lacy edges it still turned out to be closer to 6 stem to stern, so I ended up doing radiation after all. Now I have finished rads and am starting to feel pretty good and healing well, so there is a light at the end of all this . My followup diep tweaking will be in the later fall [6 months post rads]. I will remain on Letrozole for a long time though. I feel frustrated for you that they did not listen earlier though .

Unfortunately, I do not have any other information yet. The hospital did not tell me anything but the grade of the tumor. I feel that I was not getting the proper care so I have an appointment Monday the 14th with a different doctor and facility. I'm hoping they have all the answers for me then.

clj, as tough as this all is already, I really recommend you seek a second opinion from a larger center like MD Anderson or Sloan Kettering. Unless done two days prior to the mx, a sentinel node biopsy can be inconclusive for lobular. The nodes are frozen, sliced and viewed under a microscope. Lobular can only be determined by staining which takes two days. I was initially told NED after my SNB only to be told two days later that staining showed micrometasis. Oops. The usual story for lobular.

In addition, chemo is no longer recommended by MD Anderson for lobular. Save yourself that ordeal. I wish we had hard data on the benefits of rads, but not yet.

Lastly, if you are considering reconstruction, you could have your mx and recon done at the same time. Please look into the NOLA threads and/or visit www.breastcenter.com. Don't let their being located in New Orleans deter you.

I know this is all overwhelming. You can afford to take a couple of weeks to weed thru this. If you are anxious to start something to fight it, ask about starting an anti-estrogen drug like letrozole. The less estrogen in your system before surgery, the better in any case. I have read of women seeing their tumors shrink before surgery from them.

Please learn from our experiences. Lobular is a unique subset.

Hang in there!

Sue

Dear sueinfl,

Can you join a clinical trial on your own, or do you need to have your oncologist involved? I am very interested in any clinical trials on lobular cancer.

jgab

clj5709,

Please do not worry so much about the MRI imaging. My original imaging was 7x2x5. I was a nervous wreck. I was initially diagnosed with LCIS acting like DCIS. It turned out I had 4 cm of invasive lobular cancer. I had 0/2 nodes negative. So please do not think that the MRI is definitive of the size. My tumor was still large, but there was a lot of activity in the MRI that is not necessarily cancer. I am 8 days out from my bilateral mastectomy. My drains were pulled today. i am supposed to see my oncologist tomorrow, but a winter storm is brewing and I am uncertain if I will be able to make the the drive. I just want closure to determine if I will need chemotherapy or not. I also want to get started on hormonal therapy. Good luck with everything. I also wanted to change doctors at the last minute, but it ended up being the right place for me to stay,

prayers,

jgab

Dear Chloesmom,

I am not familiar with MD Anderson. I am waiting to find out what my follow up treatment or safety net will be. I am assuming it will either be chemotherapy, hormonal therapy, or both? I guess I am uncertain and new to all of this.

JGab

I am always interested to read about ILC and treatment for it. I am a bit of an unusual ILC case in that I had TRiple negative ILC which I gather is rather rare. I had four rounds of TC chemo and then opted for a bilateral mastectomy no reconstruction instead of going for radiation after chemo. My ILC was caught luckily quite early. No lymph node involvement , grade 2 whereas a lot of TN cancers are grade 3 and my tumor was small. It seems, though, that a lot of ILC treatments aren't relevant to me because I was not a candidate for hormone therapies and even if ILC doesn't respond well to chemo that was the only treatment option for me. Also have read that chemo is more effective againstfast growing tumors and I was grade 2 instead of grade 3. I did well with my chemo treatments and surgery and have just moved on with my life because ultimately you just have to accept the hand you are dealt and my cancer could have been worse. I am curious , though, anyone else out there with triple negative ILC. I would be interested in reading about their outcomes and course of treatment for it.

Two new items of interest.

1. This short video just surfaced on the internet today.
"Dr. Charles Perou on Molecular Differences in Lobular Breast Cancer"
It's a recap of the TCGA Lobular subtype data released in Oct 2015.

As discussed in the thread "BC genomic analysis reveals invasive lobular carcinoma subtypes",
those ILC subtypes are:
A. proliferative
B. reactive-like
C. immune-related
Phenotypes B & C were defined by unique features of the micro-environment.
The reactive-like phenotype showed fibroblasts or other types of stromal cell infiltrates.
The immune-related phenotype expressed Immune cell infiltrates, which make them particularly attractive for Immunotherapy drugs, discussed at a high level, here.

2. He also mentioned FOXA1 gene mutations in ILC, which interestingly, made the news today in a separate announcement by the Mayo Clinic, who elucidated on the mechanics of the FOXA1 gene. That news release is here: FOXA1 found to control specificity of cancer cells.

Me too!!! If you could just decipher it so normal people like me could understand that would be great haha!

Lily, My Onc says the same that IDC and ILC are treated the same. I need to do a lot more research!