ILC - The Odd One Out?

karen1956 Just read your post and the thing that stuck out for me was when your doc said nothing much has changed in 10 years! Really? Just another example of how far we have to go....sad

Kanit - It's so great to hear that your tumor is responding so well to the chemo! I had DD AC-T, oncotype 12, 2 positive nodes with ECE. At my last MO appointment in January, 5 1/2 years post diagnosis, I asked my MO if I were diagnosed in 2016 with my same stats would you have still recommended chemo for me. He didn't hesitate to say yes. I would still recommend chemo for you today. I have never regretted my decision. It's not often that women with ILC who have good results with neoadjuvant chemo post, so thanks for sharing and good luck with the rest of your treatment!

I feel very lucky because my ILC was detected through my annual mammogram. What appeared to be a 7 mm isolated tumor, though, was part of almost 6 cm of multi focal cancers. It took 3 months for doctors to run MRI"s biopsies and genetic testing. At that point doctors still believed I only had 2 tiny (7 mm and 4mm) tumors. I tried a lumpectomy but when the pathology from my lumpectomy came back showing so much cancer I had no choice. I just had a left mastectomy with a tissue expander done almost 2 weeks ago and am recovering well. This was, I feel, the easy part. I am a DES daughter. My mother is a 2 time ILC survivor (although gladly I don't have any known gene mutations). I'm now 48, just starting tamoxifen and 2 oncologists have told me that my tumors are not aggressive enough to respond to chemo. That's good news but I guess I still fall into a little gray area. Because of all the spreading, which is typical of ILC, I'm at a slightly higher risk of reoccurrence. My oncologist is recommending prophylactic ovary removal to help the tamoxifen. Still thinking it over. I worry that next time I may not be so lucky but don't want to go through such life altering surgery without good reason. I talked with several doctors about bilateral mastectomies but they agreed that medically it wouldn't help me at all. Psychologically, however, they would fully support that choice. Now this advice on a partial hysterectomy. Lots to digest. The hard part about this has been the waiting but in the end it has granted me the time to think things through. It is good to hear stories from others with this rarer cancer type!

Merit,
Welcome. Sorry you had to be here. Your story is somewhat typical of ILC.
- Imaging unable to detect the full extent of disease
- Failure to get 'clear margins' in a lumpectomy resulting in a mastectomy.

I assume you are not in menopause yet. Prophylactic ovary removal is a tough decision. You can always 'test the waters' by doing ovarian suppression. If the side effects are too much, you can stop the injections.
Some pre-menopausal ILC patients are STILL awaiting the subtype analysis of ILC vs. IDC from the Phase III "SOFT" clinical trial which focused on early-stage, premenopausal women with ER+ disease.
Results, announced at the December 2014 SABCS, said that younger women (≤35 years), and those at high risk (node positive) showed a benefit by doing ovarian suppression (chemically induced version of an oophorectomy) in addition to endocrine therapy (either Tamoxifen or an AI).
Again, a subset of ILC patients were represented in this trial. With more clinicians recognizing the Lobular is different than Ductal, this subtype analysis comparing outcome warrants investigation. I might add that data revealed 5 or 6 years from now might hold more weight, since many of these younger participants in the trial will have been tracked for ~10 years and ER+ disease can still rear its ugly head 5-10 years later, especially ILC, which despite its indolent (lazy) reputation is occasionally known for "late" recurrences.
For now, we still await the ILC vs. IDC subtype analysis. Chances are that nothing impressive will be found in the analysis, but knowledge is power when trying to improve Overall Survival (OS).

If you're comfortable, please share your final pathology by adding the data to your profile so it appears at the bottom of your posts. Best of luck moving forward. This is a great community.

Dear JohnSmith:

Is Proliferative ILC the same as Pleomorphic ILC?

Dear JohnSmith:

You posted: 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
I was wondering if proliferative and pleomorphic are the same??

You are an amazing researcher. Thanks for all of your posts.

John Smith - Can you tell us any more about the plans for the ILC conference in Pittsburgh that you mentioned before? I can't find anything online at this point. Thanks

OS = overall survival

In terms of the ILC Symposium at the University of Pittsburgh (Pitt), I have not heard anything either.
I did notice that Dr. Steffi Oesterreich, who runs the ILC Lab at Pitt, is doing a Lobular "roadshow".

Earlier this month, she spoke at Johns Hopkins in Baltimore, Maryland in a presentation called
"Hormone Response in Invasive Lobular Cancer".

She also has these three upcoming speaker engagements:
1. "Invasive Lobular Breast Cancer - A different B(r)east"
When: Mar 30, 2016
Where: UNC Lineberger Cancer Center, Chapel Hill, North Carolina

2. "Endocrine response in invasive lobular breast cancer"
When: April 26, 2016
Where: Masonic Cancer Center, University of Minnesota - Minneapolis, Minnesota

3. "Hormonal considerations in breast cancer development and progression".
When: August 2016
Where: Oregon Health & Science University (OHSU), Portland, Oregon
[part of the 30th International Association for Breast Cancer Research Conference]

614, in my comment above I was using OS to mean Ovarian Suppression. I wondered if an analysis of the ILC patients in the SOFT trial will show that ovarian suppression is more important for premenopausal ILC than for premenopausal IDC. Sorry for the ambiguity.

Thanks, 614. In my opinion, your treatment plan makes a lot of sense.

Dear Shetland Pony:  AI's work better for ILC than tamoxifen.  I am glad that my doctor put me on Anastrazole.  I am fine with having the oophorectomy and being medically induced into menopause.

I wanted to comment on a few things. Many of us have problems getting an Oncologist who understands and treats ILC differently than IDC. I went through 3 before finding an Oncologist who specialized in breast cancer and made treatment decisions with me that reflected those differences. If you have an Oncologist who's a generalist (treats many cancers), and wants to treat the same as IDC, I'd keep looking.

It's been a year since DX last April. Only thing I'd change is having surgery with my current team sooner. Femara worked well neo adjuvantly for 3 months, then wasn't shrinking the tumors much. However, I ended up with my great team by getting fed up and firing the previous one. ShetlandPony, I'm sorry you ended up with a reoccurance so soon. The trick is to identify the true risk factors with your ILC and that's not easy with so little known about it. And my decisions are based on my profile and circumstances -- not for ILC as a whole. I can tell you if I was pre-menopausal, but in my 40's, I'd want my ovaries removed and take AI's, as they're considered more effective than Tamoxifen. I had one removed when 47 from cysts and possible pre-cancerous growth (ended up benign). I did take bio-identical hormones 10 years and that was my biggest mistake. They're not safer than Premarin when your Mom and Aunt had cancer, like me

So I'm a demanding patient. I expect treatment to be collaborative and based on the latest info. My Oncologist doesn't think any chemo besides hormonal will have the benefit exceed the risk at this stage for me. I just completed a PET scan, which came back negative, as have all my post-op tests (I hear you John S. in the possibility of false negative results). Thanks for sharing your links and August's Breast conference that's happening at the local med school treating me, btw.

My Aunt just had a 10 yr. reoccurance that's returned as aggressive ovarian cancer. She neglected getting an early DX despite symptoms, and had surgery a month ago, and now started chemo, but has edema everywhere. I don't expect her to be around very long. She chose to neglect treatment, so I won't compare her results with my long-term prognosis. Staying well also takes good health and attitude in my opinion.

Just accidentally deleted a whole long post.......in brief, my Onc is only general one, who spends most of his time supervising radiotherapy, I have no choice, and system does not allow for free election of Oncologist, he does not differentiate or see ILC as an individua entity and last time told me I have to I trust doctors!!!!  I feel very alone especially as the country I live in sees doctors as Gods and not as fallible human beings...........

My Onc also says there is no difference in treatment for ILC vs IDC which is kind of scary. She is a general Onc not breast specialist. I think she also has the attitude that I need to just listen to the experts. But then I wonder how much she is really paying attention or leaving it up to me to inquire on issues. It is exhausting trying to figure it all out and soooo time consuming. I have a break coming from work soon and need to do a lot of reading and decide if I need to pursue a third opinion. I had my second very early in the game so did not have a lot of experience or questions prepared. But I'm at the point that I need some reassurance that we are doing everything we can.

Thanks 614. Logistically speaking it would make my life more difficult to change. But my mind would be eased a bit to get some more feedback from someone with a lot of BC experience. I feel a bit like I am just drifting along with the status quo.