ILC-Specific Questions in Making Treatment Decision

Nanka, the original tumor in 2007 was up against the chest well. I had PLCIS growing into the pectoral muscle (on the MRI it looked as if I had extensive chest wall invasion, but it was PLCIS, not PILC), and the surgeon removed a layer of muscle to get clean margins. So, yes, the margins were clean, but it didn't matter in my case since I had a local recurrence in the scar tissue anyhow.

I don't know where all this "aggressive" talk is coming from. I have been told by my Doctors it's not aggressive and is in fact slow growing!!! I think I would rather listen to my Doctors over those who are scare mongering!!!

Regarding the rather scary quote a few posts above, "The RATHER project focuses on finding new drug targets for two types of breast cancer - invasive lobular carcinoma (ILC), an aggressive cancer that does not respond well to current treatments, and triple negative which lacks the ER, PR and HER2 receptors - common and effective drug targets in other types of breast cancer. These cancers account for one quarter of all breast cancers, and have a very poor prognosis." That sounds off to me, too. I wonder how knowledgeable the person who wrote the press release is. First, I have never seen ILC described as aggressive in general, although there can be exceptions. Second, from what I have learned, ILC responds well to letrozole (though it is suspected that a subset of ILC does not respond well to tamoxifen). Third, I think there may be a writing problem here, and that the last sentence is meant to describe only triple negative. My research (and I am not an expert) indicated that long-term DFS survival, say after ten years, was somewhat poorer for ILC than IDC with the same receptors.

I would attend too if patients can go. Live in PA and would live to be involved with anything they do there either research or symposium.

My diagnosis was 12 months ago this week and I have had treatment so unfortunately wouldn't be a new case that they would track

Fizz. Follow my "ILC Clinical Trials" thread, here. I more or less plagiarized the website news release which contains the "aggressive" comment. I included the original links, so you can go straight to the source. Again, I wouldn't worry about it. The takeaway here is that someone is finally doing an ILC specific trial.

Pony & Chloes. The Univ of Pitts is in early stages of organizing the first international ILC Symposium, scheduled sometime after May 2016.
My initial thought was that it's for researchers only, but now told that it is likely open to patients/advocates too.
I jumped the gun on announcing this news since there isn't a public announcement yet.

I've just been diagnosed with ILC - sheduled for MRI on Friday. I have an appointment with 2 breast surgeons to discuss treatment. I have read through a lot of these posts and they are very helpful but I was wondering if you could give me advice on what questions (ILC-specific) that I should be sure to ask when I talk to the surgeons - are there any questions that you were glad you asked and are there any questions that you wished you had asked

Grandma3X, I think the MRI is the proper next step. If it turns out there is only one tumor and it is too big for breast-conserving surgery, you could ask about neoadjuvant hormone therapy to shrink it, if you are interested in bcs. You might also ask if the sentinel node biopsy pathologist has experience with ILC and its growth pattern, and what is the latest thinking about snb for ILC. (Sometimes I wonder if my isolated tumor cells on ihcwere really an ILC micromet. In that case I might have chosen more aggressive hormone therapy since I was premenopausal.)

New here but have been lurking for weeks trying to read posts. Many have been so helpful and informative.

Diagnosed via stereo-static biopsy with PLCIS 10/12/15. Lumpectomy revealed ILC, PLCIS, LCIS, and hyperplasia on right side 10/28/15

Awaiting results of genetics tests due 11/19 to determine course of further surgery - bmx w node testing , right mx w node testing, or another lumpectomy w node testing. Family history breast and colon.

It's hard to know what to do but in reading post after post, it seems some of you who initially opted for lumpectomy w treatment later had a recurrence and faced mx anyway.

Some times I feel confident in my decisions and other times, not so much!

I don't really have a question for anyone. Just wanted to say hello

Wishing you well Marmie.

I thought "aggressive" was determined by grade, not simply by type (IDC, ILC, etc.). Unless, of course, aggressive means "hard to detect", because that's ILC, for sure. I let my Nottingham score determine whether the particular version I had was classified as aggressive or not.

thank you chloesmom, smurfette, and artistatheart. I have yet to speak to an oncologist. I have been working with a breast specialist. He has been my doctor for years and I trust him implicitly.

I am assuming that he will refer me to an oncologist eventually and I will ask at my appt this Thursday the 19th!!

I have had a triple negative survivor going with me to appts. She has 1 year post treatment so she's been a good source of information and support. Based on her recent experiences , she and I seem to be on the same track of treatment so far. In the beginning, it all moves so slowly until the doctor gets the 'big picture'.

My personal leaning is for bmx. If going through the hassle of that once means not seeing the doctor every 6 months for mammograms and doing all of this again in the future then so be it. i already know from the pathology report that my right breast is full of ick! And I know that same ick is probably lurking in the left!

Getting the results of genetics test Thursday (I hope it's back !!) so I'll know more then. Thanks so much to all.

hi leslie13. My surgeon is a breast specialist and the hospital is partnered w MD Anderson. The radiation, chemo therapies, and surgeries take place there in their women's center.

Our stories are similar in that I have also had numerous years of cyst aspirations, biopsies, Fibrocystic changes, and one surgery to remove ductal papillomas.

I knew going in to my last appt that I would have another cyst aspirated because it was large enough to feel through my bra. After mammogram, however, Doctor pointed out the micro calcifications in a completely different area that ended up being the PLCIS and ILC.

It was a shock after having so many benign conclusions in years prior. The last 6 months have been extremely stressful for me so if stress acts as a catalyst for crazy cell growth, then I gave the cells their fuel !

Marmie,

MD Anderson is one of the best, as you know. Sounds like you're in great hands.

They are finding that all those breast conditions we thought were benign, aren't so benign after all. Taking HRT after menopause was the worse thing I did, already having a diseased breast. I too was shocked when I didn't have another aspiration, but was told I had cancer in ultrasound instead. I'm glad to see yours was caught earlier than mine, so your best prevention is taking care of yourself. That's what I'm trying to do.

JerseyGirl22,

Looks like you've had a ton of chemo. Were they trying to shrink your tumors? Also being Her 2+ is a game changer.

I just had BMX surgery 6 weeks ago. Mine was nipple sparing straight to implant, which meant I got all 475 cc at once. For 3 weeks I was very sore, but it is better now. Make sure you have button up shirts and/or Pjs. You'll likely have drains for a few weeks and can pin them to your shirt or top of bottoms. I got some cheap cotton button up nighties from Amazon about knee length which were easy to put on, and hid everything when I went out. You won't be able to pull things over your head.

Small pillows to go under your arms, especially where you have ancillary lymph node disection. Drives me crazy to have my breast touch my inner arm on the side I had done. I was prescribed a camisole too, but because my incisions were underneath, I can only handle zip up long length running bras. That's not going to change for awhile.

Clean house well, and have someone to clean for a month, or better two. Stock up on a lot of easy to eat foods. You won't want to cook. Keep a stash of cash for people who run errands. Most friends don't know what to do, but asking them to shop is something tangible. I have a very hard time asking for help, but learned my friends felt better when they could. People gave me candy, cookies, soups and other things. I haven't lost weight.

Those are the main things. I'll let u know if I think of more. You'll want the baby pillows for sure. Trust me on this! :

Dear Marmie:

Your situation sounds similar to mine.  I had so many excisional biopsies, core biopsies, and 1 cyst aspiration over the years.  (13 total not counting the lymph node surgery.) When I was diagnosed with breast cancer, I actually said to my RO, "You're kidding, right?!"  I had become so complacent because I always had lumps. In fact, I still have lumps everywhere.  I never thought that I would get breast cancer.  I guess that it was good that I stopped worrying because when my daughter had to have an excisional biopsy when she was 17, I didn't worry at all about her regarding her lump.  Thank God that her lump was a giant fibroadenoma and not a malignancy.

Good luck to everyone on this thread. I wish all of you the best.

Leslie, a point from my past. I was diagnosed with ILC and went on anastrozole for two months before my mast/DIEP surgery. Part of the reason was a long-planned anniversary trip and more so in the doctor's eyes... my "slow growing" ILC. (They were surprised I did have a positive node.) So two months of hormone treatment and then the surgery. I recall my BS saying the tumor had shrunk... I didn't ask her for more details ( I should have) but I think this adds to your point how hormone responsive ILC is.