How is this even possible!!! ILC??? does anyone understand it?

Just wanted to share my story... I was diagnosed with Lobular this past June... unfortunately mine went all the way to stage IV and metastasized to the bone before it was discovered. This all happened within 10 months of a clear mammogram the year prior. Like some of you I never felt a lump, had zero risk factors and was a very healthy person overall. Just quite literally it wasn't there and then it was. Was taking a shower and noticed that the side of my breast felt firm. Though it was a clogged gland or something. Been having so much difficulty coping with this because it makes no sense. The doctors keep telling me that ILC is a slow moving cancer but I'm not inclined to believe them. To me a slow moving cancer can't go all the way to stage IV in less than 10 months. We do need more research for this type of cancer... it's sneaky and it sucks and now I have to deal with this friggin' cancer permanently. I'm 46 yrs old and I've heard this is more common in post menopausal women. So, apparently I'm rare... but, now I'm on hormone blockers so I guess eventually I will be post menopausal... if everything works the way it should. Just wanted to let you guys know you are not alone.

That's what I hear and what I'm learning when I read about lobular. But, I keep getting conflicting info from the docs... the surgeon said he thinks I've had it for a while... the oncologist said I probably developed the tumor sometime after my last mammogram and it grew quickly. She said when you get ILC pre-menopausal it can behave more aggressive. The younger you are the faster it spreads because your hormones are more active?? But, this is all speculation of course. No one really has given me a reasonable explanation. It's driving me crazy not knowing how this happened. At the end of the day knowing the how and why won't change anything for me... I just want to make sure my daughters are well informed. Don't want this to happen to them.

Sneaky indeed... I never felt anything, never had any symptoms either... it was just a surprise attack... or at least that's how I felt. Thanks for chiming in... I appreciate it. You can feel very singled out with this diagnosis...

Hi Optimist52 nice to talk to you. Sorry about the circumstances though. Not sure about the treatment. I get the feeling we could be doing a lot more (in NZ). I wasn't offered chemo and as far as I can tell if I lived in a different country I would have been offered chemo. This makes me feel a little uncomfortable. I went public, I didn't have a choice as I didn't have insurance and couldn't afford anything else. I was told by the Doctor and Nurse at the Manukau Superclinic that even those with insurance sometimes choose to go public, but I'm not so sure about this. I know if I had plenty of money I would get checked out at a Breast Care Clinic because I do worry I haven't had the best treatment possible? I guess I will always be mad that they didn't listen to me when I knew I had something going on 18 months before and no-one would listen. But I have to try and let that go. You should jump over to the Aussie/Kiwi thread. There are some lovely ladies over there and we chat quite frequently. There are even a couple who have had ILC and it has returned 10 or so years later Donna xxx

Hi again Optimist52, sorry you are going through this, again I had an argument with one of my Breast Surgeons minions, I told her I would be having an MRI every year come hell or high water! I'm sure when they see me coming they all run and hide. I figure it should be mandatory for those of us with Lobular. Last time I had my Oncologist appointment the Dr thought he could feel something, so he went and got the Head Oncologist and she said it was nothing only scar tissue. But how do they really know, they don't, they are guessing? I think MRI's on both breasts should be standard care for Lobular. I do wonder about the Chemo thing too. Surely it is a safeguard that is worth having to save our lives? Take care and I might see you over in the Kiwi thread, Donna x

Did anyone have high node involvement. I hear its is common with ILC. I found it in my armpit in Nov 2014. Removed Dec. 2014 and found out it was ILC. Jan 2015-staging tests. stage 3-CT, bone scan, liver mri, 2nd opinion. New Onco wanted me to start chemo ASAP since was concerned ILC & Im 38. BOne scan clean, liver-nothing noted of concern to onco, CT-chest, abdomen, pelvis-noted some node sizes in clavicle area. Did AC & Taxol chemo-Feb-June, MRI-chemo shrunk things a little, BS-lumpectomy w/ axiallary dissection was still possible since I would need RADS regardless and it was considered localized. Aug. 2015-had surgery #1-BS got no nodes in sample- she made 2 incisions since I had so much scar tissue-margins not clear, new BS within the group who I liked better-more experience did mastectomy 9/21. While in there he had hunch-he felt hard nodes. He decided to do level 3 axillary dissection-27/27 all positive-his hunch was right. RADS next as planned, Tamoxifen starting this week, said maybe some sort of targeted therapy after RADS-waiting for onco to revise plan.

Anyone have high node involvement???? Any advice helpful

Mardance, what an ordeal. I do have advice: Consider the recent SOFT trial. Are you being offered tamoxifen because you are premenopausal? Here is a quote from the BCO article:

"The results of the SOFT (Suppression of Ovarian Function Trial) study suggest that tamoxifen plus ovarian suppression reduces recurrence risk a little more than tamoxifen alone for premenopausal women diagnosed with early-stage, hormone-receptor-positive breast cancer. But Aromasin plus ovarian suppression reduces the risk of recurrence even more for this group of women."

This combined with the data indicating that an aromatase inhibitor is much better than tamoxifen for ILC would make me choose OS plus an aromatase inhibitor rather than tamoxifen.

@Mardance
ShetlandPony brings up a good point. Based on your age, the results from the SOFT Clinical Trial may be relevant.
Two cohorts of premenopausal women benefit. Those are:
1. Women under the age of ~35, and
2. Women who are at a high enough risk to be treated with chemo.
Women in this cohort did benefit more by ovarian suppression (either chemically induced with a monthly injection or surgical removal of ovaries, i.e. oophorectomy) in conjunction with taking an AI.
However, I should point out that the vast majority of women in the SOFT trial were IDC (Ductal).
As usual, ILC women were represented as a minority, and researchers have NOT done subtype analysis to see how exactly the ILC women performed vs. the IDC women. I'm told by the lead researcher that this analysis is on the list of things to do, but didn't have a timeline for when it would happen.

Knowing that data might be another useful data point for premenopausal ILC. I'd suspect that there may not be a major difference, but it would be nice to know.

There is a nice thread that discusses this SOFT study for younger women, including the side effects of making this choice. It's called: Changing to AI/OS from Tamoxifen after reviewing SOFT study?
Best of luck!

Chattykat40, that Ibrance trial average or median (I forget which) was about 10 months vs. 20 months progression-free. But I like to look at it this way, since my onc describes Ibrance as doubling the time to progression: If you would have gotten, say, 2 years progression-free on letrozole alone, you could get 4 years progression-free on letrozole + Ibrance.

Keys-Plez, I would think a mammogram every six months alternating with a bi-lateral breast MRI every six months for you. Have your docs suggested this? (Edited to clarify: Yearly mammo and yearly MRI, six months apart.)

Mardance, I second Chattykat's suggestion of PET scan.

JohnSmith, thanks for filling in those details!

John...And thanks for the suggestion.

I like the alternating schedule idea.

When I was originally dx I went to UFHealth/Shands in Gainesville, FL. That was more convenient, because I could stay with my DD. I had my surgery up there and had my rads down here (Key West). I worked through my rads. It's important that I keep my job and insurance.

if I have to take off work, I'd prefer going back to UF. Just cause I'd have a place to stay and support.

I'll just put it on the shelf until I see my MO next week. I'll talk to him about annual MRIs.

Who is supposed to be the orchestrator of all this? MO? RO? PCP?

Shetland: That's interesting about letrizole... I'm currently on Goserelin, Fulvestrant, Ibrance and Zometa... I will talk to my onc about the letrozole and her thoughts. In my research on Ibrance the statistics were different with each article I read. I had read a few that said 10 and some that said 20 so I decided to go for the gold and hope for 20... But, my onc has made no guarantees or promises on a time frame since it doesn't work the same for everyone. So, I won't be surprised if I get earlier progression than I want.

Cozzoli: I hope it turns out to be nothing! Hopefully the MRI will give you good results...

JohnSmith: That's interesting info... I'm 46 but was also pre-menopausal... lots to think about in terms of the correct path for treatment. I now have a lot more questions to add to my long list for the onc.

I am new to this site and I too have ILC. I dealt with it for about a year and a half with them telling me it was a Cyst and nothing to worry about. Both mammograms and Ultra sounds showed nothing. I had just got my six month check up in April and was told to return in a year instead of 6 months which I had been doing. I ask for another doctor. Once I saw hear she sent me for a MRI and that show a suspicious mass that they recommended be biopsy. They thought it was around 3cms. I was in 2 days later for the biopsy and when I ask the doctor doing it what he thought all he said was it's not was we think it how bad it is. That was a great way to find out. Both the MRI and the Biopsy did not believe it had spread to the lymph node so my surgeon said we could do a lumpectomy and a sentinel node biopsy. That happened a week later and during the surgery she removed 2 nodes and said they looked normal and were not swollen but the pathology results came back that they did contain cancer cells and she did not get clean margins all the way around. And she also said there were so many forks that they changed the size to 5.3cms. I became so freaked out I demanded a PET/CT scan so I knew what I was dealing with because it had been going on for so long. Thankfully the PET/CT scan was normal. So it was onto chemo and then I go back in for a mastectomy. My big issue is whether to have both done at the same time because I do not want to go through this again if at all possible.

How quickly our lives can change even though we feel completely healthy and living our everyday lives. Now it is learning to deal with the new normal.

Hey Shetland: I am always perpetually worried if I'm on the right treatment so yes, I was wondering about letrozole and whether or not I should be on that instead. But, my oncologist is pretty sharp and the more I question things the more I begin to see that she is putting me on the treatments she thinks will work best with my diagnosis. And, hearing what you just said about the Pittsburgh trial that makes me feel better... well, I hope so anyways... time will tell. I know that she is planning on ovarian oblation and possibly tamoxifin if this plan doesn't work for me. Unless I have visceral spread in which I will then go to chemo. I will visit the other thread as well... thanks for the link.

@jersey
In general, Herceptin is a miracle drug for HER2+ patients.
Whether or not it behaves differently in IDC vs. ILC is an interesting question.
The answer may exist in subtype analysis of Herceptin clinical trials comparing that outcome, assuming that analysis was performed.
If this data exists, a good oncologist should be able to sift it out.

I should mention that Herceptin may have greater benefit than simply the HER2+ cohort.
A Feb 2013 University of Michigan study (by Dr. Max Wicha's lab HERE; and stem cell video HERE) discovered Herceptin benefited HER2- patients.
This was a surprise since Herceptin was designed for HER2+ patients. The explanation was that HER2 is selectively expressed in the cancer stem cells of many HER2- tumors. Because the stem cells represent such a small number of cells in a tumor, the amount of HER2 is not high enough to meet the threshold needed to be classified as HER2+.

Given the notion that cancer stem cells (CSCs) are at the root of relapse and recurrences, and the theory that Herceptin can kill these CSCs, Herceptin could benefit the HER2- cohort. While there is no clinical trial to validate this at the moment, the NSABP B47 Phase III trial, is evaluating Herceptin in "Node-Positive or High-Risk Node-Negative HER2-Low Invasive", with results due next year.