I was 31 when diagnosed with ILC, I decided on a lumpectomy along with radiation which I am in the middle of now. My onco score was 17 and they didn't offer me chemo, since it would only be a 2% benefit I started tamoxifen before my radiation. There hasn't been a day that goes by that I don't think about cancer hopefully that changes after time

I am 29 and just given the diagnosis of Invasive Lobular Carcinoma. I don't know anything else yet. Just that it was sent away for further pathology. I'm sick. I'm terrified.

I am 41 and just diagnosed about a month and half ago.

BlueKoala -- Sorry to be chiming in so late but it it good that you have been researching ILC and are questioning the recommendation of neoadjuvant chemo. I had neoadjuvant chemo because docs thought it best to "shrink the tumor" first and they figured they could figure out if it was working by following with regular MRIs throughout treatment. The MRIs misled them into thinking the tumor was gone. But when I went into surgery five months of chemo later the tumor was still there, right where it was from the beginning -- abutting my pec muscle -- and just as big. I'm being told to this day that the neoadjuvant chemo was still helpful because it made the tumor more "operable" but if that were truly the case it wouldn't have taken three surgeries (including BMX as surgery number 2) to get clear margins. Not saying you should refuse the neoadjuvant chemo but definitely worth questioning to what extent they really feel it will be helpful, if for no other reason than to manage expectations.

I am 46 yrs old. Diagnosed with ILC at the end of May. Some consider that young, some don't.

I found an almond shaped, flat, stiffness/thickening during a self a breast exam. At first, I wasn't too concerned. It was neither shaped nor sized like a pea, nor was it hard. I thought it would just go away. A few months later, since it was still there, I brought it to the doctors attention during my annual exam. She thought perhaps it might be a cyst, Doc suggested diagnostic mammo and and ultrasound. US showed cause for a biopsy, biopsy showed invasive lobular cancer. Oncologist gave me the option of mastectomy or lumpectomy - I would like a lumpectomy. but the oc wanted to do a Breast MRI. MRI showed several smaller cancers branching from the biopsied tumor. Now, not sure if lumpectomy is an option. We also did genetic testing. My mom had breast cancer as did 2 of her aunts. In addition, stomach cancer runs on her side of the family and there is known link with a genetic mutation between a specific type of stomach cancer (Hereditary Diffuse Gastric Cancer) and lobular breast cancer. Still awaiting genetic results.

I am finding that waiting for results, is so incredibly difficult as my brain processes and over process scenario's. At times I am consumed with thoughts about how this will be treated and what that looks like for me and my life. This stinks!

sunsetcity, I know how you're feeling. sometimes I felt it was helpful to overprepare in case of bad news, because I could visualize how I'd react to it and how I'd move forward. but sometimes it just scared the crap out of me. consider yourself lucky that you found this thing and that you are getting it treated and taken care of so you can move on and live a very long life. chances are even if you have a genetic disposition to c, you'll now be aware of it and can take steps to prevent it much more than you might not have if you didn't have the knowledge. keep posting on the discussion boards; the "just dx" thread is very active, more so than this ILC one.

Hugs

claire in az

I am a couple hours away from Pittsburgh. Being seen at OSU James Cancer (Stephanie Spielman) Center. From my understanding it's one of the best in the country and feel fortunate to live close. However, the clinical trial you mentioned does interest me and I did just read about it.

I have asked my oncologist several questions already...but none about how ILC is different, treated differently, or how it "acts" differently than IDC. I may question her regarding this. I am a detailed person. I like to know specifics. I want to be as knowledgeable as possible about this particular type of cancer, since it affects me. And also to make the wisest decision possible.

The oncologist did say the survival rate is similar regardless of a lumpectomy vs mastectomy. However, after they found what they think are other smaller cancers on the MIR she indicated that a lumpectomy would not be possible due to distance between them. An MRI biopsy would confirm the furthest spot was indeed cancer. An MRI guided biopsy does not sound appealing.

Thanks for the support everyone. I will check out the just dx thread. I was looking for one specific to ILC.

sunset city my ILC was multi focal. I had 4 cancerous tumours. Lumpectomy was not an option for me.

Wishing you well. Donna.

Lab-girl. There's been a couple threads dedicated to this topic. This one stands out: "Changing to AI/OS from Tamoxifen after reviewing SOFT study?"

As some are aware, the SOFT clinical trial results revealed that doing Ovarian Suppression (or an Oophorectomy) and switching to an AI proved to be beneficial for the young (age <35) and high risk (Lymph node positive).
But those results were based on a trial that was heavily weighted with IDC women. With your mixed histology (ILC & IDC), that may be a moot point though.

ILC women still await the IDC vs. ILC subtype analysis from the SOFT clinical trial. It's been 18 months since the 2014 SABCS trial announcement and still no data. When the data emerges, it could have relevance for ILC women.

Fwiw, the BIG 1-98 clinical trial revealed that the AI, Letrozole (Femara) was better than Tamoxifen (Tam) for ILC, although that trial focused only on postmenopausal (postM) women. Although, the 2015 study, "The molecular landscape of premenopausal breast cancer" revealed genomic signatures that differentiate preM ER+ breast cancer from postM ER+ breast cancer, suggesting different therapeutic strategies, so again, there's really no clue if this Big1-98 data is relevant for preM ILC.

As I alluded to above in a earlier comment, there are zero studies for premenopausal ILC.

Lab-girl,

I did just that in 2006. I was diagnosed with stage II mixed ILC and IDC in 2005. I was 49 and premenopausal. My oncologist at Hopkins expected me to take Tamoxifen for a few years and then switch to an AI when proven to be menopausal. I decided to remove my ovaries immediately after my treatment in order to take Femara since studies at that time were indicating Femara was slightly better. I will be finishing up my 10 years of Femara in a couple of weeks. An OBGYN oncologist at Hopkins thought it was a reasonable decision to remove my ovaries as a treatment for my breast cancer. I have never regretted that decision. My oncologist still jokes with me every time he see me and asks, did I recommend you do that. I tell him no that I did it for my own peace of mind. I cannot express how important it has been for me to make decisions that are right for me and give me peace of mind. My oncologist has supported my decisions every step of the way, even though he was probably thinking it was a bit of overkill.

wife mom teacher can I ask what symptoms you had that lead to to your diagnosis? And how were you diagnosed? So so sorry to hear of your shocking news x x

I had chemo before surgery. It was not done to achieve a lumpectomy. It was done because the cancer was locally advanced and the docs wanted to knock it on the head right away. The concern was that doing surgery first would delay chemo, and if there are any complications from surgery, like infection, the delay can be fairly long. I think the surgeon may also have been concerned about achieving safe margins and therefore wanted to shrink the tumor before surgery.

So I had staging scans and biopsy on the 9th and started chemo 10 days later (after we got the path report from the biopsy and a fish test to confirm HER status). My surgery came after 4 rounds of chemo and was followed by 4 additional rounds plus rads, then ooph, then femara. I will be on femara indefinitely

Lab, there is solid evidence that AIs are more effective than tamox in ILC. That is why my srgeon fully supported my choice to remove my ovaries so I could go straight on an AI(I was pre-meno at DX). The biggest study on this was basically a sub-crunching of stats from a larger study looking at hormonal treatment for BC. The results were published almost 5 years ago, can't remember the acronym of the study

I realize this is an old topic, but I decided to chime in. I'm 19 (going to be 20 in November.) And I was just recently diagnosed with stage 3 ILC in both of my breasts. No family history or gene mutations either and I'm beginning to wonder how the heck I got ILC, let alone BC at this age! From what I have researched since my diagnosis, ILC is quite rare in premenopausal women and super rare in women my age. It has been a huge shock to me and everyone else. I feel like I have no one to turn to right now. I am going to throw everything I can at this beast. I have a 6 year old cat I need to be there for. This is very upsetting to me. Will I still be able to have children? Will chemo make me infertile? So many questions. I am so glad that I found BCO.

P.S I want to go to medical school soon to become a scientific researcher on cancers and many other types of diseases. Maybe someday I can help find the cure, I would hope so. That would be great!

Georgia1: Thank you for the welcome. Yeah it came as a shock, but I kinda figured things weren't looking too well. When they told me I had cancer I was like, "But how?" Since I am so young. But in my heart I just knew. I'm still trying to look for ways to figure out how I got it, but I am trying not to blame myself too much. Cancer is a crap shoot, really. It took awhile for doctors to take me seriously at first, because of my age. I persisted though because in my gut I felt that something was wrong. I'll probably share my story here soon. (Any idea where I can make a topic like that?) Oh wow! I'm glad you got through it. I appreciate the hope, It's going to be tough, but I think I can make it.