Lobular Breast Cancer: Let's share and support each other

Hi, I am 47, I have been getting mammograms and ultrasounds since my 30s due to dense breast tissue. I had ultrasound guided biopsies in 2019 on both breasts, all results benign. 3 hydramarkers in right, 1 in left. Was on 6 month plan for mri and mammogram for a year. Then moved me back to one a year mammos. Fast forward to July 2022, noticed a different feeling than my normal cysts in left breast and noticed slight dimpling near nipple only when my arm was raised above my head. Was referred for ultra and mammo because my year wasn't up yet. Thankfully they got me in quickly and referring doctor also put in a referral for breast surgeon 🙏. Ultra snd mammo results: radiologist said they didn't see any changes. I kept appt with breast surgeon who said he also didnt see anything of concern but ordered mri due to dimpling. Mri showed suspicious. Did Stereotactic biopsies, Diagnosed with ILC August 22, 2022. Sneaky cancer...hard to detect...curable...treatable, slow growing, best kind of breast cancer you can get, no signs that it's in the lymph nodes..all those things I held on to. They determined it was 5.9 cm before surgery. 5.9?! Cm!! That's huge! What??? I had bi lateral mastectomy with beginning reconstruction (expanders) on October 13th. My pathology report was a shock to me. Cancer was 55mm, smaller than what they determined; great news! Then I kept reading ..carcinoma present at margins, sentinel node micrometatasis. My heart sunk and fear, anger, confusion overcame me. Final diagnosis: ILC stage 1b, low grade, micrometatasis. Oncology recommends 5 months chemo, followed by, 33 radiation treatments, endocrine therapy, and removal of ovaries. I am so overwhelmed today. I don't know what to do. I want the cancer killed, and also want quality of life...surprise. If anyone can share their journey, the choices they made for treatment, what they have gained or lost because of treatments, and how they affect/affected survivorship, I would be so grateful. ❤️ also, forgot to mention, estrogen receptor positive, but not her2.

Hi @cindylb ,
I have been recently diagnosed with stage 1 ILC., right breast. When mammogram came back suspicious, my very first though was no matter what, the breast has to go. No one is pushing me either way (lumpectomy or mastectomy) and I am still thinking mastectomy. Just had second opinion on my procedure options and now I am leaning towards lumpectomy. It's daunting! Can I ask how you came to your decision? I know it's an extremely personal choice. Thanks!

Hello @lisamgee
Sorry you're joining the Breast Cancer Club (sigh) but it looks like you've caught it early and that's a very good thing. The reason for my choice to go with a bi lateral mastectomy was this..... I had been diagnosed with Stage 0, Lobular Carcinoma in Situ (or a pre cancer basically) on my left side/breast two years prior to my Stage 1 diagnosis, which happened to be in my right breast. I had lobular cancer in both breasts by the time I made my decision. Where Ductal Breast Cancer tends to be in one breast, lobular can show up in both over time. I had already had a lumpectomy of my left breast when they found the invasive cancer in the right. I decided that if it was going to be in both breasts it was only a matter of time before the invasive cancer might show up in the left breast. I could have opted for the lumpectomy of the right breast and that would have been a very reasonable choice. Post bi lateral mastectomy they do tests on all of the breast tissue and I had all kinds of scary stuff in both breasts so in my case...a good choice. Whether those cancers in situ would have evolved to more invasive cancers, I'll never know but.....my second reason for wanting to do the bi lateral mastectomy were these: 1. I'm not good at handling stress and didn't want to worry about it anymore, no breasts - less risk over time. 2. My breasts were a wreck (very saggy and unattractive) and I didn't get reconstruction and I liked the idea of the freedom of no bras or issues with breasts (but I do look a lot like a walking pear with no breasts and dressing can be tricky) - although I do have a prosthetic, which I've never worn, but could and might some day, ha ha. 3. I am married and my husband didn't care whether I had breasts and also I was in my mid 50's (now 65) and was comfortable with my physical appearance without breasts...so my age played a factor. My choice did bring a problem however - during my surgery there was a surgical error and I developed lymphadema, which is pretty severe for me, so that has caused me some unwanted stress and medical intervention I don't enjoy! I only had one lymph node removed on the side where I developed lymphadema and that's very rare (again an error by the surgeon). I remain cancer free 8 years post mastectomy and 10 years from my first diagnosis. I didn't have any radiation or chemo, just the surgery - another consideration for me. I preferred not to have radiation or chemo if possible. I hope this helps. It's a big decision and either lumpectomy or mastectomy are reasonable choices. In any case, good consistent follow up is extremely important, so if you're willing and feel good about your doctors - a lumpectomy would be a fine choice. Mastectomy isn't very painful but it is a major surgery and process for sure. Keep me posted if you like on your decision and best of everything to you. Hugs.

I’m so sorry to hear of your diagnosis but please know that you’re going to be okay. It’s just such a shock for us to hear and the information and decision making can be absolutely overwhelming.

I was 60 when I was diagnosed with lobular breast cancer almost 4 years ago. Hard to believe!

Because I was triple positive, I had chemo, lumpectomy, radiation and now on an estrogen suppressing drug called Arimidex.

Needless to say, a harrowing journey but I came through it and am doing very well. You will too.

Just try to take it one week at a time and try not to look too far ahead. Break your treatment down in steps and focus just on the task at hand.

Surround yourself with positivity and always ask for help when you need it. 🙏♥️🙏

It is a personal decision and it is your decision. My surgeon helped me with my decision. I also read some articles out of professional medical journals to back up the information my doctor told me. I was invasive Lobular stage one. I'm 61. My oncotype score was 25 right on the cusp.

I decided to have a lumpectomy. My doctor also took two lymph nodes. I was lucky. I had clear margins and my nodes were clean. I followed up with 4 weeks of radiation. Am on Letrozole now for 5 years. The radiation and knowledge that I would be taking a hormone inhibiter helped with my decision too.

But do you. It is your body and your choice.

Good luck.

I hope you get at least one more opinion. And maybe a few more. Also ask about any genetic or genomic tests that might be applicable. If there was cancer detected at the margins, was follow-up surgery recommended or are the doctor(s) recommending the longer chemo and seemingly extensive radiation to clean that up? [If the latter, I'd want to know of I could have further surgery and avoid some of the prolonged radiation.]

I would have a lot of similar questions and you might get very different treatment options, or at least understand exactly why what is being recommended makes the best sense, with a fresh outside opinion. For example, you might be easily eligible for newer site-precise shorter radiation protocol but not if the facility you deal with doesn't yet have the technology and training. There are a lot of 'new tools' for dealing with breast that aren't readily available everywhere. [Both Cleveland and Mayo Clinics offer 5-session radiation, completed with 10 days, for eligible breast cancers, usually caught as early stage cancers. Facilities that don't have that new technology cannot offer it even when it might be the best treatment protocol.]

The good(bad) news is that a problem was found that can be dealt with in the immediate future. The goal is to learn your options and understand them so you can be empowered to make the treatment decisions that feel right to you and move forward with confidence about them.

Hello, your decision making process for getting a double mastectomy further reinforce my decision for this procedure as well. I have recently been diagnosed with LCIS in my right breasts and after reading much about it, I have learned that it can be multifocal and hard to detect on mammograms. My surgeon does not feel I am a candidate for MRI’s, which is more effective in detecting lobular cancers. I belong to an HMO that have guidelines for who gets MRIs. My question to you is what is the monitoring method for you after a double mastectomy since this procedure does not remove 100%of breast tissue?

I was wondering why your doctor feels you are not a candidate for an MRI? Do you mean it’s not covered by your insurance?

@mayo101 Hello!
My screening procedure post mastectomy has been primarily physical doctor exams looking for any lumps (which is ironic because lobular tends to grow in lines, not lumps) but....my current oncologist, who I trust says any new cancer is pretty obvious post mastectomy.....a very clear bump on top of the skin. I did have an ultrasound about 4 years ago because I had a swelling near my armpit and that turned out to be a typical swelling due to a virus. I am going to ask for an MRI however at 10 years and force my insurance to cover it. I too have been with an HMO and they don't like spending any more money on me than they have to (sigh) but I will get Medicare at the end of this year and I will request an MRI just to put my mind at ease if my oncologist feels it is advised. There is really no better way to find any sneaky cancer early than an MRI. Hugs to you!

@kware75 First and foremost.......big hugs! So sorry you're going through this. The first year for me was scary and stressful but on a positive note - they are so much better at breast cancer diagnosis and treatment now. Do as much research as you can and also get a second or even third opinion if you can. The metastasis is the greatest concern. If they can remove the cancer with lumpectomy that is an option but mastectomy might be a good choice as well...to completely remove the tissue in case there is more cancer starting. The choice about chemo and radiation is a difficult one. I was lucky that it wasn't recommended for me (no metastasis) and also I chose mastectomy to avoid those treatments BUT...my husband's cancer responded very well to just a handful of chemo treatments and radiation. It was a rough couple of years for him but he has no evidence of disease now and they don't even know the type of cancer he has and was considered terminal at diagnosis and that was 7 years ago. Get as much information and as many opinions as you need to feel you're making the right choice and know that you can quit any treatment at any time and there are statistics you can work with to determine possible outcomes. Since you are pretty young they are concerned about your estrogen levels and hence the ovary removal BUT....make them do blood tests to see how much estrogen you really have as well. When I requested that I found that I had NO estrogen (I had 95% estrogen positive breast cancer). I was able to skip the endocrine therapy as well. I was however about 6 years older than you at diagnosis and post menopause but the hormones were non existent at diagnosis...the damage was already done I guess. I do hope this helps because I know how frightened and overwhelmed you are feeling. I am sending the most positive thoughts I can to you today.