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

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.

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’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. 🙏♥️🙏

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.

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!

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.

I was diagnosed with triple positive lobular breast cancer almost four years ago. It was found during my annual mammogram.

I had chemo, lumpectomy, radiation and now have been on an AI for three years. I also have a Zometa infusion every six months to ward off osteoporosis and to protect against bone metastasis.

I will continue to have bloodwork done every six months and will have a mammogram every year.

I decided not to have annual MRIs because I had already had two false positives during my treatment which caused me great stress. I do not have dense breasts. My breast surgeon and I agree that although a recurrence is possible, we feel comfortable with above mentioned follow up. ♥️

I do and have done a lot of research on my own on this
Its a rarer neoplasm and I think more resrarch is needed

Just posting an update - I will be 9 years out from my first diagnosis of Stage 0 lobular and 7 years out from my Stage 1 diagnosis of lobular in November. I am eligible for Medicare (finally) at the end of the year and I'm changing doctors and insurance and I'm hoping to get a little more support in my follow up. I will keep you all posted but I would like an MRI just to be sure. There seems to be little follow up in my case? I think I'd get some peace of mind with knowing what's happening in my remaining breast tissue (I had a bi lateral mastectomy). I am low risk but not 'no risk' and I'd like to catch anything early if possible. As I approach the 10 year mark I've heard those pesky cancer cells might have had enough time to rally, but I hope not. Thoughts or anyone out there who is at the same point and has had some follow up recommendations from their doctors to share? I will share what I find in January next week as well. By the way, really enjoy the term 'lobsters' for our condition. That gave me a bit of a chuckle today.

I did wonder about the tumor size, but the doc did say 1A, no lymph node involvement.