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

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.

I had a lumpectomy with radiation and as I had my tumor on the left side, I did the breath hold technique when receiving radiation. I did fine.

You should have no problem especially if your doctor has given the okay.

I’m 64 and have been taking Arimidex with no problems.

My husband also has congestive heart failure and is taking the same medication as you and is doing very well at 68. Although he won’t change his diet. ♥️

Maybe lobular breast cancer is categorized differently but a 2.8 cm for invasive ductile cancer would be a higher stage than 1A. (The tumor removed from my breast was 5mm, 7mm including clear margins. And the stage was 1A.) I mention it in case it was a mistype.

I know these treatment decisions take a lot of thought and trying to balance everything. Second opinions, especially with a doctor who carefully listens before carefully explaining options, cam make a huge difference in one's confidence in choosing what to do next.

I don't want the radiation because I have CRPS.

No her2 though for myself