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

We’re happy you found Connect! This is a very welcoming forum and you’ll feel like you’re sitting around the kitchen table with old friends…all with on the same medical journey. From my experience it helps to know you’re not alone. I don’t have breast cancer but there are so many strong, courageous and amazing women here who will be able to offer encouragement and answer questions for you.

@windyshores @elliej @anjalima @callalloo and several other members are active in the discussion link below. Feel free to pop into any conversation!

-Invasive ductal cancer
https://connect.mayoclinic.org/discussion/invasive-duct-ca/
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@beautybldr has the same diagnosis and posted this discussion in August.

-HER2- and ER/PR+
https://connect.mayoclinic.org/discussion/her2-and-erpr/
How are you doing on the chemo? Any side effects such as sore mouth or nausea?

Hi Lori, thank you so much for the warm welcome. I really wanted a forum to discuss.

I was diagnosed in November

3 weeks later had a bilateral mastectomy based on a biopsy of ILC (.5 cm on the right breast). Post mastectomy I learned that it was actually 1.5 cm with 1 node positive and no lymphovascular invasion, or no capsular invasion.

3 week after mastectomy I was started on CMF chemotherapy. I receive every two weeks given a dose dense regimen. The plan is to have radiation following this and hormone therapy and ovarian suppression.

I've received two doses of chemo, and I have six doses left.

The removed tumor was ER and PR + Her 2 -

Hi Lori, thank you so much for the warm welcome. I really wanted a forum to discuss.

I was diagnosed in November

3 weeks later had a bilateral mastectomy based on a biopsy of ILC (.5 cm on the right breast). Post mastectomy I learned that it was actually 1.5 cm with 1 node positive and no lymphovascular invasion, or no capsular invasion.

3 week after mastectomy I was started on CMF chemotherapy. I receive every two weeks given a dose dense regimen. The plan is to have radiation following this and hormone therapy and ovarian suppression.

I've received two doses of chemo, and I have six doses left.

The removed tumor was ER and PR + Her 2 -

Hi @selwena, Welcome to Mayo Clinic Connect. I’m sorry to see you’re going through a similar breast cancer journey. Was your cancer recently diagnosed? Would you care to share your experience with other breast cancer members?

I have recently been diagnosed with invasive lobular carcinoma in my right breast and it has also been found in the closest lymph node near my right breast, verified by biopsy of breast and biopsy of lymph node. I have heterogeneous dense breasts. I am considered "high risk" because with dense breast getting clear pictures with a mammogram and identifying anything unusual is very difficult. For the last 5 years, I have had the 3d mammogram or tomosynthesis vs. a regular mammogram. I was on top of it, annual testing and additional testing when requested if something looked different from the 3d mammogram from the year before. I did everything right or everything my breast care specialists suggested/requested of me.

This screening was not enough to find my lobular cancer diagnosis before it traveled to my lymph nodes. There is so much more to be concerned about once the cancer travels outside of the breast.

In my opinion...I believe if I had annual MRI's the cancer would have been found earlier and potentially not spread to the lymph nodes. PLEASE, PLEASE, PLEASE advocate for yourself when it comes to breast care. Go the extra mile to get the breast cancer screening you feel is right for you. FYI...Getting insurance to pay for the MRI can be an issue so make sure you have your DR's on board and that they are willing to help push your insurance to cover the cost.

YES, lobby for the MRI.

I hope my story helps you and many others to get the MRI.

I am 46 and we are going through a similar time

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.

Wow!! It is amazing to hear us all feeling the same way!! I have all those same feelings too! I watched my mother die horribly from lung cancer that metastasized to her brain and within 6 months my dad got pancreatic cancer and died miserably and broke my heart to watch!! I too want to be proactive and cut out whatever might progress to that!! It is just so scary!!!

I have been diagnosed with alh and had tissue removed. Now deciding on more treatment. I am so scared that since it was removed. Scared that it is just going to go to a deeper tissue and cause cancer.