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

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.

SOOOOOooooo appreciative that you took your personal time to respond. YES...I am VERY thankful at this point it is NOT cancer as I KNOW some of the hell others have been and are going through but I too am like you and want to get a step ahead of it IF at all possible because once that rotten cancer grows it never stops!!! My specialist said that we should go ahead and remove what they say (only the size of a walnut so I know I am much luckier than most) so they can do a full pathology analysis on everything they removed. As that let's wait and see IF what you have grows more and then we can always remove it just scares me. I feel like a ticking time bomb just waiting and wondering if it is turning into cancer while we are waiting to see :(. It is good to hear that someone else wants to stay a step ahead like I do. THANK YOU again for your input and I HOPE NOTHING but the BEST for you!!

Have you had genetic testing to see if you have genetic predisposition to cancer? Just curious? I had that done 1.5 years ago and found I was check 2 positive (increased breast cancer risk). Just received biopsy results following multiple 3D scans, ultrasound and biopsy results show:
Atypical lobular hyperplasia bordering on lobular carcinoma in situ in a background of slightly fibrotic breast tissue. Negative for atypical ductal hyperplasia, DCIS or invasive carcinoma.

Pathology is high risk and concordant. Breast surgical consultation is advised.

I’ve got a breast specialist who has been following me since genetic testing was done and he definitely wants to do lumpectomy. I worry if that’s enough???

Thankful this is not cancer, but want to get a step ahead if possible. I hope you get answers for your situation. Let’s share notes.