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

Posted by mjay @mjay, Jul 28, 2022

Since lobular breast cancer is only 10-15% of all breast cancer diagnoses and now understood to be a unique subset of breast cancer as a whole with different characteristics than ductal breast cancer necessitating different treatments and inherently different risks, I would like to see a separate category under the breast cancer forum so that the most appropriate info is being disseminated for this specific subset of BC. Just a thought.

Interested in more discussions like this? Go to the Breast Cancer Support Group.

windyshores | @windyshores | Jul 30, 2022

My tumor was mixed ductal and lobular, and because the tissue showed loss of e-cadherin throughout, I suspect it is mostly lobular. I know that "mixed" is different from pure lobular but would still be interested in reading this thread. I am especially concerned about how we can tell there has been metastasis. I am 7 years out from diagnosis.

lisakinpa | @lisakinpa | Jul 30, 2022

In reply to @colleenyoung "@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you..." + (show)

I was diagnosed with triple positive ILC breast cancer in December 2018 at the age of 60 through an annual mammogram.

I chose to have a lumpectomy with radiation (clear margins and sentinel lymph node biopsy which was negative) and had four rounds of A/C chemo as well as Taxol and a full year of Herceptin and Perjeta.

I’ve been on Arimidex for over 3 years and am doing very well.

I’ll continue with my annual mammograms and have blood work every six months. ♥️

Colleen Young, Connect Director | @colleenyoung | Jul 29, 2022

I also want to list other lobular breast cancer-related discussions in the Breast Cancer group:
- Metastatic lobular breast cancer in stomach https://connect.mayoclinic.org/discussion/metastatic-lobular-breast-cancer-in-stomach/

- Ductal carcinoma in situ in one breast, lobular hyperplasia in other https://connect.mayoclinic.org/discussion/ducal-carcinoma-in-situ-in-left-breast-and-lobular-hyperplasia-in-othe/

- I have LCIS, anyone else? https://connect.mayoclinic.org/discussion/lcis/

- LCIS: should I take Tamoxifen? LCIS: should I take Tamoxifen? https://connect.mayoclinic.org/discussion/lcis-should-i-take-tamoxifen/

- The math of invasive breast cancer risk for LCIS https://connect.mayoclinic.org/discussion/the-math-of-invasive-breast-cancer-risk-for-lcis/

- LCIS-Age 61 (post menopause) diagnosis- AI’s a good idea? https://connect.mayoclinic.org/discussion/lcis-age-61-post-menopause-diagnosis-ais-a-good-idea/

cindylb | @cindylb | Jul 29, 2022

I'm interested. I am almost 9 years from my first Stage o diagnosis and 7 years from my Stage 1, bi lateral mastectomy for Lobular Breast Cancer.....it's a tricky one and does present differently. This group is a great idea. Thank you!