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

Good idea!

Definitely interested in others experiences.

I'm interested!

@mjay, great idea to bring women with lobular breast cancer together. @jackiestack and @ssalget, can you share more about your diagnoses?

I think @claudiamaria @ja5747 @marybe and @bowhunt1969 @cindylb @kszilvia @varalax @rarelybees2889 @nycoceans @lisman1408 @elsie37 @nobody may also want to join in.

What's you lobular breast cancer diagnosis? How are you today?

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!

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/

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. ♥️

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.

I was diagnosed with stage 3 lobular cancer in December 2013. Had a single mastectomy, chemo and radiation. Then took Letrozole until cancer metastasized to the bone in September 2018. I have been on the chemo, Capecitabine since then. I am grateful for my competent and caring Mayo team, my supportive husband, family and friends. It has been a challenging journey, and I have gained so much respect and love for all who are and have taken it. I am 75.

I was diagnosed with LCIS at age 49, took tamoxifen for 5 years. During that time I developed external polyps on my uterus. I had a complete hysterectomy after 3 1/2 years of tamoxifen and then went into full blown menopause. The lobular breast cancer was discovered 9 years after I stopped taking tamoxifen, at age 63 through a yearly mammogram. It was discovered in the same (left breast) as the LCIS was discovered. I had a lumpectomy and 3 lymph nodes removed. The site where the lymph nodes were removed became infected. Not sure that it was healed well enough to start the radiation as I have had swelling and problems with lymphedema since. I have to look back in my records to be exact on the rest of my treatment. I wonder why I have trouble remembering the details but I suspect just due to the trauma of a cancer diagnosis. The cancer was invasive, size? 1.5-2mm? Oncotype score was, what they called, the grey area. It was left up to me as to have chemo or not. I choose no after I asked what the studies for someone who had lobular breast ca said. There was only one study that the Dr. Was aware of and it did not show any improvement in life expectancy. I started on anastrozole and after 2 years of lots of joint pain I went on exemestane. I still have what I call flare ups of joint pain, exhaustion and mild depression. I have a regular Yoga practice walk 3-4 miles regularly, eat a vegetarian diet and struggle mightily to lose any weight. I put on about 10-15 pounds after the cancer diagnosis and haven’t taken it off yet. But there is always a new day and I am very thankful for that!