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

Today I am actually challenged with a new, rare development. I am on Xgeva to keep my bones strong, and was diagnosed by X-ray for atypical femur fracture in both legs. Symptoms were getting painful to walk. An excellent Mayo surgeon put a titanium rod down the center of left femur 5 days ago. Recovery is usually 6 weeks, then they will do the right side. My goal is to be walking normally by fall, and the surgeon says I will have no trouble meeting my goal. I have no trouble talking about it, but am careful to be sensitive to who wants to hear any of it. After reading your stories, I find that it is a real relief to think of lobular cancer as a chronic condition. I call that realization a flash of the obvious. Thank you for sharing and suggesting this thread!

Hi Windyshores! For us “lobsters,” there’s a lot of discussion that centers around follow up as we move forward in our journey because lobular can be “sneaky.”

My cancer team and I discussed alternating my annual mammogram with having a breast MRI but I decided to forgo the MRI for now because since I’ve been diagnosed, I’ve had two false positives.

I also have bloodwork every six months along with a breast exam and follow up with my breast surgeon every six months.

I’m assuming that schedule will change to yearly checkups I believe when I hit the five year mark. ♥️

How are you today? Thinking of you. Do you find this hard to talk about?

I forgot to add that the cancer is er+, pr+, HER2-.

I was diagnosed with invasive lobular carcinoma in both breasts in August of 2021. It was found from a scan done for chest pain in June of that year because of chest pain that turned out to be a heart attack. I survived that and then started on the breast cancer journey. After several biopsies, in October 2021 I had a bilateral mastectomy and sentinal lymph nodes removed on both sides. Pathology found ILC , Stage 2, no lymph involvement. All margins clear. Tumors from 2mm to 10. I was almost 69 years old and chose not to have any breast reconstruction, with the support of my wife. I was told that I was not a good candidate for radiation or chemo. I started letrozole 2.5 mg in December 2021. By May of 2022, I had developed carpel tunnel with locking thumbs in both hands, as well as total body pain and stiffness. I had been on bioidentical hormone replacement therapy for many years for depression issues that run in my family, before the cancer was found. So oncology suggested a break from the AIs. I am trying to schedule an appointment with oncology now. I have only seen her twice since the mastectomy, so I don't have a good idea of what will be next. But I really don't want to go back on AIs. I do everything with my hands. I am a mechanic by trade. I am a carpenter and a fixer of three dimensional stuff! I don't really have a quality of life without my hands.

I was diagnosed with lobular HR+ breast cancer in 2004 at age 60, stage 3A, 7 positive nodes. I was told it had likely been growing for 10 years and was missed on regular mammograms due to the shape it presents. I did a double mastectomy, 8 rounds off chemo, 40 radiation sessions, had silicone reconstruction, and began anastrazole. I took it for 17 years even though research has not been done past 10 years. My oncologist always believed it would return, and it a few bone spots were discovered last December on an xray taken ahead of a steroid shot for arthritis in a hip. I am on maintenance meds now and all spots have disappeared. It is very slow growing and I was told it was not a death sentence at all, just a chronic condition at this point.

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!

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.

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 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. ♥️