Many women with lobular breast cancer have found the Lobular Breast Cancer Alliance (LBCA) after they were diagnosed. They want to help build a community among peers, to share the most current information about ILC detection, treatment and clinical trials, and to raise awareness about this common yet understudied breast cancer subtype that needs more research. Sharing their stories is one of those ways.
Meet Jo
My name is Jo, I’m 56, and I live on the outskirts of Sydney, Australia. On December 21, 2021, I heard the words no woman wants to hear. “You have breast cancer.” I have no family history of breast cancer and check myself religiously. I’m fit, healthy, don’t smoke or drink, have never had hormone replacement therapy nor was I on the pill. I breast fed my children. Other than lumpy breasts and my age, I have no risk factors for breast cancer.
I have always had dense breast tissue and lots of cysts. In the last few years, my doctor had put me onto twice yearly ultrasounds and yearly mammograms as my breast tissue was showing no signs of thinning despite me being in my mid-50s.
Beginning in May 2021, I had several cases of suspicious areas on my left breast having to be biopsied. It turned out to be ok. However, a technician then found a suspicious area on my right breast. When I went to have it biopsied in September 2021, the technician and doctor couldn’t find anything suspicious so refused to biopsy the area.
My doctor wasn’t happy with this and sent me to a surgeon who in turn sent me to an imaging center specializing in women’s imaging. A cancerous tumour was found and biopsied on December 8. There was no lump to speak of.
My surgeon did tell me it was lobular. The pathology suggested it was 3-4mm. I decided then and there without knowing anything about lobular breast cancer to have a bilateral mastectomy and reconstruction. While my doctor was surprised I would ask for this procedure for what seemed to be a small tumour, he supported my decision. The MRI on New Year’s Eve showed virtually no sign of tumour, so he was happy to go ahead with the reconstruction. He performed miracles to arrange my surgery and reconstruction for January 13, 2022, when we were in the middle of a COVID Omicron wave in Sydney.
The surgery was successful, and I healed well. The pathology told me and my team that we made the right choice for me. My tumour wasn’t tiny. It was a 17mm tumour. My lymph nodes were clear and there was clearance around my tumour. There were cellular changes in my left breast but no sign of tumour. But what I now know about lobular breast cancer reinforces that I made exactly the right choice. It is estimated that my tumour was between 1-3 years old.
When I was diagnosed with lobular, I didn’t have any information. In Australia there is little information on lobular breast cancer. It was only post op that I found the Lobular Breast Cancer Alliance (LBCA) through their Facebook page. I now keep up on lobular breast cancer thanks to their posts.
My treatment now consists of hormone therapy. I don‘t need radiation or chemo. I have a monthly injection of Zoladex as I haven’t gone fully into menopause, and I have a daily dose of Anastrozole. I consider myself so very blessed and lucky that I had the team I had and that this was found when it was. My guardian angel was looking out for me.
Interested in telling others about your own lobular breast cancer story? Please email communications@lobularbreastcancer.org to request more information on how to submit your story. For more information about lobular breast cancer or to make a gift visit lobularbreastcancer.org.
