Brian is 62 and lives in Newcastle upon Tyne. He has been involved with The Men’s Virtual Meet Up (VMU), which is a monthly virtual meet-up for men with breast cancer, since 2024.
Whilst we know Lobular is rare in men, each year there are around 8 men being diagnosed in the UK with Lobular so we at LBCUK have been trying to connect with men who have had a diagnosis.
Brian responded to a WhatsApp group message asking if any of the men in the VMU group had Lobular Breast Cancer and would be willing to share their story. This is Brian’s story.
“I was diagnosed with breast cancer in 2005, aged 41. I count myself fortunate as I had a lump, which I thought was from an old rugby injury that was taking too long to heal. I was getting my yellow fever vaccination and I randomly asked the nurse to look at my lump and tell me what she thought it was. She had a look and then called the doctor in and that’s when my roller coaster of a cancer journey started.
At diagnosis, I had Ductal Carcinoma in Situ, and Ductal and Lobular Carcinoma. The primary concern was that the Invasive Ductal Carcinoma was more risky with the widespread Ductal Carcinoma In Situ. I wasn’t even told that I also had Lobular Breast Cancer. It was only when I was looking through my histology report that I saw I had Lobular.
I am now at Stage 4, but I still count myself as lucky. I had a double mastectomy, precautionary radiotherapy, and endocrine drug therapy (Tamoxifen) for only 7 months because the side effects were debilitating. I really had 19 years of being “normal” aside from the physical scars, of course. My life is now filled with routine check ups and more drugs than I might care to be taking. The important thing is that I still have quality of life and I am able to do the things that I enjoy.
I had no idea how rare Lobular is in men. Breast cancer in men is significantly less common than in women, accounting for around 1% of cases every year but with a Lobular diagnosis it’s just 0.2%. If I’d known 20 years ago that I had Lobular, it would’ve helped me to understand the treatment options available to me.
But I’m a firm believer that “forewarned is forearmed” and having knowledge enables you to make informed decisions and charities like Lobular Breast Cancer UK provide that information. When you understand your diagnosis you can live well.”