Harvey Terwilliger

My name is Aileen and I am telling this story on behalf of my husband Harvey. Harvey is 59 years old. He was born and raised in NJ. He moved to Florida to attend college and that’s where he met me, his lovely, lovely wife. We have been married for 34 years. Our first born was a son who was born prematurely and lived for 1 1/2 months. We have two daughters. Our oldest, who just turned 30, requires 24/7 care since she contracted RSV as an infant and suffered a severe hypoxic brain injury. We will take care of her for the rest of her life. Our youngest just turned 28 years old and is a certified registered nurse anesthetist (CRNA). We moved to Tennessee 18 years ago where we raise cattle and have a few horses.

Harvey noticed a lump in the summer of 2022 but didn’t think much of it because he’s had several lipomas (fatty lumps beneath the skin) and thought that was what it was. Then, in the beginning of 2023 he was working on his truck and hit the right side of his chest accidentally and it hurt. He thought that it was just a lipoma and he had aggravated it, but possibly a cancer that would need to be removed. He put it off because our daughter was having health issues.

It was June when it broke through the skin just above his nipple. We went to his doctor and knew by the look on his face that it was probably not just a lipoma. His doctor immediately sent him to have scans and a biopsy, which confirmed that he had grade 3 invasive lobular carcinoma. His oncologist explained that they would treat his ILC the same as they would if he were a woman with ILC.

Since the diagnosis everything is just a blur. Harvey had a mastectomy on his right breast. Pathology confirmed that he had grade 3 and stage 3C invasive lobular carcinoma of the breast. Then he had a port put in. Just 2 days later, he had his first round of chemotherapy (AC-T regimen). After chemotherapy, in April he will start radiation treatment and after that start tamoxifen and possibly abemaciclib after that.

Harvey’s genetic testing was all negative. As his mother, who was from New Zealand, died of pancreatic cancer, and his sister has had ductal breast cancer, we feel it must be that his cancer is related to something genetic that researchers haven’t discovered yet.

After his diagnosis, we immediately started researching ILC, and that’s how we found the LBCA website. LBCA has been a great resource for information. We read the posts and comments of others with ILC who have told their story, and about how they are doing, etc. The big thing that struck us was that we could not find any other men with ILC. After some emails and help from LBCA in communicating with male breast cancer groups we have now found two other men with this type of breast cancer who are willing to connect and talk about it.

As of now… We are just taking life day by day. Harvey said from the beginning he will do everything he needs to but will act as if he doesn’t have cancer. He doesn’t want to be treated any differently and he stays strong and positive. We would like to see more research, particularly on men, and a cure for lobular breast cancer. There is really no information or research on ILC in men.

Story and Photo credit given to the Lobular Breast Cancer Alliance (LBCA) https://lobularbreastcancer.org

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