Lobular breast cancer awareness bus makes first tour stop at Huntsman Cancer Institute

SALT LAKE CITY — Gitte Joergensen had been getting mammograms and ultrasounds for nearly two years when a radiologist recommended an MRI. That scan revealed something the earlier imaging had not shown.

"The doctor phoned me: 'There's something there,'" she recalled.

Joergensen was diagnosed with invasive lobular carcinoma in March 2020 and underwent a double mastectomy.

"I had never heard of lobular when I was diagnosed with it," she said.

Now, she's traveling with the Lobular Breast Cancer Alliance on a cross-country bus tour. Its first stop after launching in California was Monday at Huntsman Cancer Institute in Salt Lake City.

"Why not wrap a bus, make a rolling billboard with pictures of women who have lobular breast cancer?" said Laurie Hutcheson, the alliance's executive director.

Invasive lobular carcinoma accounts for about 10% to 15% of invasive breast cancer diagnoses. Nearly 50,000 people in the United States are diagnosed each year, yet a survey conducted by the Lobular Breast Cancer Alliance found four in five Americans had never heard of it.

Lobular cancer often grows without forming a distinct lump, which can make it hard to detect on a mammogram.

For Hutcheson, that challenge is personal. She said her cancer went undetected for almost twelve years. After her diagnosis, she searched for information about lobular breast cancer, began volunteering with the alliance and eventually became its director.

"Everybody needs to know it's time to talk about lobular breast cancer," Hutcheson said. "It needs more research. It's time for people to know there's a resource for patients, and we want everyone, everywhere to know."

The bus carries the faces of patients, including some who have died from the disease. Organizers plan to visit 15 cities over 21 days, sharing patient stories and information about lobular breast cancer.

"We're very honored that we were chosen to host this visit," said Carla Lloyd, co-founder and chair of Huntsman Cancer Institute's Breast and Gynecologic Cancers Research Advocate Committee.

Lloyd said the research underway at Huntsman gives her reason for optimism. "The researchers are learning more, and it just gives patients and survivors hope."

The bus heads to Denver next and is scheduled to end its tour on Oct. 15, Lobular Breast Cancer Awareness Day. Organizers encourage anyone who notices a change in their breasts to speak with a healthcare provider, even after a normal mammogram.

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