BROADVIEW HEIGHTS, Ohio — Barbara Neilsen and her husband are avid travelers and were in the midst of planning their next trip when Neilsen received shocking news.

What You Need To Know

  • Lobular cancer is the second most common form of breast cancer making up 10%-15% of those cancers

  • Lobular cancer cells grow in a sheet pattern rather than forming lumps and can be easily missed in mammograms

  • This cancer is most often detected by self-exams

“We were supposed to go to Cornwall, England, but when I woke up from surgery, I found out I was not Stage 1, I was Stage 3,” she said.

Neilsen was surprised to hear that even after being diligent about her mammograms, she was diagnosed with lobular breast cancer in 2017.

She thought the doctors has made a mistake, had missed something with previous mammograms. They hadn’t.

Because of the way lobular breast cancer cells grow, they tend to spread out, forming a sheet rather than a lump. It is difficult to detect in mammograms until they’re much larger.

Dr. Megan Kruse, breast medical oncologist at Cleveland Clinic, said that despite lobular cancer being the second most common form of breast cancer and representing nearly 10% to 15% of diagnoses, it’s patients who usually alert her to finding something.

“A lot of the time women come to us with symptoms of a breast change as their presenting sign of a breast cancer,” Kruse said. “I think you can still also find it on a screening mammogram, but that’s a little less common.”

Because of the growth pattern for lobular cancer, Kruse said women need to think differently about self-exams.

“It shows as more of a skin thickening or skin redness even, skin dimpling, compared to a usual breast cancer that may show itself as a lump,” Kruse said.

It is more likely to be found in women in their 60s who may have stopped doing self-exams, but Kruse wants them to be aware.

“How is your bra fitting?” She said. “Does it feel different? Does it feel tighter on one side? Do your clothes seem to be a little bit different? When you look in the mirror, is one breast a little bit higher or lower than the other?”

She said this type of cancer can form a lump, but that usually means the cancer is more advanced. This was like Neilsen’s case. She had no symptoms.

“I wanted to see how they (ductal and lobular) differ,” she said. “I found out there wasn’t a whole lot of information. Practically none, actually, and that really made me angry.”

She has since become an advocate and said women need to be aware if they have dense breasts. She said those women should have more detailed mammograms than what is often offered as the standard mammogram.

Neilsen had a double mastectomy after her diagnosis and chemotherapy and radiation. Today, she has no trace of the disease. She eats well and exercises regularly.

“They say to eliminate stress, but it’s almost impossible,” she said.

And after nearly a year of constant doctor visits in 2017, she and her husband made up for their cancelled trip and enjoyed a trip to Italy.

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