Invisible on mammograms: When to talk to your doctor about this breast cancer

HOUSTON – The gold standard to detect breast cancer early is for women to get regular mammograms.

However, there's a common kind of breast cancer that's not usually detected on mammograms and now an MD Anderson patient is on a mission to make sure you know your options.

The sounds of Elsie Spry playing the harp bring peace to those who listen but that's about where Elsie’s serenity ends because she has a bone to pick about information not being disclosed to women.

“At some point it may have been healthy tissue, but they didn't watch it,” Elsie said about being diagnosed with breast cancer.

She was hypervigilant about getting mammograms because her mother died from breast cancer. Year after year, she got the call of relief that her scans were normal, healthy tissue, but now she knows they were not.

“I was just in shock because I thought, you know, got my i's dotted and my t's crossed,” Spry said.

Her official diagnosis is invasive lobular carcinoma (ILC). It's the second most common kind of breast cancer after invasive ductal carcinoma.

ILC is thin lines across the breast that are cancerous, as opposed to dense tumors.

“It looks like a well-marbled piece of meat, right? That's what it looks like because it doesn't clump. It lines up,” Spry said.

She did not know she had it until there was an issue with her breast that needed a biopsy. By then, the cancer had progressed.

After frustration with doctors who missed her cancer, Spry temporarily moved to Houston for treatment at MD Anderson Cancer Center. Radiologist Dr. Eric Strom said Elsie’s kind of cancer is mostly invisible on mammograms.

“On mammograms, we see a density,” Dr. Strom said. “In lobular carcinoma it goes along the tissue planes and doesn't distort anything so you don't have an area of distortion, you don't have a dense mass and it can be completely invisible on a mammogram.”

Strom said doctors should be looking for it anyway and there are effective tools to see invasive lobular carcinoma, an MRI would be one.

Spry did not get an MRI until a biopsy indicated one was needed, several years after first complaining about a change in her breast.

However, Strom said, there's a risk with every and all women getting MRIs.

“If I start subjecting patients who have active breast, all the pre-menopausal patients to MRIs, I’m going to be biopsying lots of normal tissue as well,” Strom said.

Spry is still pushing for it.

She's working with lawmakers in her home state of Pennsylvania to make breast MRI screening a reality because she says, had she known about her kind of cancer that’s not easy to see, she would have chosen to get one no matter the cost.

“If I had known that mammograms don't see the second most common breast cancer and the sixth most common cancer for women overall, I would have paid out of pocket,” Spry said.

Radiologists and cancer advocates say although MRIs can detect ILC, there's a high cost and a higher chance of false positives.

So, Strom said the solution may be to talk to your doctor if you feel a change in your breast and insist on a specialist if they don't give you a reason for the change.

“You need an answer. It can't just be ‘I don't see anything.’ That's not an answer,” Strom said. “Especially young people who are told ‘you're too young to get a breast cancer.’”

Remember, breast cancer isn't always a lump. Elsie described hers as a "thickening" of the tissue.