Lifestyles

Mammogram didn’t see her cancer

EDITOR'S NOTE: This is the first in a series of stories about breast cancer survivors that will run throughout October in honor of Breast Cancer Awareness Month.

When Karla Dillon noticed a lump in her breast in January, she had reason to believe it was a cyst.

She had experienced something similar several years earlier shortly after having a hormonal IUD placed. That cyst eventually went away on its own. So when another appeared shortly after getting a new IUD, Dillon and her husband thought they knew what it was.

They were wrong.

A diagnostic mammogram didn't show anything concerning. An ultrasound was ordered to take a closer look at what appeared to be a cyst. Dillon remembers the ultrasound technician initially focusing on that area.

Then the exam moved toward her armpit.

"I was like, well, this is weird," Dillon recalled. "That's not my cyst area."

Further imaging followed, along with a biopsy. Underneath the cyst was a tumor.

On March 26, Dillon received the news she hadn't expected: She had breast cancer.

The diagnosis included ductal carcinoma in situ and invasive ductal carcinoma.

What has stayed with Dillon is how easily her story might have unfolded differently. The tumor hadn't shown up on her mammogram.

"If I hadn't caught it when I did, it would have been much more lengthy treatments," she said.

That is why, after months of surgeries, chemotherapy and radiation, Dillon has become passionate about encouraging other women to pay attention to their bodies, understand their individual risks and ask whether additional screening may be appropriate for them.

For women who are told they have dense breast tissue, she particularly wants them to ask questions.

"Can we do more advanced screening? Can I get checked more often? Can I get the MRI to make sure that there's nothing there?" Dillon said.

For her, those aren't abstract questions anymore.

After her diagnosis, treatment moved quickly. Dillon underwent a lumpectomy April 21, but doctors weren't able to obtain clear margins. She returned for a re-excision May 5.

A sentinel lymph node procedure also found cancer in her first lymph node. Another surgery followed to place a port, and in June, Dillon began chemotherapy.

She completed four chemotherapy treatments and used cold capping in an effort to preserve her hair. Radiation began Aug. 24 and ended Sept. 21.

She rang the bell twice.

With that portion of active treatment finished, Dillon has now moved into another phase of cancer care, including medications intended to reduce the risk of recurrence. And that has brought another realization she didn't fully understand before becoming a patient herself.

Before cancer entered her own life, Dillon remembers hearing about survivors and assuming that after surgery, chemotherapy or radiation, they simply moved on with their lives.

Now she understands how incomplete that picture can be.

"You're like, 'Oh, they had breast cancer and now they've moved on with their lives,'" Dillon said.

Her own reality looks different.

Although the surgeries, chemotherapy and radiation are behind her, medications and follow-up care will remain part of her life for years.

"We didn't exactly get to move on the way we anticipated when we first got the diagnosis," she said.

Learning how to live in that space has meant learning as much as she can about her own cancer and treatment. Dillon joined breast cancer groups on Facebook, where she found women sharing their experiences, questions and information.

The groups have been valuable, she said, but they also have aught her another lesson: Not every breast cancer story is her story.

"It's really hard to know what's meant for you and what's not your story," she said.

Reading about other people's experiences can quickly lead to fear and anxiety, particularly when someone is newly diagnosed and trying to understand an unfamiliar world.

There have been moments when her husband, Jason, has encouraged her to step away from Facebook. But Dillon also found that educating herself helped her walk into appointments better prepared.

"I don't know what questions to ask if I don't," she said.

Information she encountered through the breast cancer community prompted her to ask her medical team about different treatment options and testing.

When she wasn't satisfied with some of the answers she received, she sought another opinion and ultimately changed oncologists.

That experience reinforced something she now wants other patients to understand: Asking questions isn't being difficult. Neither is seeking another opinion.

"If you aren't 100% comfortable with the answers that you're getting from your team, it's okay to research and reach out and see if there's a change that can be made," Dillon said. "If something doesn't feel right, trust your gut."

Dillon also made another decision early in her cancer journey.

She decided not to hide what her family was going through. She created a Facebook page where she could update family and friends about her diagnosis and treatment.

Part of the reason was practical. It meant she didn't have to continually repeat the same information -- and relive the same difficult moments -- every time someone asked what was happening.

But there was another reason that mattered even more.

Dillon and her husband have two daughters, ages 16 and 18.

She wanted the people surrounding them to understand that cancer wasn't happening only to their mother. Her daughters were going through something, too.

"I needed their teachers to know," Dillon said. "I needed the people surrounding them to know that they needed support because it's a lot on everybody."

The same was true for her husband's coworkers and the other people surrounding their family. Dillon doesn't consider herself someone who naturally shares everything about her life.

Cancer changed that.

"I think, in a situation like this, it was really helpful for our family that everyone around us kind of knew what was going on," she said.

People leaned in.

They knew when the family needed support. They knew her daughters might be carrying something heavy. And Dillon didn't have to pretend everything was normal when it wasn't.

The experience also has given her a new understanding of the breast cancer community -- a group she never expected to join and a label she is still learning how to use.

Calling herself a breast cancer survivor doesn't yet come naturally. But her treatment has taken her from an unexpected lump to multiple surgeries, chemotherapy and radiation.

Now comes the less visible part.

The medications. The monitoring. The questions. The process of figuring out what life after active treatment actually looks like.

And through all of it, Dillon keeps returning to the circumstances that led doctors to find her cancer in the first place.

The cyst she initially thought was nothing serious led to an ultrasound. The ultrasound led doctors to look further. And underneath that cyst, they found something her mammogram hadn't shown.

In that sense, Dillon considers herself lucky.

It also changed what she wants other women to know.

Early detection matters. Mammograms matter. But so does understanding your own body and asking questions about whether your individual circumstances call for additional screening.

And when an answer doesn't sit right, Dillon wants women to know they are allowed to keep asking.

"Advocate for yourself," she said.

Her cancer journey didn't end when she rang the bell.

In many ways, she is still learning what comes next.

But she knows one thing she wants other women to take from her experience:

Pay attention. Ask questions. And trust yourself enough to speak up.