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Breast Cancer Survivor: ‘I’m Not Going To Let It Define Me’

By Mary Frances Emmons, Editorial Contributor

Hilary Julian had every reason to be happy. Married in 2022, she and her new husband had “a big, beautiful blended family” of four boys, two middle schoolers and two grown. Her life was filled with things she loved — workouts, dance, attending the boys’ sports activities.

“I was a happy newlywed, just living daily life, not imagining there was anything else,” she says.

Until one day she found herself at her son’s karate match, tears welling up for no reason, wondering, “What if I’m not here to watch him? What if I don’t get to be these boys’ mom anymore?”

Turns out, there was something else.

A Double Whammy

With everything going on in her life, Julian knew she was behind on her mammogram. On a routine doctor visit in early 2023, her primary-care provider pushed to get it done, and managed to get her an appointment on the same day. The test revealed “a tiny calcification” in her right breast.

Julian, then 48, was no stranger to suspicious mammograms. She had “totally freaked out” when she felt her first lump in her 20s; it turned out to be nothing.

But she learned that, like many women, she had very dense breast tissue, which often makes mammograms hard to read, routinely requiring sonograms to get a clear picture. “So it didn’t surprise me there was a concern,” she says.

 Hilary Julian Secondary Photo

But this time was different. Follow-up scans and a biopsy confirmed she had cancer.

“Then, randomly, while this is all happening, I started feeling a lump on my left side. I said, ‘Hey, I think there’s something wrong over here, too.’ ”

Tests showed cancer in the left breast as well.

Both sides were early stage. But there were further complications: Julian had one kind of cancer on the left side, and two different kinds on the right. Her treatment options, which she had just begin to explore, suddenly narrowed to one: a double mastectomy.

Knowledge Is Power

Having two kinds of breast cancer at once “is not very common,” says Dr. Regan Rostorfer, Julian’s oncologist with Orlando Health Cancer Institute. “It’s also not super common to have bilateral breast cancer” at all.

In decades past, Julian’s treatment would have included not only a mastectomy but most likely chemo and radiation as well. Lymph nodes — a part of the immune system where cancer can spread first — were often removed en masse, leaving patients vulnerable to lymphedema, a painful condition of swelling in the limbs.

For Julian, though, none of that would be necessary.

She was surprised when her very first appointment was with Dr. Rostorfer and her surgeon, Orlando Health’s Dr. Jeffrey Smith. “All of my appointments, I would see them both,” Julian says. “So I was able to know the diagnosis and the prognosis of my cancer at same time we were talking about surgical options and what the plan might be.”

“We know it causes a lot of anxiety to wait for things to happen,” says Dr. Rostorfer, whose office is “about three feet” from Smith’s. “We try to be as quick as we can to get treatment underway. Having a teammate right next to me is wonderfully helpful.”

I spent some time thinking I wasn’t going to live. – Hilary Julian

 

For each patient, that team extends to radiologists, nutritionists, physical and occupational therapists, psychologists, social workers, nurse navigators — whatever each individual patient requires.

The first step for Julian was more tests, including the Oncotype DX, which “looks at specific mutations in the cancer DNA, which is different than the patient’s DNA,” Dr. Rostorfer says. Years of clinical trials have established assessment scores that reliably correlate to the risk of the cancer recurring. If the number is low, as Julian’s was, there’s no statistical benefit to chemo, and she was able to avoid it.

But nothing was certain until her surgery. “Dr. Smith kept talking about getting good margins — if he could do that, I didn’t need radiation,” Julian says.

Cancer tends to spread cells to other parts of the body as it develops. So in addition to the primary tumor, “we need to remove a rim of normal tissue referred to as a margin, because if we remove a block of tissue and the cancer went all the way to the edge, we may have cut through some tumor, even if microscopic,” Dr. Smith explains. Julian’s margins were good, and she did not need radiation.

Another tool for containing that spread is sentinel node mapping, where a surgeon injects a tracer fluid that is picked up by the lymph channels. While the tracer won’t identify the presence of cancer, it does show where in the lymph system those cancer cells would go first, which is different for every person. “So instead of removing 15 to 30 nodes, now we can target just those so-called ‘sentinel’ nodes,” Dr. Smith says, which greatly reduces the risk of lymphedema. For Julian it meant the removal of only three nodes.

“Those two were so good at having a plan and answering questions,” Julian says of her doctors. “It’s really the unknown that you’re scared of. They made clear what I needed to know and that we had a plan.”

The Road to Recovery

Her successful surgery behind her, Julian was surprised to find her ordeal was not over. The five months between surgery and reconstruction, when she had expanders inserted, “was really the worst; it was agony,” she says. “But the truth is I’m glad I went through all of it and still look like I have boobs. I had a very light version of something terrible.”

That positive mindset makes a world of difference in recovery. “The overall attitude when starting this journey is really crucial,” Dr. Rostorfer says. “Patients with a more positive, go-getter attitude tend to do a lot better.”

Julian, Orlando Health’s reputation manager, overseeing the hospital system’s social and online rep, decided early on that not letting the experience get her down would be her superpower. She kept working, started running as soon as she could and did physical therapy, specifically lymphatic massage and exercises.

“I had no idea how my lymphatic system worked and how I could be affected by losing some lymph nodes,” Julian says. “My therapist helped me regain my range of motion, and my confidence that I could work out and even train to do pull-ups!”

Bottom line, “I’m not going to let it define me,” Julian says. “I plan on being better than ever at 50.” But that’s not to say the experience hasn’t changed her.

“I spent some time thinking I wasn’t going to live,” she says. Now she approaches the world differently, “paying more attention to what I’m doing, especially with my kids.”

One of her most fulfilling experiences is sharing her story, particularly when another woman tells her “I got my mammogram because of you.”

“Even if just one person did that, I feel like I did something good with this,” she says.

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