Moving forward after a metastatic diagnosis at 23: Julia Wise
As a child, Julia Wise wasn’t bothered when she got hurt. “Things weren’t that big a deal to me,” she says. “You scrape your knee, you get up, rub some dirt on it, and it’s fine.” That attitude continued through college, where she played lacrosse for 4 years.
Shortly after Julia’s graduation in May 2017, when she was 22, her gynecologist found a small lump in her right breast. The doctor said it was probably nothing, but to come back if it seemed to get bigger.
Julia hadn’t noticed the lump before. Worried, she told her mother and a few close friends about it. They eased her mind by pointing out that she was healthy and had no family history of breast cancer. She told herself, “OK, I’m fine.”
There were more pleasant things to think about: Julia lives in Fenwick Island, Delaware, a seashore town. Several of her friends had moved to the beach for what would be a fun summer. She was waiting tables in a restaurant and taking classes to be a certified nursing assistant, in hopes of entering a program to become a physician’s assistant. The small lump “got pushed to the back of my mind,” Julia says. “I just moved on.”
The following spring, in 2018, Julia noticed that the lump felt bigger. She wondered if she was just imagining it had grown. But when she looked in a mirror and lifted her arm, she could see the lump.
She showed it to another gynecologist, who sent her for a breast ultrasound at the local hospital, where Julia was then working as a nursing assistant. After seeing the ultrasound image, her doctor suggested a biopsy, but the surgeon couldn’t do it for 2 weeks. Julia decided to move her care to a large teaching hospital in Philadelphia, more than 2 hours away. She had a biopsy within a few days of switching centers.
A changing diagnosis
Julia was diagnosed with stage III hormone-receptor positive breast cancer. She and her parents met with a breast surgeon, to plan for a double mastectomy, and then with a plastic surgeon, who talked about breast reconstruction options. Before treatment could start, Julia needed full body scans to check if breast cancer had traveled to any other parts of her body.
After the scans, she and her parents returned to the breast surgeon’s office to talk more about the surgical procedures for a mastectomy and reconstruction. Instead of having that discussion, the doctor pulled up the scan images on a video screen and showed them that Julia, then 23, also had breast cancer in her liver and bones. She had stage IV, metastatic, disease. “We’re not going to be able to do surgery,” the breast surgeon said.
What happened next is “a little hazy for me,” says Julia. “I kind of understood that stage IV is considered terminal and long-term, and she couldn’t take it out of everywhere.” The surgeon gave her the name of a medical oncologist, to talk about non-surgical treatment. Her parents asked if surgery might eventually be a possibility and the surgeon said it was hard to tell.
"She was kind of awkward,” Julia recalls. “She basically put a box of tissues on the table and said, ‘Do you have any questions?’ I said, ‘No,’ and then off we went.”
Julia and her parents decided to stay with friends who lived just 30 minutes from the hospital, rather than face the long ride home. Julia had driven separately from her parents, and leaving the hospital, she took the wrong exit on the highway. She drove for about 25 miles before turning around.
Finding her way
Her medical oncologist told Julia about the medicines she would receive: palbociclib (Ibrance), leuprolide (Lupron) and zoledronic acid (Zometa). They also talked about the possibility of preserving her fertility by retrieving and storing some of her eggs before breast cancer treatment began. “It was something I did feel strongly about,” says Julia, “because I wanted kids and a family.”
Julia had met with a fertility specialist and learned that she would receive hormones to stimulate her ovaries to produce eggs. The process would delay cancer treatment for a month or longer. Her oncologist was concerned about both the time delay and the effect of the hormones on the untreated cancer. After their discussion, Julia decided against egg retrieval. “The main thing was to stop the spread,” she says.
When treatment started, Julia stopped working in the restaurant but still worked a few days each week at the hospital. She was covered by her parents’ medical insurance and will be until she turns 26. Her educational plans were put on hold.
“There was already a lot of uncertainty with this time of my life,” she says. “I feared failure, of not making my dreams a reality.”
Recently, her scans have been good. Inspired by a nurse practitioner who was part of her treatment team, Julia decided to aim for that professional goal. She was accepted into an accelerated BSN (Bachelor of Science in Nursing) program in Philadelphia, which starts in August 2019.
Once she moves to the city, Julia hopes to find a support group for young women with breast cancer. She was chosen for LBBC’s Young Advocate Program and will receive that training before her nursing classes begin.
In May 2019, she attended a weekend camp run by The Breasties, a support organization for young women with breast and reproductive cancers. The activities included a meeting just for women with metastatic disease.
“That was nice because you didn’t have to hold back everything. They all know what’s up,” Julia says. “There was a girl who was the same age as me, 24, and she was diagnosed at 23 like me. It was kind of reassuring to talk to somebody who’s in the same boat as you.”
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This article was supported by the Grant or Cooperative Agreement Number 1 U58 DP005403, funded by the Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.