For years, Stephanie Clark experienced pain, fatigue, strange body shape changes, and low libido.
Clinicians dismissed her symptoms and referred her to a weight-loss program and therapy.
She was later diagnosed with a desmoid tumor, a rare growth that can wrap around body structures.
Stephanie Clark had a lot to be excited about leading up to 2020.
The mom of an elementary-school-aged son had gotten married in 2018 and bought a house in Lewiston, Maine, in 2019. She had also enrolled in a program to become a certified nurse assistant — an upgrade from her administrative job at a family medical practice.
And yet, Clark, now 34, had lived with an "impending feeling of doom and gloom" since 2017. She had back, neck, and shoulder pain, became uncomfortable sleeping on her left side, and noticed her breasts were fuller. She also developed a lump on her back.
Clark had an unusually low libido for a newlywed, seemed to sweat excessively, and lacked the energy to keep up with her workload.
Doctor visits didn't yield satisfying answers. Clark's primary care doctor referred her to a weight and wellness program and to a psychologist for anxiety and depression. A dermatologist dismissed the back bump as a "harmless lipoma," or a fat-filled growth that sits between the muscle and skin.
"I was so hard on myself — I played the blame and shame game," Clark told Insider. "I thought, 'I'm just fat. Maybe I just suck at adulting. Maybe I just can't handle the stress of everyday life.' I thought that I was just a loser."
Then in August 2020, Clark drove to the ER in excruciating pain. "I couldn't stand for more than a minute or so without feeling like a hot knife was sticking out of my back," she said. A CT scan revealed a grapefruit-sized tumor on her rib cage. Doctors told her it was likely stage 3 bone cancer.
"I was just stunned," said Clark, who was alone due to pandemic-era hospital rules. "I remember having this overwhelming sensation, at 32 years old, that I wanted my mom."
Clark later learned she has a rare type of tumor
A week later, Clark got a call from a doctor congratulating her on her biopsy results: She didn't have cancer, but did have a desmoid tumor, a rare growth with tendril-like growths that can wrap around nearby structures, causing pain and other symptoms, according to the National Cancer Institute (NCI).
In rare cases where they wrap around vital organs, the tumors can be fatal, research shows.
Though benign, they're unpredictable, and can shrink on their own or grow aggressively. There's no FDA-approved therapies for the growths, which the NCI says can be difficult to remove and, when they are removed, often grow back.
"This is hardly something I would congratulate anyone on," Clark said. "What I've been through, it's nothing worth celebrating."
Stephanie Clark holding her newborn nephew in 2021, when she was undergoing IV chemotherapy.
Stephanie Clark
Clark first underwent three months of oral chemotherapy, but the tumor continued to grow. "I felt like it was mocking me," she said. She then endured five months of IV chemo, which shrunk the tumor in half. Clark also underwent several procedures to freeze of parts of the tumor off.
Today, Clark still deals with the tumor she named "Hank." It has eroded six of her ribs and grown a tendril that pushes against her backbone, causing excruciating pain.
One day in the future Clark may undergo a surgery to try to remove most of the tumor, but that would be a complicated procedure involving multiple surgeons and the replacement of some of her ribs with titanium. Plus, "it's a gamble," Clark said, since her tumor could grow back.
Clark's parents look after her now-teenage son, and she and her husband divorced. She can't work, takes about 27 different medications a day, and meets with her oncology team every few weeks.
Prior to her diagnosis, Stephanie Clark's favorite hobby was fishing.
Stephanie Clark
"I've had to dig deep and become my own advocate to deal with the members on my team who I don't feel give me the time of day," she said. "I've had to learn how to stick up for myself and demand better care. And that's a challenge, especially when you don't feel well when you're already in pain."
Clark advocates for rare disease awareness and support online
Clark has found comfort in creating a Facebook page to raise awareness of desmoid tumors and support others with rare diseases. She posts about advocating for yourself in the healthcare system, how wearing lipstick and dressing up boosts her mental health, and even writes poems about Hank.
"Will an effective treatment or cure be found before my desmoid tumor gets the best of me?" she said. "I don't know. I hope so, but I've made the choice to not sit back idly while this desmoid tumor continues to invade my healthy tissue."
Instead, she'll volunteer for clinical trials, mentor those who are newly diagnosed, and speak out on occasions like the NIH's Rare Disease Day.
"For me, the question is not, 'Why did this happen to me?'" Clark said. "The question I ask myself now is, 'What am I going to do about it?'"
