"I knew in my gut there had to be an explanation, and I was going to do anything in my power to figure it out," Molly Smith told Newsweek, after months of fighting to be taken seriously about her medical concerns.
At just 20 years old, Smith developed numbness in her hands and feet which persisted for a month before she spoke to a doctor. As this was her only symptom, she wasn't sure what the cause was, but she knew it wasn't normal.
But Smith, of New Haven, Connecticut, felt utterly dismissed during an appointment with her doctor, who insisted it was probably just dehydration or anxiety.
"The numbness was so bad that it was affecting my ability to walk and dance, and I wasn't sure if I would get the feeling back. It felt like the end of the world," Smith, now 22, said.
Knowing there was something seriously wrong with her body, Smith spent several months fighting to be heard. Eventually, she had an ultrasound scan which discovered an ovarian cyst, and at just 21 years of age, she received the devastating diagnosis that she had ovarian cancer.
Even after finding the cyst, Smith was told that it "was probably benign" and she should wait three months to see if it went away. As that didn't happen, she had surgery to remove it in January 2023 followed by three rounds of chemotherapy.
While Smith didn't expect her doctor to predict it was ovarian cancer straight away, she wishes they'd taken her concerns seriously from the beginning. "I understand that most doctors wouldn't make the connection between neuropathy and ovarian cancer, but the dismissal of my concerns is unacceptable," she said.
What Are the Symptoms of Ovarian Cancer?
Neuropathy isn't a typical symptom of ovarian cancer, but board-certified gynecologic oncologist Dr. Josh Cohen told Newsweek that it can sometimes occur.
The most common signs of ovarian cancer, as explained by the Centers for Disease Control and Prevention, include pressure in the pelvic area, abdominal pain, bloating, feeling full quickly and changes in bathroom habits.
Ovarian cancer diagnoses have been declining in recent decades, but the American Cancer Society estimates that there will still be 19,680 new cases in 2024 alone. It's also predicted that 12,740 women will die from ovarian cancer this year.
Cancer risk increases with age, but as the medical director of the gynecologic cancer program at City of Hope Orange County in Irvine, California, Dr. Cohen said that early onset cancer is "on the rise" and medical professionals must pay attention to patients' concerns.
"A diagnosis at any age is devastating, but younger people face additional challenges, including fertility preservation, managing employment, changes in body image," Dr. Cohen said.
"The best physician-patient relationships are founded on mutual respect and open communication. In my role as a physician, I focus on listening and doing my best to make sure we keep patients safe because they know their bodies best and should trust their instincts."
If, like Smith, patients don't feel sufficiently heard, Dr. Cohen urges them to seek a second opinion and advocate for themselves.
Looking to the Future
Smith has now completed her treatment and is in remission, but she still lives with the mental toll of her cancer experience.
In May 2024, she started Mission Mariposa, a nonprofit organization which aims to empower young people and educate them about cancer. She hopes to raise awareness for symptoms and to encourage people to advocate for themselves.
Now, she uses social media (@mission.mariposa on Instagram) to highlight the importance of persistence and listening to one's body.
Smith told Newsweek: "I wasn't listened to because I'm young and have no prior medical conditions, so I had to beg for three doctors to take me seriously. I'm so glad I did because I was lucky enough to find the cancer while it was stage one."
On June 26, she shared a video on Instagram revealing how her concerns were swatted away during an early appointment before her eventual diagnosis. She offered tips for anyone in a similar position, including taking notes, having someone with you, and getting a second opinion.
The video has gone viral with over 610,000 views and over 17,500 likes on Instagram, as many praised her empowering advice.
"I wanted to point out the ways doctors might dismiss concerns without you even realizing. We tend to believe everything doctors say because they're experts, but they make errors. The best person advocating for your health is you," Smith said.
"I had to use all the advocacy tips in that video to be taken seriously. I brought my mom to every appointment and that helped communicate the severity of the situation. She took notes and I did my research before each appointment. I'm so glad I didn't accept those initial explanations because it would've taken much longer to find the cancer."
Smith wishes doctors would have been more open-minded about her concerns from the start, and though she can't change the past, her work with Mission Mariposa aims to prevent other patients from experiencing the same delays.
"We like to say we help cancer fighters find their wings. To me, this means building confidence, taking hold of your story and using that experience to help others."
There's been plenty of praise for Smith's advice online, leading to more than 440 comments on Instagram. One reads: "This is such an important message!"
Another person responded: "Hands/feet numbness seems odd for ovarian cancer... I can't imagine your fight to figure all that out."
While another Instagrammer wrote: "Ok so I am not alone in this same experience. Thank you."
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