27-year-old battling rare cancer uses social media to help break stigmas

ByDhanika Pineda, Kevin Lo & Abby Cruz, Video by Nidhi Singh, Ray White & Brittany Berkowitz GMA logo
Wednesday, June 12, 2024
27-year-old battling rare cancer uses social media to break stigmas
27-year-old battling rare cancer uses social media to help break stigmas

Natasha Allen looks at the world through heart shaped lenses -- quite literally. Complementing the 27 year old's glasses in her daily outfits is an accessory most don't have: a portable oxygen machine that aids in her breathing as she battles cancer.

Fighting against stage four synovial sarcoma, Allen says she knows that the typical image of a cancer patient is not someone who looks like her.

"I think the image of a cancer patient is an old, an older person who's frail," Allen said in an interview with Dr. Darien Sutton, ABC News' medical correspondent. "People don't think like 'oh, cancer,' then think of someone that looks like me. But right now that image is changing."

Synovial sarcoma is a rare type of cancer that is often found in the arm, leg, or foot, and near joints such as the wrist or ankle and usually affects younger adults, according to the National Cancer Institute.

Allen was first diagnosed with the rare and aggressive disease on July 28, 2020. She says she drove herself to the doctor's office that morning expecting normal results from a post knee-surgery biopsy.

Allen said she remembers the room being cold and gray when her doctor told her that she had a tumor.

"I asked him, like, what kind of tumor? And he said synovial sarcoma, Google it. And he said that with no emotion, not looking at me," Allen said. "When you hear cancer, you think death right away, even if you don't want to and I just kept on thinking I am 23. I'm 23 like this is not supposed to happen to me."

Allen says she drove home to tell her family the news and found the comfort that was lacking at the doctor's office in her mother, who is an ABC News producer, and her younger brother.

Cancer rates in adolescents and young adults are on the rise in the United States. According to the National Cancer Institute, over 84,000 people ages 15-39 will be diagnosed with cancer in the nation in 2024, making up 4.2% of all new cancer diagnoses.

Rates of new cancers in young people increased almost a whole percent on average every year between 2014 and 2018.

These young cancer patients have found ways to connect with one another. One of those ways is through social media - particularly #CancerTok, a community on TikTok where users share their stories.

Feeling a bit isolated after getting her diagnosis during the height of the pandemic, Allen took to social media to share her story. Today, her TikTok page, @possiblynatasha, dedicated to sharing her cancer journey has over 168,000 followers and more than 22 million likes.

She says that the numbers make her happy - not for the pursuit of fame but rather as a marker that her work to bring awareness to cancer, especially in young people, has been a success.

According to the National Cancer Institute, among adolescents and young adults, the most common type of new cancer diagnosis is classified as "Other," making up 55% of their diagnoses following 7% diagnosed with melanoma, 8% with testicular cancer, 15% with thyroid cancer and 15% with breast cancer.

Allen's diagnosis - synovial sarcoma - falls under the overwhelming "other" category.

"Particularly younger patients, what we are seeing are more advanced cancers," Dr. Salman Punekar, who treats patients with aggressive and advanced cancer, said. "We're seeing a lot of stage three, stage four, advanced cancer and that's a little bit more sobering."

Through her platform on TikTok, Allen has been able to connect with both cancer patients and folks without diagnoses. She's also been able to find other young people with cancer who can relate to her story.

"I actually ended up getting my first cancer friend early on in my cancer journey," Allen said. "It was nice to feel like not alone because like you'll have your family and your friends but ... sometimes you bring up mortality and they're like, no, don't talk about that. And I'm like, well, how can I not talk about it when it's on my mind all the time?"

When Allen looks back on her diagnosis, she says it feels it could have come sooner. She says she began feeling pain in her knee in the fall of 2019. A long time basketball player, Allen says she didn't think much of it at first.

Allen said it wasn't until she began limping that she decided to get a medical scan in November 2019. She expected a biopsy during her knee surgery in February 2020, and was surprised when her doctor delayed it until July that year.

She believes that her identity as a Black woman, coupled with other factors including her young age, played into her being treated differently. Down to the delivery of the diagnosis itself, she said she feels like she was not treated with empathy.

Now, Allen has garnered the support of her hundreds of thousands of followers who tune in to her day in the life content. They follow her journey, watching as Allen shares her life from chemo days to trivia nights.

"The messages that really, like, hit a chord with me are the ones where people say '(hey,) you are an inspiration," Allen said. "Being able to be that someone for someone else makes it all worth it."

If you have cancer-related questions - free, confidential services are available to provide personalized responses on a range of cancer topics including prevention, treatment, clinical trials and more. Call the National Cancer Institute's hotline at 1-800-422-6237 weekdays 9am-9pm or visit cancer.gov/contact

ABC News' Armando Garcia and Teresa Kim contributed to this report.