There’s no good way to find out you have cancer. With her toddler in her arms and her infant daughter in a car seat on the floor of the doctor’s office, Kara Passante started to yell at her husband to please just get their daughter out of the room so she didn’t have to hear that her 29-year-old mom had breast cancer.
“I was in shock. I was terrified and furious. I was in a state of confusion that can’t really be explained. Everything I thought was normal was flipped upside down,” the co-founder of cancer charity Ride 2 Survive recalls. “It felt like a movie where everything suddenly goes in slow motion.”
There’s no good time to be diagnosed with cancer. Passante doesn’t wish it on anyone of any age. At 29, with a fairly new marriage, two small babies, and so many dreams yet to be fulfilled, she says it felt like being robbed of her future.
The Faces of Young Adult Cancer
Cancer in young adults is rare in America, where the median age of cancer diagnosis is 66. Annually, a quarter of the Americans diagnosed with cancer are already of retirement age.
And yet, rare does not mean non-existent. Rare does not mean women in their twenties are guaranteed a cancer-free decade. In fact, an estimated 2.7 percent of new cancer diagnoses made this year will be in people ages 20 to 34.
[pullquote align=”center”]“I was terrified and furious. I was in a state of confusion that can’t really be explained.”
—Kara Passante, Co-Founder of Ride 2 Survive[/pullquote]
The medical community calls them AYAs, adolescents and young adults. They’re people like Passante. People like Allyson Strong, who was a 24-year-old graduate student when doctors diagnosed her with small cell cervical cancer. People like Erin Mast, who spent the first few months of her twenties applying a cream to her vagina that would burn through the cancer cells on her vaginal walls—a cream that killed the cancer but left her unable to walk without extreme pain.
The cream was still in a clinical trial phase, and the side effects were excruciating, Mast says, but it was her only hope of having kids. At 19, when she was diagnosed, her doctors told her she could undergo radiation and chemotherapy to kill the cancer in her vagina, but it would almost definitely render her infertile. She opted for the cream instead.
Decision Making in the Face of a Cancer Diagnosis (as a 20-something Woman)
While older women are typically past their childbearing years, a cancer diagnosis for a woman in her twenties often means suddenly having to face egg retrieval and egg freezing (which can be costly and is rarely covered by insurance), or giving up the possibility of ever having children and grieving that loss.
“I was considered ‘lucky’ to have already had children,” Passante recalls. “I was told cancer treatment would destroy my ability to have any more. So what if I wasn’t so ‘lucky’? Chemotherapy wrecks havoc on the reproductive system of both women and men. These young people are potentially being stripped of their ability to produce children. That’s a huge, terrifying concern when you’re young.”
Fertility is just one of the issues that sets cancer in a person’s young adult years apart from cancer during any other life stage, says Barbara Strong, CEO of the Allyson Whitney Foundation, a national non-profit that provides grants to young adults battling cancer.
[pullquote align=”center”]“These young people are potentially being stripped of their ability to produce children. That’s a huge, terrifying concern when you’re young.”
—Kara Passante, Co-Founder of Ride 2 Survive[/pullquote]
Strong is Allyson Whitney’s mom. She lost her daughter in 2011, just 14 months after her diagnosis. She knows, as a parent and advocate, what it’s like for a woman in her twenties to have her future ripped out from under her.
“Emotionally, you’re isolated,” Strong says. “You’re going to these places where you’re not going to see [familiar] faces in the lobby, in the waiting room.”
Other cancer patients are typically much older. People your age are in college. They’re having bridal showers and welcoming babies. You’re getting a port implanted in your chest for chemotherapy. You’re shaving your head so your hair doesn’t fall out in clumps.
Even your friends don’t know what to do, Barbara says. “You come back [home], and your friends have never experienced having a friend with cancer. They don’t know how to talk to you,” she says.
For many young people, a cancer diagnosis comes at a time when they’re just beginning to establish themselves in a career. Sick days are few and health insurance limited.
[pullquote align=”center”]People your age are in college. They’re having bridal showers and welcoming babies. You’re getting a port implanted in your chest for chemotherapy.[/pullquote]
If they’re lucky, Strong says, they can move home to live with their parents, but their parents are still typically young enough to be in the workforce. The parents of AYAs with cancer often find themselves turning their own lives upside down, taking time away from work to care for their adult children.
“It’s your child,” Strong says. “You’re stopping life to get this done.”
The rates of survival for AYAs vary depending on the type of cancer they face. AYA survival tends to be worst for those with female breast cancer (regardless of estrogen receptor status), acute lymphoid leukemia (ALL), and acute myeloid leukemia (AML). When compared to survival rates for younger and older people with the same diagnoses, AYA rates in these cases are the worst.
In part, misdiagnosis is to blame. When a woman in her twenties walks into a doctor’s office complaining of pain, cancer is not the first thing doctors think of. Mast was diagnosed first with pelvic inflammatory disorder, then a spastic colon. Neither diagnosis was accurate. Ultimately, it was her family physician who trusted Mast’s gut and referred her to multiple specialists who eventually diagnosed her correctly.
[pullquote align=”center”]“It’s your child. You’re stopping life to get this done.”
—Barbara Strong, CEO of the Allyson Whitney Foundation[/pullquote]
In Passante’s case, it was her own advocacy.
“In your twenties, mammograms aren’t even a thought,” she says. “It’s never okay to be given a cancer diagnosis, but in your fifties and sixties there are known risk increases, so prevention is more diligent. In your twenties, you are going in blind, and by the time it’s determined cancer, it’s often progressed to an advanced stage because there was no prevention at all.”
A Message for Women
With World Cancer Day taking place on Feb. 4, Passante, Mast, and Strong have a message for women: Trust your body. Be your own advocate. If you feel something, say something.
The American Cancer Society lists these signs of cancer that are most likely to occur in the AYA stage:
- An unusual lump or swelling in the neck, breast, belly, testicle, or elsewhere
- Unexplained tiredness and loss of energy
- Easy bruising
- Abnormal bleeding
- Ongoing pain in one part of the body
- Unexplained fever or illness that doesn’t go away
- Frequent headaches, often with vomiting
- Sudden eye or vision changes
- Loss of appetite or unplanned weight loss
- A new mole or other spot on the skin, or one that changes in size, shape, or color
If you or a loved one receives a cancer diagnosis, Passante offers this advice: “One day at a time. Break it all down. When you’re in your twenties and you hear cancer, chemo, medi port, surgery, radiation, hormones, drugs, reconstruction, etc., it is beyond overwhelming. Everything in your life suddenly becomes about what doctor you have to see next, what procedure is next, what’s next, what’s next. Break it down. One day at a time. Don’t obsess over the whole picture: It’s too much. One day at a time. Little victories.”
If you’re facing a cancer diagnosis in your twenties and need somewhere to turn, the Allyson Whitney Foundation’s Life Interrupted grant applications are processed twice a year. If you’ve battled cancer and come out the other side, The Samfund offers financial assistance and other forms of support to help you get back on your feet.