Gwen Schmidt was just 21 when she was diagnosed with stage four colorectal cancer. Doctors said her chance of survival was just 5%.
“I was scared, completely terrified,” said Schmidt, now 35. “It was like everything that I had known up until that point was just gone almost in an instant.”
Schmidt was like any other college student, dividing time among friends, studying and going to parties. After she noticed blood in her toilet, she went to the doctor and got the devastating diagnosis.
Cancer was once considered a disease of aging, but a 2020 study led by researchers at the Penn State Cancer Institute found that rates of all cancers among this younger age group have risen 30% since the 1970s.
Schmidt is one of over a million adolescents and young adults, ages 15-39, who are diagnosed with cancer every year worldwide, according to research. The number is expected to grow.
Scientists aren’t sure why, but it’s most likely connected to better screening, as well as lifestyle factors like obesity, lack of exercise and alcohol.
With improvement in cancer therapies, an estimated 86% of young adults diagnosed with cancer are expected to survive, according to the National Cancer Institute. That means more young people are dealing with the aftermath of the disease.
“Once you finish the active treatment, like the surgeries and the chemotherapy, that’s when the hardest part comes,” said Schmidt, who survived through multiple operations, radiation and chemotherapy. “Because then you have to sit with your new reality and figure out what that looks like now.”
That reality can be an emotional and physical roller coaster. Research has found that young cancer survivors had a higher risk of 24 health problems, including heart failure, kidney and liver disease, hearing loss and even stroke. They also face unique challenges in navigating dating after cancer, school and careers — and potentially decades of nerve-wracking screenings and scans to determine whether the cancer has returned or whether lifesaving treatment has triggered other diseases.
A growing number of hospitals and cancer centers nationwide are launching programs targeted at adolescents and young adults. Patients in such programs get counseling, personalized screening and, most important, a much-needed sense of community with other young people.
“You’re finally in a room with a bunch of people who just get it,” said Schmidt, who is still a patient at the adolescent and young adult program at Northwestern Medicine in Chicago and returns every six months for scans. “They understand the feelings, the fears and just the crazy roller coaster cycle that it is to be diagnosed as a young adult.”
What it’s like dating after cancer
One of the most daunting aspects of surviving cancer as a young adult is getting back into the dating scene, especially when treatment has affected fertility, experts say.
“How do I disclose this huge thing that happened to me to someone that I just started dating?” asked psychologist Stacy Sanford, a co-director of the adolescent and young adult cancer program at Northwestern Medicine. “In some relationships it can even cause conflict, because it’s hard being a caregiver, and some people aren’t equipped to do that.”
Dr. Annah Abrams, a psychiatrist and the director of the adolescent and young adult cancer program at Massachusetts General Hospital in Boston, advises young patients about how to talk to their dates about cancer.
“It doesn’t have to be the opening line when you’re meeting someone and talking with them,” she said. “But on that second or that third date, if it feels like somebody that you want to connect with further, it’s going to be important to have that as part of your conversation.”
For Schmidt, getting back into dating was terrifying. The chemotherapy and the surgery that kept her alive destroyed her ability to have a biological child.
“I spoke to this guy, and I told him I can’t have kids of my own, and he said, ‘I can’t continue dating you, because having biological children is really important to me,’” she said. “I said OK, thanks for being honest with me.”
She eventually met Noah, whom she married 10 years after the diagnosis. And with help from Northwestern Medicine, she had her daughter, Vivian, through surrogacy nine months ago.
Long-term risks from cancer treatment
Historically, there has been limited research on the long-term effects of young adult cancer survivors compared to other age groups, experts say. Health problems can develop years later, because the treatment required to survive can damage our organs, said Dr. Stephanie Smith, a pediatric oncologist and adviser to the adolescent and young adult cancer program at Stanford Medicine.
“Changes in heart function, heart valve disorders, both related to radiation, as well as certain chemotherapies, can impact the function of the heart over time,” she said.
Some young cancer patients, particularly those treated with the chemotherapy drug cisplatin, may experience permanent hearing loss because of damage to the inner ear, for example.
Radiation, which kills cancer cells and shrinks tumors, can, unfortunately, raise the risk of developing leukemia and breast, lung and pancreatic cancer, according to the American Cancer Society.
Because of that, doctors at adolescent and young adult cancer centers are following a specialized set of guidelines developed specifically for young cancer survivors. They can include specialized testing of the heart or routine mammograms or colonoscopies, but at earlier ages than the rest of the population.
Ideally, the effects of treatment should be monitored for many years, Sanford said.
“We hope they have many more decades to live.”
‘Scanxiety’
One of the biggest sources of distress for young survivors is spending the rest of their lives wondering whether the cancer will come back. Years of follow-up testing can trigger what some call “scanxiety,” and young adults diagnosed with cancer can be more prone to psychological distress than older adults with cancer, data suggests.
“I knew there would be a recurrence, so I was almost prepared for it,” said Schmidt, whose cancer has already come back five times. “I would go into a scan thinking, OK, how many tumors will they find?”
Sanford of Northwestern helps young survivors work through fear using a form of psychotherapy called acceptance and commitment therapy, in which she helps them with the uncertainty that their cancer might come back.
“Suffering with the unknown is hard for people, and there’s no real fix to that,” Sanford said. “Sometimes it’s about letting go of the unknown and focusing on what’s right in front of you. That’s what we have the most control of.”
It was initially hard for Schmidt, who has been in remission for six years, to celebrate the big wins in life or even plan events a year in advance.
“I did not think I would be alive long enough to get married and start a family,” she said. “All of my dreams have come true.”
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