BY KAIXIN LIU & RAN HUAN
STORY ONE: Life, at the turning point
20-year-old Nicole Cummings was diagnosed with Stage 4 Hodgkin’s Lymphoma when she was having one of her busiest weeks in college.
She was caught into intense studies at University of Missouri and preparation for an upcoming “Tigers on Wall Street” leadership trip to New York City. But the diagnosis of cancer put all of her plans into a screeching halt.
“It was something that I've looked up to as a goal for many years. When that day has finally come, then all of a sudden, I was told that I was not ready to go for it.” She said.
After knowing she will be taking a whirlwind health journey, Cummings took the semester off and return to her home in Kansas City, where she receives better support from her family, to seek treatment.
What Cummings has to deal with is common for adolescent and young adults diagnosed with cancer. The National Cancer Institutedefines adolescent and young adult cancer patients as people who are between 15 to 39 years old. They account for five percent of all cancer patients or roughly 70,000 each year.
People in this age group are generally starting to gain their independence and establish their social identities. Many of them just began college, landed a job or started a family, but a diagnosis of cancer can throw all of these things into disarray.
Dr. Bryan Sisk, a resident physician at St. Louis Children’s Hospital, works with many adolescent and young adult cancer patients. He said having to deal with cancer in this stage of life creates a big challenge in terms of the psychosocial needs of these patients.
“They are trying to develop their independence, trying to fit in at school, trying to figure out what the world means,” he said. “and then you throw cancer on top of it.”
Dealing with cancer derail life, which means delays in starting college, a career or a family. And cancer treatment causes physical change like hair loss, weight gain and leads to persistent questions about fertility and intimacy.
Additionally, according to The National Cancer Institute, these cancer patients too frequently fall into a “no man’s land” between pediatric and adult oncology.
Dr. Sisk said this is because young adult patients sometimes don’t have cancer treatment that caters to their age-specific needs.
“There are very few programs that have an adolescent young adult dedicated clinic,” he said. “So, you don’t know what bucket they fall into. Should they be treated in adult oncology or should they see a pediatrician?”
Cummings began her chemotherapy at The University of Kansas Cancer Center. During her treatment, she didn’t feel it was a place that she belongs to because most of the cancer patients there are primarily older people.
“It can be isolating,” she said. “Everyone there is not necessarily like you and the majority of your friends are at school and away.”
The feelings of isolation sometimes make some patients turn emotionally inward. Dr. Sisk said having access to psychosocial support can be critical to them but sometimes such support is in short supply.
“There’s not a good infrastructure to do that,” he said. “There’s a great shortage of mental health care professionals that take care of them and there’s almost none that specialize in young adults with cancer.”
Cummings was able to connect to other young adult cancer patients through social media during her treatment. She said being able to hear stories from people who undergo similar experience helps to ease her stress
“Having that person to reference to, who truly knows what you’re going through and can answer questions, was really helpful,” she said. “Having that aspect of support kind of made things easier for me.”
Going through 12 rounds of chemotherapy, Cummings found that having emotional support and always keeping a positive outlook was integral as she fights against cancer. Now in remission, she hopes to help more of her fellow cancer patients find the positive spirit.
Cummings created CUREageous Cups, a project through which new cancer patients will receive a gift of a YETI cup of their own when they arrive at the first chemotherapy. Each cup is accompanied by a personal message of encouragement inspired by her own journey.
“Cancer, even though it was scary, a positive mindset and supports from others help a lot and guide you through it,” she said. “In this journey, even just a little thing means a lot.”
STORY TWO: Life, moving forward
Matt May was diagnosed with acute lymphoblastic leukemia when he was 18. After two years of treatment, he finally beat cancer. But his fight wasn't stopped there. New problems came to him when he tried to get back to normal life.
“For me, it was kind of a double-edged sword because I was learning all these lessons and growing so much. But at the same time was unable to take care of myself,” May said. “It's like OK, I know all these things and have all these experiences and this maturity. Now I have to do like the normal life college stuff.
May is one of the 70,000 adolescent and young adults in the age between 15 and 39 diagnosed with cancer every year in the United States. According to the National Cancer Institute, this number accounts for about 5 percent of cancer diagnoses across the nation.
Even though some patients have finished the treatment, facing the trauma of cancer as adolescents or young adults comes with its own set of challenges in the follow-up recovery process.
Dr. Bryan Sisk of Washington University School of Medicine in St. Louis works with adolescents and young adult patients, saying that there's going to be a variety of medical, psychological and financial challenges for both survivors as well as their families.
“It's not uncommon when they're done with cancer, to have almost like a post-traumatic stress type of reaction for a little while where they can get really anxious,” Dr. Sisk said.
He said some aggressive treatment like chemotherapy could jeopardize patients’ heart, kidney, liver, and other organs in the long run. And some of the patients might not be able to have children anymore.
“If you look at all pediatric patients who are treated for cancer, 20 to 40 percent of them will be unable to have children. Probably more of them have some decreased level of fertility,” Dr. Sisk said.
One type of psychological anxieties, according to Dr. Sisk, is from the fear of cancer recurrence. In his study, he looked at parents at least five years after their child was treated for cancer and found that about 30 to 40 percent of parents had low peace of mind because of worry about relapse.
“Even if you know it's not going to happen or you're highly confident it's not going to happen, there's still this worry in the back of the mind that something might pop back up at every single time,” Dr. Sisk said.
May’s mother, Robin May, still remembers the days when they were stressed out and living in the fear that cancer might come back.
“We certainly pray and hope and believe that his cancer won't come back. But it's also a reality that it might. You like any really stressful situation you know you have post-traumatic stress to deal with,” Robin May said.
On top of medical effects and anxieties, young adult cancer survivors often have to face financial difficulties, including dwindling savings, mounting debt and difficulty doing their jobs, according to a new study from Colorado Cancer Center. Researchers surveyed 872 survivors ages 18 to 39 and found that around 14.4 percent borrowed more than $10,000 for treatment, and 1.5 percent said they or their family filed for bankruptcy over their illness and treatment.
Dr. Sisk said he has seen many cases that families were bankrupting because of the cost of treatment, which, however, isn’t talked about or recognized a lot.
“I spoke with one mother,” Dr. Sisk said. “She ended up losing her job because she had spent so much time at the hospital. Then, she ended up losing her house that she had just bought before her child was diagnosed and then ended up losing her car. That is a whole another realm of trauma that our healthcare system, unfortunately, doesn't address well.”
Speaking of the future, May and his families are optimistic. They believe there will be a light at the end of the tunnel, and they are ready to face all the challenges as a family.
“It's probably going to be a long journey. But it's a different life, one I think, and I hope,” Robin May said.