Azadeh Afkhami, a 29-year-old lymphoma survivor, used to worry about bringing up her cancer with schoolmates. Being on crutches because of an amputated leg – the result of a treatment complication – didn’t help.
Now, years after being declared cancer-free, the Sacramento resident still deals with the long-term consequences of her illness. The difference is she now has people her age to talk about it with.
Afkhami is part of Cancer Crusaders Nor Cal, also known as the Adolescent and Young Adult Cancer Advisory Board of the UC Davis Comprehensive Cancer Center, the group responsible for organizing the second annual Pushing Past Cancer summit to be held on Saturday.
The day of workshops returns to the cancer center in Sacramento with new sessions addressing a range of age-pertinent topics, from body-image issues to legal rights. The free event is open to patients and survivors age 15-39 and their caregivers. About 100 people were registered as of Thursday.
“You never see these types of issues being brought up in public or in general,” Afkhami said. “It’s usually about, ‘OK, I have cancer and I need treatment.’ These issues are overlooked or swept under the carpet.”
Young adults age 15-39 are diagnosed with cancer about six times more frequently than children age 0-14, according to 2011 research from the National Institutes of Health. In contrast to older and younger age groups, studies show little improvement in survival rates for members of this population, who are most commonly diagnosed with breast cancer, lymphoma, germ cell tumors, thyroid carcinoma, and bone and soft tissue sarcoma.
“People are always shocked to hear that because they think this is the healthy young group,” said Marlene von Friederichs-Fitzwater, director of the cancer center’s Outreach Research and Education Program who founded the young adult advisory board in 2008. “But if the treatment causes them some physical change, they’re less likely to have that treatment and to adhere to that treatment. Certain adjustments are not acceptable to this age group.”
Brittany Maynard, the 29-year-old who committed physician-assisted suicide in Oregon this month after a terminal brain cancer diagnosis, demonstrates some of the challenges faced by this age group, the educator said. The California native was young, fit and recently married when she received her diagnosis, and told media that she made a choice not to spend her last six months of life in physical and emotional pain.
“It definitely emphasized the challenges they face in treatment,” von Friederichs-Fitzwater said. “Which is why so many of them choose not to follow through on treatment, because it presents long-term issues. It changes their appearance, their well-being, their energy.”
New sessions added to this year’s conference focus on helping patients and survivors accept their diagnosis and move forward, be it by forming new relationships or finding employment. One lecture introduces alternatives for those whose fertility is compromised due to cancer treatment. Another, geared at those under age 18, gives advice on how to talk to new friends and dating partners about a cancer diagnosis.
Fran Fisher, a Granite Bay-based clinical sexologist who is speaking at the event, noted that for some young people with cancer, chemotherapy does “a whack-a-mole on their sex drive and their desire” by creating atypical physical and hormonal changes. Her goal is to help them accept and embrace their new bodies and experience affection in a way that works for them.
“Everybody wants to be held and supported and loved,” she said. “And that brings in a whole different conversation about humanity and what it takes to thrive and survive through these types of challenges. Intimacy is what gets people through these types of things.”
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