Bookstores abound with stories by and about cancer survivors. But cancer is still largely seen as a middle-aged or older person’s issue, even though there are, increasingly, more reports of younger people (from children to young adults) getting some form of cancer.
Kairol Rosenthals’s new book, Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s, is the first book to focus on what the author says is a much-neglected population of cancer patients and survivors. The Chicago-based author read to a crowded room of nearly 50 people from her work at a book launch at Women and Children First on August 12.
Rosenthal was diagnosed with thyroid cancer at the age of 26, nine years ago. Her diagnosis came after a chiropractor showed her a lump on her throat and insisted that she see a doctor about it. Rosenthal then struggled for months to get biopsies and an eventual and accurate diagnosis. She wrote the book in large part because she saw a lack of support systems and resources for people in her age category. As she explained to the multi-generational audience, one of the biggest hurdles facing young adult cancer patients is that their symptoms are often dismissed by doctors who still adhere to a generational stereotype about the disease. Rosenthal said that doctors are apt to tell young adults with potential cancer that their aches are simply due to having experimented with sexual positions, or too taxing yoga classes. There is nothing in medical schools that provides them with the knowledge to foresee cancer in young people. In addition, many young adults lack healthcare or the kind of healthcare that would grant them access to the right tests.
Everything Changes is structured as a series of first-person accounts, culled from hundreds of interviews, and linked to different sets of issues particular to young adult cancer patients. For instance, few young adults will have thought about advanced directives, wills, and life insurance but those can be crucial matters to consider in the event of a grave illness. Similarly, issues around body image affect this population differently and perhaps with more intensity than other age groups.
The issue of young cancer patients and sexual orientation was the focus of Rosenthal’s presentation. She read an account about Seth, a gay man living in San Francisco who was faced with, first, a cancer diagnosis and second, having to negotiate revealing his gay identity to his parents. According to Rosenthal, he asked his parents to not come to San Francisco because he could not both “navigate cancer” and deal with his life issues with his parents. Nevertheless, as Seth puts it, “I think being queer affords me a different perspective on cancer Through the AIDS epidemic, not only have gay men come together as a community and shown our humanity, but … we know how to take care of our own.”
Rosenthal said that there needs to be far more awareness about young adult cancer patients and their issues: “Cancer survivor rates for young adults have not improved in 30 years. A quarter of us will not make it.” But she was equally adamant about the need for health care reform in the U.S., a topic that came up during the question and answer session; she has been meeting with elected officials to talk about the problems facing her population in particular and encouraged everyone to be as vocal as possible about the need for reform. When asked whose stories are not represented in the media, the author pointed out that most representations are of people in urban areas and that she was particular about including a geographical and regional range in her book. She spoke about a young man in his 20s living with stage four cancer in rural Texas, where the combination of a lack of adequate patient care and peer support group could be profoundly isolating. Rosenthal also spoke about the issues that might get overlooked, such as those facing the many incarcerated and mostly African-American youth facing the disease in jail.
Kairol Rosenthal blogs regularly at Everythingchangesbook.com, where she updates and adds resources and observations on the issues facing young adults with cancer.