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The recent focus of cancer research on genetic testing, over-treatment, and whether to begin annual detection exams at age 40 or 50 misses a key aspect of the cancer picture in the United States. Seventy-two thousand young adults are diagnosed with cancer every year. Even this number does not include those diagnosed in their 40s, who could have been diagnosed and treated in their thirties with higher chances of success. In fact, three quarters of adults under age 40, who are diagnosed with cancer are diagnosed with late stage cancers, giving them drastically reduced survival chances.

In that sense, the image of Lance Armstrong as the poster boy of the young cancer survivor is misleading. It suggests that cancer is survivable when one is young. No matter how attractive this image, youth is not protective.

While it might be easy to dismiss these dismal statistics with the excuse that younger people have more “aggressive” cancers and are therefore more likely to be caught with late-stage cancers and have higher mortality rates, this reasoning is problematic for two reasons. First, such a claim cannot yet be demonstrated, since little research focuses on cancer in young adults. Second, such scientific determinism neglects the social and cultural reasons for the under detection of cancer in young adults, which is critical given the inefficacy of current treatments for most later stage cancers.

For example, during the course of over a hundred discussions I’ve had with cancer survivors under age 40, I've recorded numerous stories of symptoms being dismissed with the claim that “you are too young for cancer." Much more study on the reasons for misdiagnosis, including doctor/patient interactions is required, especially for young adults who face particular challenges of diagnosis and treatment. My current work on the anthropology of cancer is analyzing the specific challenges faced by young adults pre- and post-diagnosis.

Most of us don’t learn the most important things in our lives in school, including how to talk to a doctor. For a younger person, who can think she is invincible, or be intimidated by a physician, or not know how to request specific test, such hesitancy can cost one’s life in a matter of the very few minutes one has in a doctor consultation. This communication gap and power differential is critical for everyone to recognize, not just those most likely to lose from it.

Since the vast majority of cancers (with several key exceptions, such as lung cancer or mesothelioma) are found with no risk factors whatsoever, cancer screening is recommended for adults after the age of 40 or 50. The age varies for various reasons. For example, screening colonoscopies begin at 50 because of an arguably problematic cost-benefit calculation: to screen everyone at 40, it is said, would not be cost-efficient. In other cases, early detection technologies don’t work well for younger patients; mammograms are essentially useless in diagnosing cancer in women under 40. Nevertheless, despite the high numbers for all women of missed diagnoses on mammograms, a recent UCSF study found that a majority of doctors do not complete the minimal standard two-minute breast exam.

That young adults slip through the net of early detection, designed for older patients, means that there is no way to diagnose cancers without clear symptoms. When symptoms do arise, it’s all the more important that patients and doctors insist on a multi-pronged approach to diagnosis.

Screening, or checking to see if someone might have non-symptomatic cancer or pre-cancer, is completely different than pursuing a diagnosis due to a symptom of cancer.

Problematically, mammograms often remain the standard diagnostic technology after a lump is found, even in women under 40. It is likely because of these gaps that cancer is the largest killer of women between 34-59. Even for older adults, an accurate cancer diagnosis often requires several tests; a single test can easily be taken as a false negative. Just because a symptom is “more likely” irritable bowel syndrome than colon cancer, doesn’t mean that it is. The stakes are high enough to warrant a definitive diagnosis.

Cost-benefit studies advocating that it is too expensive to screen, diagnose, and educate young adults skip some serious costs specific to this demographic.

For example, very little cancer research is done on age specific populations. Such data leaves young adults and their doctors to make blind guesses about the efficacy of some of the most “promising” new treatments that have been tested primarily on older populations. As a result, the survival rates for young adults have not been improving.

Economic classes aside, people with a partner double their chances of having medical insurance (assuming you pick someone of the opposite gender). Young adults are both less likely to be married, and less likely to have jobs with medical benefits. One young man in his thirties told me that he had been the son of a single mother, and then had worked a temporary job in the computer industry without medical insurance throughout his twenties. It was not until he married someone who could put him on her insurance, that the symptoms he had had for a decade were diagnosed as a late stage cancer.

Younger people suffer from an intense “cancer burden.” Usually they have few savings to draw on during long treatments and the sheer cost of co-pays can cost hundreds of dollars a month. Even negotiating with insurance companies over coverage can require the advocacy skills of a lawyer, yet another time consuming expense – and a skill that young adults have not had the chance to develop.

When job benefits, such as childcare and housing allowances, or medical insurance, are tied to salary, taking a long-term disability leave can have a dire impact on a family. Many young people in cancer treatment end up having to move back in with their parents for financial and practical support, which can put an extreme, sometimes irreparable, pressure on kinship relations.

Furthermore, job discrimination – as well as the fear of job discrimination – can have huge consequences. One young executive in his thirties told me about how he had a surgery for a cancer metastasis over the Christmas holiday. He didn’t want anyone to find out about his illness for fear of losing his job. It’s impossible to know how to explain the career gap that cancer treatment requires – often over a year – to a prospective employer. This leaves young survivors in a bind, needing a job to pay not only the bills, but for medical insurance; and yet unable to explain why they haven’t worked for the last year or two. It helps that the Americans with Disabilities Act covers cancer, but any such discrimination would be virtually impossible to prove.

Furthermore, the stereotypes about cancer lead to the intense alienation of young adults, who are often the youngest people in the chemotherapy room and who need to cope with the inexperience and misinformation of their friends, family, communities, and physicians. It’s simply not true that if people battle hard enough they will beat cancer, and this narrative can put a tremendous burden on people in treatment and beyond.

Other demographic groups have a broader platform to voice their issues. Christopher Hitchens, for example, was already a well-known writer when he was diagnosed and began his cancer-centered column in Vanity Fair. This imbalance in who has a voice further adds to the stereotypes of who gets cancer: older white people.

The lack of medical research on cancer, the near complete lack of screening, and the specific set of social costs for this demographic, make for a deadly combination for young adults. As such, more attention needs to be paid, in the short term, on figuring out the multiple reasons for the late diagnosis of young adults, and rectifying them. The myth that cancer is a disease of older people leads to the late diagnoses, suffering, and deaths of tens of thousands of people each year. 

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