After the cure

Found this on Gayle Stulik's blog, cited by a woman who recently died from breast cancer:

http://gaylesulik.com/2011/10/11-after-the-cure/11.

"After the Cure"
BY GAYLE SULIK, ON OCTOBER 12TH, 2011

One of my readers emailed me to ask why so little discussion of cancer is focused on morbidity? In epidemiological terms morbidity is typically calculated, either in terms of incidence (i.e., how many people are diagnosed with a disease in a given time period) or prevalence (i.e., how many total people in the population currently have the disease). These are important things to know from a public health standpoint, but my reader is also referring to what it means to live day to day in a disease state- in a chronic, life-changing situation that involves varying degrees of ongoing impairment.

Since her diagnosis, surgery, and chemo-therapy 6 years ago, my reader has had multiple health issues, including fatigue, cognitive impairment (i.e., chemo-brain), and a "sudden" loss of lung function. Yet she tells me that none of her physicians will acknowledge these issues as "the sequelae of treatment." Similarly, a friend of hers developed leukemia after being treated with chemotherapy. Leukemia has been linked to the use of several chemotherapy drugs for breast cancer. Her friend's early onset symptoms of leukemia were dismissed as "depression," and she has since died. The experiences of these two women reveal what can occur in between "survivorship" and death from disease.

The book, "After the Cure: The Untold Stories of Breast Cancer Survivors," by medical historian Emily Abel and medical sociologist Saskia Subramanian captures the spectrum of long-term post-treatment side effects that health practitioners often fail to acknowledge or address. Abel and Subramanian interviewed 74 women who discuss the physical symptoms and emotional realities resulting not only from treatment but from the cocktail of drugs used to mitigate the side effects of those treatments. They experienced debilitating fatigue, weakness, nerve damage, pain, memory loss and/or inability to concentrate (i.e., chemo-brain), insomnia, lymphedema, headaches, arthritis, loss of sex drive, and other symptoms. "The accumulation of diverse symptoms often gave women the sense that their bodies and minds were falling apart." Is this what "beating cancer" looks like?

Contrary to the images and stories of triumphant survivorship, the side effects these women experienced fundamentally changed the quality of their lives. What's more, when they sought help they usually didn't get it. Practitioners would interpret complaints in terms of the cancer itself (i.e., always testing for the presence of cancer or its progression instead of also considering that the problems may stem from something else, including the treatment). One woman said it was like, "Okay we saved your life, now leave us the hell alone." The trope of triumphant survivorship also played a role as it too elevated the importance of "beating" the cancer, while also prioritizing attitude over the physical and emotional realities of the disease. Without getting to the bottom of physical difficulties, women were told to seek counseling, take medication for depression, or simply, "Get back out there and get back to life."

In addition to the voicelessness and feelings of isolation, what stands out to me in this book were the stories of narrowed lives. The experiences shared in "After the Cure" are not "uniformly bleak" and do include elements of personal transformation when people learn to accept their vulnerability. Yet many women had to withdraw from work and social activities and surrender all physically strenuous activities while also dealing with the burden of medical appointments, medical bills, insurance issues, altered relationships, and the physical and emotional side effects of treatment. None of these life changes were expected. They thought they would get treatment and then get back to normal. While some women had no choice but to keep working and providing family care during their treatments, others were not able to so because of the ongoing side effects.

There is little systematic research about lingering or latent side effects after treatment, and there is little information given to patients about these issues. While some major cancer centers have survivorship programs for people after treatment, the majority of people receive treatment in communities without these resources. A recent article in The Wall Street Journal reports that, "Patients feel like they are walking out of active treatment and walking off a cliff." Why might this be the case? Abel and Subramanian conclude:

"Living in a society that expects everyone to overcome any adversity, many survivors felt intense shame about lingering health problems. Consequently, some neither asserted their rights to accommodations at work nor demanded adequate support at home. Expectations of cure also produce a deep current of suspicion about chronic health problems."

The stories of triumphant survivorship that pervade the culture obscure the complicated realities of life with cancer and life after treatment. These too need to be realized, communicated, and addressed.

The 74 women interviewed in "After the Cure" had no evidence of disease (NED) at the time of the interviews. Twelve of the women developed recurrences since then. The study was funded in part by Susan G. Komen for the Cure.