11. “After the Cure”

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.

For more consciousness raising essays, check out “30 Days of Breast Cancer Awareness.”

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7 comments to 11. “After the Cure”

  • I think this is such an important post, and my own personal experience has shown that the medical professionals are exceedingly reticent to assign any blame to treatment. In fact if I hear the words ” well tolerated” when used to describe a new chemo or other medication, I think I might just scream. Do we think this reticence to talk about treatment morbidity may be in part due to medical malpractice insurance???

  • This sounds like a terrific book. I definitely want to read it. I really relate to this because I do have some lingering side effects from treatment and I do sometimes feel like my body is falling apart. I’m always a bit reluctant to “complain” to my oncologist because as the woman you mentioned above said, “Okay we saved your life, now leave us the hell alone.” Of course my oncologist is very kind and caring, but I do sometimes feel like I don’t have a right to “complain.” I feel like my issues aren’t that bad. I’m here aren’t I? Shouldn’t that be enough? I do also worry about side effects that will show themselves down the road.

    Thank you for this post. I’m putting this book on my to read list.

  • Gayle,

    This sounds like a fabulous book, and I, too, had doctors denying my post-treatment symptoms. I’ve also had doctors who believed I was telling the truth (like I would lie about my continuing chemobrain!). I have many residual physical and psychological issues that continue to haunt me. Oh, and the “tummy tuck” that came with breast reconstruction gives me non-stop pain and is swollen all the time.

    I try really hard not to think about what chemo has done to me in the long-term, though, because I don’t think I could handle it. Every person handles cancer his/her own way, and I just try to put it from my mind.

    Excellent post; keep telling the truth….

  • Thanks for this Gayle. One line really resonated for me:
    ‘They thought they would get treatment and then get back to normal.’

    Yup. Me too. Back to normal? No, normal’s changed beyond recognition. No going back. And no triumph either. Yes, that completely obscures the reality. Excellent post.

    Best, Sarah

  • Livestrong now has an important new survivorship program. I took it last year when I just couldn’t move on and back to normal, because so much of my normal had been taken away by the treatment. As a metastatic woman now, these issues are less important than just surviving, but I do address them with my oncologist and my Pallative care team. It doesn’t help to ignore them.

  • Christopher P

    I am a survivor of Leukemia that is how I found this sight with that keyword search. I am depressed, tired, scared, alone, disabled to the extent that I have panic attacks and numbness comes over me. I was fired from my job after writing more business than was expected because I relapsed with the flu and my employer IKON said it was a pattern. I have told my Dr. and she says “I am the hematologist, we are the cancer Dr.’s, you need a family Dr. and a therapist.” I told her it was the chemo and the side effect at which time she abruptly ended my visit last week. My family Dr. and another misdiagnosed my leukemia as depression and I collapsed in a stroke and a heart attack, rushed to the ER, orange blood came out of me I was so anemic and then diagnosed with ALL Leukemia in the ICU told to go home and settle my affairs and prepare to die. That was in 2005 its almost 2012. I have been destroyed by the medical system but saved by the drugs.

    I was disabled from day one and my Dr.’s never told me. I lost my business and everything I had. They tell me “well you are alive to go do it again”– well great but I did not have to lose everything to realize that! There is no post treatment care and these drugs ruined my brain. I can barely function but have started a business none the less. I cannot work a full time job; I break down over a couple of months from the stress.

    I was thrown off the after treatment cliff too. Email me here if you have any thoughts or want to talk.

  • I’m so sorry to hear this. It sounds like a terrible cycle. Have you contacted the Leukemia & Lymphoma Society’s (LLS’s) Information Specialists? They may be able to connect you with specific support services and resources in your area. Call (800) 955-4572, Monday to Friday, 9 a.m. to 6 p.m. ET, for support and guidance.

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
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Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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