Surgery as prophylaxis

The world buzzed yesterday with the news that Angelina Jolie underwent a double mastectomy to greatly diminish her risk of breast cancer. I’ve been a fan for a long time, but she has my respect for the editorial she penned for the New York Times revealing her procedure. It’s intelligently written, explains the tests and procedures she went through, acknowledges other treatment options and choices, and thanks her loving family. It can be difficult to understand having such a dramatic procedure done with no sign of current illness, but as one woman who made the same choice put it, “If someone said your flight was 86% likely to come down, you wouldn’t get on that plane.”

With better knowledge about risk factors and a decrease in the cost of  genetic testing, an increasing number of people are proactively seeking surgery with no evidence of disease.  A presentation at the American College of Surgeons Annual Clinical Conference last year analyzed data on this trend from 2004-2009.  The number of hospitalizations related to genetic susceptibility increased 16-fold during that time, and prophylactic surgeries more than doubled. Insurance plans are increasingly covering these surgeries as a cancer risk reduction strategy based on family history, pre-disease symptoms, and/or genetic testing. This policy sheet from provider Priority Health is one example; it describes criteria not only for prophylactic mastectomy but also removal of the ovaries, stomach, uterus, or thyroid.

Jolie isn’t the only public figure in the news recently for surgery to reduce illness risk.  New Jersey governor Chris Christie revealed last week that he had undergone bariatric surgery in which a band is used to section off part of the stomach, reducing the quantity that can be eaten at one time. Though some have questioned his motive, Christie made this decision at age 50 and while morbidly obese, at increased risk for heart disease, stroke, some cancers, and concerns from joint problems to sleep disorders. Though the surgery isn’t a cure-all (I was told recently by a specialist in this area that more than 50% of the procedures now performed are revisions to previous surgeries; not because of a problem with the surgery, but to increase effectiveness for a patient who has stopped losing or started regaining weight), Christie has a good chance of dropping enough weight to make a significant difference in his risk of disease.

There are many issues to consider here and many frameworks that can be applied, but I’ve been thinking about identity. People who undergo major surgery as a risk reduction strategy will wear the scars and/or have lifestyle changes forever. Their lives are different because of a disease they feared, which becomes part of their embodied identity nonetheless. I think there must be an identity shift that precedes that, from seeing oneself as healthy to envisioning the body as vulnerable and imminently diseased.  The presentation mentioned above noted an association between surgery-seeking and level of anxiety about disease. I wonder if that anxiety marks an identity borderline, from a woman who sees herself as fine but at risk and chooses vigilance and lifestyle alterations, for example, and one who sees herself as having a disease that hasn’t yet surfaced and seeks surgery to remove tissues already considered unhealthy.

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Ending “The Big C”

The finale of the Showtime series The Big C airs next Monday.  Though the plot had the over-the-top characters and situations you’d expect from a cable dramedy, it was also one of the best fictional representations I’ve seen of the experience of cancer. We watched Cathy and her family deal with the ups and downs of melanoma for three and half seasons.  Most recently, she entered hospice care.  Considering that this last short season is titled The Big C: Hereafter, I don’t think the final episode will be a big surprise.

That doesn’t mean I won’t cry.

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The Big C debuted in August 2010 and I watched it from the first episode. I got my cancer diagnosis two months later. In the “search for meaning” phase of coping with my diagnosis, I joked that I had taunted Fate by being a fan. Though Cathy’s cancer was more advanced than mine and her treatment longer and more involved, I found validation for my feelings in her struggles for understanding and the changing relationships with her family and her own body.  In a culture where patients are pushed to be cheerful and compliant, it was a relief to have Cathy sometimes submit and sometimes to rage and act “inappropriately”.  She wasn’t a role model, but had more complexity than the oft-seen stereotypes of the brave warrior or the serene martyr.

Of course the peripheral story lines were outrageous, but that kept the series from being an extended “disease of the week” movie while touching on real issues like alternative treatment, end-of-life quality, and the impact of the disease on people close to the patient. I spent some time this morning reading threads on cancer support forums in which other patients/survivors discussed the show and found no moderate responses: they either loved the show or hated it. Loved it for the acting, the humor, and bits that were relatable; hated it for the unrealistic (not showing enough pain and disability) or unidealistic (“she’s so selfish!”) portrayal. Either way, The Big C provoked critical thinking about the experience and some laughs, and I’m glad it was around when I needed both.

Update: Yep, watched the final episode and bawled like a baby.

Hope vs. cost: the biotechnical embrace revisited

Earlier this month, I posted about the unnecessary suffering at the end of American lives that is sustained through what DelVecchio Good has called the “biotechnical embrace”: a mutually constructed ideology of hope between doctor and patient which justifies pushing experimental treatments, even when they are excruciating, expensive, and almost certain to be unsuccessful.  Both the article and the piece you read by DelVecchio Good hint at hospital economics (and incentives from biotech and pharma) as partial factors driving this ideology forward- this comes up peripherally in Cohen’s work on kidney transplant recipients as well.

Last year, Memorial Sloan-Kettering Cancer Center in New York, one of the premier cancer centers on earth, chose not to stock a ridiculously expensive medication used as a last-ditch treatment for advanced colorectal cancer.  This seems like an obvious decision, since the new drug, Zaltrap, works about as well as the much cheaper (but still overpriced) Avastin.  But the act of a major hospital rejecting an expensive drug is in fact astoundingly rare; so rare, in fact, that the doctors felt compelled to write an op-ed in the Times defending their decision- and pointing out the absurdity of a system in which cost is almost never a factor.

NPR has a quick overview of the issue.  I’m posting it for two reasons: first, the last few sentences, in which the doctors admit that if there had been even a tiny increase in Zaltrap’s efficacy over Avastin, they would have felt compelled to stock it.  And second, for the comment section, in which the ideology (and ethical mandate) of hope is questioned by patients, their families, and the medical staff who watch them suffer.

The forgotten victims of Breast Cancer Awareness Month

Health on Today: ‘Pinktober’ ignores breast cancer patients who can’t be cured, some say  From the article:

“I can’t celebrate because I’m not a survivor,” said Clark, who was diagnosed in 2010 with an aggressive Stage III cancer that quickly advanced. “There’s not a cure.”

“The message has really been skewed,” says Knackmuhs, 61, of Wyckoff, N.J., who was diagnosed with Stage IV disease in 2009. “It’s so associated with selling products and shopping and dubious product endorsement.”

I’m always skeptical of something that is treated like a universal good — “I was going to spend the money/go to the event anyway and now some of that money goes to breast cancer awareness!” — especially when large corporations enthusiastically jump on board. After doing some research into this for a presentation I did for class last semester, I’m collecting examples of pink co-branding this October with hopes of doing a full study on the topic in the future.

For now, I’m going to skip my rant and let others speak. Read the article linked above, and from my presentation, these quotes:

  • “My disease has become a marketable commodity and nothing more.  The sad irony in all of this is that I believe Komen’s approach to cause-marketing has only served to undermine the seriousness of this disease in the public’s perception.” – Rachel, who shared her story of metastatic breast cancer at cancerculturenow.blogspot.com, until she died this February  (If you can stand the heartbreak, read her husband’s post about enduring a “Paint The Town Pink” campaign less than 3 months after Rachel’s death.  It’s agonizing.)
  • “Telling an authentic story about an illness that is heavily laden with cultural expectations about femininity, normalcy, and triumphant survivorship requires a new way of thinking and speaking. Falling on the margins of the cultural framework, these kinds of stories can be threatening and hard to hear.“ – Gayle Sulik in Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health
  • “Fashion statements aside, once I became a person with breast cancer, it didn’t take long at all for me to develop a very low tolerance for all things pink. The sheer ubiquity of pink as the symbol of the fight against breast cancer is overwhelming. And one of the things that you discover… is that everyone … seems to assume that you are now the local poster chick…everyone assumes that you have the interest, time, energy, inclination and funds to contribute to or participate in every bleeping event, cause, or group that is even remotely associated with helping everyone else not end up like you.“ – A breast cancer patient named Kathi

Cancer survivors forgoing care because of cost… perhaps

Young adult cancer survivors often forgo follow up medical care, reads the headline of this article on amednews.com (via the AMA’s Twitter feed). The article goes on to cite a study in which

Researchers analyzed data from the Centers for Disease Control and Prevention’s 2009 Behavioral Risk Factor Surveillance System on adults 20 to 39. A total of 979 had been diagnosed with cancer between ages 15 and 34 and were at least five years past the date of their diagnosis. They were compared with 67,216 adults with no cancer.

Both groups had similar rates of having health insurance. But those with a history of cancer were 67% more likely to go without care because of cost.

The rest of the article goes on to talk about insurance rates, unemployment, cancer costs, and the economic hardship of the young.  I’ve scanned the research and it seems that they used self-reports from the subjects to determine why they were forgoing care.

That leads me to ask: is it likely that cost is the only reason for the 67% difference in care-seeking?  Perhaps the dominant paradigm that heath care is too expensive provides a convenient answer without digging into more complex and uncomfortable reasons.  Purely speculating, I’d wonder about emotional exhaustion of Damocles Syndrome, a feeling of invulnerability from both the level of mental maturity and having survived cancer already, resentment at time lost to illness and a desire to just move on until a symptom appears,  an avoidance of potential bad news, for the sake of themselves and loved ones, or any of countless personal or cultural reasons.

Maybe I’m completely wrong on this, but it seems like the researchers put a lot of thought into economic factors and few into human ones.  It’s not that the study is inaccurate — it reports what the subjects told them — but that the conclusions seem superficial.