Suck it up, buttercup

Posted: June 30, 2014 | Author: | Filed under: cancer fatigue | Tags: , , , , , , , , , , | 6 Comments

This post is not going to make you feel good. It will not mince words. It will not play devil’s advocate. The topic hits home on a very sensitive subject for me, and I’m not in the mood to play nice. Forewarned is forearmed.

Proceed at your own risk.

The American College of Physicians has released a recommendation that advises women to forego their annual pelvic exam because such exams cause “emotional distress, pain, and embarrassment.” As the ACP’s former president, Dr Sandra Adamson Fryhofer, stated, “The pelvic exam has become a yearly ritual, but I think it’s something women don’t necessarily look forward to. A lot of women dread it.”

The ACP also says that in non-pregnant, asymptomatic women with no known cancer risk, pelvic exams don’t often detect disease or save lives, and that the exams do more harm than good. Pap smears are still recommended, however, because they do in fact detect cervical cancer. It’s the “no known cancer risk” part that really galls me. How do we know what our risks are if we can skip out on unpleasant tests?

Despite the ACP’s “feel-good” stance, the American College of Obstetricians and Gynecologists continues to recommend pelvic exams and says that eliminating the exam would mean “providing women with less comprehensive care.” In addition, the ACOG recognizes that many women don’t mention symptoms in their nether-regions until a doctor finds an abnormality, and that many women receive peace of mind from knowing that everything is normal below the belt.

Gynecologists agree that pelvic exams are not good tools for screening for ovarian cancer, which is notoriously difficult to diagnose. But, they say, experienced physicians can use pelvic exams to find other problems, such as noncancerous fibroids, and to identify changes linked to urinary incontinence and sexual dysfunction. And equally importantly, to establish a baseline of normality so that a change is easier to detect.

Dr Barbara Levy, vice president for health policy for ACOG says, “Not everything we do in life can be studied in a randomized trial powered to find a scientifically valid answer one way or another. I’m not sure there’s evidence to support most of what we do on physical exams. Lack of evidence does not mean lack of value.”

 Anyone who has ever undergone a pelvic exam knows it’s not pleasant. No doubt. But guess what’s also unpleasant? And dreadful? Reproductive cancers. And if doctor’s groups are recommending women be spared from unpleasant exams today, who’s to say that similar recommendations against other unpleasant screenings won’t follow? Residents of cancerland, raise your hand if you find routine visits to your oncologist unpleasant. Raise your hand if those visits and the requisite exams produce anxiety. Now let’s have a show of hands for those who find the frequent port flushes to be unpleasant and painful. But we do them anyway, don’t we? We suck it up and get it done, despite the anxiety and the fear and the pain.

My sweet mama was one of those who didn’t like to go to the doctor and who put off going as long as humanly possible. She was tougher than a $2 steak, but she didn’t like to go to the doctor and would find any excuse to skip it. In fact, when she was being eaten alive by ovarian cancer and had a belly so distended she looked 6-months’ pregnant, and when she had raging “tumor fever” from the unwavering progression of her disease, she still didn’t want to go to the doctor.

She would have loved to hear recommendations like that of the ACP, saying “Don’t worry about it. Don’t put yourself through any unnecessary discomfort — physical or emotional.” And I would love for her disease to have been caught sooner, and to have her still here, still with me. Instead, I have a hole in my life and a missing piece in my heart. I have no patience for recommendations and doctors who say it’s ok to skip out on tests/screenings/visits/checkups because they’re no fun.

IMHO, the ACP’s latest recommendation is akin to the “everyone’s a winner” mentality that pervades our society. Here we stand, handing out trophies to both winners and losers and telling women that it’s ok to skip an unpleasant exam. We’re inundated with messages that we “deserve” more — whether it be a house we can’t afford or a luxury item we don’t need — and we forget that life is sometimes unpleasant. Certain aspects of life can be painful. It’s not all smooth-sailing. In a whacked-out effort to avoid hurting anyone’s feelings, we lean too far the other direction. Instead of building ourselves up, these misguided efforts have the opposite effect: eroding self-esteem, self-worth, and self-confidence by failing to learn how to weather storms. suck-it-up

 

 

The value of tinkering

Posted: May 29, 2014 | Author: | Filed under: Uncategorized | Tags: , , , , , , , , , | 6 Comments

David Walmer was a fertility specialist at Duke University who went on a mission trip to Haiti in the early 1990s. While there, he was shocked to learn of the high rate of cervical cancer among Haitian women. A disease that is highly preventable was killing some 250,000 women a year in developing nations, and Haiti led the world in deaths from cervical cancer. Walmer knew he had to get involved.

Walmer returned to work in North Carolina and learned everything he could about cervical cancer, mainly that it can be detected for a decade before becoming untreatable. Detection is easy because unlike many cancers, it grows in a visible spot: on the outside of the cervix. Routine screening via Pap smears is the norm; before Pap smears became the de facto screening tool, cervical cancer killed more women than any other form of cancer.  Since the adoption of Pap smears, the death rate from cervical cancer has dropped by 70 percent. The CDC reports that in 2010 in the United States, 11,818 women were diagnosed with cervical cancer. Of those, less than 4,000 cases were fatal. Compare that to the CDC’s breast cancer stats for the same year: 206,966 women and 2,039 men were diagnosed with breast cancer. Of those, 40,996 women and 439 men died from breast cancer.  Therein lies the inherent value of a highly visible cancer

If a Pap smear detects abnormal cells, the next step is to examine the cervix via a special magnifying lens called a colposcope. Walmer realized that outfitting underdeveloped nations with colposcopes could make all the difference in preventing cervical cancer deaths, but that getting colposcopes into the hands of doctors in those nations would be unrealistic because of cost, size, and dependence on electricity. Undeterred, he opted to get creative.

He realized that a common surgical tool — the loupe — could provide magnification without electricity. To provide the contrast needed to detect suspicious cellular activity on the cervix, Walmer bought a Halogen bike headlamp and a green filter for a camera and began to tinker.

Giulia Forsythe

Giulia Forsythe

A colleague at Duke who taught biomedical engineering got wind of Walmer’s pet project and lent some muscle: namely students in his Engineering World Health club. One of those students, Theo Tam, recruited four other students to work on Walmer’s portable colposcope. These four young men were some of the brightest minds in the sciences and engineering student world, yet they were freaked out by the prospect of working on something so closely tied to the most intimate part of female anatomy. Tam says the other guys were willing to take on a multitude of projects designed to improve medical conditions in third-world countries, but not the portable colposcope.  “Anything but the V-word,” Tam says. “Imagine the horror.”

Tam also got creative, and convinced the guys to get involved with the parts of Walmer’s project not related to “the V-word”: marketing, finance, and other “safe” parts. Once they got past the horrifying idea of the female body part, the guys got to work. They assembled a prototype colposcope using lenses from a $2 pair of reading glasses, magnification from a $10 pair of binoculars, and lights from a $16 battery-powered LED. The first portable colposcope, named the CerviScope, was born. After a few more tweaks, it was ready to go. With help from a grant from an investment bank, the CerviScope was ready for mass production.

Walmer created a nonprofit, called Family Health Ministries, from his North Carolina home, to get the CerviScope into healthcare facilities in impoverished countries. FHM’s goal is to screen for and prevent cervical cancer. An integral part of achieving that goal is advocating for the HPV vaccine. The American Cancer Society also advocates for the HPV vaccine; read more about it here. The CDC provides compelling evidence for the HPV vaccine: A 2013 study shows that in the 8 years since the vaccine’s introduction, the virus has decreased 56 percent among girls ages 14 to 19. CDC Director Tom Frieden estimates that two-thirds of American girls aged 13 to 17 have not been vaccinated, and that the 2013 study proves that “the HPV vaccine works well, and the report should be a wake-up call to our nation to protect the next generation by increasing HPV vaccination rates.” Frieden warns that the low vaccination rates in the United States will equate to 50,000 new cases of cervical cases; cases that would be prevented with the vaccine.

There are many take-away messages from David Walmer’s story. That easily-visible cancers are much preferred to those that burrow deep into the body’s nooks & crannies. That even the most brilliant scientific male minds are rendered powerless by the female honey pot. That one finds one’s calling in the most unlikely places. And that tinkering definitely pays off. In a very big way.