Confounding statistics

Almost everyone who receives a cancer diagnosis -- or has a loved one who’s been diagnosed -- sooner or later goes online to learn about the disease. Quite often, we scare the pants off ourselves.

Speaking for myself, I’m not always looking for information. I’m often looking for reassurance. And that can be hard to find. It can be tough to tease out hopeful trends from scary statistics.

The first otolaryngologist we consulted couldn’t identify David’s tumor before it was biopsied. That doctor had several ideas, though, of what it might be. A friend who accompanied us to the consult -- a cancer survivor herself -- advised, “Now don’t go home and start googling all of this.”

The doctor said he didn't have a problem with patients looking up stuff on the Internet. He just asked that we call him if we saw something that worried us “because so much doesn't apply to every case.”

Excellent advice. I should’ve taken it as a warning.

Do you have a science or medical background to help you keep results of clinical trials in perspective? Do you have a good foundation in statistics that allows you to interpret the numbers? If not, reading cancer studies likely will make you pull out your hair. Of course, if you’re the patient, your hair will fall out anyway, but I still advise that you limit the reading if you can.

Unfortunately, I can’t. I’ve googled “rhabdomyosarcoma” every way possible, linking it with “symptoms,” “prognosis,” “treatment,” “five-year survival,” “recurrence,” every chemotherapy drug known to humankind, and even “death.” I think after some of my online sessions, I feel sicker than David does after a dose of irinotecan.

By now I’ve looked at hundreds of studies. And pretty much all I’ve learned is that I don’t understand what I’m reading. Undeterred, I make long lists of what I assume to be relevant questions for David Loeb, our oncologist. He is so patient. Time after time he’s come back explaining that the study doesn’t say what I think it says and noting why the results don’t apply to David’s case anyway.

A top biostatistician and physician who eats clinical trials for breakfast spoke to our Medicine in Action class last year. Over a
2 ½-hour period, he delivered a Power Point tutorial on how to evaluate scientific studies.

He spelled out many reasons why the results of a particular study might be suspect or even completely invalid. Maybe there were too few participants, making the study cohort too small. Maybe the control group wasn’t really comparable to the patient group. Maybe there weren’t enough women in the study. Maybe the study wasn’t randomized, meaning patients weren’t randomly assigned to different arms of the study -- the most authoritative type. Or worse, maybe a drug company funded the research and the findings support its newly developed medication a little too much.

Those of us in the class listened attentively and took pages of notes. By the time he'd finished, our brains were numb.

At the close of our initial consult with Dr. Loeb and four other doctors in May 2008, he said, “We cure better than two thirds of patients with intermediate-risk rhabdo,” which was David’s group. Dr. Loeb looked very pleased. I remember thinking, “Why is he smiling? I’d feel much better if the number was three thirds.”

A year later, when it was confirmed that David had refractory disease -- meaning the tumor was still active despite standard treatment -- the two-thirds number slipped. Worried, I started reading studies again, looking for new percentages. A particularly disturbing statistic caused me to e-mail Dr. Loeb. He patiently explained (again) that I’d misinterpreted the number and wrote,

“Never EVER look at survival statistics again. EVER. Statistics are meaningless for the individual.”

Have I stopped? Not really, although I don’t let the numbers alarm me as much. And nothing will stop me from searching for that one study that includes a patient identical to David, who was completely cured and went on to live another 100 years.

Meanwhile, we're putting our energies into finding a treatment that will work for David and making sure he gets to live the life he wants until then. Our goal is to not let statistics confound us. Our hope is to confound the statistics.

© 2010 by Lorin D. Buck

The ‘practice’ of medicine

I like trusting the medical community. I like trusting that four years in med school, three or more years as an intern and resident working 24-hour shifts, several years as a fellow engaged in a specialty, and day-to-day experience with all kinds of patients make doctors knowledgeable, skillful and fully capable of curing disease.

Of course, that scenario works in a lot of cases. But not always, especially when it comes to cancer.

My science-medical writing course at Hopkins, Medicine in Action -- where cardiologists to oncologists spoke about the challenges of providing quality health care -- taught me many things. Chief among them:

1.  Avoid hospital admissions if you can.
2.  Avoid all unnecessary surgery.
3.  Remember that medical care is as much an art as a science.

I learned that while it's important to trust your physicians, you can't expect them to know everything. Medicine is still full of mystery.

One of the first jobs a doctor must do when he or she meets a new patient, I learned, is put together a reliable narrative, or story, for that individual. What brought this patient to the hospital or clinic? How does the patient describe his or her symptoms? What is the level of pain, if any? What medications is he or she taking? What can the doctor observe from visible physical symptoms and the patient’s state of mind? Does the patient have a history of illness? What did he or she neglect to mention? All of this requires an ability to listen attentively and ask the right questions.

What do vital signs, blood work, x-rays, scans, biopsies, lumbar punctures and other evaluative tests show? Are the results conclusive? Do they align with what the patient is saying? After the doctor has what seems to be a consistent narrative, he or she can begin treating the patient.

Obviously, some illnesses and injuries are fairly straightforward: an ear infection, a broken bone, an abscess. Others are trickier to assess. Even when the doctor seems to have all the pieces, the problem can still be difficult to diagnosis. And despite knowing what the illness or disease is, it can be exceptionally tough to treat.

It took two biopsies and four scans over six weeks to diagnosis David’s cancer. We knew he had a 6-cm. mass in his sinus cavity; the MRI had told us that much. Still, we went back and forth several times as various otolaryngologists, oncologists and pathologists suggested first that the tumor was benign, then it was malignant, then it was benign again. Ultimately, it was malignant.

Finding a treatment that will lead to cure, even with a favorable prognosis initially, has proved equally challenging.

As much as researchers have learned about cancer, there’s much more to learn. What makes malignant cells start growing in the first place? Why does cancer recur after all indications show it’s been eliminated from the body? When you have two patients with the same disease receiving the same treatment, how come one responds and the other doesn’t?

The scientific answer to many questions about cancer is “we don’t know.”

“We aren’t sure” is the answer I get to some of my questions about why David’s tumor isn’t responding to standard treatment, why half of it is dead but the other half isn’t, and even why he’s experienced few debilitating side effects from the powerful drugs in his system.

I’m OK with that because I know David’s doctors are giving it everything they’ve got and are talking to other experts as they puzzle out his “story.” Meanwhile, it's an exercise in trial and error.

One of our instructors, himself a physician, shared a timeworn saying that’s a favorite among medical practitioners: “There’s a reason it’s called ‘practicing’ medicine. Doctors keep practicing until they get it right.”

© 2010 by Lorin D. Buck

Break's over

I know it’s been some time -- 6 1/2 months to be exact -- since I’ve posted regularly to Chatterlines. Back in June, my youngest son, David, began a second round of cancer treatment for rhabdomyosarcoma, and July 1, I started a new job. Shouldering new editorial responsibilities, helping David manage his medical care, plus being a sounding board as my parents got ready to move from their four-bedroom home to a two-bedroom retirement cottage, crowded creative writing ideas right out of my mind.

But now I have a handle on my job, David is back at college and my parents are settling into their new place. Another tidal wave of change and upheaval has washed through -- for the moment. I can get back to the business of writing.

If you’ve read earlier posts, you know that I’ve wrestled with a way to orient Chatterlines. Should it simply be an online journal, with reflections on the quirky things that happen every day? Should the posts relate to a central theme? I’d like Chatterlines to be a blog about something, as I’ve said before, but about what?

As I think about those things, I can't ignore the fact that cancer has been the driving force in our lives the last 22 months. It's the proverbial elephant in the room. It's the thing that occupies my mind most of the time, and it's probably the thing I should write about.

While I would never choose the path cancer has set down for us -- nor could I ever find a way to justify the physical and psychic suffering David's endured -- this journey nonetheless has been filled with gifts. It's been rich with lessons in compassion, the kindness of strangers, the love of friends, the devotion of family, the resiliency of the human spirit and the tenacity of hope. It's been a privilege to watch each person in our life respond when serious illness knocked at our door. There have been many surprises and very few disappointments.

Since May 2008, I have kept loved ones updated about David's progress through an online CarePage. The entries are filled with the day-to-day, week-to-week drama of surgeries, scans, chemo infusions, side effects, blood counts and hospital admissions, as well as victories, large and small. Some people say it's been helpful to read about what it's like for a family to go through a crisis like this. They've encouraged me to write more.

At this point, I'd like to step back and look at the bigger picture. Where have we been? What does an experience like this teach us about ourselves, and about others? When you are forced to confront something very hard, what is it that makes you stand up and fight and see the thing through, instead of cowering in a corner with a blanket pulled over your head? What becomes important, and what no longer matters? How do you relate to time -- that great shapeshifter -- as it flexes its muscle, sometimes shrinking, sometimes expanding?  

I invite you to join me on this journey, wherever it leads. I can't promise it will be riveting, but I promise it will be truthful.

Five years ago I attended the wedding of a close friend who married her high school sweetheart after her first husband died of brain cancer. At the reception, I happily downed several martinis. A member of our church, who I'd known for years, came up to me as I stood in line at the bar and said, "I never imagined you as the kind of girl who would drink martinis."

Well, guess what? I never imagined myself as the kind of mother who would nurse her child through cancer. Life is full of surprises.

© 2010 by Lorin D. Buck

Show your support?

Ah-hem. If you were on Facebook this past Friday, you probably saw some “colorful” conversations. Here’s a synopsis, in brief:

“Purple.”
“Green.”
“Black, of course!”
“Maroon with a pretty pink design.”
“Tan.”
“Beige.”
“Magenta.”

Turns out women of every stripe and hue were posting the color of the bra they were wearing at that moment. A bit of online exhibitionism? Not exactly. Evidently, the game was launched anonymously to raise awareness of breast cancer -- although a good many women didn’t know they were doing that.

Still, the cyber-peek caught on fast, sweeping across Facebook in hours. And at least one foundation did benefit.

The Washington Post got to the heart of the matter in a story that ran yesterday, "Breast cancer awareness goes viral on Facebook":

“It was no game to the people at the Susan G. Komen Breast Cancer Foundation, who were stunned to find themselves the beneficiaries of a Web phenomenon they didn't begin to understand. At the start of Friday, they had exactly 135 fans on their Facebook page. By 5:30 in the evening, they had 135,000.”

Donations to the foundation were up, too.

And it wasn’t just here in the States. Teasing, I posted this on my Facebook status Friday: “Black. What’s the question? ;-)”

Within minutes I had a reply from une amie in Caen, France: “Just to inform you that the question is ‘what color are your underwears’ ... ;-)”

Here’s another story, from The Telegraph in the U.K.: "Facebook 'bra colour' status update craze 'raising breast cancer awareness'."

It seems women everywhere were more than happy to offer a virtual glimpse of their unmentionables for a good cause.

I wish I could come up with something that clever to focus attention on childhood cancers. A lot of money has been raised to fund breast cancer research because grassroots efforts like the Facebook bra reveal have been phenomenal -- and effective.

A year ago I took a science-medical writing class through Johns Hopkins University's master's in writing program, called Medicine in Action. Each week of the semester, a prominent physician or public health expert spoke to us about the specific issues and challenges he or she faces every day.

A gynecological oncologist marveled at the level of organization behind the Race for the Cure, the pink ribbon campaigns, the 3-day walks and all the other efforts benefiting breast cancer research. If only that kind of effort could support all types of cancer, he said, we’d be finding cures faster.

The good news about childhood cancers is that they are rare. The bad news is that without a large population behind it to push for funding and research, childhood cancer isn’t going to get a lot of notice.

Not only is my son David's cancer one that predominately strikes children and young adults, but it’s also a sarcoma. Sarcomas, too, are relatively rare and, therefore, not that popular. As his oncologist David Loeb explained to us, not many researchers want to put the time and money into conducting clinical trials that will help only a small number of patients. So the development of treatments is slow. Add that to the fact that it’s difficult to run large trials when the pool of patients isn’t that deep to begin with.

It’s hard as a parent to realize that, even though your child is getting the best treatment available, that treatment might not be good enough. And one of the reasons it may not be good enough is because there aren’t enough sick kids for it to matter.

Maybe the question for anyone dealing with childhood cancer should be, "What color is your mood?"

My answer would be "blue."

© 2010 by Lorin D. Buck