The ‘C’ Word

3 03 2012

The other day, a small group of ovarian cancer survivors came to tell their stories to my cohort of med students.  It’s part of a national program called Survivors Teaching Students, which is designed to raise awareness about the early detection of ovarian cancer and its effects on the women afflicted with it.  These ladies speak to nurse practitioners, nurses, PAs, and all of their respective students as well as to medical students.  According to their website, the surviving women share their stories and key info about ovarian cancer in 81 medical schools and 33 nurse practitioner, nursing, and PA schools across the country.

The ladies who spoke with us were local women, many of whom had likely with physicians that we, as students, had likely interacted with (there are only so many gyn-oncologists in any given geographic area).  All had been diagnosed in a relatively advanced stage, and most had recurrences (one woman had her cancer recur 6 times!).  Every one of them advocated for more routing screening and more aggressive education and awareness of the signs and symptoms of ovarian cancer.

What do you know about ovarian cancer? Here’s the brief rundown: while it is the deadliest of the gynecologic cancers, it is also by far the least common.  It causes the 5th highest number of cancer deaths in women annually.  There is a tumor marker called CA-125 which can help detect the presence of the cancer, but it is not used as routine screening because it isn’t cost-effective (remember, this cancer is not common).  About 62% of women are diagnosed only after the cancer has spread to other organs or lymph nodes, which is one reason why it is so deadly.  The symptoms are very nonspecific and the “classic” combination of urinary symptoms, abdominal bloating, pelvic pain, and GI issues is not common.

Fact: Just because a combination of signs, symptoms, labs, imaging, or physical exam findings is called “classic” does not mean it’s a common presentation.  For example, in patients with bacterial meningitis, the “classic” combination of fever, neck stiffness, and altered mental status occurs in only 20-ish percent of all patients.

[When you do a Google images search for ‘ovarian cancer,’ you’ll see quite a few images of various women clutching their bellies]

In many ways, ovarian cancer is much like pancreatic cancer or glioblastomas—a type of brain cancer—in that they don’t start causing problems until very late in the game, at which point not much can be done to affect the course of the disease.  That being said, those other cancers have 1-year survival rates of 20% and 30% if they get treatment; in comparison, ovarian cancer has a 5-year survival rate of 46%.  These are averages, so obviously with earlier detection those survival rates would improve.  This is one reason why every group of cancer survivors you will ever come across always pushes for earlier detection as a number 1 goal.

While I sincerely appreciated the openness and courage that it took for this group of women to come in and candidly, unabashedly recount their incredibly emotional and very personal journeys to recovery, I have mixed feelings about the whole idea of the program.  It was nice to be reminded of the specific “classic” symptoms, but when it comes down to it, any doctor with a functioning brain should be able to put 2 and 2 together, realize that the symptoms point to an abdominal mass, and order imaging with subsequent diagnostic surgery.  That diagnostic sequence doesn’t require specific knowledge of ovarian cancer until the pathologist gets involved after the surgery.  If ovarian cancer is high on the differential diagnosis, docs can order blood levels of that tumor marker CA-125, and if that’s elevated it definitely raises suspicion of ovarian cancer, but it really doesn’t change the initial diagnostic sequence.

So if there’s a “screening” test, why isn’t it checked routinely in all women?  There are several reasons, first and foremost being that the tumor marker is not a screening test.  That test was designed to monitor success of treatment in patients with known ovarian cancer, just like PSA was designed to do the same for prostate cancer.  When people start trying to use those tumor markers as a diagnostic tool, things get risky.  There are dozens of similar tumor markers that correspond to dozens of other cancers, and they usually cost in the ballpark of $100 apiece.  It simply isn’t logistically or financially feasible to screen every person who is at risk for every possible tumor marker.  This is why evidence-based medicine is used to help identify the populations in which these blood tests save the most lives.

The previous paragraph on screening tests is why, truth be told, I was rolling my eyes a little on the inside when one of the ladies began to speak about how she asked her doctor to do the CA-125 because she’d heard about it on Oprah, and her doc said she had a much greater chance of “being hit by a bus” than having ovarian cancer (of note, this was also before she started having symptoms).  She was still visibly bitter about this, but I agree with her doctor.  There was no reason to do the test, and she did have greater odds of being hit by a bus.  Unlikely things are unlikely, but you know what they say: someone always wins—or loses—the lottery.

When dealing with my occasionally cynical outlook, please keep in mind that this is medical school.  Since I was in high school, I’ve sat through presentation after rally after health fair after “awareness” month after fundraising event, in addition to all of the usual radio, television, magazine, and internet media advocating “awareness” for one cancer or another.  And I hate to say it, but it’s always the same.

[Yes, there really is a ribbon for congenital diaphragmatic hernia.  This photo only shows a few ribbons, and if you look hard enough, you’ll find that very often, more than one condition will share the same ribbon color.  Look at the purple one.  If I had something like pancreatic cancer or cystic fibrosis, I would not want to share a ribbon color with fibromyalgia]

Everybody has survivor rallies and “in memoriam” 5ks and silicone bracelets and fundraising campaigns and t-shirts and inspirational stories that all sound the same.  Every group comes a similar set of statistics.  The only thing that seems to change from cancer group to cancer group is the color of the ribbon.

When lay people are this inundated with awareness, they stop paying attention.

I have my fair share of relatives and friends affected by various cancers, and I am supportive of them.  I’m not trying to make light of any cancer survivor’s struggle, because these journeys to find cures for themselves can seem so Sisyphean, not to mention the constant fear of recurrence (which a number of studies show is actually more stressful than chemo).  I’ve seen and heard that through this struggle for their lives, many of these patients incur a unique insight and wisdom that it takes others a lifetime to achieve.

Bottom line:  when anyone speaks individually about the gravity of a cancer diagnosis, I believe them.  On the other hand, watching hundreds of people in pink parade around asking for money for “awareness” and “a cure” does not affect my approach to a patient with breast cancer, it does not increase my awareness or my empathy, and it does not make me any more driven to do research for the cause.  Bringing in speaker after speaker after speaker and trying to shove empathy down my throat is ineffective.

It’s tragic, in my opinion, that cancer has become simultaneously more and more commercialized and depersonalized.

So how should cancer awareness and education be approached in medical school?  It already is! I know, it’s a shocker.  They tell us all of those statistics, risk factors, diagnostic procedures, and treatment options in the first and second year, and anything that we have forgotten will be reinforced once we actually care for patients who have those respective cancers.  When I was in internal medicine, I watched a patient from the time of her diagnosis with lung cancer decline to the point where, two weeks later, she was transferred to hospice before she passed away.  Caring for her reinforced my understanding of lung cancer much better than any group of survivors talking at me ever could have.

I have the utmost respect for people who can stand up in front of complete strangers and tell their deeply emotional stories, and I will listen to all of the stories that these survivors would like to tell because I can see how much it matters to them.  But very few of these stories will be ones that stick with me for more than a few weeks before my memory melds it together with all of the similar stories that I’ve been told throughout my healthcare education.  And I expect that even fewer of these stories will influence the way I practice medicine in the long run.




2 responses

5 03 2012
Mike C

Just discovered your blog through another med school site, and I have to say I’m loving you’re writing so far. It kicks ass! Definitely going to be spending some of my Spring Break reading through everything here.

By the way, if you get a chance, can you shoot me an email? Thanks!

6 03 2012

If I had something like pancreatic cancer or cystic fibrosis, I would not want to share a ribbon color with fibromyalgia.

Ok that was really funny.

We had the same ladies come to talk to us, and I’m inclined to agree with you. I do have a friend who had a random, completely inappropriate CA-125 drawn, who had stage 1 clear cell ovarian cancer, whose life was probably saved by the test, but that doesn’t mean it’s a good idea for everyone.

So, what do you think?

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