We have come a long way in the public's perception of cancer and in the willingness to even say the word out loud compared with previous generations.
This is a good thing.
When I wrote my first book about cancer, I tried to be a good grandson and sent one of my first copies to my grandmother. Upon receiving the book and seeing the word “cancer” on its cover, she immediately hid it on her bookshelf, behind what she considered to be less controversial subject matter—a collection of Danielle Steel novels.
Now, celebrities such as Good Morning America host Robin Roberts and basketball star Kareem Abdul Jabbar have gone public with specifics about their diagnoses and the treatments they have undergone. Even the actress Farah Fawcett invited the public to join her as she underwent her colonoscopy in the midst of treatment for anal cancer. This has raised awareness about cancer and cancer therapies, and has made people realize that cancer is treatable, frequently curable, and that a multitude of support services are available through the cancer journey.
But have we gone too far?
In a Viewpoint article appearing in JAMA, Esserman, Thompson, and Reid, representing a National Cancer Institute working group convened by Barry Kramer, MD, MPH, focus on the problem of overdiagnosis—identifying lesions that are labeled as cancerous, but that in reality may never cause harm beyond the nuisance of having been diagnosed.
And what a nuisance that can be.
Once handed a cancer diagnosis, a person then must decide whether or not to get it treated, often considering aggressive interventions to eliminate these “near cancers”—interventions such as surgery and radiation therapy, which can lead to long-term side effects, and even disfigurement. Unfortunately, many of these conditions were never destined to become truly invasive cancers, and as a result women with ductal carcinoma in situ are now left without breasts, and men with Gleason 6 prostate cancers without prostates (most of whom endure some degree of incontinence or impotence for decades of their remaining lives), unnecessarily.
If a person decides against treatment, he or she must then justify to family and friends why not—and this is a burden that should not be minimized. Implicit in even the most innocent “Why aren't you getting treated?” question is that maybe you should—that you made the wrong decision, and heaven forbid that one day you develop a truly invasive cancer and missed your chance to abort it.
How did this happen?
Some of this is fallout from truly successful cancer screening programs—for colon and cervical cancers—that have led to decreases in cancer incidence and mortality. Optimal screening occurs in cancers with long latency periods in which pre-cancerous lesions can be identified, and balances the morbidity and cost associated with the screening program itself with lives saved. As we screen for more cancers, though, we find more abnormalities that, depending on their classification, raise incidence rates without impacting the rates of late stage cancers or cancer death rates. Some of this results from the increased precision of diagnostic tests that can identify these near cancers. And some abnormalities have been labeled cancers by groups that have a vested interest in gaining attention and funding for those conditions.
A friend of mine in her late 20s was recently diagnosed with ductal carcinoma in situ in one of her breasts. She did not have any genetic predisposition to breast cancer, and no family history. After discussing her diagnosis with her surgeon and a medical oncologist, and a family and friends, she decided to undergo a double mastectomy.
“It's cancer and I want it out. I don't want to get married, have a family, and then have to deal with cancer when there are people who depend on me,” she told me.
She has a great attitude about her diagnosis, and her work colleagues even threw a party for her before she left work for her surgery, including having breast-themed pastries and a cake! She doesn't regret her decision one bit.
But should she have even been forced to make the decision in the first place?
Now that we've achieved our goal of encouraging people to accept their cancer diagnosis and treat it, it's time for us to swing the pendulum in the other direction a bit, for those diagnoses that really don't deserve the designation. Changing the name of these diagnoses, eliminating the word “carcinoma” is a great first step, but it's a workaround—semantic smoke and mirrors. More important are the conversations that occur between health care professionals and patients, and to make sure that these discussions aren't influenced by anecdotes, fear of litigation, advocacy groups, or industry. Part and parcel with this approach is an increased focus on clinics that have the capacity to follow patients with near cancers, and more specific guidelines for their management.
And making the burden of the decision not to treat “cancer” less monumental.
More ‘Second Thoughts’!
Check out all the previous articles in Mikkael Sekeres' award-winning column in this collection on the OT website: http://bit.ly/OT-SekeresCollection