My sister just finished 18 weeks of chemotherapy for ovarian cancer, a slog that started six months ago when she underwent an eight-hour procedure to remove all visible signs and cells of her malignancy. From the moment her primary-care doctor suspected the diagnosis, Julie’s calendar has been chock-full of appointments: scans, bloodwork, chemo treatments and a transfusion. Now that she’s done with chemo, Julie can either enroll in a clinical trial or sit tight and participate in what is called “watchful waiting,” which includes regular bloodwork, scans and doctor visits.
I call it Hope. Pray. Wait.
To many, this option feels like doing nothing. And who chooses to do nothing when your very survival is on the line?
However, there is a good argument to be made for taking the watch-and-wait approach (sometimes called “active surveillance”) over treatments that too often have terrible side effects. A study published in JAMA last week found that 72 percent of men younger than 65 with prostate cancer chose surveillance over surgery or radiation; a decade prior, the numbers were reversed: Only 27 percent chose monitoring.
As the study numbers suggest, many physicians are counseling men with low-risk prostate cancer to choose active surveillance over surgery and radiation; not only is this approach less invasive, it can help men avoid the incontinence and impotence often associated with more aggressive treatment – and do so without impacting survival rates.
“I think it’s hugely important,” Otis Brawley, chief medical officer of the American Cancer Society, told The Washington Post last week, referring to the trend toward surveillance. Until 2010, he said, a man diagnosed with prostate cancer “was told to get your prostate out, next week at the latest.”
This new study comes on the heels of a major shift by the U.S. Preventive Services Task Force, the country’s leading authority on screening and testing. Earlier this month, it revised its prostate cancer guidelines to recommend that men age 55 to 69 decide for themselves whether to take the prostate-specific antigen test. Its previous guidelines recommended that men in that age group forgo PSA screening because of the potential harms, including erectile dysfunction, incontinence, anxiety and infections, that can result from treating prostate cancer – as well as the overtreatment that often ensues from false-positive results. (The group did not change its recommendation against routine screening for men 70 and over.)
Harry Herr, a urologic cancer surgeon at Memorial Sloan Kettering Cancer Center in New York, told me that the key to determining low-risk prostate cancers is a bundle of metrics and tests – including a prostate biopsy – that can distinguish indolent (or slow-growing) cancers from aggressive ones that can be lethal. For a patient with an indolent tumor unlikely to kill him, Herr says, “it’s better to do nothing even though the patient has cancer.”
The reason is that treatment can wreak havoc in many ways, sometimes without improving life expectancy. Prostate cancer surgery in particular can have severe results, including incontinence and impotence.
Michael Korda, in his memoir “Man to Man,” vividly described his incontinence (”there wasn’t a moment, day or night, that you weren’t conscious of your urine, weren’t thinking about it, weren’t concerned that you were leaking it, or dripping it, or that other people could smell it on you”). He also wrote of his obsession with having an erection again – but when he did (after drugs were injected into his penis), he immediately prayed for it to subside because of the pain.
Why is it so difficult to do nothing, to choose inaction over action? I remember asking myself that exact question nearly 35 years ago, when I was diagnosed with testicular cancer. After my right testicle was removed, the surgeon explained that I had two options: I could follow up the first operation with a long and involved second one that might leave me with significant sexual dysfunction. Or I could agree to watchful waiting, then a new approach. I’d be regularly monitored with bloodwork, X-rays and scans to determine whether my disease had recurred.
But to me at the age of 26, “watchful waiting” meant sitting out the battle while rogue cancer cells might be silently on the march through my lymphatic channels. It felt so passive – the exact opposite of being the cancer warrior we patients were supposed to be. I hated the very idea of it. I don’t think my 20-something self could have gone with an option as “unmanly” as doing nothing if I’d had the choice (which I didn’t, in the end, because my cancer had already spread).
For testicular cancer, the evidence supporting watchful waiting (now referred to as active surveillance) is significantly more clear now than it was then.
For those diagnosed with certain low-risk cancers, such as prostate, thyroid and an early form of breast cancer known an ductal carcinoma in situ, or DCIS, aggressive treatment may reduce quality of life while adding no longevity benefit. Says Herr, who has been treating cancer patients for more than than 40 years, less is often more.
But how do you persuade patients to accept that? In one recent study involving five doctors and more than 1,000 patients, Behfar Ehdaie, a surgical oncologist at Memorial Sloan Kettering, teamed up with Harvard Business School faculty and used techniques from behavioral psychology to help the doctors better explain active surveillance to prostate cancer patients.
The study reported a 30 percent overall reduction in patients choosing surgery or radiation therapy; this is on top of the recent trends showing even more men are accepting active surveilance as the primary treatment for their prostate cancer.
Ehdaie said he teaches surgeons to emphasize in their discussions with patients that “all major cancer guidelines recommend active surveillance for patients with low-risk prostate cancer. And at Memorial Sloan Kettering, over 80 percent of (such) patients choose” that option.
Another approach is to establish credibility with patients by helping them overcome any perceived bias. For example, when a surgeon admits to a patient that “in your case I recommend active monitoring instead of surgery,” the patient tends to put more credence in the opinion since it counterintuitively is coming from a surgeon.
Does this approach to treatment apply to other cancers? I asked Ehdaie. Yes, he told me, “we have started to adapt these strategies in counseling women with breast cancer regarding contralateral prophylactic mastectomy.”
He is referring to women who choose to undergo a double mastectomy when only one breast has a tumor, believing themselves to be actively reducing their risk of a future recurrence. Separately, the nation’s first prospective, randomized clinical trial, COMET, to determine whether active surveillance is safe and effective for women with DCIS (stage 0 breast cancer) is underway.
Of course, all cancers are not alike, and active surveillance is not the best practice across the board. Still, more information and more context often can help with decision-making, and taking action, despite our natural propensity to do so, is not always the best choice.
As I tell my sister with ovarian cancer: You can’t always know that you’re making the right decision – but you can try to make the best decision at any given time with the information and data you have. And yes, sometimes, for some people, that will mean doing “nothing.”