To Treat Or Not To Treat?
That is the question more and more women diagnosed with cancer are being forced to answer. As science becomes more adept at detecting the disease, it can spot tiny tumours that would probably never be deadly – making aggressive therapies (along with their
Some women are choosing not to treat cancer. Here’s why...
“Early detection saves lives.” This mantra – the crux of countless public service announcements and awareness campaigns – is as encouraging as it is empowering. Plus, underdiagnosis remains a problem in SA, where cancers are often caught too late. But at the opposite end of the spectrum, another issue is on the rise: that of overdiagnosis. As technology advances, science can now zoom in on miniscule flaws that make cancer detection a murkier matter. Take mammography. If five women over the age of 40 were to get mammograms, one of them would be saved from dying of breast cancer. But another three could be called back for additional testing for a “false positive”, something that looks like cancer, but turns out to be harmless: a cyst or calcium deposit, benign tumour or dense tissue. This phenomenon is being called overdiagnosis and, in recent years, it has morphed into a lightning rod due to the collateral damage it can cause: patients are exposed to the cost, emotional turmoil and side effects – some of them life-threatening themselves – of unnecessary surgery, chemotherapy and radiation.
Overdiagnosis isn’t limited to breast cancer. A study of 12 high-income countries found that thyroid cancer has become the most commonly diagnosed cancer in women, yet studies suggest most of this increase is due to very small, non-threatening tumours. The same goes for the vast majority of abnormal skin growths. Meaning: the tools to find microscopic abnormalities are now, in some cases, more powerful than the tools to understand them. “Say you have a tumour the size of a pea. This pea-sized lesion may not be genetically programmed to grow, spread and kill. It may be genetically programmed to stay pea-sized for the next 40 or 50 years,” says oncologist Dr Otis Brawley, a global leader in the field of cancer prevention and control. Problem is, doctors don’t yet have a way to distinguish the non-growing tumour from the one that someday will pose a threat. As a result, almost everything is treated aggressively. Researchers believe overdiagnosis – and subsequent overtreatment – might cause some women to lose trust in, and abandon, future screening altogether. What’s more, when typically slow-growing and rarely lethal cancers (as opposed to highmortality cancers like pancreatic and ovarian) are found, some experts now suggest a practice called active surveillance – monitoring a tumour and acting only if it stirs. So far, it’s been a tough sell for both patients and doctors. After all, it’s hard to get your brain around the idea of having fewer screenings or of receiving a cancer diagnosis and then waiting to see what happens. But as these three women’s stories illustrate, sometimes you can do just that.
JAN: “Take it out.”
Eight years ago, Jan Vick Harris’ doctor notified the then 55-yearold that her annual mammogram had uncovered an abnormality. A biopsy confirmed she had DCIS, ductal carcinoma in situ, also known as stage 0 cancer, in the milk ducts of her right breast. Her breast surgeon recommended aggressive treatment to make sure it hadn’t spread: 10 rounds of radiation, twice a day for five straight days, followed by surgery. Petrified and in shock, Jan consented. She was worried about the side effects of radiation – including pain and a breakdown of healthy breast tissue – but went ahead anyway. The idea that there was a ticking time bomb in her breast was unbearable, especially since she’d lost her father to lung cancer. When she later consulted with an oncologist to make sure all was well, he told her that what she had was not actually considered cancer – despite the name – and that it rarely morphs into the disease, even without treatment (according to a recent study, only about three percent of cases become deadly). Jan was flabbergasted. If she’d had this information up front, she says, she might have opted for a more conservative approach, like more frequent mammograms to monitor any growth. DCIS, which represents about 11 percent of all breast cancers found through screening, throws women each year into the same quagmire. The words cancer and carcinoma evoke an almost primal fear. In situ is Latin for “in place” – as in, not likely to invade surrounding tissue – but most of us don’t read Latin and most doctors don’t explain what the term means. “Patients generally want to cut cancer out. They want to treat it aggressively,” says Brawley. And doctors may be motivated to recommend immediate treatment for fear of being sued later on the off chance something does spread or get worse. A recent study found that between 2007 and 2011, even in the face of the three-percent mortality statistic, 88 percent of women diagnosed with DCIS were treated with surgery, such as lumpectomy or mastectomy. This has led some experts to argue that for DCIS, the Big C label should be replaced with a less scary word. Research from the University of California at San Francisco suggests this move could have profound effects on women’s treatment decisions. In the study, healthy women were asked to imagine that they were diagnosed with DCIS. When the condition was described as “non-invasive breast cancer,” roughly half of the women said they’d want surgery; when it was characterised as a “breast lesion” or “abnormal cells,” only about a third said they would opt to treat surgically.
SARAH: “I don’t want surgery.”
When Sarah*, 47, learned of her thyroid tumour, she had just completed treatment for lymphoma, a cancer of the immune cells. During a follow-up PET scan, her thyroid lit up: she had a minuscule tumour. Familiar with the unpleasant side effects of chemo (including a slight chance of developing other cancers from zapping nearby healthy cells) and radiation – and because her own research told her most thyroid cancers are slow growing – she didn’t want to leap into treatment. But the first two doctors she saw
wanted to remove her thyroid immediately. After weeks of searching, she finally found a physician comfortable with active surveillance – in this case, keeping an eye on her tumour with an ultrasound every six months. When Sarah shared her story on social media, presenting her choice as an option for other thyroid patients, she experienced a flood of backlash. “I was actually floored. I thought people would take my information for what it was: ‘Great! There’s another alternative,’” she says. Instead, people called her “crazy” for not having surgery. More than 64 000 people were diagnosed with thyroid cancer in 2015; that’s double the rate in 2002. But still, the number of people dying from the condition has remained relatively flat. Which begs the question: has the cancer itself soared or just the discovery of it? Some experts, including Dr Juan Brito, an endocrinologist at the Mayo Clinic, feel it’s the latter. Nearly all of the increase in thyroid cancer rates is due to the detection of sluggish growths less than two centimetres in diameter, called papillary thyroid tumours. The nodules are usually discovered during an external exam at a routine doctor’s appointment. Recent advances in ultrasound and biopsy, which are used to confirm the diagnosis, have allowed doctors to detect tumours so small that they previously wouldn’t have been discovered. In Brito’s mind, scores of women with these tumours are getting unnecessary treatment. And while surgery is extremely effective (a 99.9 percent 20-year survival rate), it can, in about two percent of cases, damage the vocal cords and lead to low calcium levels (which can cause muscle spasms and numbness). Women who have their thyroid glands removed must also take a hormonereplacement pill – which can lead to an irregular heartbeat and osteoporosis – every day for the rest of their lives.
LAURA: “I changed my mind.”
You may be thinking, “Okay, there’s a 99 percent chance my cancer will never amount to anything, but what if I’m that 100th woman?” Until scientists can definitively sort the harmless tumours from the deadly ones, the decision of what to do comes down to one question: is it easier to wake up every morning knowing you have cancer in your body, but safe from the consequences of potentially pointless treatment – or to take the risk of treatment, freeing yourself from the nagging feeling that there’s “something inside you” that could one day end your life? “In most cases, there is not an absolute right answer,” says psychologist Dr Michael Stefanek. And the answer could even change during the course of your disease. Three years ago, when Laura* was 25, a Pap smear found cervical dysplasia, abnormal tissue that could morph into cancer – or not. “The majority of dysplasias caused by HPV will, if watched over time, disappear on their own,” says Brawley. “But there are some people who are uncomfortable with watching and waiting and they insist on treatment.” Commonly, that involves electrically burning off the dysplasia (the procedure can often be done without anaesthesia and has a 99 percent cure rate), which, in rare cases, can leave the cervix weakened and sometimes unable to bear the weight of a foetus. “We can cause cervical incompetence, which raises the risk for miscarriage, by treating too many of these lesions,” says Brawley. Laura’s doctor made this clear at her diagnosis three years ago. She was engaged and wanted a family. “Having kids has always been very important to me,” she says. “I was worried that if I got treatment too soon, I could put myself and my children at risk for early birth, but if I waited too long and ended up with cervical cancer that would put the whole kids thing out the window.” After scouring the Internet and discussing her diagnosis with her mother, a nurse, she decided that, instead of treating the dysplasia, she would monitor it with frequent biopsies. Her doctor supported this. Six months later, when the biopsy showed the dysplasia had worsened; she reversed her decision and had the procedure. She hasn’t yet tried to get pregnant. Still, she is comfortable with her choice because at every step, she was able to weigh all the consequences before deciding.
YOU: “I’ll make an informed choice.”
Laura’s scenario, doctors say, is what early detection in 2017 should look like: empowering women with the pros and cons and allowing them to chart their own path. Early detection (see The Big Screens) is still important since you need information in order to make an informed decision. The earlier an abnormality is caught, the more options you have. If screening does reveal the beginnings of cancer, variables like age and family history can inform how aggressively to treat. Ultimately, you need to talk to your doctor about all the factors that affect your particular case in order to make a decision. You may also want to get a second opinion (most docs actually welcome them) or speak with other diagnosed women (support groups like Reach For Recovery or CANSA resources can help). Talking about why they chose to treat or not and how they feel about that decision today can provide unique insights. “Some patients will feel comfortable watching and waiting because they understand that this is unlikely to be a problem,” says Brito. “That’s perfect for them.” And there are other patients who, even armed with all the information, still don’t feel secure carrying a tumour. “And that,” he says, “is also perfect.”
SOMETIMES IT CAN BE A WAITING GAME.