Suppose a postcard comes in the mail, a reminder to make an appointment for a mammogram. Or a primary care doctor may order a PSA test to screen a man for prostate cancer, or tell him he should be screened for lung cancer because of years of smoking.
These patients, trying to be informed customers, may search online for a cancer center to learn more about screening, when it’s recommended, and for whom.
It might not be the best move. Medical societies and the independent US Preventive Services Task Force publish guidelines on who should be screened for lung, prostate and breast cancer, and how often, among many other prevention recommendations. However, cancer center websites often deviate from these recommendations, according to three studies recently published in JAMA Internal Medicine.
The researchers found that some websites discussed the benefits of screening but said little about the harms and risks. Some made recommendations about the age at which to start screening, but glossed over when to stop — important information for older adults.
“When we recognize that these sites are important sources of information, we have room for improvement based on screening according to the guidelines,” said Dr. Behfar Ehdaie, a urologist at Memorial Sloan Kettering Cancer Center in New York and author of the Prostate Cancer Screening Recommendations study.
Screening refers to testing for patients without symptoms or signs of disease, including prostate-specific antigen testing, mammograms, colonoscopies, and CT scans.
The researchers analyzed more than 600 cancer center websites that contained recommendations for prostate screening and found that more than a quarter recommended screening all men. More than three-quarters did not indicate an age at which routine testing should end.
However, guidelines from both the Preventive Services Task Force and the American Urological Association state that men over the age of 70 should not be routinely screened because, according to task force guidelines, “the potential benefits do not outweigh the anticipated harms.”
In men aged 55 to 69, both groups push for individual decisions after discussing benefits and harms with a doctor. However, neither group recommends routine screening for younger, average-risk men.
In addition, the study found that 62 percent of cancer center websites did not provide information about the potential harms of screening. Because prostate cancer grows slowly, it often causes no problems. However, detection and treatment can lead to complications from surgery or radiation, including reduced quality of life due to incontinence and sexual dysfunction.
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The surveys revealed similar problems on websites where other cancer screening tests were discussed. In a study of over 600 breast cancer centers, more than 80 percent of those recommending a starting age and interval for mammography screening disagreed with the guidelines. The study did not address whether the websites provided information about when to quit.
The 2016 Preventive Services Task Force guidelines, which are currently being updated, recommend biennial mammography screening for women ages 50 to 74; It found insufficient evidence of benefits and harms for those aged 75 and over. The American Cancer Society recommends annual or biennial screening for average-risk women over age 55 as long as they have a life expectancy of 10 years.
However, lung cancer screening is only recommended for people at high risk due to smoking history and older age. Again, an analysis of 162 cancer center websites showed that about half did not address potential harms.
“We think it’s important to strike a balance,” said Dr. Daniel Jonas, an internist at Ohio State University College of Medicine and senior author of the study. “It’s fair to say they could do a better job.”
Concerns about overtesting and overtreatment of certain cancers in older adults have existed for years. “The damage of screening occurs early,” said Dr. Mara Schonberg, internist and health researcher at Beth Israel Deaconess Medical Center in Boston. But the benefits of screening can come years later; Elderly patients with other health problems may not live long enough to experience them.
With mammography, for example, the harms include false positives leading to repeat mammograms or biopsies, the psychological consequences of which can last for months, according to research by Dr. Schonberg has shown.
And while most breast cancers diagnosed in women over 70 are very low risk and may never progress, “almost all are treated with surgery,” said Dr. Schoenberg, and sometimes afterwards with radiation and endocrine drugs, all of which can have negative side effects.
In terms of benefits, the data showed that it would take 1,000 women ages 50 to 74 to have a mammogram for almost 11 years to prevent one death from breast cancer.
Why do some cancer center websites omit things like false positives, repeat testing, exposure to radiation, or the aftermath of surgery? Why don’t they include information on how many lives screening actually saves in certain age groups?
“In the US healthcare system, the more procedures you perform, the more you get paid,” said Dr. Alexander Smith, palliative care physician and geriatrics researcher at the University of California, San Francisco. Radiology, which is required for both lung and breast screening, “is one of the biggest moneymakers for healthcare systems,” he noted.
Some sites may have been developed by marketers with little input from health professionals, Dr. Jonah added. Talking about risks could discourage patients from clicking the “make an appointment” button.
On the other hand, it can be difficult to dissuade older patients from screening, even when research shows little benefit.
dr Schonberg has developed and tested decision aids – booklets designed to help women over 75 and their doctors make evidence-based conclusions about mammograms.
To a certain extent they work. Older women who receive the booklets are more knowledgeable and more willing to discuss benefits and risks with their doctors; they are less likely to continue screening. But over the course of 18 months, about half of the women who received decision aids still got a mammogram, as did 60 percent of those who didn’t.
dr Schoenberg explained it as a habit or “the need for validation”. Patients may also overestimate their level of risk; The average 75-year-old woman has a 2 percent chance of being diagnosed with breast cancer over five years, she pointed out.
Additionally, screening decisions involve an issue that some older patients (and physicians) prefer to avoid: life expectancy. The American Cancer Society and some medical groups use 10-year life expectancy rather than age limits as a guide to when older patients can stop screening.
“Prognosis is one of the key factors in decision-making,” said Dr. Smith. “Will patients live long enough to experience the benefits?” This can be an uncomfortable conversation about old age, health and mortality.
How should older adults learn about cancer screening? In addition to discussing pros and cons with their doctors — Medicare requires such a visit before it covers lung cancer screening — patients can see the latest reviews on the US Preventive Services Task Force website.
You can also use ePrognosis, an online guide that Dr. Schonberg, Dr. Smith and colleagues at UCSF developed a decade ago. Most visitors are healthcare professionals, but patients can also use the site’s calculators to determine if they are likely to benefit from breast and colon cancer screening. You can use questionnaires to help determine your life expectancy and several decision-making aids.
Of course, patients can also consult cancer center websites – but with an eye on what may be missing.