Cancer patients often lack treatment information

Cancer death rates continued to decline among men, women, children, adolescents, and young adults in every significant racial and ethnic group in the United States from 2015 to 2019, according to the latest Annual Report to the Nation on the Status of Cancer. At a time when expensive new cancer treatments are increasing rapidly, patients have more therapy choices than ever before. Yet patients are kept mainly in the dark because their doctors either can’t or won’t communicate clearly.

Vast numbers of cancer patients lack basic information, such as how long they can expect to live, whether their condition is curable, or why they’re being prescribed chemotherapy or radiation, said Dr. Rab Razzak, director of outpatient palliative medicine at Johns Hopkins Medicine in Baltimore.

The result: People with advanced cancer don’t know enough about their disease to make informed decisions about treatment or how they want to spend their remaining time.

Some patients approaching the end of life are in denial, assuming they’ll live much longer than is realistic. Yet doctors often have a far more pessimistic estimate of their life expectancy, said Dr. Robert Gramling, the Holly & Bob Miller chair in palliative medicine at the University of Vermont College of Medicine.

In a study published last year in the Journal of Clinical Oncology, only 5 percent of cancer patients with less than six months to live had an accurate understanding of their illness. Thirty-eight percent couldn’t remember ever talking to their doctor about their life expectancy.

 In a 2012 study in The New England Journal of Medicine, 69 percent of patients with metastatic lung cancer and 81 percent of advanced colorectal cancer patients thought they could still be cured. However, both conditions are generally considered fatal, said study co-author Dr. Nancy Keating, a health care policy and medicine professor at Harvard Medical School.

The Curse of patient denial (Medscape)

Denial comes in many forms, and complete disbelief is probably the most extreme. Patients may also downplay the severity of their disease, shy away from hearing bad news, or refuse standard treatment or their doctor’s advice.

Ronald M. Epstein, MD, professor of family medicine and psychiatry & oncology at the University of Rochester School of Medicine, Rochester, New York, says, “People distrust science more than they did maybe 20 or 30 years ago, or at least that seems to be the case.”

One study of patients with breast cancer carried out nearly 30 years ago suggested that denial of diagnosis generally occurs early in a patient’s course of illness and decreases over time but may arise again in the terminal phase of cancer. Another analysis evaluating this phenomenon across 13 studies found that the prevalence of denial at diagnosis ranged from 4% to as high as 47%.

The other problem is that a growing number of patients don’t believe their disease should be treated the way she or other oncologists recommend. Despite growing sicker, some patients remain adamant about sticking with alternative medicine or doing nothing.

Patients usually seek a second or third opinion on their cancer. These patients may not all be in denial about having cancer, but they typically don’t want to hear bad news, which can challenge treatment.

So what should patients do?

1ne: Get a second opinion from another Oncologist.

2wo: Have your biopsy results typed for the type of cancer. Some types of cancer are more aggressive, so you need to understand cancer marker results.

3hree: Ask a lot of questions. Which treatment does the Oncologist suggest and why? What are the side effects of the treatments? What is the chance that my cancer could reoccur?

4our: Read about the link between unhealthy lifestyles and obesity with cancer.

Cancer deaths are declining thanks to new treatments and earlier detection, but our healthcare system often treats conditions, not people. While the Internet can provide some answers, it can also confuse patients and lead to bad decisions.