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Cancer diagnosis- by mail

By Patricia Wen, Globe Staff, 12/1/2001

Jay Moody, 36, was tinkering in his garage on Columbus Day weekend when his wife brought him the bad news. Looking pale and holding a letter that had just arrived in the mail, she said, ''Guess what, honey. You have cancer.''

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Moody was stunned, first to hear that he had some form of skin cancer, and then to realize that his doctor blindsided him with the news by mail. Not even a phone call. His mind raced to his children, ages 3 and 1.

''I had this pit in my stomach,'' said the software engineer from Natick. ''I kept thinking, `Is this how it's going to end for me?'''

Moody has calmed since learning from family and friends that his form of cancer is highly treatable, but his case highlights growing criticism of the casual manner in which doctors often deliver potentially disturbing - if not devastating - test results to patients.

As more Americans respond to early screening for many cancers, including skin, breast, cervix, and prostate, physicians have more alarming results to deliver - and less time to do it. Doctors are thus more likely to exhibit what some patients under managed-care medicine believe is now far too common: poor bedside manner.

Patient advocates in Massachusetts say they get complaints about tests results delivered curtly or late, and without proper context, often needlessly frightening people. Some patients recount getting messages on their phone answering machines about disturbing mammogram results, or being mailed pathology reports with alarming news such as, ''liver tests abnormal; please call.''

''The system is badly broken,'' said Linda DeBenedictis, head of the New England Patients' Rights Group, based in Norwood.

To address this problem, including how doctors should reveal results about genetic cancer screening, a national panel of cancer doctors and psychiatrists has completed a six-part report called ''Guidelines for Giving Bad News.'' It also includes the importance of assessing how much detail, such as prognosis information, the patient really wants to know.

''There's great concern about how bad news is delivered in all kinds of cancers,'' said Debra Roter, a professor at the Johns Hopkins School of Public Health who is a member of the National Collaborative Cancer Network.

But patient advocates say Moody's case is the extreme of impersonal communication.

When his wife told him about the letter, Moody wasn't sure at first what she was talking about. On Sept. 11, of all days, he had seen a Wellesley dermatologist to ask about what appeared to be a stubborn pimple on his nose. Dr. Jean Calhoun, of Harvard Vanguard Medical Associates, didn't seem alarmed, though she took a biopsy.

Over the next four weeks, Moody said, the doctor didn't call and he practically forgot about the biopsy.

Then came the news, in a letter dated Oct. 4. It said his biopsy showed ''significant abnormality,'' and also read: ''Left nose showed basal skin cancer.''

Moody has since filed a formal complaint with Harvard Vanguard, and the medical group is planning a hearing on the matter. Dr. Calhoun did not return phone calls to her office.

Dr. Richard Marshall, acting medical director of Harvard Vanguard, said all doctors should know they ought to make personal contact with patients, in person or by phone, whenever they have test results that could be upsetting. He acknowledged that the Moody case seems to part from good standard practice.

''I do regret that this person got the letter,'' he said.

Marshall declined to discuss Dr. Calhoun other than to say he believes she does not usually send letters with cancer results. Though he could offer no proof, he said she indicated she may have tried to reach Moody by phone, though she left no call-back messages.

Moody's case is among the kinds that a national panel hopes to address through its guidelines for giving cancer test results. They suggest that doctors consider the timing and location of such talks, and such simple things as making sure the doctor's beeper is off. Doctors must also assess the patient's understanding of the illness and what type of social supports are available, said Walter Baile, a psychiatrist at the MD Anderson Cancer Center in Houston who heads the panel.

Sherri Kaplan, an associate research professor at Tufts University School of Medicine, said some doctors may make the mistake of assuming patients know a lot about cancer types, such as the fact that basal skin cancer is highly treatable. This form of cancer has a more than 95 percent cure rate and is one of the most common forms of skin cancer.

''Basal skin cancer is all over the news, and maybe there was the assumption that he knew it wasn't that serious,'' she said.

Still, she acknowledged that most people are deeply upset when they get any diagnosis with the word ''cancer.''

Moody, who will be undergoing surgery on Dec. 13 to remove any remaining cancer, said he wants doctors to never forget how vulnerable patients can feel.

''I just hope that no one has to be informed they have any kind of cancer through the mail,'' he said.

Patricia Wen can be reached by e-mail at wen@globe.com.

This story ran on page B1 of the Boston Globe on 12/1/2001.
© Copyright 2001 Globe Newspaper Company.

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