Sometimes, doctors get it wrong. Trisha Torrey, a patient advocate who lives in Syracuse, New York, learned this first-hand when the golf-ball-sized growth in her abdomen was misdiagnosed as a rare and fatal tumor just before the Fourth of July weekend in 2004.

The surgeon who removed the growth in Torrey’s abdomen told her, “‘I’ve never seen anything like this before,’” Torrey recalls. “I asked if I could see it, but they’d already whisked it off to pathology.” Torrey’s surgeon was so puzzled by the growth that he consulted another doctor. Both concurred that Torrey had subcutaneous panniculitis-like T-cell lymphoma, a bleak prognosis that gave her only a few months to live. And they wanted to start Torrey on chemotherapy right away.

“I didn’t sleep for two to three weeks,” Torrey says, adding that she read every piece of information on the disease that she could find. A decade ago, that meant 53 articles. Meanwhile, Torrey’s other test results – including blood work and CT scans – showed no evidence of cancer. That was the first red flag. “I told my doctor, ‘I need to get a second opinion,’” Torrey says. “He looked at me and said, ‘What you have is so rare that no one will know anything more than I do.’”

“That was the switch,” Torrey continues. “I went from being a passive receiver of health care services” to who she is today – an advocate for patients who find themselves in situations similar to her own.

Taking Matters Into Your Own Hands

Torrey asked for her medical records. Looking through them herself, she discovered that some results were missing from one of the tests the doctors had ordered – the clonality test. “I said [to the original doctor], ‘You were going to put me through chemo without those tests?’”

Torrey found another doctor by word of mouth when one night at a party, she leaked her diagnosis to friends. “It had nothing to do with being a smart, diligent patient and everything to do with too much wine,” she says. That doctor sent Torrey’s lab results to the National Institutes of Health, which came back with good news: Torrey didn’t have cancer. She had panniculitis, or inflammation of fat cells, which her clonality test – the one missing from her original doctor – would have shown, since cancer cells clone themselves and benign ones don’t. Torrey’s cells, it turned out, did not clone themselves.

“Was I happy? Of course. Relieved? Beyond,” Torrey says. “But I was really angry. Not only had it cost me every ounce of trust that I had in this system; it cost me every penny of my savings. I didn’t lose my house and my retirement. But I had to empty out my savings to pay the bills for a mistake."

"Had I gone through chemo, presumably I would have come out on the other side,” she continues. “And in the end, the very doctors who were wrong would have been heroes for curing me of an incurable cancer.”

Know Your Options

Second opinions are fairly routine. They bring peace of mind and encourage patient engagement, says Jonathan Schaffer, an orthopedic surgeon at Cleveland Clinic. “If your physician doesn’t support you getting a second opinion, see how fast you can run.”

As Torrey adds: “Any doctor who is any good at what they do will welcome a second opinion, because it will usually be a confirming opinion.”

Schaffer is also managing director of a program at Cleveland Clinic called “MyConsult Online Second Opinion,” which provides second opinions online. The program started in 2004 and has reached tens of thousands of people, Schaffer says. They started it because of the high demand for second opinions from Cleveland Clinic, most stemming from patients who weren’t able to physically travel there. Today, 30 percent of their online patients are from abroad. While the online program won’t work for every condition – multiple sclerosis is one where it’s essential to be seen by a doctor – it does work for 1,260 conditions.

Patients have to submit all their lab work, including pathology reports and blood tests – and they want to know two things, Schaffer says: whether or not they have the correct diagnosis, and if they are on the optimum treatment plan. Cleveland Clinic doctors agree with the original opinions about 75 percent of the time, Schaffer adds, and when they disagree, they call patients directly – instead of just sending out the report that goes to all online patients.

“The doctors like it because it fosters a ton of discussions,” Schaffer says. “If I have a case, I’m showing the films around to my colleagues.”

Patients also really like it, he adds – even those for whom they have to confirm a disappointing diagnosis. “We may hear three months later, ‘Thanks for letting us know that we did everything we could.’”

How to Seek a Second Opinion

If you're thinking about getting a second opinion, don’t hesitate, Torrey says. “Very few decisions have to be made on the spot. You can think about them, and you should think about them. You should absolutely feel comfortable in saying, ‘I am not sure what I need to do, but I think I need a second opinion.’”

Here are some of Torrey’s tips for getting a second opinion: