Halfway through her first round of chemotherapy, with hair falling out, weight down, and her brain in a fog, Carolyn Hackett sat down for a Zoom meeting with a team of oncologists.
She didn’t even want a second opinion, but a friend had insisted that she get one, and she had agreed for the sake of their friendship.
But that Zoom meeting likely saved her life. The team of five specialists who had been reviewing her case for a week explained that she had been misdiagnosed. The original pathologist was mistaken. She didn’t have Hodgkin lymphoma; her cancer was really non-Hodgkin T-cell lymphoma. And the chemotherapy regimen she was in the middle of would do nothing to stop it.
The panel of doctors who populated Hackett’s computer screen during that December 2020 Zoom call were all volunteers with an organization called thesecondopinion, based in San Francisco.
The group, organized in 1969, currently offers free second opinions to at least three California patients with cancer each week. Patients meet for an average of 30-40 minutes — though there is really no limit — with a panel of doctors who have expertise in their specific case.
More than 70 cancer-related specialists, both current and retired, make up the roster of volunteers. A paid staffer rounds up a patient’s medical records, imaging and pathology slides. And a team of four to five doctors spends a week reviewing each case.
Then they meet directly with the patient and their doctor to answer questions and deliver their consensus.
Hackett was in disbelief after her meeting with thesecondopinion. Her diagnosis had gone from bad to worse, but the new information had changed her life. Without it, she would have surely continued chemotherapy and died.
On top of the new acccurate diagnosis, Hackett said it was a relief and reassurance when the team of volunteer doctors honored and included her oncologist. “I’m a nurse,” she said, and so she knows through experience that medicine comes with egos and frequent risk of lawsuits. But the team from thesecondopinion never criticized her doctor — after all it wasn’t his mistake anyway — nor did they suggest legal action. Instead, they immediately included him as part of the team and sent him a letter detailing the panel concensus, she said, which made her feel safe.
Second Opinions Are Big Business
Medical second opinions are a large and growing industry projected to be worth more than $9.7 billion by 2027. There are already many services across the United States and worldwide devoted to providing second opinions specifically for patients with cancer.
“And rightly so,” says Alan Venook, MD, a professor of medicine at UCSF with experience and expertise in gastrointestinal malignancies who was approached for comment but is not associated with thesecondopinion. Cancer is an increasingly a sub-specialized area, and every patient should get a second opinion, he told Medscape Medical News.
What is unique to an appointment with thesecondopinion, however, is the price tag — $0.
By comparison, a virtual second opinion at the Cleveland Clinic comes at a flat rate of $1850, and at the Dana-Farber Cancer Institute in Boston, the cost is $2400.
At UCSF, a second opinion from Venook and his colleagues will cost patients a couple thousand dollars out-of-pocket, he said. “Many patients don’t have the luxury of paying for a second opinion,” he said.
More Than Looking for Misdiagnosis
Research shows that getting a second opinion can significantly change the course of a patient’s disease and treatment. A 2017 study by the Mayo Clinic found that at their institution, around 22% of second opinions changed the diagnosis and66% of patients received a refined or redefined diagnosis.
However, a misdiagnosis — such the case presented by Hackett — is a rare occurrence at thesecondopinion, said Howard Kleckner, MD, a medical oncologist and the organization’s medical director.
“We aren’t in the business to look for mistakes,” he said.
More often, thesecondopinion panels are about clarifying, and helping patients understand the disease and options they have.”People with cancer need to make a peace with it and make peace with the treatment,” Kleckner said.
He estimates that 90% of the patients that come to the group already have the right diagnosis and treatment plan because, he says, there are “very good doctors in the state and in the Bay Area, in particular.”
And even in the case of the remaining 10% of patients whose second opinion differs from their first, it’s largely a case of differences in the staging the disease or treatment options, Kleckner said.
“We aren’t coming up with brilliant suggestions. Often we are agreeing with what’s already been said,” said David Lakes, MD, a retired medical oncologist who has been volunteering with thesecondopinion for more than 30 years. “But we often see people understand for the first time.”
Both Kleckner and Lakes say that the organization attracts a certain kind of doctor, who tends to be an excellent communicator and really cares about helping the patients.
Many of these doctors are retired, but they want to keep doing the work, and they understand which pieces of information are most important for patients to know, Kleckner told Medscape Medical News. They are also willing to do this kind of work even when they won’t get paid, Kleckner said.
Part of that comes with gray hair and storied careers, Lakes added. “Retired people have experience and judgment and communication skills that a lot of younger doctors don’t have,” he commented. They often have more experience with some of the tough stuff, like exploring the goals of treatment, discontinuing treatment and end-of-life care, and they also have more time to engage patients on their emotional health, he said.
Venook said that the services provided free-of-charge by these volunteers is “laudable,” and their thorough review of all the diagnostic information is “to their credit.” But he questions whether every second opinion provided by the organization is an expert one, since the doctors are no longer practicing. Oncology is a particularly fast-moving field, with many new developments and novel drugs launched in recent years.
“Second opinions are incredibly helpful, but has to be by a knowledgeable expert who gets all the details and gives it serious thought,” Venook said.
Lakes says that he is constantly evaluating whether he is entitled to keep offering second opinions when he isn’t practicing; so far the answer remains a yes. Although he now has to spend more time researching treatment options like biologics, he still feels adept at engaging with patients and helping patients understand where they are in their illness and the potential benefits of fourth- or fifth- line treatments.
Another strength of thesecondopinion model lies in numbers. Most of the time second opinions are given by one doctor, Kleckner pointed out. In contrast, thesecondopinion provides the patient with access to a whole team of specialists.
“Sometimes people on the panels don’t completely agree,” Lakes said. So, before meeting with the patient on Zoom, the doctors review the case together for about half an hour and come up with a consensus. This way there’s no mixed messaging and as little anxiety for the patient as possible, he said.
The fact that patients have direct access to the panel of experts who review their cases is unique in itself, Kleckner said.
Many hospitals have tumor boards, but they are reserved for physicians, he pointed out. Patients get to hear the board’s opinion second-hand through their primary doctor or oncologist.
But at thesecondopinion, the patient gets to engage with the doctors directly. There is time to review up to four questions that the patient has submitted before the meeting, and also time for any additional questions that may have arisen during the course of the meeting.
In oncology, and medicine in general, patients are often shuffled from one specialist to another, Lakes said. But often, there is no one who takes a steps back to see the whole picture.
That’s part of what thesecondopinion offers, he said. “We have the time, the experience and no skin in the game. Wecan think about [the cases] in an intellectual way without feeling like we are in the hot seat or in charge.”
Thanks to her second opinion, Hackett was able to get connected with an oncologist in San Francisco who specializes in the type of cancer she actually had. She went on to receive nine rounds of a monoclonal antibody treatment formulated for her specific cancer. She is now in remission 6 months after finishing that therapy.
Scans in late July showed that she was cancer-free and doing really well. “I’m so grateful to them. I’m so impressed with thesecondopinion, I can’t believe it,” she told Medscape Medical News. “I’m alive because of them.”
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