Lynne DeMarsh woke one morning in 2017 with pain and discharge from one nipple. A decade earlier, the Rockledge, FL, resident had had a lumpectomy and radiation therapy for triple-negative breast cancer. But she had been healthy ever since.
DeMarsh quickly visited an oncologist near her home for her new symptoms. Her doctor diagnosed her with inflammatory breast cancer, a fast-moving disease that’s usually caught in late stages. But her doctor’s next comment left her just as shaken as her diagnosis did.
“He said, ‘Get your affairs in order because you will probably only live a couple years,’” DeMarsh, 56, recalls. “He also told me I could never have [breast] reconstruction. I just couldn’t believe it when I left there.”
DeMarsh decided to see a second doctor.
Consulting a different doctor doesn’t have to mean that you’re second-guessing your first one. Another opinion can be reasonable part of your treatment process, says Lidia Schapira, MD, an oncologist and associate professor of medicine at Stanford University Medical Center.
For one thing, your regular doctor may not be very familiar with your type of cancer. Or you might be interested in a new or alternate therapy that your doctor doesn’t offer or recommend.
Sometimes, discussing your treatment choices with a second expert may lead to reexamining the evidence to confirm the original diagnosis, Schapira says. Your first doctor may even join efforts with your new doctor if that person is a leading authority on your type of cancer or therapy.
DeMarsh got a referral to another oncologist from a friend who worked at an Orlando hospital.
Among other things, DeMarsh’s new doctor said she could get breast reconstruction, which the first oncologist had ruled out.
How and When to Get a Second Opinion
As with any situation, it’s best to use some tact when you break the news to your first doctor.
“If you tell the doctor, ‘I’m going to see your colleague,’ it’s not the best way to start a … relationship,” Schapira says.
Instead of just canceling appointments, for example, you might let your doctor know if something about the consultation or treatment prompted your exit.
Timing matters. Switching doctors can be tricky if you’ve already started your treatment. But even if you’re halfway through your therapy, you may have good reasons to want to try something else or just take a pause if you have a long-term illness like cancer.
Schapira says in such cases, most oncologists are quick to try or at least accept new approaches. But when swift treatment is needed, shopping around too long may harm your health.
The doctors “want to get it right, and they realize they have one chance to get the cancer treated properly,” Schapira says. “Sometimes people may seek many opinions because they’re paralyzed. They may not understand or believe that there’s a sense of urgency.”
Sometimes, your health insurance policy or a relocation may prompt you to rethink your cancer care or your treatment team. Trust is a big factor, too. “The issue of the gap in trust between the public and physicians in general is real,” Schapira says. “Trust is important, but people have difficulty establishing it.”
DeMarsh says driving a couple of hours farther to her second oncologist was worth the better shot at beating her cancer. The following year, DeMarsh noticed that the wound from her double mastectomy didn’t heal. Her surgeon believed the hardness in DeMarsh’s chest was probably undissolved stitches and didn’t require immediate treatment.
Later, DeMarsh’s oncologist ran tests that found cancer in the wound.
“So then the plan changed for me to include seeing a radiation doctor,” she says. “I knew this was bad because I’ve always heard you don’t want to do radiation twice.”
Once again, DeMarsh sought a second opinion. She checked with two larger cancer centers, the Cancer Treatment Centers of America near Atlanta and the Mayo Clinic in Jacksonville, FL. Right away, DeMarsh was presented with different and more treatment options.
“They asked if I had gotten a biopsy test with something called FoundationOne,” a test that creates a rundown of your gene types, which can help zero in on treatments that might work. A genomic profile also can gauge if your body might respond to an alternate course, such as immunotherapy, which uses your own immune system to fight cancer. It boosts your natural defenses using organic substances.
“They opened my eyes to a complete integrative medical approach,” DeMarsh says.
Before you decide to consult a second doctor, it’s a good idea to check with your insurance plan to ask if the visit will be reimbursed. Also find out how your coverage applies to care for rare conditions or treatments that may be considered experimental.
DeMarsh has a good health insurance policy. But she still spends about $7,000 out of pocket every year. Her medications and injections costs about $50,000 a month. Most of that is covered by her insurer and the drugmakers’ copay assistance programs.
DeMarsh advises other women who learn that they have breast cancer to trust their instincts. “If something doesn’t sound right, talk to another doctor.”
Lynne DeMarsh, Rockledge, FL.
Lidia Schapira, MD, associate professor of medicine, Stanford University Medical Center.
American Society of Clinical Oncology: “Understanding Immunotherapy.”
National Cancer Institute: “Inflammatory Breast Cancer.”