Lynne DeMarsh woke up one morning in 2017 with pain and discharge from one nipple. Ten years earlier, the Rockledge, FL, resident had undergone a lumpectomy and radiation therapy for triple-negative breast cancer. But since then she has been healthy.
DeMarsh quickly visited an oncologist near her home for her new symptoms. Her doctor diagnosed her with breast cancer, a rapidly evolving disease that is usually discovered at a late stage. But her doctor’s next comment left her as shocked as her diagnosis.
“He said, ‘Take care of your affairs, because you’re probably only going to live a few years,’” DeMarsh, 56, recalled. “He also told me that I could never have done that [breast] reconstruction. I just couldn’t believe it when I left there.”
DeMarsh decided to consult a second doctor.
Consulting another doctor does not necessarily mean that you doubt your first doctor. Another opinion can be a reasonable part of your treatment process, says Lidia Schapira, MD, oncologist and associate professor of medicine at Stanford University Medical Center.
For starters, your regular doctor may not be very familiar with your type of cancer. Or perhaps you are interested in a new or alternative therapy that your doctor does not offer or recommend.
Sometimes discussing your treatment choices with a second expert can lead to the evidence being re-examined to confirm the original diagnosis, Schapira says. Your first doctor may even work 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 a hospital in Orlando.
DeMarsh’s new doctor said, among other things, that she could have breast reconstruction, which the first oncologist had ruled out.
As in any situation, it’s best to use some tact when breaking the news to your first doctor.
“If you say to the doctor, ‘I’m going to see your colleague,’ that’s not the best way to start a… relationship,” says Schapira.
For example, instead of just canceling appointments, you can let your doctor know if something in the consultation or treatment prompted your departure.
Timing is important. If you have already started your treatment, it may be difficult to change doctors. But even if you’re halfway through your therapy, you may have good reasons to try something different or take a break if you have a long-term illness like cancer.
Schapira says that in such cases, most oncologists are quick to try or at least accept new approaches. But if quick treatment is needed, shopping for too long can be harmful to your health.
The doctors “want to do it right, and they realize that they only have one chance to get the cancer treated properly,” says Schapira. ‘Sometimes people are looking for a lot of opinions because they are paralyzed. They may not understand or believe that there is a sense of urgency.”
Sometimes your health insurance or a move can make you reconsider your cancer care or your treatment team. Trust is also a big factor. “The problem of the gap in trust between the public and doctors in general is real,” says Schapira. “Trust is important, but people have trouble establishing it.”
DeMarsh says driving a few hours further to her second oncologist gave her the better chance of beating her cancer. The following year, DeMarsh noticed that the wound from her double mastectomy was not healing. Her surgeon believed that the hardness in DeMarsh’s chest was likely unresolved stitches and that no immediate treatment was needed.
Later, DeMarsh’s oncologist performed tests that showed there was cancer in the wound.
“So then the plan changed for me to see a radiation doctor as well,” she says. “I knew this was bad because I’ve always heard that you don’t want to have to do two rounds of radiation.”
Once again, DeMarsh asked for a second opinion. She contacted two larger cancer centers, the Cancer Treatment Centers of America near Atlanta and the Mayo Clinic in Jacksonville, FL. DeMarsh was immediately presented with several and more treatment options.
“They asked if I had gotten a biopsy test with something called FoundationOne,” a test that provides an overview of your gene types, which can help find treatments that might work. A genomic profile can also gauge whether your body might respond to an alternative treatment, such as immunotherapy, which uses your own immune system to fight cancer. It strengthens your natural defenses with the help of organic substances.
“They opened my eyes to a fully integrated medical approach,” says DeMarsh.
Before you decide to consult a second doctor, it is wise to check with your insurance company whether 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 good health insurance. But she still spends about $7,000 out of pocket every year. Her medications and injections cost about $50,000 a month. Most of that is covered by her insurer and the drugmakers’ copay assistance programs.
DeMarsh advises other women who discover they have breast cancer to trust their instincts. “If something doesn’t sound right, talk to another doctor.”