As a breast cancer researcher, Dr. Julie Palmer never imagined her sister, Beth, would be diagnosed with the disease. After being diagnosed with early-stage, estrogen receptor-positive breast cancer in her late 40s, Beth underwent a double mastectomy and moved on with her life. Nine years later, Beth learned the cancer had metastasized to her bones and lungs.
“When someone gets that diagnosis – metastatic breast cancer (MBC) – it means it cannot be cured, but your goal is to live a good life for as long as you can,” Dr. Palmer said. “It has changed so much over time. People are living longer and longer. My sister lived nine years after that diagnosis of metastatic breast cancer. Those years were so precious, and until the very end, my sister lived a completely full life.”
As a career lawyer and judge, Beth also played bridge internationally and traveled the world competing in tournaments. She won seven world and 25 national championships, claiming multiple titles while in treatment for MBC.
“She had infusions of regular chemotherapy and infusions to make the bones stronger. The oncologist was able to organize them so that she could travel,” Dr. Palmer said. “It brought to me, as a researcher, a very different point of view. When you’re in that experience with someone you love, then every study you’re doing or questionnaire you’re developing raises something different that you want to ask.”
Dr. Palmer also saw firsthand the financial burden of seemingly endless medical bills as her sister navigated through treatment for MBC.
“Every time I visited my sister, I would see a dining room table covered with papers, bills and insurance forms,” Dr. Palmer said. “My sister was someone who had a decent insurance plan from the federal government. Nevertheless, insurance doesn’t cover everything. You get bills from so many different people – not just the hospital, but the anesthesiologist and the surgeon. It’s a huge burden to keep up with, and it’s a burden to pay all those extra costs.”
Insurance issues, such as what to do if a claim is denied, can be a major concern for people living with MBC. Paying for medications and other out-of-pocket expenses can also be a burden. Insurance and financial assistance programs can help support people living with MBC.
When Beth was diagnosed with MBC, Dr. Palmer became her patient navigator and helped guide her sister through the various options for treatment and managing pain.
“I could help her interpret the recommendations she was getting, what the treatments would be like and the side effects,” Dr. Palmer said. “When she went for her first chemo, and she called me and said, ‘I feel so nauseous,’ I could say, ‘Well, this is when you need to call the nurse. This is what they’re there for. They want to hear from you because your next infusion can be different.’ People don’t know that.”
Komen Patient navigators can help guide those living with MBC through the health care system as they go through treatment. Patient navigators can help to remove barriers to high-quality breast care by assisting with insurance, accessing local resources and helping patients better communicate with health care providers. Komen’s on-staff patient navigators are available to assist people across the country.
“Patient navigation programs, which Komen was instrumental in first developing, still need to be much more widespread than they are,” Dr. Palmer said. “It’s made me aware of how important patient navigation is.”
In the three years since her sister’s passing, Dr. Palmer said spending time with Beth’s daughter, her niece and godchild, has helped her cope with the loss.
“When I talk with her on the phone, it’s not the same, but it brings a lot of that joy. It helps me not miss that relationship I had with my sister so much,” Dr. Palmer said.
“For anyone who has breast cancer, including metastatic breast cancer, I would say it’s a really hard thing, and the people who love you are really there to help,” she continued. “I would say let them help because you deserve it. We’re all people who care about other people, and other people want to care about us.”
Call the Komen Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636) or email email@example.com to be connected with caring and compassionate support and information about breast health and breast cancer, connections to Komen patient navigators, emotional support, financial support, information about clinical trials, and referrals to national and local community resources.
Statements and opinions expressed are that of the individual and do not express the views or opinions of Susan G. Komen. This information is being provided for educational purposes only and is not to be construed as medical advice. Persons with breast cancer should consult their healthcare provider with specific questions or concerns about their treatment.