Second Opinions, Advocates Crucial to Cancer Care
A patient discusses the struggle of receiving treatment for triple negative breast cancer in a rural community.
“Get a second opinion no matter what,” breast cancer survivor Nancy Brier, 53, told Specialty Pharmacy Times of her diagnosis. “Question everything and rely on your instincts.”
This piece of advice, along with the support from her husband, saved Brier’s life. When Brier’s husband discovered a lump in her breast, she immediately knew something was wrong.
“My husband found the lump and the very next morning I went into the doctor,” Brier said. “The doctor said ‘don’t worry about it, it doesn’t meet the criteria for cancer.’ This lump was rock hard. It was the size of an almond and it was right on the surface of the skin. It was unmistakable.”
At the time, Brier and her family were living in Upper Lake, CA, a small community surrounded by orchards and vineyards. Both Brier and her husband are entrepreneurs who have had businesses ranging from a flight school to a walnut orchard.
When Brier made the initial appointment with a physician at the rural hospital, what she felt were clear symptoms of breast cancer were overlooked and deemed nothing to worry about. She suspects that the rural healthcare system and the hospital relying on visiting physicians played a part in the inadequate care.
“I really do think she should have recommended a mammogram and insisted on that appointment with some urgency, but she didn’t,” Brier said.
Instead of trusting the physician’s opinion, Brier decided to take matters into her own hands.
“It just didn’t seem right to me, so I had to trust my instincts and say I’m not going to let this go, I’m going to get a mammogram,” she told SPT. “Besides that, I was approaching my 50th birthday and I had never had one.”
However, since the physician did not order the test, Brier had to wait a month before receiving a diagnosis of triple negative breast cancer, the most aggressive subtype of the disease, on New Years Eve 2013.
While a cancer diagnosis on its own can be overwhelming, the very next day, the Brier family’s health insurance was cancelled as a result of the Affordable Care Act.
“For me, my disease is kind of inseparable from politics. I had insurance the day before I got diagnosed, and I did not have health insurance the next day. It was a disaster. It changed everything,” she said. “The whole trajectory of my experience changed because my insurance got cancelled.”
Due to the rural community she was living in and her health plan being cancelled, Brier faced significant struggles to receiving care. She told SPT that nearby physicians were either unable or unwilling to treat her, and one even told her that she would not be able to afford treatment.
During an appointment with a surgeon, Brier was urged to undergo a mastectomy.
“The surgeon wanted to do it the very next morning,” Brier said.
However, the Briers had done substantial research about the procedure, and felt it was not the right treatment option.
Eventually, through her husband’s persistence, Brier was able to receive treatment at the Stanford Cancer Center. During testing, it was revealed that the cancer had metastasized to the lymph nodes and sternum. Brier told SPT that if she had stayed in the rural health care system, she does not believe the physicians would have identified the metastases.
The Stanford physicians prescribed 16 weeks of taxotere, adriamycin and cyclophosphamide. During the taxotere portion of chemotherapy, Brier experienced weight loss and fatigue, while she experienced significant swelling and neuropathy from adriamycin and cyclophosphamide. Brier pushed through chemotherapy and went on to receive surgery and radiation.
Despite experiencing side effects, Brier said the hardest part of chemotherapy was leaving her 9-year-old child to receive treatment. Since Stanford was a 3 to 4 hour drive each way, Brier and her husband would spend 2 to 3 nights per week in a hotel. Since Brier and her husband are self-employed, their family was accustomed to being home together, which made leaving for days at a time especially difficult.
“That separation was just brutal. Every time I had to leave, it was sort of… I felt like it was a dry rehearsal for what it would be like if I was dead and I didn’t live in that house anymore — that was what that existence was going to be like for my little one. That was really hard,” she told SPT.
Once the chemotherapy and surgery portions of treatment was over, Brier moved to the University of California, San Francisco (UCSF) where she received a nipple-saving lumpectomy and 6 weeks of radiation. At UCSF, it was confirmed that a mastectomy would have caused Brier to unnecessarily lose a breast, as the lumpectomy was effective.
Since radiation is typically administered in short, frequent doses, Brier and her husband moved closer to the university, as driving hours each day was impossible.
Brier is currently out of active treatment, but cannot be declared cancer free until 2019. Until then, she is in the breast cancer surviviorship care program at USCF where she receives rigorous screenings every 6 months. Unlike other cancers, if triple negative breast cancer does not come back within 5 years, it is improbable that it ever will.
“It’s kind of a good news, bad news diagnosis,” Brier said. “It’s not like other cancers. If I can get through these 5 years, then I’m sort of out of the woods.”
Brier believes that it was her husband’s love and support that got her through every bump in the road, including telling their daughter of her diagnosis.
“He saved my life because of his tenacity with the red tape and the insurance debacle. He did not give up,” Brier said. “He made so many phone calls and he accompanied me to every single appointment. I wouldn’t have survived either physically or emotionally without him.”
For other women diagnosed with breast cancer, Brier suggests having an advocate, whether it be a family member — like in her case – or hiring someone who will help navigate through the process.
“In my case, I’m so lucky I had my husband, but everyone needs one. That person needs to be smart and organized. Even if you have to hire someone, hire someone. It’s a life and death thing. You have to have an advocate because you can’t do it on your own,” Brier said.
For more information about Brier’s experience with cancer, visit www.BreastCancer-News.com where she writes a weekly column called “A Lump in the Road.”