Oncology doctor urges self advocacy

By KATHLEEN EDGECOMB

In 1992, Claudia Marks, the honorary walk chair for the 17th annual Terri Brodeur Breast Cancer Foundation Walk for a Cure, felt a lump in her breast. Since she was only 42, her doctor recommended a “wait-and-see” approach. But a breast cancer survivor told her not to wait. She insisted on a mammogram and was diagnosed with Stage I breast cancer, which was treated with lumpectomy, chemotherapy, radiation and hormone therapy.

And so began a journey of self advocacy that has helped her survive another bout of breast cancer in 2003 and Stage IV esophageal cancer in 2013.

Marks spoke recently at the Scranton Memorial Library in Madison on the importance of advocating for yourself. She was joined by Dr. Erin Hofstatter, senior medical director at Glaxosmithkline and former co-director of Smilow Cancer Genetics and Prevention Program at Yale. She still sees patients every Friday.

The talk was sponsored and live streamed by TBBCF, and is featured on the TBBCF Facebook page and can be viewed here. Click on the image below.

Marks recommended increasing your knowledge of your disease, including research on the internet — but she warned to only stay on trusted websites, like the National Institute of Health. She said she signs on to all her patient portals to read doctors’ notes and coordinates her treatments, and talks openly about her priorities with her doctors.

She also created a blog and shared her experiences with others.

“It gives you a level of control over your life,” she said.

Marks, who carries the BRCA I gene and has stage IV esophageal cancer gene has volunteered for research trials. One of those trials for esophageal cancer, she believes, has saved her life. It has a 5%, five-year survival rate, so finding a trial became an important goal.

Shortly after her diagnosis, a rainbow appeared over her house, she said. “I took it as a sign everything was going to be ok,” she said.

Marks did her research, and together with her doctors plotted a course to fight the disease.

During chemotherapy treatments she wore a pair of gloves with the word “POW” on the knuckles. She was fighting the cancer with all she had.  She is now nine years past her diagnosis.

She  urged people to create a family medical chart which can show patterns that help doctors with diagnosis and treatment. She recommended genetic testing if a pattern is shown.

Dr. Hofstatter, who received a research grant from the Brodeur Foundation in 2014, reiterated  everything Marks had to say.

“Are your needs being met? Are you in control?” she asked.

Hoffstatter, who is also an adjunct professor at Yale, offered a set of “pearls”  to help patients find their voices, including doing research on trusted websites, asking questions of your medical care team and getting answers .

“You don’t have to do everything your doctor says,” she said. ”Make noise. Be that squeaky wheel. Ask questions.”

Doctors don’t know everything she said, so don’t be afraid to get a second opinion. Most doctors welcome another set of eyes.

And it’s not just the doctors who have the answers, she said. Oncology nurses, nurse practitioners, social workers and nutritionists are all part of the team of professionals who care for cancer patients.

It is important to communicate your goals with your doctor. She said patents have lives that may include family weddings and events, or travel. She said she had a patient with Stage IV cancer who had always wanted to go to the Galapagos Islands. Her treatment plan included time for the patient to take that trip. She shared her pictures of the blue-footed boobies with all the team.

Finally, she said, self-advocacy should be a collaboration and not adversarial.

“You should treat yourself as you would a friend,” she said. “You deserve great care.”

The 17th annual TBBCF walking marathon will take place Oct 1. For details go to https://tbbcf.org/ or visit the Terri Brodeur Breast Cancer Foundation Facebook page.