Written By Robin Warshaw, Contributing Writer
Now, 4 years later, Melody is finishing her master’s degree in social work with an interest in oncological social work. She has interned in a medical clinic for underserved populations and in a hospice, and she looks forward to her new career.
“I realized now is the time to do what I’m passionate about and make something of my life,” Melody says. “I don’t have time to wait.”
Delay to Diagnosis
The cough developed after a winter cold. As she coughed deeply, Melody held onto her chest. She felt a lump.
“I thought, ‘This is different than anything I ever felt before,’” she says. “I didn’t have a family history of breast cancer, so it wasn’t on my radar.”
Her gynecologist assured her that she probably just had fibrocystic or “lumpy” breasts, which are common in young women. “It comforted me at the time,” she says.
He told Melody to return in a month, when he checked her once more and told her the same thing. But Melody didn’t want to ignore the lump again, so he ordered a mammogram and ultrasound. The tests were scheduled for a month ahead.
After testing was finally completed, Melody was diagnosed with stage IIIc breast cancer. “I was completely overwhelmed,” she says. She began making plans for surgery in her local area, a small town in Pennsylvania’s former coal-mining region.
Because Melody lives more than two hours from any major medical facility, her brother, who is studying biology, urged her to leave the area to get more sophisticated treatment. Her HMO covered treatment at Johns Hopkins in Baltimore, about 150 miles away. After surgery, a doctor at Johns Hopkins advised her to participate in achemotherapy clinical trial. He suggested a trial that he thought would benefit her.
Melody researched the trial online and talked about it with her oncologist, who agreed that she should participate. Before enrolling, Melody asked questions about possible benefits and side effects. After she began participating, she called the trial’s principal investigator (lead researcher) to discuss side effects she was experiencing.
“I take things into my own hands. I believe we are advocates for our own healthcare,” Melody says.
She received chemotherapy near her home, following the protocol used in the clinical trial. Radiation came next. Because her health insurance coverage had changed since she was diagnosed, Melody was able to see a plastic surgeon in Philadelphia, a little closer (about 100 miles) to home. She had reconstruction followed by surgeries to shape the breast and create the nipple. She’s happy with the results.
In addition to deciding on a career change to social work, Melody became involved in advocacy for others during her treatment. She went to C4YW, a conference specifically for women diagnosed with breast cancer under the age of 45, and met women who also had young children. “That’s when I made some of my greatest friends today,” she says.
She wants to start a local YSC Face 2 Face (F2F) network in her area so local young women can find support. There are few nearby groups, she says, and most of the women participating are much older. “The issues are so different that it’s difficult.”
Melody also attended the LBBC Annual Fall Conference shortly after her reconstruction. “I wasn’t sure I could go, but it helped me get through,” she says. “I like to hear about the research.”
Later, she received training from Project LEAD, a program of the National Breast Cancer Coalition (NBCC). She learned about the biology of breast cancer, research advances and advocacy issues and methods. Now, as an NBCC-certified consumer advocate, Melody gives speeches to organizations in her area as well as in Washington, D.C.
She also was one of several women whose stories appeared in a traveling display sponsored by Blue Cross of Northeastern Pennsylvania and in newspaper articles. “It gave me an opportunity to get my story out there for greater advocacy and awareness,” Melody says.
Advocating is “what draws me into social work,” she says. Sparked by her own experience, she will continue her commitment to supporting other women diagnosed with breast cancer.
This article was supported by Cooperative Agreement Number DP11-1111 from The Centers for Disease Control and Prevention. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.