Written By Robin Warshaw, Contributing Writer
Support group members meet at the cancer center near Kristeen’s home in Auburn, Alabama to listen to each other and understand. At those sessions, “you get to put your problems on hold and deal with other people’s problems,” says Kristeen, who was 31 and had a toddler son when diagnosed with breast cancer two years ago.
Still, she has trouble connecting with group members sometimes because, unlike her, most are older with grown children, well-established careers and some financial stability.
“I wanted to see young breast cancer patients. I never really met anyone else…going through the same issues,” she says. The only young adult group she could find in Alabama was in Birmingham, 110 miles away.
When Kristeen learned about Living Beyond Breast Cancer’s Young Advocate Program, she applied. The program trains women to reach out to their communities. Kristeen signed up because she wanted to bring more breast cancer education to young people. “We have very different problems than other survivors,” she says.
Delay, Then Challenges
Kristeen was breastfeeding when she noticed blood in her milk. Lactation counselors and doctors treated her for what they thought was an infection. She was given antibiotics. A mammogram showed a mass, which the breast surgeon thought was an area of deep infection from breastfeeding. He put in a tube to drain it but found a tumor. It was stage IIIB, estrogen-receptor positive breast cancer.
Two weeks later, Kristeen chose to have a double mastectomy because she had large breasts and wanted smaller ones. The surgeon also said it would be easier to match two new breasts than reconstruct one to match the other. Kristeen later decided to have her uterus and ovaries removed to reduce estrogen and lower her risk of recurrence.
With a college degree in social science, Kristeen hadn’t been working since her son’s birth. Before that, she had been a restaurant manager. The small savings she and her husband had was used up by doctors’ visits before her breast cancer diagnosis. She had no health insurance.
She called her local hospital and was told about a program it had for underserved women. The program paid her mammogram and biopsy costs, and Medicaid covered the rest of her treatment bills.
“Medicaid is a blessing and a curse,” she says, with a sigh. “It covered everything, but right now I can’t get a job or my husband can’t make too much more money because I won’t qualify for benefits anymore.” Medicaid covers her medical care and on-going therapy with an aromatase inhibitor and will cover her reconstruction.
Kristeen thinks about going back to work, but she doesn’t want another restaurant management position due to the physical demands and lack of adequate insurance coverage, and because it’s not her field. “For me to get a job, it has to be a great career path job with great benefits,” she says.
Graduate school might improve her prospects, but lingering side effects cause her to worry about making long-range plans. “You don’t know the next time you’re gonna get sick and have to put everything on hold,” she says.
Training as a Young Advocate
At the Young Advocate sessions, Kristeen connected with people like herself. “With the economic downturn, a lot of us are without jobs. Access to healthcare is very important for our generation,” she says.
The program helped her learn that advocacy can mean taking small, personal steps within her community, such as giving people information about breast cancer or connecting them to resources. Kristeen came away from the program feeling supported, with new friendships.
Kristeen started talking to more people in doctors’ offices, throughout her community and by phone. She shares her experiences and distributes helpful information at local events. She enjoys advocacy so much that she hopes to become a cancer survivorship counselor at a hospital.
Kristeen’s mother and aunt took turns living with the young family during her treatment. Her sister helped on weekends, and cousins who had been out of touch stepped forward.
Still, she worries about how her treatment might have affected her son. “My whole life before I got breast cancer was him,” she says. “I breastfed exclusively. I was home with him. We played together, went to the park together. Then I got sick and it took me away from him.”
Married only for about two years at diagnosis, she gave her husband a way out. “Right after I had surgery, I asked him, ‘Do you want to leave? Because you didn’t sign on for all of this.’”
“And he said, ‘Yes, I did sign on for it.’”
Despite working nights, he took her to her treatment sessions and sat with her through each one. “He’s been awesome,” she says.
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.