When Mari Brick was diagnosed with breast cancer at age 48, she did all the “right” things as a proactive health care consumer and her body responded.
The cancer was spotted because she diligently kept up with her annual mammograms. Within days of her diagnosis, she had a team in place that included her oncologist, a surgeon, a radiology oncologist, a pharmacist, and a nurse navigator to guide her through the process.
Brick, now 50, followed the decided-upon protocol faithfully: chemotherapy first, then surgery, then radiation. She took the breast cancer drug Herceptin for a year, both during chemotherapy and afterwards.
Then, her lumpectomy found no cancer within the tissue sample. Her body had had a complete response to the treatment. From her doctors’ perspectives, she had beaten cancer and should have been jubilant. But emotionally, she struggled during treatment, which ended in 2017, and in the years since.
Brick, who is a public health consultant based outside of Albany, N.Y., said she thinks about her cancer nearly every day. The possibility of a recurrence continues to weigh heavily on her.
“I was an easy patient,” she said. “I showed up for all the appointments, I did what I was supposed to do and I had a good response. My doctors probably just think I can take this all in stride.”
But she realized that this was easier said than done.
Complicated Emotions Surfaced Later
While Brick was happy with her medical care, not enough attention was paid to her emotional needs both during treatment and after.
Brick was assigned a nurse navigator to help her through the treatment process, and she said that person should have paid more attention to her mental health needs. Brick felt the nurse was “sympathetic, not empathetic” and that bothered her.
“She used a tone of ‘poor thing,’” Brick said. “I didn’t want her feeling sorry for me, so I decided I would just do it on my own.”
During treatment, Brick asked her doctor about support groups, but was told they’re mostly for those in remission or survivors—not for patients undergoing treatment. Brick never saw a psychologist, a therapist or a social worker, despite having a large team working on her case. Brick said it would have been helpful to have a therapist on the team too, evaluating that aspect of her care.
Even though her treatment is over, Brick still feels challenged.
“The further out I get from it, the more there are complicated emotions,” she said.
She has set automated alerts from different medical journals to update her on the latest breast cancer research and studies, but they often worry her, sending her to her oncologist to ask questions. Despite her anxiety, her doctor often tells her to be as proactive as she can and then “live her life” without worry.
“That’s easier said than done,” she said.
Independence Can be Misleading
Brick says her teenage daughter and her husband—who were extremely supportive during her illness— don’t talk much about her cancer experience, now that she is considered cured. For them, life has returned to normal, but Brick says she hasn’t been able to completely move on.
She worries about a recurrence and feels survivor’s guilt in relation to some of the people she met during treatment who didn’t have successful outcomes. During that time “I almost felt guilty telling them that what was going on with me was smooth sailing, because it wasn’t for them,” she said.
Brick has made it a point to support people in her life who have been diagnosed with cancer or have family members who have been diagnosed, to provide information and emotional encouragement. She’s considering seeking out a support group.
But if she goes, Brick said she feels like her doctor will view it as one more way she has been able to manage her emotional distress on her own, instead of offering assistance.
“She’ll just see me as independent, that I can manage all of this,” Brick said. “But she should see it as, ‘Maybe I should have offered more support in that way.’”
Credit: CDC
Watch her video here: youtube.com/watch?v=K0YBk0Hhoio
