Although my health-care team did a great job of preparing me for the physical ramifications of treatment, they didn’t explain the devastating financial and mental health repercussions I might suffer.
It’s not clear to me—and my doctors can’t say with any certainty—whether taking birth control pills for many years had anything to do with my getting breast cancer 3 years ago, at age 44. But the cancer growing in my left breast was diagnosed as stage I, estrogen receptor–positive. Although I never felt a lump in that breast, when I noticed that the nipple had inverted I knew something was terribly wrong.
After the diagnosis, my oncologist recommended that I have a complete mastectomy, but the thought of losing my whole breast was too scary for me to contemplate, and I asked for a lumpectomy instead. After two lumpectomies failed to provide clear tissue margins, my only recourse was to go ahead with the mastectomy.
Before I had the surgery, I underwent 3 months of combination chemotherapy—I can’t remember the drug regimen—plus 6 weeks of daily radiation therapy to reduce the size of the tumor. Unfortunately, the treatment not only failed to accomplish its goal, it left me so sick and anxious, I was sure it would kill me long before the cancer.
Burden of Cancer
When I was first diagnosed, I thought this cannot be happening to me, I don’t have time to have cancer. I just wanted to hurry up with the treatment and get back to work and to my life. Although my health-care team did a great job of preparing me for the physical ramifications of treatment, they didn’t explain the devastating financial and mental health repercussions I might suffer in the aftermath of the disease.
Because I couldn’t work during my treatments—my blood counts were so low I had to have two blood transfusions, and I was very weak and nauseous—I lost my health insurance. I had to use my life savings to pay medical bills and cover day-to-day living expenses.
Although my prognosis once treatment was completed was good, the fear of a cancer recurrence coupled with anxiety over my financial well-being overwhelmed me to the point of complete collapse, and I had to be hospitalized for depression. I’m still on antidepressants, but the fear of a recurrence is with me all the time, although it has lessened over the years.
Getting a cancer diagnosis and a treatment plan was just the first step on the road to my recovery. The piece I was missing in the beginning was how to cope with the mental anguish I would suffer. I understand that when people hear they have cancer, their first thought is, “Am I going to die?” and all the effort is placed on saving the person’s life. But patients need to have the whole picture of what could possibly happen to them right from the start. It’s not enough to have only half the story.
Rebuilding a Life after Cancer
I wish my oncology team had given me educational material about breast cancer that included information on both the physical and mental aspects of what I could expect and where to find help. It wasn’t until after my surgery and recovery that I realized the depths of my sadness over the loss of my breast and how it is impacting my life even now. I’m a single mom, and the reality of my altered body has made dating very difficult.
It’s not just my social life that’s been stalled. I’m so worried and nervous about a cancer recurrence and what it would mean to me financially, I have a difficult time concentrating on my work as a phlebotomy technician. I find myself obsessively checking and double-checking my lab work and questioning my ability to perform even the most routine tasks—something I never did before my cancer diagnosis.
Being in a breast cancer support group is helping me cope, and I am getting counseling, which is restoring my sense of optimism for the future. It’s difficult, but I am trying to be more positive, put my cancer behind me, and move on. ■
Tracey Aiello lives in Cranston, Rhode Island.