I discovered I had breast cancer last year after a routine mammogram. I was 50 years old.
It took about a month of biopsies, more mammograms, MRIs, ultrasounds and genetic testing in my suburban Chicago hospital before I was diagnosed with stage I breast cancer. I then had a unilateral mastectomy, followed months later by reconstructive surgery.
I was lucky that my type of cancer responds well to hormone therapy, with no chemotherapy or radiation. Despite my excellent prognosis and low chance of recurrence, my breast cancer almost killed me.
That’s because although my medical team did an excellent job getting rid of the cancer, I was left to my own devices with the surprise bout of depression that took its place.
As frightened as I was during the initial call with my doctor, where she informed me that I had cancer, I had little time to think during the month-long flurry of tests and appointments.
My local hospital’s nurse navigator took my many phone calls, answered my questions and helped me make appointments for everything. She held my hand during a painful biopsy. I had a mastectomy and five months later, a breast reconstruction procedure.
The symptoms I wasn’t expecting started shortly after my breast reconstruction. Before my reconstruction procedure, I was told to plan on two weeks of recovery time. But six weeks later, I was still suffering from pain, swelling in my chest and face, and limited mobility in my shoulder.
The onset of depression
My medication was putting me in menopause, triggering hot flashes, weight gain and sleep disturbances. Insomnia-fueled Googling convinced me that I still had cancer. I cried all the time. I slowly began to realize that I was depressed.
This was not my first bout of depression. I suffered from depression in my 20s and again after the traumatic birth of my first child. The difference was that I had prepared for postpartum depression. Every gynecological and pediatrician’s visit included a depression screener.
No one warned me that having breast cancer and a mastectomy could lead to depression — not my cancer doctors nor the nurse navigator who helped me through the maze of treatment. My depression made me feel guilty and isolated. I assumed that I had failed because I wasn’t sufficiently grateful for my “lucky” stage I diagnosis.
I learned later that post-breast cancer treatment depression is common.
The lasting effects of a mastectomy, the post-surgical maintenance drugs and fear of recurrence can all lead to depression, according to Tasha Chasson, an oncology support counselor for Wellness House, a cancer support center located in Hinsdale, Illinois.
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Many women find themselves in “survival mode” during treatment and only have time to consider their emotions when treatment is over, Chasson said.
Cancer patients can feel worse when they compare themselves to people with different diagnoses and prognoses, according to Kelley Kitley, a Chicago-based psychotherapist and women’s mental health expert.
Support is key
Luckily, I had scheduled an appointment to meet with my general practitioner to discuss my sleep issues. Having known me for 15 years, she was concerned about my inability to answer simple health questions without crying. She was the only person on my medical team to ever say that I might need help, suggesting I find a support group for cancer survivors.
Unfortunately, the only local support group for breast cancer patients met in the middle of the day, not accessible for someone still working. Evening support groups are frequently in high demand as many cancer patients are still working, and support group providers can struggle to find appropriate facilitators and space to meet, Chasson said.
Because of the complexities of the US health care and insurance system, Kitley said that many patients have difficulty finding appropriate mental health resources without the help of a trained professional.
That was true for me, at first. Despite multiple calls to my breast center and the nurse navigator, I was unable to get any guidance on finding a cancer-informed therapist.
After a couple months of asking for but not receiving help I was still depressed. That’s when I realized that if I wanted to feel better, I would need to take charge. And so I did, joining an online support group for breast cancer patients and several Facebook groups for survivors. Through the support group I was finally given the name of a cancer-informed therapist.
Because of my therapist and my online support groups, I came to see that my post-cancer depression was not unusual or my fault. Today, almost a year after my reconstruction, I still have bad days, but I no longer suffer from the overwhelming, life-threatening depression.
Recognizing emotional toll
Not everyone is so lucky. Breast cancer survivors, a 2018 study suggested, are 37% more likely to commit suicide than women in the general population. Moreover, women with metastatic breast cancer who are also depressed die sooner than those who have their depression treated, a 2011 study showed.
It’s important that cancer patients not minimize depression symptoms, such as feeling hopeless, crying frequently, loss of appetite, interrupted sleep or sleeping too much, or lack of motivation, Kitley said.
While looking for a therapist, cancer patients should “keep a journal to track how you’re feeling day to day, and make a commitment to moving your body daily to help get you out of your head,” she said.
Although I was angry that my medical team failed to screen and treat me for depression, my situation wasn’t unique. From my various support groups, I’ve learned that women all over the country suffer from both the failure of treatment providers to focus on the emotional toll that cancer and a mastectomy can take and limited access to mental health services after treatment.
Doctors and patients can use the National Comprehensive Cancer Network’s “distress thermometer” that the nonprofit makes available to both individuals and medical offices. The tool is available in over 40 languages and has been downloaded by over 13,000 people in the past year.
In the end, I was lucky — not just in my diagnosis, but in my ability to find a way out of my most severe depression.
Breast cancer and mastectomies come with many possible physical and emotional side effects. Patients deserve to be warned about the possibility of depression both during and after treatment, and to be offered robust, easy-to-access help when they experience cancer-related depression. It is literally a matter of life and death.
For information on depression during and after breast cancer treatment, check out the American Cancer Society, the Cancer Support Community (also known as Gilda’s Club), the Cancer Hope Network and the National Comprehensive Cancer Network.