I was diagnosed with stage 1 breast cancer before it took about a month at my suburban Chicago hospital for a biopsy, further mammogram, MRI, ultrasound and genetic testing. I then had a unilateral mastectomy, followed by reconstructive surgery months later.
I was lucky that my type of cancer responds well to hormone therapy without any chemotherapy or radiation. Despite my excellent guesswork and low chance of recurrence, I was almost killed by my breast cancer.
That’s because my medical team did an excellent job of getting rid of the cancer, however, I was left on my own devices with the surprise of depression, which took its place.
It was during my initial work with my doctor that he panicked, where he informed me that I had cancer, and during the months of tests and appointments, I had some time to think.
The nurse navigator at my local hospital took many of my phone calls, answered my questions and helped me make appointments for everything. He grabbed my hand during the painful biopsy. I had a mastectomy and five months later, a breast reconstruction procedure.
The symptoms that I did not expect started soon after my breast reconstruction. Prior to my reconstruction process, I was asked to plan a two week recovery period. But six weeks later, I was still in excruciating pain, with swelling on my chest and face and limited mobility in my shoulders.
The onset of depression
My medication was putting me into menopause, stimulating hot flashes, weight gain and sleep disturbances. Inflammation from insomnia Googling assured me that I still have cancer. I cried all the time. I slowly began to realize that I was indifferent.
This was not my first time of frustration. I suffered from depression in my 20s and again after the tragic birth of my first child. The difference was that I was preparing for postpartum depression. Depression screener is included in every gynecologist and pediatrician visit.
No one warned me that having breast cancer and a mastectomy could lead to depression – my cancer doctors or nurse navigators who did not help me along the way. My frustration made me feel guilty and lonely. I assumed I failed because I wasn’t thankful enough for the diagnosis for my “lucky” stage.
I found out later that depression is common in the treatment of post-breast cancer.
Many women find themselves in “survival mode” during treatment and have time to consider their feelings when treatment is completed, Chase said.
According to Kelly Kettley, a Chicago-based psychiatrist and women’s mental health specialist, cancer patients feel worse when they compare themselves to people with different diagnoses and progressions.
Support is key
Luckily, I made an appointment to meet with my general practitioner to discuss my sleep problems. After knowing me for 15 years, she was worried about my inability to answer simple health questions without crying. She was the only person on my medical team who ever said I needed help, suggesting I could find a support group for cancer survivors.
Unfortunately, the only local support group for breast cancer patients, found in the middle, is not accessible to those who are still functioning. Evening support groups are often in demand because many cancer patients are still working, and support group providers may struggle to find the right facilities and a place to meet, Change said.
Because of the difficulties in the U.S. health care and insurance system, Kitley said many patients have difficulty finding the right mental health resources without the help of a trained professional.
That was already true for me. Despite numerous calls to my breast center and nurse navigator, I could find no guidance in finding a cancer-aware physician.
I was frustrated even after a few months of not getting help. That’s when I realized that if I wanted to feel good, I would need to take charge. And so I did, join the support online support group for some Facebook groups for breast cancer patients and survivors. I was eventually named a Cancer Awareness by the support group.
Because of my physician and my support online support groups, I came to see if my post-cancer frustration is not uncommon or my fault. Today, almost a year after my reconstruction, I still have bad days, but I no longer suffer from life, fatal, extreme stress.
Recognizing emotional toll
Cancer patients cannot reduce symptoms of depression, such as feeling depressed, crying frequently, loss of appetite, sleep disturbances or excessive sleep, or lack of motivation, Kittle said.
When seeking a physician, cancer patients should “keep a journal to track how you feel each day, and make a commitment to move your body every day to help get you out of your head,” he said.
Although I was angry that my medical team failed to screen and treat me for depression, my condition was not uncommon. From my various support groups, I can learn that women across the country suffer from the failure of treatment providers to focus on the emotional toll that cancer and mastectomy can take and to gain limited access to mental health services after treatment.
In the end, I was lucky – not only in my diagnosis, but also in my ability to find a way out of my very serious depression.
Breast cancer and mastectomy come with many possible physical and emotional side effects. They deserve to be warned about the possibility of depression both during and after treatment, and when they experience cancer-related depression they will be offered strong, easy-to-use help. It is literally a matter of life and death.
Marketing executive Marta Segal Block lives in Oak Park, Illinois, with her husband, two teenagers, a turtle and two horrible behavior dogs.