The Missing Conversation in Pinktober: Emotional Scars of Breast Cancer

The feeling I most clearly remember is fear. An overwhelming wave of fear going through my body. My breath, wrestling against the suffocating force of a heavy weight on my chest. I was gasping. There was a churning feeling inside, a dark apprehension that something awful has occurred. I was slipping helplessly, down towards an unknown abyss. The speed and the horror were escalating. Suddenly I look down, and to my severe dismay, notice that my entire left breast is reduced to a pouch full of blood, jostling as I slid. I wake up before I could scream.

Disoriented, I attempt to grasp my reality.

A quick peek into my night gown reveals a large, jagged and healed-over the mastectomy scar. With ambivalent joy I inhale deeply, for my cancer-filled left breast is no longer attached to me. “It was two years ago, you are okay now,” a few neurons reluctantly fire in my brain and orient me.

I regain my sense of time.

Two years ago, I was diagnosed with Stage 3 breast cancer and underwent a complete mastectomy, 16 cycles of chemotherapy, and then 33 sessions of radiation. Now, on daily Tamoxifen, I was released to “go live your life” post-cancer. After a year and half of intensive treatments, I was handed broken pieces of my existence and told to go rebuild what I had lost. My mastectomy scar has certainly healed, but have I?

The journey to healing fully from breast cancer truly begins once all the treatments end. It is a long and tedious process, punctuated with unrelenting stress and anxiety that continues for years. A process which requires tremendous amount of coping, acceptance and negotiation. Coping with the diagnosis, the surgeries, the chemotherapies, the radiation, “the collateral damage” followed by a life-time of fears and anxiety.

Having breast cancer is a physically and psychologically intense traumatic experience. The assault on femininity, the fear of death, the angst of the surgeries and reconstruction, infertility, baldness, relentless nausea during chemotherapy, chronic aches and pains, low energy, fatigue and many such medical complications are just the tip of the iceberg of numerous physical traumas sustained by a breast cancer survivor.

Beginning at the time of diagnosis, it’s a process of trauma and re-traumatization.

Ask any cancer survivor, the toughest phase of this journey is the time when newly diagnosed. The words “you have cancer” have the capacity to shake any human to the core, no matter how “strong” the individual. The anxiety that ensues in the first few days is insurmountable. It’s hard to sleep at night and it’s nearly impossible to shake the thought of having been diagnosed with cancer. An up close view of death causes severe panic. Depressed mood is very common in newly diagnosed and can linger for months to years.

A cancer diagnosis involves a whirlwind of tests, scans and repeated hospital visits. Many experience emotional numbness and frightening helplessness. This intense fear can lead to complete denial of the illness and avoidance of treatment altogether. Unpredictability and uncertainty drive anxiety, and these are ever present in the life of a cancer survivor. Fear of recurrence is a persistent fear among those who live with cancer.

I still remember feeling afraid and lost. Despite being a fully trained psychiatrist, I wasn’t immune to any of it.

Sleep was hard to come by without pills and Xanax was my friend during the day. The knowledge and training about intra-psychic world of humans did little to alleviate my symptoms. Such is the trauma of having cancer. I started to look for answers to understand my emotional upheaval and realized that I had symptoms of Post Traumatic Stress Disorder.

PTSD is no longer considered only a war-trauma outcome but it has been established that severe trauma of any kind if intense or life threatening in nature can cause these symptoms. Cancer is no exception. The available data indicates that one out of four Breast cancer survivors experience PTSD or Post Traumatic Stress Disorder. It’s a staggering number of women, untreated and undiagnosed.

PTSD can manifest as symptoms of avoidance, re-experiencing (like nightmares or day-time flashbacks) and hyper-arousal.

Those suffering from PTSD experience persistent anxiety, panic attacks, racing heart, and inability to relax or sleep. Most trauma victims will desperately avoid triggers or reminders of their trauma incident. But the cancer trauma survivors cannot afford this avoidance. They return over and over again to the hospital and the cancer clinic, peppered with numerous reminders of their initial trauma. Each visit to the doctor can be triggering and re-traumatizing. The medical community is in denial of this aspect of dealing with cancer and remains poorly responsive to these emotional needs of survivors.

During my two years of cancer treatment, only once did a social worker meet with me to assess if I was doing “okay.” It was a brief visit while I was attached to the chemotherapy infusion, drowsy and tired. Her conclusion was that no further follow up was necessary.

My skills and training were useful in gathering support through this very difficult time, but I struggled with the idea of how unrecognized and unmet my emotional needs were. Feedback from other survivors indicated that this is a common occurrence. Only rarely were they referred to a support group or offered medication or therapy referrals.

It is imperative for oncologists and breast surgeons to ask routinely about the emotional status of their patients. Oncologists routinely ask their patients, “How are you doing or feeling?” without specifically looking for symptoms of emotional distress. The level of attentiveness to these symptoms depends largely on the individual physician. Patients also tend to mostly focus on physical symptoms.

Therefore, a complete assessment of a survivor’s emotional status at the time of diagnosis should occur. This needs to be reviewed at regular intervals during and at least 2 years out of treatment since data points to persisting symptoms.

Each newly-diagnosed person should get at least two appointments with a mental health professional to assess their level of acceptance and coping with the diagnosis. I have yet to meet a fellow survivor who has escaped emotionally unscathed from the cancer experience. The need is imminent and acute, but it is not being addressed.

The conversation about emotional rehabilitation of breast cancer survivors is completely missing from the awareness narrative in October.

2.9 million breast cancer survivors are being consoled with “be thankful you have survived.” In this day and age of ever shrinking funding to mental health services, no fundraising efforts are being made to address this unmet need of millions of survivors. Cure and awareness are the song of the month without attention to the emotional needs of those who actually do survive. Breast cancer survivors, if and when “cured” will still suffer from the consequences of this trauma.

Healing from cancer cannot occur without complete emotional healing.

Just three weeks ago, I had gone back for my routine mammogram, I sat in the same waiting room for thirty long minutes and when I inquired about the delay, the receptionist was rude. Before I knew it, tears were rolling down my cheeks. This was the exact waiting room where I once said “good bye” to my normal cancer-free body and lost my once “normal” life.

I still carry those scars, the raw and the invisible ones.

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8 thoughts on “The Missing Conversation in Pinktober: Emotional Scars of Breast Cancer

  1. Uzma, what a powerful and important post you have written here. The emotional scars I deal with every day are huge. I feel that I am lucky in that my doctors (more than one!) asked me about my mood and referred me to therapy when my response was that I wasn’t dealing with survivorship well. It makes me sad to think that this is not part of universal breast cancer care. That needs to change.

  2. Mental health gets little attention overall. My doctors have been listening to my concerns but it is very difficult to find a good therapist my insurance would cover. In most cases, they only allow a certain # of visits before you start to pay out of pocket. I think under certain situations, such as a cancer diagnosis, insurance companies should help cover for the cost. I keep myself busy a lot with work, blogging, writing, etc. so my focus is in multiple places but I have my down days, like anyone else. I would say more often than before my dx so I wouldn’t mind a little help. It’s too bad there’s so much collateral damage and so little focus on it.

    Great article, Uzma!

  3. Such an important post, and one that makes me feel less alone as I struggle these days with “survivorship”- with the fear I now carry with me as my “new normal.” The system is negligent for not having more mental health support in place during and AFTER treatment.

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