How to Conquer the Fear of Cancer Recurrence

Fear of recurrence is the number one reported fear of cancer survivors. A cancer patient laments, “I thought that once I completed cancer treatment I could go on with my life. Instead, I have found myself hypersensitive to every ache and pain and dreading my follow-up visits to the oncologist.”

This cancer survivor’s confession is all too common. Having escaped a death sentence, many survivors are now serving a new life sentence in a prison of fear. The fear of cancer recurring has robbed them of their joy and energy. To heal completely, survivors often find that they have to relearn how to live. This should be a major goal of a Navigator—helping patients gain a new perspective on life after cancer.

Having cancer is similar in some ways to other traumatic experiences such as the death of a family member or being in a car wreck. Facing the suddenness and severity of life and death issues changes something deep within. One thing that changes is one’s outlook on life. One survivor said it was like “repricing everything around her with new price stickers.”  Surviving cancer makes one conscious of what was almost lost and what can never be regained. This awareness makes some afraid that they may again face the trauma of cancer. Some survivors develop Post Traumatic Stress Disorder (PTSD), a state in which life is significantly altered by these fears.

In the same way, someone does not stop driving after a car wreck or having friends after someone they love dies, a person cannot stop living and working towards a positive life after cancer. A survivor must find ways to overcome their fears and return to a sense of “normalcy.”  However, what one decides is normal will have to be redefined because cancer has changed the way they see things.

Cancer interrupted a life already in progress. Old dreams and goals may have died along the way. It’s important that survivors grieve for those very real losses. Those with a heightened sense of fear may not have sufficiently dealt with the trauma that cancer caused in their lives. Since they are dealing with both present fears and issues from the past, their coping measures may not be sufficient. Identifying their losses and making peace with them will help them live a fear-less life.

Navigator Tips for Helping Patients Overcome Their Recurrence Fears

Challenge Survivors To:

  1. Identify exactly what you fear and do all that you can reasonably do to prevent it. Make a plan to improve your health. Write your planned changes down so you can review them and work your plan.
  2. Schedule and keep regular check-up appointments to monitor your body.
  3. Write a letter to fear. This may sound silly, but it works. Write it with a “revengeful attitude” and tell FEAR that you will no longer listen to its constant taunting. Tell fear how you chose to think, believe and live instead. Without an “instead” plan you will rubber-band right back into fear.
  4. Try an experiment. Write down every little thing you enjoy and are grateful for. See how you feel after five full minutes of writing. Schedule time to be reflective and grateful every day. Develop your attitude of gratitude. Plan to start writing short notes to people who touched your life for the better. Tell them now grateful you are for what they did and for what they mean to you.
  5. Develop an emergency kit. This kit can be a letter to yourself reorienting you on how you want to live and what you will think and believe. Ask a friend to be your emergency kit. Teach them to let you vent and then remind you of your chosen beliefs.
  6. Make a plan for what you will do if cancer does recur and how you will live if it happens. This sounds hard, but when you face this mentally and make plans there is a sense of power knowing you have plans, no matter what happens.
  7. Determine to live a positive, faith-filled life. It is has a positive effect on your immune system. Build, buy or make something that reminds you of your choice to live positively in the present.

Fear paralyzes a person. Conquering the fear of recurrence is essential for a cancer patient to reenter life as a triumphant cancer survivor. Many survivors are living life free of disease, but prisoners of their fears of recurrence. Navigators can be the catalyst to help change her perspective of recurrence into a manageable fear. Navigators can coach the patient on how she can transform her fear into knowledge and empower her to live life as successfully after cancer as she did before cancer.

These are some of our suggestions that our Nurse Navigators and patients alike have found helpful. What other steps have worked for you?

 

 

Navigator Challenge: Ask, Hear, Respond

How do you approach the psychological and emotional healthcare experience of your patients?  Do you consider them an expert in the process?

We do. In fact, one of our guiding principles is that the patient is the first expert on managing their care experience. They know what they need, what works, and what doesn’t work, in their care. Thus, we believe that your crucial first step as a nurse navigator is to ask, hear and respond to to the needs of your patient.

Why do we feel this way? As healthcare providers, we specialize in training Nurse Navigators to guide patients through the journey of breast cancer, with all its twists and turns of diagnosis, treatment options, life changes and adjustments, and the myriad of emotions they and everyone affected around them encounter along the way. Yes, we as navigators know much about breast cancer: its causes, diagnosis, treatment and recovery.  What we don’t know is the individual needs of each patient who sits in front of us with a new diagnosis; these needs are a secret to be uncovered to ensure a successful psychological recovery.  Taking the time to ask and hear before we respond can be  a challenge in the face of the many tasks we have to perform daily, yet it is the most important component to our patient’s psychological safety.

One of the mental tools you can employ to stay grounded and remind yourself of the importance of taking the time to discover a new patient’s unique needs is to think, each time you pick up a new patient’s chart: “This could be my Mom or daughter, how would I want someone to treat them?”  It works! This technique taps into your empathy and reminds you of this person’s relationships and important life roles she has, much like your own. It reinforces her uniqueness and the fact that she is a special person who needs your undivided search for her needs. Finally, it also helps you remember not to impose any preconceived ideas of “what’s best” on her treatment journey.

It is only when we slow down at the beginning of the journey to discover this valuable information by asking questions and listening for her reply that we uncover what she needs.  Her needs, added to our medical interventions help make this unexpected, unwanted journey into the scary world of cancer treatment more bearable.  As Breast Health Navigators, we are the members of the interdisciplinary team that serve as her voice.  These needs and desires are only revealed to us when the patient views us as a trusted member of her healthcare team who cares about her personal needs.  So, slow down, take the time to tap into her heart to discover her recovery needs and them give voice to them as treatment decisions are made.  Navigation at its best is to ask, hear and respond.

What insights have you gleaned from your patients with an “Ask, hear, and respond” approach? How have these insights helped you become an even better advocate for your patients?