One common theme before, during and after cancer treatment is the universal feeling of distress. The good news is that we as humans are built to be resilient. These are 15 ways to manage distress during your cancer journey, along with some additional resources.
Before we begin:
I was compensated by Med-IQ through educational grants from AbbVie, Astellas, and Genentech to write about managing distress for cancer patients and their caregivers. All opinions are my own.
The information provided on this website is not meant to be used, nor should it be used, to diagnose, treat, cure, or prevent any disease or medical condition. This information has NOT been evaluated by the FDA. This website is not intended as a substitute for the medical advice of a physician. The reader should regularly consult their doctor in matters relating to his/her health and particularly with respect to any symptoms that may require diagnosis or medical attention. Full Disclosure Policy, Legal Clause, and Terms and Conditions – Click HERE.
Three words. Thirteen letters. When you are waiting in anxious anticipation to hear those foreboding words, “You have cancer,” it brings you to your knees and crushes you to the soul. You are now sucked into the vortex of being a cancer patient, and life as you know it will forever change.
Your doctors will immediately start talking about treatment protocols and you quickly learn a new vocabulary of terms like cytotoxic, differentiation, in-situ, immunotherapy, metastasis, and palliative care. The one word that stands above the others is “distress.”
Distress begins at the time you feel the lump, or your doctors begin testing. It will take you through treatment, and even beyond into remission and the fear of recurrence. I know all too well that feeling of dread and despair before, during, and after cancer. That is why I’m excited to work with Med-IQ on this article, and with Lillie D. Shockney, RN, BS, MAS, ONN-CG, University Distinguished Service Professor of Breast Cancer and Professor of Surgery, Johns Hopkins University School of Medicine. Med-IQ is an accredited medical education company that provides an exceptional educational experience for physicians, nurses, pharmacists, and other healthcare professionals.
In this article, I will discuss:
- What Is Distress as Related to Cancer
- Symptoms of Distress and the Impact on Quality of Life
- How (and Why) to Talk to Your Care Team About Distress
- How Do I Manage Distress?
- Resources for Getting Help and Support.
Definition of Distress
My layman’s definition of distress was that feeling of dread when I felt the lump and had to wait for the results. It was my heart breaking trying to figure out how I was going to tell my family. It was the fear of undergoing chemotherapy, of dying, and of losing my beautiful red hair. It was worrying about my new fiancé and if he was going to be supportive (not to mention my intimacy fears). It was feeling guilty for being too sick to play with my new stepson. It was the pit in my stomach about how we were going to pay the bills, even with good insurance. Not to mention, what’s going to happen with my job, was I making the right treatment decisions and the fear of recurrence. The worry and fear were 24/7.
The experts are a little more clinical in their definition. According to oncolink.org, distress is “Any unpleasant feeling, emotion or experience that affects your quality of life, and your ability to cope with your cancer diagnosis and treatment. Distress is a normal and expected side effect of cancer diagnosis, treatment, and survivorship.” (1)
Symptoms of Distress and the Impact on Quality of Life
Distress can be any mixture of feeling sad, angry, hopeless, powerless, afraid, guilty, anxious, fearful, panicked, discouraged, depressed, or uncertain. (2,3) Despite feeling like you are buried under a mountain of dread, the state of distress is completely normal. A cancer diagnosis is a major life-changing event that affects all aspects of your life and your relationships with your loved ones. (1,2)
Your quality of life may change by: (3)
- Questioning your faith and the meaning of life
- Pulling away from loved ones
- Being concerned about your social role (eg, parent, caregiver)
- Poor appetite
- Lack of concentration
- Depression and anxiety
- Poor sleep and insomnia.
I know personally, I hit each and every one. And more.
How (and Why) to Talk to Your Care Team About Distress
Your care team includes your doctors, nurses, patient navigators, and social workers. The quality of care is improving; as of 2015, all cancer centers that are accredited by the American College of Surgeons Commission on Cancer are required to screen patients for distress. At some point, during your treatment, someone on your care team should be discussing distress education, support, and referrals for services with you. (1)
You are a whole person, and your care team is there to help you in all aspects throughout your cancer journey. Everyone handles the distress of cancer differently, but the one common thread is that everyone is going to feel some type of distress during treatment.
Your care team should be monitoring your overall wellness and may want to address the following with you:
- What other crises have you been through in the past?
- How did you handle those crises?
- What do you know about your cancer? What do you want to know?
- What is the outcome you would like from your treatment?
- What are you most worried about?
- Who are your caregivers during treatment?
- What feelings do you experience the most?
- What brings you joy?
Regardless of what your care team does or does not ask you, here are some questions about distress that you may want to raise with them: (3)
- Is my symptom/s part of being distressed?
- Will my distress go away in time?
- How can you help me?
- How can I help myself?
- What help will my insurance cover?
- Is this symptom related to distress?
- What can I do to relieve my distress?
How Do I Manage Distress?
The good news in all of this is that we as humans are built to be resilient. (1) My mother was diagnosed with Addison’s Disease, a rare autoimmune condition, when she was pregnant with me. She faced significant health challenges for the last 45+ years but never let them get her down. Growing up, the life mantra that she taught me was “in the face of adversity, build your fortitude.” I never knew what that meant until I was diagnosed with breast cancer and faced my own health challenges.
People think I’m crazy when I tell them that breast cancer was a gift. Yes, I was diagnosed on my 39th birthday, but it was so much more than that. Because of cancer, I’ve learned to pursue my true passions. I’ve learned to love more. I’ve learned to live each day to its fullest. I’ve learned to take care of myself and my health.
I’ve also learned about fortitude and help to inspire others with this message of finding your true grit. No one on this planet is exempt from the bad things in life. Whether it’s health, finances, relationships, we are all going to face tough times. But how do you respond when life throws you those curve balls? I challenge you to rise up, to lean in, to dig down, and to find your fortitude.
I also challenge you to take it one step further and share that message with someone else who is hurting. One day when I was in the waiting room at the oncologist’s office, I noticed how downtrodden everyone looked. I get it, cancer isn’t a party. I jumped out of my introverted comfort zone and started talking to those around me in the waiting room or in the chemo lounge.
Hi, I’m Holly. I have breast cancer. What are you in here for?
How are you doing today?
I have a serious question to ask you. Do these jeans make my head look bald?
Not only did I see smiles, but the ice block surrounding my own heart started to melt. I could literally notice a change of how much better I felt.
Here are some other pieces of advice from the experts on how to manage your distress: (1,2)
- Recognize it’s ok to feel whatever emotion (positive or negative) that you are feeling.
- Make a commitment to take care of yourself – to eat healthy and exercise.
- Practice happiness and laughter on a daily basis – make a list of what makes you happy and/or laugh and do at least one of these things every day.
- Learn about mindfulness, meditation, Reiki and/or yoga. Many cancer centers have classes on these.
- Practice gratitude. Every day, list as many things as you can that you are thankful for.
- Take it one day at a time. On your roughest days, take it one hour at a time.
- Connect with your religious or spiritual beliefs and practices.
- Join a support group, but make sure it’s a good fit and feels right.
- Ask for help from your family and friends. Trust me, they want to be there for you!
- Keep records of everything – labs, doctors notes, scans, etc. I found an accordion binder was the best way to stay organized during my cancer journey. There is an odd feeling of empowerment with this practice.
- Keep a journal of your thoughts, symptoms, and how you feel.
- Don’t beat yourself up. Talk to yourself like you would if your best friend was going through cancer.
- Show kindness to others. Lifting another patients spirt will help to lift your own.
- Talk to your cancer team or patient navigator when you need help.
- Remember – you are strong. You have grit. You have fortitude.
Getting Help and Support
I mentioned these above, but this is a list of those people on your care team who are there to help: (3)
- Chaplains and clergy
- Patient navigator
- Social workers.
Additionally, there are more support resources at the following websites:
Before we wrap up, I strongly encourage you to participate in the following survey about cancer-related distress. This survey will take less than 15 minutes to complete, and you will be entered into a drawing to win 1 of 10 $100 VISA gift cards. No personal information will be kept, sold, or stored in the survey completion process.
These links are being provided as a convenience and for informational purposes only; they are not intended and should not be construed as legal or medical advice nor are they endorsements of any healthcare provider or practice. Med-IQ bears no responsibility for the accuracy, legality or content of the external sites or for that of subsequent links. Contact the external site for answers to questions regarding their content.
- [OncoLink Team] Oncolink Team. What is Cancer Related Distress? https://www.oncolink.org/support/practical-and-emotional/coping-communication-concerns/what-is-cancer-related-distress. Accessed November 13, 2018.
- [American Cancer Society] American Cancer Society. Distress in People with Cancer. https://www.cancer.org/treatment/treatments-and-side-effects/emotional-side-effects/distress.html. Accessed November 13, 2018.
- [National Comprehensive Cancer Network] National Comprehensive Cancer Network. NCCN Guidelines for Patients: Distress, Version 1.2017. https://www.nccn.org/patients/guidelines/distress/files/assets/common/downloads/files/distress.pdf. Accessed November 13, 2018.
FTC requirement: This article and website contain affiliate links and ads which means I may receive a commission if you click a link and make a purchase. Any information on this website is not meant to treat or diagnose any medical condition. Please consult your doctor for medical advice. We believe in conscious capitalism and the American Dream. Full Disclosure Policy, Legal Clause, and Terms and Conditions – Click HERE.