Mega Doctor News
By Fred Hutchinson Cancer Center
Newswise — Receiving a cancer diagnosis can be one of the most stressful, pivotal moments in an individual’s life. During my over decade-long career as a social psychologist and health communication researcher, I have been told repeatedly that the words “you have cancer” often create immensely negative emotions such as overwhelm, fear, anger, stress or even depression. These emotional reactions are normal and part of most patients’ experience — but there are ways to find support. With May being Mental Health Awareness Month, it is critical to raise awareness for patients and those supporting them.
One major challenge is that patients’ experiences of these negative emotions can make it hard to process all the information their oncologist presents to them. Prior research shows that when cancer patients’ difficult emotions (such as fear, anxiety and worry) are too high, it can hinder their ability to engage in cancer treatment decision-making. This is problematic because this is occurring at the beginning of treatment when rapid-fire decision making must occur to determine next steps in treatment.
So, how do you cope with the aftermath of a cancer diagnosis? Read on to learn how to find support and allow yourself to engage in treatment decision-making in an informed way.
Coping with a recent cancer diagnosis
Due to the overwhelming stress and strain — emotionally, mentally and physically — of receiving a cancer diagnosis and undergoing treatment, it is so important to be sure that you are provided with support. Below are some tips on ways to begin dealing with the reality of a cancer diagnosis and seek out the support you might need:
- Express how you are truly feeling. An essential part of coping with challenging emotions is to first label and acknowledge them. If you find yourself feeling fearful, anxious, sad and/or depressed, begin to label those emotions. Often, in the face of a cancer diagnosis, patients feel the need to be brave and put on a strong face for those around them. But this may not be in line with the reality of how you feel. Find safe spaces and places (support groups, counselor, spiritual leader) to express how you are truly feeling.
- Find the right people to support you. Walking through a cancer diagnosis and treatment often requires a lot of support — both practical and emotional. If you are able, begin to make a list of the people in your life who can provide practical support, such as getting you to and from the hospital, assisting with meals or watching your kids or pets. Then think of who you turn to for emotional support. Reach out to these people for help. To make it less overwhelming, you can also designate one person in each category to reach out on your behalf to others in order to get you the practical and emotional support that you need without you doing all of the delegation work. If you do not have a source of support, there are many people on your oncology team ready to support you such as psychologists, chaplains and social workers. These individuals are focused on ensuring you, the patient, feel supported with all of your practical, emotional and mental health needs.
- Get help (if needed) in communicating your cancer diagnosis. A common challenge recently diagnosed cancer patients face is the immense exhaustion and burden of communicating their diagnosis with friends and family. First, remember that you are not obligated to communicate your diagnosis to anyone. But, for those with whom you do want to communicate, consider asking some of your close friends or family to lift that burden off you and communicate it on your behalf. This way, everyone is informed and can provide support (encouraging notes, meals for you, etc.) without you having to go through the draining process of telling everyone yourself.
- Find something that you love (and are able) to do during treatment. Many patients report that something that helps them get through their cancer treatment is engaging in something very simple that they are realistically able to do. This could be watching your favorite shows, reading a poem a day or having your pet come in for a daily cuddle (when at home). The key is to pick something that soothes you and brings you joy but that is manageable while undergoing various treatments such as radiation or chemotherapy, or recovering from surgery. And remember that being flexible and taking days off when the side effects are too severe is crucial!
- Take each day one step at a time. Feelings of overwhelm are very commonly reported by cancer patients, especially when they are first diagnosed. There are often a lot of decisions to make, a lot of treatments to undergo, and all of this is happening while you are processing that you have cancer. If things feel like they are a blur to you, know that is normal and it’s OK to take one step forward at a time and not think too far into the future. Center yourself each morning on what appointments or choices you have to make that day rather than zooming too far ahead. This can help reduce the amount of overwhelm and allow you to focus on each step of treatment as it comes.
Tips for appointments and decision-making in early stages of cancer treatment
Experiencing challenging emotions is not only difficult, it can interfere with your treatment decision-making and your communication with your oncologist. Good communication with your oncologist is so important that it’s linked to both being satisfied with your communication with your oncologist and your psychological outcomes (such as anxiety and depression). Below are some tips for how to optimize your appointments with your oncologist in the early stages of treatment decision-making:
- If possible, bring someone with you to your appointments. As mentioned, recall of information can be poor if your challenging emotions like fear or anxiety are too high. That’s why, if possible, it is very helpful to bring someone like a friend or family member to your appointments. This way, you have another person present to both hear and recall information as well as to ask questions. If that person lives out of town, ask your oncologist if you can use FaceTime or another phone-based technology to virtually bring the person to your appointment. It is often good to pick someone who you feel will be an advocate for you during those appointments. Another key tip to remember is that if English is not your preferred language, you can always request a medical interpreter. Even if you speak English but feel more comfortable in another language, you can request this service to ensure you feel confident in understanding what your oncologist is saying to you.
- Write out your questions ahead of your appointment. Patients’ minds are often swimming with questions and concerns, but these can be forgotten or overlooked at the actual appointment. By bringing a list of questions, either written down on paper or typed into your phone, you can ensure that your oncologist looks at your questions and helps you prioritize what should be addressed during your appointment that day.
- Let your oncologist know if and where you are researching information. My prior research has shown that often, patients are looking up information about their cancer (treatment, prognosis, etc.) but failing to tell their oncologist where they got that information from fear of embarrassment. However, it is best to be honest with your oncologist about where you are seeking and finding information. This builds trust between you and your oncologist and helps them inform you more clearly about that information. In most cases, oncologists respond very positively to patients sharing this information and can best help guide and inform you to the details of your specific cancer diagnosis in a way that information online may not be able. Use this as an opportunity to gain from your oncologist’s expertise to help guide you through the information you are finding.
- Ask about any procedures or decisions that should (or can) be made before starting cancer treatment. A common issue that can negatively affect a patient’s future is overlooking important procedures, such as fertility preservation, that can only happen prior to starting cancer treatment. Although most oncologists discuss fertility loss as a side effect of cancer treatment, research shows that few provide information to their patients about preserving their fertility. This means that patients lose the chance to engage in fertility preservation. If you are of childbearing age and this is of priority to you, you may want to inquire about this possibility with your oncologist. If you are a Fred Hutch patient, ask about the Oncoreproduction Clinic. Additionally, ask your oncologist if there are any other medical procedures you should know about or consider prior to starting treatment.
- Ask your oncologist to outline (if possible) a roadmap of your treatment plan and/or get patient navigation support. Something newly diagnosed cancer patients commonly report is how overwhelming and confusing the cancer treatment ahead of them is. There can be multiple steps in your cancer treatment and care which include surgery, radiation and chemotherapy but very little clear guidance. Ask your oncologist or someone on your care team to create a roadmap for you of what lies ahead if you find that beneficial. You can also request to be connected with a patient navigator if the clinic where you are being treated has one. Patients report that patient navigation is extremely beneficial. It has been shown to help provide emotional support and assistance with information needs, problem-solving and the logistical aspects of coordinating their cancer care.
The aftermath of dealing with a cancer diagnosis can be an emotional time, full of uncertainty and a long, winding confusing path. But there are resources to help you every step of the way, and finding and seeking out good support and having clear communication with your oncologist can help you, just as they have helped many other patients in your shoes.
Megan J. Shen, PhD, is a social psychologist and health communication researcher. She is an associate professor in the Clinical Research Division at Fred Hutch and an adjunct associate professor of Populations Health Sciences at Weill Cornell Medical College. Her research interests include health care communication and decision-making; end-of-life care; advance care planning, palliative care, health equity and grief.
