Unfortunately, cancer doesn’t end when treatment does: Dealing with family, friends and fears of recurrence

Just Ours is a Breast Cancer Support Group that has been quite active since its inception over 17 years ago. Last month, two of the most common interwoven themes recurred: other people’s responses when treatment ends and fear of recurrence. A lively discussion ensued that generated several ways to cope.

While many people and their family members feel like celebrating after they “graduate” from chemotherapy or radiation, it can be a vulnerable time for some. Some patients are reassured by the routine of coming to the clinic and being monitored often for blood work and treatment and feel as though they are “fighting” the cancer during active treatment. This vigilance feels comforting and when they are “Let Loose” and don’t have an appointment for several weeks or months, they may feel vulnerable and that they aren’t doing anything to decrease their cancer. Every new ache or pain means the cancer is spreading.

This is where good communication with the medical team is important for piece of mind. Learn to listen to your body to distinguish when to call and when you may have just slept wrong and gotten a muscle cramp or some other transient symptom.

Another important area is lifestyle, which includes diet, exercise, sleep, weight management, stress management, and reducing exposure to carcinogens such as cigarette smoke. The latest research supports the idea that lifestyle change may help to prevent cancer recurrence especially when increasing exercise and improving diet. It may seem like the worst possible time to make changes, but it may be the best time to make changes that help save your life. Taking positive tangible steps may also restore a sense of control and that you are doing something to “fight back”.

Developing a daily practice of getting quiet through relaxation training or meditation may also help reduce fear, anxiety, anger, and restore peacefulness, increase energy, and help identify or clarify needs, goals, and courses of action.

Be direct and honest with the close people in your social network. When they say how glad you should be to finish treatment. Acknowledge that finishing treatment is certainly a big relief, but “It Ain’t Over.” Let people know that there may still be physical concerns with low blood counts for example or fatigue after radiation. When they say how great you look, when you feel terrible inside, acknowledge the compliment, but tell them that you may not feel as great as you look and how much effort it may take some days to “put your face on” and get out in the world.

Make plans so that you have something to look forward to or else your world can become rather restricted. Focus on enjoying what you can in the present, go back to old hobbies or activities and try some new ones, ones you always wanted to but never thought you had the talents or time. Not only will it take your mind off cancer, but also you may find hidden talents. Grandma Moses didn’t start to paint until she was in her seventies. Plan pleasurable activities that don’t focus on cancer. Surround yourself with people who take an interest in a variety of different things and are positive to be around.

Become as accurately informed as you can. Learn to advocate for yourself and be appropriately assertive to partner with your medical team. Don’t feel you have to become a “professional patient” and focus on cancer all the time. Once you are diagnosed, cancer becomes part of your life, but you can control to some extent how much it occupies your life.

Become an educator. Whether you want the role or not, you will need to teach people how to treat you. The sad fact is most people do not know what to say or do that is truly supportive. You may have to let them know when a comment is not helpful or you may have to give out tasks that you need help with. Having something to do may help reduce your anxiety and theirs. Above all, let them know you’re the same person despite having cancer. Or if you have changed, let them know that you are a different person. Either way, you will be treated the way you allow yourself to be treated. It may really help to speak up.

Dr. Morry Edwards is a licensed psychologist and Senior Fellow of the Biofeedback Certification International Alliance, who has specialized in treating people with cancer, head injuries, and other chronic illnesses for over 36 years with a patient centered holistic approach to health and wellness. He is currently located at Neuropsychology Associates and is the Former Director of Psychological Services at the West Michigan Cancer Center and consults in several clinical settings. He is also a part-time instructor at Kalamazoo Valley Community College. His contact information is phdpurple@aol.com and Neuropsychology Associates, 4328 West Michigan Avenue, Kalamazoo, MI 49006 (Ph. 269-375-2222, fax: 269-375-8292). He has made numerous national presentations and published many articles. He is the author of MindBody Cancer Wellness: A Self-Help Stress Management Manual, which is in the process of revision and several manuals for pain control, headache relief, maintaining motivation, cancer stress, and boosting brain function. His literary webpage is here.

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