Living with a desmoid tumor can be incredibly challenging. The uncertainty surrounding your diagnosis, the pain, the impact of ongoing treatments, and the worry about how the tumor might affect your daily life can create a lot of stress. Beyond the physical symptoms and treatment side effects, there’s the emotional strain of facing a rare disease — anxieties and fears that can affect your well-being just as deeply.

Finding ways to reduce stress and manage your mental health is a priority when you’re living with a desmoid tumor. Taking steps to manage stress can help you maintain a better quality of life and improve your overall well-being. Here are six tips to help you reduce stress while navigating life with a desmoid tumor.

1. Recognize the Signs of Stress

Stress affects everyone differently, especially when living with a condition like a desmoid tumor. Recognizing the symptoms of stress can help you manage it more effectively. Keeping a diary of your symptoms and noting stressful events or treatments can help you identify patterns and triggers.

Some emotional and psychological signs of stress include:

• Irritability, anxiety, or mood swings
• Feelings of sadness or hopelessness
• Changes in appetite
• Difficulty concentrating
• Excessive worrying

You might also experience physical signs of stress, such as:

• Headache
• Dizziness
• Chest pain
• Heart palpitations (irregular heartbeat)
• Digestive problems
• Sweating or chills
• Too much or too little sleep

Always let your health care provider know if you have new or worsening symptoms that might be caused by stress or the effects of your desmoid tumor.

2. Identify Your Stressors

Understanding what triggers your stress is the first step in managing it. Making treatment decisions, managing side effects, coping with reduced physical abilities, and facing uncertainty about the future are particular concerns for people with desmoid tumors.

Treatment Decisions and Side Effects

Making treatment decisions about desmoid tumors can be a source of stress, according to a focus group of people with desmoid tumors. Some people reported feeling like they needed more guidance from their health care providers. Others said they would have made different decisions if they could go back in time.

Treatment side effects are also difficult to manage. Focus group members reported difficult side effects, like daily vomiting from chemotherapy and serious shortness of breath from radiation therapy.

Reduced Ability To Manage Daily Tasks and Responsibilities

Focus group members noted that pain from desmoid tumors affected their ability to bathe or dress themselves and take care of their children. Feeling dependent on partners or other family members for self-care or caregiver tasks caused some people to feel guilty and depressed.

Uncertainty About the Future

Living with any health condition can create uncertainty and worry about the future. In the case of desmoid tumors, people worried about whether their tumors would grow or return.

3. Plan Ahead for Your Medical Needs

Living with a desmoid tumor sometimes means frequent medical appointments and ongoing treatments. Planning can help reduce stress and prepare you for what’s to come. Consider these tips for staying organized and prepared for treatments:

• Keep a notebook or digital file of copies of all your medical information, including your diagnosis, treatment plans, medication lists, and notes from your appointments.
• Log any symptoms and side effects. That way, you and your doctor can see how you react to certain treatments.
• Prepare for potential side effects of treatments by having items like antinausea medications or pain relievers on hand.
• Prepare for your appointments by making lists of your symptoms, medications, and questions to ask your doctor.

Being organized can help you feel more in control and reduce the stress of managing your health care.

4. Make Time for Self-Care

Taking time for self-care is essential when you have a desmoid tumor. It’s not selfish to take care of yourself. In fact, it’s necessary for your mental and physical well-being. There are several ways to practice self-care, according to the Desmoid Tumor Research Foundation.

Calm the Nervous System

Taking steps to calm your nervous system can improve your overall well-being and help you feel more at ease. Engaging in relaxing activities can lower stress levels and promote a sense of balance in your body and mind. Consider incorporating the following practices into your daily routine:

• Practicing breathing exercises — Practice deep, slow breathing to activate your body’s relaxation response.
• Spending time in nature — Whether it’s a walk in the park or simply sitting outside, nature has a calming effect on the mind.
• Laughing or watching something funny — Laughter releases endorphins, which are natural stress relievers.

Practice Good Sleep Hygiene

Getting a good night’s sleep is crucial for your health and energy levels. By developing a few simple habits, you can improve your sleep quality and wake up feeling refreshed. Try these tips for better sleep with desmoid tumors:

• Follow a regular sleep schedule to help regulate your body’s internal clock.
• Use your bed only for sleep and relaxation, not for working, watching TV, or using electronic devices. This helps to strengthen the mental association between bed and rest.
• Stay away from alcohol, caffeine, and nicotine before bedtime.
• Don’t force yourself to sleep if you’re not tired. Instead, do a relaxing activity until you feel sleepy.
• Avoid blue light exposure from screens close to bedtime.

Nurture Your Body

Taking care of your body starts with what you eat. Choosing nutritious foods can boost your energy, support your immune system, and help you feel your best every day. Focus on nourishing your body with healthy food choices:

• Eat a well-balanced diet that includes a variety of nutrients.
• Practice intuitive eating by listening to your body’s hunger and fullness cues.
• Work through any eating challenges, such as loss of appetite or dietary restrictions due to treatment. Instead of three large meals, try eating smaller, frequent meals or snacks that are easier to handle.
• Keep yourself hydrated throughout the day by drinking plenty of water.

Make and Keep a Routine

A regular routine can be a powerful tool for reducing stress and bringing structure to your day. Following a consistent schedule helps you manage your time and create a sense of stability. Consider these tips:

• Set up a daily routine to keep your day organized and stress levels low.
• Stay on track with medical routines, like taking medications and attending follow-up appointments.
• Make time for activities that promote relaxation and enjoyment.

Stay Active

Incorporate physical activity into your daily routine. Remember that movement is essential for both physical and mental health. Exercise is a powerful stress reliever and can help improve your overall well-being. Walking, yoga, or swimming are great ways to stay active and reduce stress.

5. Build a Support Network

Feeling connected to others and having a strong support network is crucial. Surrounding yourself with supportive family, friends, or a spiritual community can provide comfort and reduce feelings of loneliness. There are several ways to build your support network.

Join a Support Group

Connecting with others who have desmoid tumors can provide a sense of community and understanding. Sharing your experiences and hearing from others can be incredibly comforting and offer practical advice.

Talk Openly With Loved Ones

Let your family and friends know how you’re feeling and what kind of support you need. They might not know how to help unless you tell them. Open communication can strengthen your relationships and make it easier to get through difficult times together.

Seek Professional Support

A therapist or counselor can provide valuable support and help you develop coping strategies to manage stress and anxiety. You may want to find a therapist who understands the challenges of living with an illness. The oncology center where you receive your treatment may have on-staff social workers who can help you, or refer you to appropriate resources.

6. Stay Informed and Involved in Your Treatment

Understanding your condition and treatment options can help reduce anxiety and give you a sense of control, which is crucial when living with a desmoid tumor. Talk to your sarcoma specialist about your diagnosis, the various treatment options available, and what you can expect during treatment. Knowing what to expect can help alleviate some of the uncertainty and fear that often come with a diagnosis like desmoid tumors.

Being actively involved in your care and treatment decisions can help you feel more empowered and less stressed. Speak with your health care provider about any concerns or questions you have regarding your diagnosis and treatment. You don’t have to face this journey alone — support is available to help you every step of the way.

Talk With Others Who Understand

On MyDesmoidTumorTeam, the social network for people with desmoid tumors and their loved ones, members come together to ask questions, give advice, and share their stories with others who understand life with desmoid tumors.

Are you living with a desmoid tumor? Do you have tips to reduce stress in your day-to-day life? Share your experience in the comments below, or start a conversation by posting on your Activities page.