When you’re diagnosed with a desmoid tumor, it can feel like your whole world has been turned upside down. While desmoid tumors are not considered cancer, a desmoid tumor diagnosis can come with similar treatment options.

One of the risk factors for desmoid tumors is young adult age. Another risk factor is pregnancy. As a result, being diagnosed with these rare tumors can come at a time when you’re caring for young children or other family members.

A desmoid tumor diagnosis can have a significant impact on your daily life and your family. This article aims to provide guidance on how to care for your loved ones while also taking care of yourself during treatment.

Challenges of Caring for Family With Desmoid Tumors

Living with a desmoid tumor and undergoing treatment can make it difficult for you and your family to maintain your usual lifestyle. Following are some potential challenges you might face.

Physical Limitations

Desmoid tumors are fibrous growths that develop in connective tissues. They can sometimes cause physical limitations. Common symptoms such as pain, limited mobility, and fatigue can make it hard to keep up with the physical demands of caring for children or other family members.

Financial Concerns

Medical expenses and potential loss of income can add to your stress. They can also limit resources for family activities.

Time Constraints

Doctor appointments and treatments can take up a lot of time, leaving less time for family responsibilities. If you need to travel for follow-up appointments with your care team, you may have to spend days away from your family.

Changes in Family Dynamics

Your diagnosis may lead to shifts in roles and responsibilities within the family. You might also feel guilty about not being able to do everything you used to do for your family.

Despite these challenges, it’s important to remember that most children and families can adjust well to a parent’s diagnosis and medical treatment with proper support and communication.

Tips on Caring for Your Family During Desmoid Tumor Treatment

1. Open Communication

Be honest with your family about what’s going on. A 2021 study noted that while children who have a parent diagnosed with cancer typically adjust well, it’s important to communicate with them honestly. Although desmoid tumors are not cancerous, your treatment plan may include approaches that are also used for cancer. These may include targeted therapy and chemotherapy. You may experience side effects from these treatments that someone being treated for cancer might also have.

Use age-appropriate language to explain your condition and treatment to children and how it may affect them. Create an environment that encourages children to ask questions and share their feelings. This openness can help reduce anxiety and misunderstandings.

2. Ask for and Accept Help

Don’t be afraid to reach out to family, friends, or your community for support. This could include help with childcare, meal preparation, or household chores. Remember, accepting help isn’t a sign of weakness.

There are many online platforms and organizations that can help make coordinating meals, transportation, and other tasks easier.

3. Practice Self-Compassion

Be gentle with yourself. It’s OK if you can’t do everything you used to do. Focus on what you can do, and celebrate small victories. Remember that taking care of yourself is an important part of being there for your family. According to a 2020 study of mothers who are breast cancer survivors, incorporating self-compassion components into parenting can decrease stress, anxiety, and depression over time.

4. Maintain Your Identity

While it may seem impossible, try to set aside a little time for yourself and the hobbies you enjoy. Spending even short periods on activities you love can boost your mood and energy. A 2023 study of mothers with cancer found that participating in hobbies and self-care activities boosted their well-being. Hobbies can help you maintain a sense of self beyond your roles as a patient and caregiver and lead a more balanced life. If you’re up to it, keep up with your daily activities and comfort in what you normally enjoy.

5. Adapt Your Routines

Know that your family may need to be open to creating new routines and taking on different roles to accommodate your abilities and treatment schedule. Children tend to prefer predictability. If possible, try to keep new routines similar to what they previously were, and communicate any changes in advance.

6. Use Stress Reduction Techniques

Practice stress management techniques like deep breathing, mindfulness, or light walks outside. These can help you stay calmer and more centered, which can benefit both you and your family. You could even involve your family in these activities to bond and teach healthy coping skills. This is especially important for children, as they may have higher stress levels related to your diagnosis.

7. Build In Family Time and Fun

Even though your diagnosis and treatment may take up a large portion of your life, it doesn’t have to completely consume you and your family. Planning activities or brainstorming a list of fun activities to do together can give you and your family something to look forward to. This could include watching movies or designating one-on-one time with each child, even if it’s just for reading a bedtime story or having a chat.

8. Inform Others

Sharing information about your situation with other people in your life may help you cope. You can let your children’s teacher, guidance counselor, or principal know so that they can provide additional resources and watch for any changes in your children’s behavior. You don’t have to let them know every detail, but it can be helpful to have more people on you and your family’s team.

9. Seek Professional Support

Consider talking to a therapist or counselor, either individually or as a family. They can provide strategies for coping with the emotional aspects of your diagnosis and treatment. They can also give you guidance on supporting your children through this time. Your doctor or health care provider can help you and your family find additional resources.

Caring for your family while undergoing treatment for a desmoid tumor can be challenging, but it doesn’t have to be impossible. It’s OK to adjust your expectations and find new ways of connecting and caring. You and your family may need to use a variety of coping methods and resources to find what works best.

Most importantly, don’t forget that you’re not alone in this journey. Reach out to health care providers, support groups, and loved ones for help when you need it. With the right support and strategies, you can navigate this challenging time while still being the caring family member you want to be.

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 desmoid tumors and caring for your family? How has your family been affected by your diagnosis? Share your experience in the comments below, or start a conversation by posting on your Activities page.