If you’re living with desmoid tumors, then you know that they can be challenging to manage. You may experience symptoms like pain, side effects from treatment, stress or anxiety related to your health, and more.

The more you can manage these situations, the better your quality of life will be. Here are a few steps you can take when you’re living with desmoid tumors.

1. Learn About Desmoid Tumors

Getting information on a rare condition like desmoid tumor can be hard. It’s easy to feel like you don’t know anything for sure or that the information you want is impossible to get. Start by talking to your health care team.

It’s important to understand that desmoid tumors aren’t classified as sarcomas, which are cancers that develop in bones or soft tissues and can spread to other parts of the body. Rather, desmoid tumors are benign (noncancerous) growths that occur in the body’s connective tissues, such as muscles, tendons, and ligaments. They are considered locally aggressive because they can invade nearby tissues but do not spread to distant parts of the body.

Despite these differences, people with desmoid tumors may be treated by a sarcoma specialist, who has experience in treating all types of rare tumors. Your medical team should be able to not only tell you about desmoid tumors but also direct you to trusted resources.

2. Talk to Your Doctor About Pain Management

Pain doesn’t just hurt — it can have an impact on every part of your life. Pain can affect when and how much you move, how you interact with people, how you care for yourself, and how you feel emotionally. It’s important to get treatment for pain, with the goal of keeping you engaged with life and able to participate in your normal activities.

If you’re experiencing pain because of these soft tissue tumors, talk to your health care provider. Nonsteroidal anti-inflammatory drugs (NSAIDs) are frequently used to help manage pain from desmoid tumors. Your health care providers may also suggest physical therapy, mindfulness practices, or complementary treatments like acupuncture for managing chronic pain.

No matter what treatment you try, follow up with your health care team if that strategy isn’t keeping your pain under control.

3. Build a Support Network

Make sure you seek out people to help and support you when you’re living with a rare disease like desmoid tumors. You’ll likely need emotional support as well as practical support for yourself and your family.

Reach out to friends and family, your religious community, or support groups. You can ask for help with household tasks like cooking or shopping with transportation needs, whether for your medical appointments or your children’s activities.

If you need to travel out of town for medical care at a sarcoma center, your support system may be able to provide child care, take care of pets, pick up your mail, or cover other tasks.

You can also talk to your oncologist or sarcoma specialist about available resources. They may refer you to a social worker who can connect you with more support.

It can be hard to open up about your needs while dealing with these rare tumors. However, honesty can deepen your bonds with your community and get you the necessary help when you’re facing a difficult health situation.

4. Find Mental Health Resources

When you’re living with desmoid tumors, you may need mental health support as well as physical support. You may find yourself experiencing more stress, sadness, anxiety, fear, and anger when you’re diagnosed with desmoid tumors. It may be hard for you to talk to the people closest to you about the way you feel.

In these situations, therapists, counselors, social workers, or other professionals can help you process your experience. You may also want to speak to a clergy member for spiritual support. Your doctor should be able to connect you to professionals who can provide the help you need.

If you’d prefer to talk to other people living with desmoid tumors, get connected to a support group. These may meet in your area or online. You’ll get to hear from others who are dealing with the same issues you are. This can be encouraging — it can help you remember that you’re not alone and what you’re feeling is normal and natural.

5. Identify Financial Support Resources

Getting medical care is often expensive, and you may feel stressed about how to pay for your medical care for desmoid tumors. Some people also worry about costs associated with missing work, traveling to and from medical appointments or a treatment center, and more.

Talk about these expenses with your family. Health insurance may cover some or most of your treatment expenses. If you don’t have health insurance, you may be eligible for Medicare if you’re over 65. Otherwise, you may be able to get Medicaid, although the rules differ among states.

In addition, both national and local groups may help you cover costs related to transportation, medication, housing, and more. You’ll have to reach out to each group to find out what you need to do to get their assistance.

Getting the financial side of your care taken care of can be stressful, but it will be worth it when you know you’ve got things covered.

6. Learn About Your Treatment and Its Side Effects

There are a number of treatment options for desmoid tumors. Sometimes people with desmoid tumors don’t begin treatment right away and are instead closely monitored by their health care team. This is called active surveillance. If your tumors progress, your care team may recommend active treatment like targeted therapies or chemotherapy, among other options.

Like all treatments, targeted therapies and chemo can cause side effects. You might experience nausea, diarrhea, fatigue, rashes, and other side effects. Talk to your doctors about what side effects to expect from medical treatment and how to manage them.

Talk With Others Who Understand

MyDesmoidTumorTeam is the social network for people with desmoid tumors and their loved ones. On MyDesmoidTumorTeam, 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? Do you have tips for others who have this condition? Share your experience in the comments below, or start a conversation by posting on your Activities page.