Getting diagnosed with a rare disease like desmoid tumor can produce anxiety. It’s easy to feel like your whole life is different after one doctor’s appointment. It can also be hard to connect to other people in a similar situation because desmoid tumors are so rare.

It may take some time, but you can keep your quality of life high and your sense of well-being strong. Here are seven facts about living with a rare condition.

1. You Can Get a Second Opinion (If You Need One)

Because desmoid tumors are rare, with an incidence (the number of new cases) of 2 to 4 patients in one million people, many doctors don’t have a lot of experience with them. This can be true even if they are cancer specialists. Thus, it may make sense for you to get a second opinion on your diagnosis, treatment options, and more. You may ask to make sure that an expert in soft tissue pathology looked at your tumor sample and made the diagnosis.

Finding someone qualified to make a desmoid tumor diagnosis can be hard, too. The Desmoid Tumor Research Foundation offers resources to help you connect with the right specialists.

2. Advocacy Groups Can Help You

Advocating for yourself or for someone you love who has been diagnosed with desmoid tumor can be powerful. Advocating can help educate both the general population and medical staff about desmoid tumor. It can also help you meet other people who live with desmoid tumor or whose lives have been affected by it. Finally, it can raise funds for research that seeks to better understand desmoid tumor.

The most significant advocacy group for desmoid tumors in the United States is the Desmoid Tumor Research Foundation.

3. A Sarcoma Specialist Can Help You Get the Right Care

The best doctor to treat desmoid tumor is a sarcoma specialist. These health care professionals are experts in soft tissue tumors like sarcomas and desmoid tumors. Sarcoma specialists are generally found at academic medical centers and large oncology centers.

If you aren’t sure where to look, ask your doctor or oncologist for a referral. It may be worthwhile to travel to see one of these specialists. Your treatment team may include health care providers with different specialties. This is called a multidisciplinary team. They will all work together to help you get the best care possible and live your best life with desmoid tumor.

4. Connecting With Others Can Help You Feel Supported

Other people who live with desmoid tumors, or with any rare disease, may understand how you’re feeling and what you’re thinking. You can find other people with desmoid tumors online, like at MyDesmoidTumorTeam. One said to someone who was about to undergo surgery, “Remember to take care of yourself and lean on the community for support. We’re all here for you, cheering you on through this journey!”

You can also talk to your sarcoma expert to find out if they know of any support groups where you can meet others who have the same diagnosis. The Desmoid Tumor Research Foundation offers a tool to connect you with people around the world who understand life with the condition.

5. There Are Financial Resources That Can Help You

If you’re concerned about dealing with the financial implications of a desmoid tumor diagnosis, you’re not alone. Start by understanding your medical insurance coverage. Learning certain terms, for instance, can help you interpret how your benefits are applied and make sure that they’re applied correctly. You may also be eligible for medical care that is funded by the government, though the rules on this can vary by state.

The Desmoid Tumor Research Foundation offers a list of financial resources that may help you pay for medications and other care. You’ll need to figure out which ones apply to you or your loved one. Then, you can apply for help according to their instructions. It may take some time, but figuring out the financial side of your care could help you feel much better about getting the medical attention you need.

6. Your Mental Health Should Be a Priority

Some people who live with desmoid tumor experience mental health challenges related to their diagnosis. The Desmoid Tumor Research Foundation provides a series of helpful videos that cover issues like trauma, grief, loneliness, anxiety, self-care, toxic positivity, body image issues, and more.

You may also want to speak with a mental health provider. There are therapists who specialize in helping people with rare diseases. Your oncology center may have social workers who can provide support or offer referrals. You can also use sites like PsychologyToday to find a therapist. You can filter for someone with experience treating people with cancer or chronic illness.

7. Clinical Trials Might Be an Option

A clinical trial studies an investigational treatment to determine if it’s effective. Clinical trials can help researchers understand desmoid tumor better and may help them find new treatments for the condition.

You can talk to your doctor about available studies and the potential benefits and drawbacks of participating in a research study.

Talk With Others Who Understand

MyDesmoidTumorTeam is the social network for people with desmoid tumor 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 tumor.

Are you living with desmoid tumor? Share your experience in the comments below, or start a conversation by posting on your Activities page.