If you have desmoid tumors, you may experience feelings of anxiety, depression, fear, or uncertainty. Living with a long-term illness can affect your mental health and interfere with work, family, and daily life. It’s estimated that about one-third of people with chronic illnesses face depression at some point. Many find that mental health counseling can help relieve the psychological burden associated with desmoid tumors.

Desmoid tumor — also known as aggressive fibromatosis and desmoid-type fibromatosis — is a rare disease that causes noncancerous growths in soft tissue (connective tissue). Desmoid tumors most commonly affect the arms, legs, and abdomen.

These soft tissue tumors can be painful and may cause uncomfortable swelling and lumps, which can make some people feel self-conscious and may affect self-esteem. In some people, it can cause mobility issues. In extreme cases, desmoid tumors can cause disfigurement and may become life threatening if abdominal wall tumors or intra-abdominal tumors grow large enough to impact vital organs.

Treatment for desmoid tumors can be stressful, often leading to uncomfortable side effects from targeted therapies or treatments such as chemotherapy or radiation therapy. If you are not receiving treatment but are getting regular scans (active surveillance) to monitor tumor growth, that can also be a source of stress.

If you have desmoid tumors, taking care of your mental health is essential for maintaining a good quality of life. If you need support, talk to your oncology care team. Improving your mental state can enhance your overall well-being. If you’re considering mental health counseling, here’s what you can expect.

What Happens When You Start Counseling

Mental health counseling is available in person or online. A typical counseling — or therapy — session lasts just under an hour. During your first session, your therapist will ask you to share your story — what led you to seek therapy. You may also be asked to fill out a questionnaire to help assess your situation.

In your first session, it’s important to tell your therapist about your condition and how it has affected your daily life. Be open about any feelings of depression, anxiety, or any other emotional distress. Remember, licensed therapists are required to keep everything you say private and confidential.

Your therapist will likely ask you about your goals for therapy. It can be helpful to bring notes with you about your experience with desmoid tumors and what you hope to achieve through therapy. As therapy continues, you will work on the goals you set and the issues you and your therapist identify together.

In your first session, be sure to ask the therapist about their approach to counseling. This is a good opportunity to see if the therapist is a good fit for you. You can also ask a therapist about their training and credentials.

Some therapists offer a free phone conversation before your first appointment, which can help you determine if a particular counselor is right for you. If you feel uncomfortable during your first meeting, you can talk to the therapist about your discomfort. You can always choose to seek help somewhere else.

Different Types of Therapy

There are a number of different approaches to therapy — sometimes called psychotherapy or talk therapy. Different styles of therapy can be used in individual, couples, family, or group sessions. Many therapists combine different methods. Here are some common therapeutic techniques:

• Cognitive behavioral therapy (CBT) is aimed at changing negative thoughts and improving behaviors linked to self-defeating thought patterns.
• Interpersonal therapy (IPT) helps people express emotions in healthy ways and improve communication with others.
• Psychodynamic therapy and psychoanalysis explore childhood experiences and past events that may have shaped negative behavioral or thought patterns.
• Supportive psychotherapy provides emotional support to boost self-esteem and help cope with psychological distress.
• Mindfulness training uses meditation and relaxation techniques, such as deep breathing, to help clear the mind.

Group Therapy vs. Individual Therapy

Individual therapy is conducted in one-on-one sessions with a therapist. Group therapy includes around five to 15 people dealing with similar issues, led by one or more therapists. For instance, there are group therapy programs for people living with chronic pain. Each approach has its own benefits, depending on your preferences.

Individual therapy focuses on your specific issues, allowing for personalized attention and support. Group therapy, on the other hand, allows people to share different perspectives on problems like depression and anxiety. In this setting, both peers and a therapist can offer insights. Sharing experiences in therapy can help people feel less alone.

Group therapy is different from support groups. While both can be helpful, group therapy sessions are led by trained mental health professionals. A therapist can provide strategies for managing psychological issues based on research.

How Effective Is Therapy?

Depression and anxiety are treatable conditions. Mental health counseling can significantly improve psychological symptoms for some people and may enhance overall well-being. However, everyone’s mental health is unique. What works for one person may not work for another. Some people may need long-term therapy, while others may benefit from a shorter course of counseling.

Therapy Has Been Found To Improve Pain

While there isn’t much research specifically on psychotherapy for desmoid tumor pain, some studies have shown the benefits of therapy for chronic pain. One study found that combining CBT with other types of therapy (such as self-hypnosis or therapeutic music) provided significant relief for people with chronic pain. Participants reported less pain and better sleep. For many, the effect lasted at least a year.

Another study on veterans preparing for orthopedic surgery found that a one-day workshop on acceptance and commitment therapy before their operation led to greater pain reduction three months after surgery. Participants also stopped using opioid pain relievers nine days sooner than those who didn’t attend the workshop. Research on the effects of psychotherapy on physical pain is ongoing.

Set Realistic Goals

It’s important to have realistic expectations about talk therapy for individuals with desmoid tumors and their loved ones. Mental health therapy can teach you self-care strategies to help manage pain, reduce stress, think positively, and find moments of happiness. It provides an outlet for expressing your frustrations and disappointments, gives you tools to improve your relationships, and helps you discover meaning in everyday life.

Talk to Your Doctor About Your Mental Health

If you are concerned about how desmoid tumors might affect your mental health, talk to your oncologist. They can refer you to mental health counseling.

In some cases, ongoing depression or anxiety may require medical treatment options, such as antidepressants. While most mental health counselors cannot prescribe medication, they can refer you to a psychiatrist — a medical doctor who specializes in the diagnosis and treatment of mental health disorders. A psychiatrist may recommend medication if psychotherapy alone hasn’t provided enough help. If you’re having your mental health evaluated, be sure to go to any follow-up appointments.

You can find more mental health resources on the Desmoid Tumor Research Foundation (DTRF) website.

Find Your Team

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.

Have you tried mental health counseling? How has therapy helped your quality of life? Share your thoughts in the comments below, or start a conversation by posting on your Activities page.