Living with SFT is different for everyone.
Some people complete treatment and return to their usual activities. Others live with ongoing symptoms, lasting effects from surgery or radiation, or tumors that require continued treatment or monitoring.
You may have times when SFT barely affects your daily life and other times when it becomes a major focus.
Whatever your situation, your quality of life matters. There are ways to manage symptoms, maintain physical and emotional health, and get support when you need it.
START HERE
Three things to remember
Pay attention to how you’re feeling
Pain, fatigue, sleep problems, and emotional concerns are worth discussing with your care team.
Stay engaged in the activities that matter to you
Exercise, rehabilitation, work, hobbies, and relationships can all be important parts of living well with SFT.
Ask for support when you need it
Your care team can connect you with specialists and resources to help manage the challenges of living with a rare cancer.
Managing Pain and Other Physical Symptoms
Pain can have several causes, including the tumor itself, surgery, radiation, nerve injury, or other health conditions.
Some people experience little or no pain. Others have discomfort that affects movement, sleep, or daily activities.
If you have new, persistent, or worsening pain, tell your care team. Understanding what is causing it is an important first step.
What can help with pain?
Depending on the cause, your team may recommend:
- Medicines for pain, including treatments specifically for nerve pain
- Physical therapy or rehabilitation
- Exercises and movement adapted to your condition
- Procedures such as nerve blocks
- Radiation or other treatments for painful tumors
- Referral to a pain or palliative care specialist
Sometimes several approaches are used together.
You don’t have to wait until pain becomes severe to ask for help. Early treatment may make symptoms easier to manage.
Other symptoms worth discussing
Tell your care team about changes such as persistent nausea, appetite loss, digestive problems, breathing difficulties, swelling, dizziness, or new weakness.
Some symptoms may be related to SFT, while others may be caused by treatment or unrelated medical conditions.
Your doctors can help determine the cause and what can be done.
Understanding and Managing Fatigue
Fatigue is a common concern among people living with cancer.
It can feel different from ordinary tiredness. You may feel physically exhausted, have difficulty concentrating, or find that everyday activities take more effort.
Fatigue can come from several sources:
- Cancer or its treatment
- Anemia or other medical conditions
- Medication side effects
- Poor sleep
- Changes in nutrition
- Stress, anxiety, or depression
- Loss of strength or physical conditioning
Let your care team know if fatigue is affecting your daily life.
What can help?
Stay active when it’s safe
Regular physical activity can help reduce cancer-related fatigue. Walking, cycling, swimming, stretching, or strength exercises may be appropriate, depending on your health.
Start with what you can manage
Even short periods of movement can help. Gradually build your activity based on how you feel and your medical team’s guidance.
Balance activity and rest
Some days will be more demanding than others. Plan important activities when your energy is usually better, and allow time to recover.
Check for other causes
Your team may recommend evaluating anemia, thyroid problems, sleep difficulties, nutrition, or medication effects.
Ask about cancer rehabilitation
A physical therapist or cancer exercise specialist can help you develop a safe plan.
If you have tumors affecting your bones, significant weakness, or other medical concerns, ask your care team which activities are safe before increasing exercise.
Maintaining Strength, Mobility, and Independence
SFT and its treatments can affect physical function in different ways, depending on where tumors are located and which treatments you’ve received.
For example, surgery involving muscles or nerves may affect movement, while tumors or treatment involving the brain may affect balance, memory, hearing, vision, or other functions.
Rehabilitation can help you recover abilities, adapt to changes, and remain as independent as possible.
Rehabilitation services that may help
| Physical therapy | Helps with strength, balance, walking, flexibility, and movement. |
| Occupational therapy | Helps you manage everyday activities such as dressing, cooking, working, and using equipment. |
| Cancer rehabilitation medicine | Evaluates physical limitations and coordinates treatments to improve function. |
| Speech and swallowing therapy | Helps with communication or swallowing difficulties. |
| Cognitive rehabilitation | May help with memory, attention, and other thinking difficulties. |
| Lymphedema therapy | Helps manage certain types of swelling after surgery or radiation. |
Rehabilitation can be useful during treatment, after treatment, or when new difficulties develop.
Ask your care team: Would rehabilitation help me maintain or regain any abilities that are important to my daily life?
Understanding Long-Term Effects of Treatment
Some treatment side effects improve over time. Others may continue or appear months or years later.
These are often called long-term or late effects.
They depend on your treatment history, the location of your tumor, and your overall health.
| Treatment | Possible lasting effects |
|---|---|
| Surgery | Changes in movement, sensation, organ function, or other abilities depending on the area treated |
| Radiation | Stiffness, tissue scarring, nerve or organ effects, or other changes involving the treated area |
| Cancer medicines | Fatigue, nerve symptoms, cardiovascular or organ effects, and other complications depending on the medicine |
| Treatment involving the brain or nervous system | Possible changes in memory, concentration, movement, hearing, vision, or other neurological functions |
Not everyone develops these problems.
Ask your care team which long-term effects are relevant to your treatment history and whether any additional monitoring is needed.
If you have received treatment at several hospitals, keep a summary of your surgeries, radiation, and medicines so new doctors understand your medical history.
For more information about ongoing monitoring, see Part 3: Follow-Up and Surveillance.
Taking Care of Your Emotional Health
Living with a rare cancer can bring uncertainty, even during periods when your disease is stable.
You may worry about recurrence, feel frustrated by treatment limitations, or find it difficult to explain your experience to people unfamiliar with SFT.
Some people experience anxiety, sadness, anger, or a sense of isolation. Others find that their concerns change over time.
Emotional well-being deserves the same attention as physical health.
Coping with uncertainty
SFT can behave unpredictably, and it may require monitoring over many years.
It can help to focus on the information available today, understand your current care plan, and identify which concerns need to be addressed now.
You may find it useful to:
- Talk openly with your care team about fears or uncertainties.
- Connect with people who understand the experience of living with SFT.
- Maintain routines and activities that provide enjoyment and purpose.
- Practice relaxation, mindfulness, or other stress-management techniques.
- Seek counseling when worry or distress affects daily life.
What is scanxiety?
Many people experience heightened anxiety before scans or while waiting for results. This is often called scanxiety.
Ask your care team when results will be available and how you’ll receive them.
Some people prefer to see results as soon as they are posted. Others prefer discussing them with their doctor first.
You can tell your team which approach works best for you.
See Part 3: Follow-Up and Surveillance.
When to ask for professional support
If anxiety, sadness, sleep problems, or feelings of hopelessness are affecting your daily life, tell your healthcare team.
An oncology social worker, counselor, psychologist, or psychiatrist may be able to help.
You can ask for emotional support at any point during your SFT experience.
Nutrition, Sleep, and Everyday Health
Taking care of your general health can help you feel better and manage the demands of treatment and recovery.
Nutrition
Eating well supports recovery, physical strength, and overall health.
Some people with SFT experience changes in appetite, digestion, or weight because of treatment or the location of their tumors.
If eating has become difficult, ask about seeing a registered dietitian experienced in cancer care.
There is currently no established diet that cures SFT or prevents recurrence.
Be cautious about supplements or restrictive diets promoted as cancer treatments. Some supplements can interfere with cancer medicines or other treatments.
Sleep
Pain, anxiety, medications, and changes in daily routines can disrupt sleep.
Tell your care team if you’re having persistent difficulty sleeping or feel exhausted despite adequate rest.
Treating contributing problems, developing consistent sleep habits, and receiving appropriate support may help.
Regular medical care
Continue seeing your primary care doctor for routine health needs, vaccinations, screening for other conditions, and management of existing medical problems.
Your primary care doctor and sarcoma team can work together to coordinate your overall health.
Work, Hobbies, Travel, and Personal Goals
A diagnosis of SFT does not define everything about your life.
Some people continue working, exercising, traveling, and participating in their usual activities. Others need adjustments because of treatment, symptoms, or changes in physical abilities.
Talk with your care team about what you want to continue doing.
For example:
- Can I return to my usual exercise or recreational activities?
- Are there precautions I should take while traveling?
- Could treatment affect my ability to work or drive?
- Are there ways to manage side effects while staying active?
- Would rehabilitation or workplace adjustments help?
If SFT or its treatment affects your ability to drive safely, especially because of seizures, vision changes, or neurological symptoms, ask your care team about restrictions and local requirements.
For information about employment protections, insurance, disability benefits, and travel assistance, see Part 10: Money, Work, Insurance and Travel.
Supportive and Palliative Care
Palliative care is specialized support that focuses on relieving symptoms, improving quality of life, and helping people manage serious illness.
It can help with pain, fatigue, nausea, emotional distress, and difficult treatment decisions.
Palliative care is available alongside cancer treatment and can be helpful at any stage of SFT.
You can continue receiving surgery, radiation, or medicines while receiving palliative care.
Ask your oncologist whether a supportive or palliative care specialist could help with your current concerns.
Keeping Track of Symptoms and Changes
It can be difficult to remember how you’ve felt between appointments.
Keeping a simple record can help you recognize patterns and communicate more clearly with your care team.
You might track:
- Pain, including where it occurs and how severe it feels
- Fatigue and energy levels
- Sleep
- Appetite and weight changes
- Physical or cognitive difficulties
- Medication side effects
- Mood and emotional concerns
You don’t need to track everything every day. Focus on the changes that matter to your care.
Your Next Steps
Use this checklist to identify areas where you may benefit from additional support.
BRING TO YOUR VISIT
Questions to Ask Your Care Team
Choose two or three questions that are most important to you right now.
ABOUT SYMPTOMS AND PHYSICAL HEALTH
- What might be causing my pain, fatigue, or other symptoms, and what could help?
- Would physical therapy, cancer rehabilitation, or an exercise program be useful?
- What long-term effects should I watch for based on my treatment history?
- Are there symptoms that should make me call before my next appointment?
ABOUT QUALITY OF LIFE
- How can I safely continue the activities that matter to me?
- Should I see a dietitian, counselor, or palliative care specialist?
- Are there treatments or adjustments that could reduce side effects?
ABOUT SUPPORT
- What resources are available for emotional support or connecting with other patients?
- Can a social worker help with work, transportation, insurance, or other practical concerns?
- Who should I contact if my physical or emotional needs change?
LIVING WELL
Living Your Life With SFT
Living with SFT may involve ongoing appointments, treatments, and uncertainty. It can also include meaningful relationships, personal goals, accomplishments, and long periods when cancer is only one part of your life.
Your priorities may change over time. What matters most is that your care plan continues to reflect your health, your needs, and the things you value.
You don’t have to manage every challenge on your own.
The Solitary Fibrous Tumor Foundation is working to connect patients and caregivers with information, resources, and a community of people who understand the experience of living with SFT.
Have questions or want to connect? Contact us at info@curesft.org.
This guide provides general educational information and does not replace medical advice. Discuss symptoms, activity, rehabilitation, and other health concerns with your healthcare team.