Caregiver Guide

Understanding Your Role as a Caregiver

There is no single way to be a caregiver.

Depending on the person’s needs, you might help with:

• Scheduling appointments and coordinating medical care
• Keeping track of scans, medications, and test results
• Providing transportation or helping with travel
• Preparing meals or assisting with daily activities
• Managing insurance, bills, or work-related matters
• Listening, providing encouragement, or offering companionship
• Helping someone recover after surgery or manage treatment side effects

You may do some of these things regularly and others only occasionally.

One of the most useful conversations you can have is about expectations.

Ask the person you’re supporting

• What would you like me to help with?
• Are there things you prefer to handle yourself?
• Would you like me involved in appointments or treatment discussions?
• How should we make decisions when we have different opinions?

A person’s need for support may change over time.

The goal is to provide help in ways that respect the patient’s wishes, independence, and ability to make decisions.

Getting Organized

SFT can involve several specialists, hospitals, treatments, and years of follow-up.

Keeping important information organized can reduce confusion and help everyone understand the care plan.

With the patient’s permission, consider maintaining a folder or electronic record that includes:

• Pathology reports and important test results
• Scan reports and information about where images are stored
• Surgery, radiation, and medication history
• Current medications and allergies
• Names and contact information for the care team
• Upcoming appointments
• Questions and notes from medical visits

A one-page summary of the person’s SFT history is especially useful when seeing a new specialist.

You can use the information in Preparing for a Visit to get started.

If the patient wants you to communicate with their healthcare team, ask the clinic how to document that permission.

Depending on the situation, this may involve a written authorization or caregiver access to the patient portal.

Being listed as an approved contact does not automatically give you the legal authority to make medical decisions. Ask about additional forms if that becomes necessary.

When several doctors are involved, it helps to identify one main point of contact.

Ask the care team:

• Who coordinates the overall treatment plan?
• Who should we contact about symptoms or medication problems?
• Whom should we call after hours?
• Who will explain scan results and next steps?

Keep this information somewhere easy to find.

Helping With Medical Appointments and Decisions

Medical appointments can be overwhelming, particularly when the news is unexpected or several treatment options are being discussed.

As a caregiver, you may be able to help someone prepare questions, understand information, and remember the discussion afterward.

Before an appointment

Ask what the patient most wants to discuss.

Help prepare a short list of questions, including any new symptoms or concerns.

Make sure relevant records and scan images have been sent to the clinic if needed.

During the appointment

With the patient’s agreement, you can:

• Take notes
• Ask for unfamiliar terms to be explained
• Help clarify the patient’s questions
• Ask about expected benefits, risks, and alternatives
• Confirm the next steps before leaving

It’s helpful to let the patient lead the conversation whenever they wish and are able.

Sometimes patients and caregivers have different views about treatment.

You may be concerned about the risks of delaying treatment. The person with SFT may be more concerned about surgery, medication side effects, or preserving daily activities.

These conversations can be difficult.

Try to understand each other’s concerns and ask the care team to explain the available options, uncertainties, and likely outcomes.

An oncology social worker, palliative care clinician, or other member of the healthcare team may be able to help with difficult conversations.

When the patient has the ability to make their own medical decisions, those decisions belong to them. Your role can be to help them understand their options and express their priorities.

Helping With Treatment and Recovery

Caregiving needs often change during treatment.

Someone recovering from major surgery may need temporary help with movement, transportation, meals, or personal care.

A person receiving cancer medicines may need support with appointments, side effects, or managing fatigue.

Others may remain largely independent throughout treatment.

Before surgery, hospital discharge, or a new treatment, ask the healthcare team:

• What help will be needed at home?
• Are there activities or movements that should be avoided?
• How should medications be taken?
• What side effects should we expect?
• Which symptoms require a call to the care team?
• What would require urgent or emergency medical attention?
• When is the next appointment?

If you’re expected to assist with wound care, medications, mobility, or another medical task, ask for a demonstration and written instructions before leaving the hospital.

Some caregiving tasks require training or professional assistance.

Depending on the situation, ask about home health services, physical or occupational therapy, rehabilitation, or other resources.

Do not assume you need to manage complicated medical care on your own.

Caring for Someone Over Time

SFT can behave differently from many more common cancers.

Some people complete treatment and remain stable for years. Others experience recurrence, live with metastatic disease, or need several treatments over time.

This can mean that caregiving responsibilities come and go.

During stable periods, someone may need little assistance beyond occasional appointments or emotional support.

At other times, they may need more help with daily activities, treatment decisions, or recovery.

It may help to have a few basic plans in place:

• Who can help if a new treatment or surgery is needed?
• Where are the important medical records?
• How will appointments be managed if travel becomes difficult?
• Who can step in if the primary caregiver is unavailable?
• What preferences has the patient expressed about future care?

You don’t need to plan for every possible situation.

Focus on practical arrangements that provide confidence and flexibility.

Taking Care of Your Own Health

Caregiving can be rewarding, frustrating, exhausting, and meaningful, sometimes all in the same week.

You may be balancing caregiving with employment, parenting, other family responsibilities, and your own health needs.

It’s important to pay attention to how caregiving is affecting you.

Signs that you may need additional support include:

• Persistent exhaustion
• Difficulty sleeping
• Feeling overwhelmed or constantly worried
• Irritability or frustration
• Withdrawing from friends or activities
• Neglecting your own medical needs
• Feeling unable to take time away from caregiving

These are reasons to reach out for support.

Ask for specific assistance

Friends and family may want to help but be unsure what to do. Consider asking for meals, rides, errands, household tasks, or help with appointments.

Share responsibilities when possible

One person does not need to manage every task. Family members and friends may be able to take on different responsibilities.

Maintain your own routines

Try to protect time for exercise, sleep, medical appointments, social activities, and interests you enjoy.

Connect with other caregivers

Talking with someone who understands caregiving can reduce isolation and provide practical ideas.

Seek professional support when needed

Counseling, caregiver support groups, and healthcare professionals can help with stress, anxiety, and emotional difficulties.

Taking care of yourself helps make your caregiving role more sustainable.

Finding Practical Support

You may need help with transportation, home care, insurance questions, work leave, or managing household responsibilities.

You don’t have to solve all these problems without assistance.

Many cancer centers have social workers, nurse navigators, or patient support teams who can help you identify resources.

Depending on your situation, these may include:

• Caregiver support groups
• Counseling and emotional support
• Transportation and lodging assistance
• Home health services
• Rehabilitation
• Respite care or temporary caregiving assistance
• Financial and insurance navigation

Availability and eligibility vary by location and program.

Palliative care can help patients and families manage symptoms, emotional concerns, difficult decisions, and other challenges associated with serious illness.

It can be provided alongside active cancer treatment.

Caregivers may also benefit from the education, communication, and support provided by a palliative care team.

See Part 7: Living with SFT.

Work, Leave, and Caregiver Rights

Caregiving may affect your ability to work or meet other financial responsibilities.

Depending on where you live and your employment situation, you may qualify for leave, workplace protections, or other assistance.

Family and Medical Leave Act (FMLA)

In the United States, the federal FMLA allows eligible employees to take up to 12 workweeks of unpaid, job-protected leave in a 12-month period for certain family and medical reasons. This can include caring for a spouse, child, or parent with a serious health condition. Eligibility requirements apply, including rules about your employer, work history, and family relationship. Learn more through the U.S. Department of Labor.

State paid family leave

Some states provide paid family or medical leave benefits, including leave to care for eligible family members. Rules, benefits, and eligibility vary by state. Ask your employer or state labor department which programs may apply to you.

Hospital discharge and caregiver involvement

Many states have laws commonly called the CARE Act that help patients identify a family caregiver and provide for caregiver involvement in hospital discharge planning. Requirements vary by state. If the person you’re supporting is hospitalized, ask the care team to include you in discharge planning, with the patient’s permission.

Where to find additional help

Triage Cancer offers free legal and financial navigation information for patients and caregivers, including questions involving employment, insurance, and benefits.

For a more detailed discussion, see Part 10: Money, Work, Insurance and Travel.

Supporting Children and Other Family Members

A cancer diagnosis can affect the entire family.

Children may notice changes in routines, emotions, or the amount of time adults spend away from home.

Honest, age-appropriate conversations can help children understand what is happening.

You don’t need to have answers to every question.

It may help to

• Explain the illness using simple language.
• Encourage questions and allow children to express their feelings.
• Reassure them that they did not cause the illness.
• Maintain familiar routines when possible.
• Let teachers or other trusted adults know when additional support may be helpful.

Many cancer centers have social workers or child life specialists who can help families with these conversations.

Other adults in the family may also need support or opportunities to talk about their concerns.

Finding Connection and Community

Caring for someone with a rare cancer can feel isolating.

You may find yourself explaining SFT repeatedly to people who have never heard of the disease.

Connecting with other SFT patients and caregivers can help you exchange practical information, share experiences, and feel less alone.

Every family’s experience is different, and advice from other caregivers should be considered alongside guidance from your own healthcare team.

The Solitary Fibrous Tumor Foundation is working to build a community where patients and caregivers can find reliable information, connect with others, and participate in efforts to improve care and research.

You are welcome to be part of that community.

Your Next Steps as a Caregiver

Use this checklist to identify what might help you and the person you’re supporting.

• Discuss your role. Ask what help the patient wants and how they would like you involved.
• Get organized. With permission, gather important records, medications, and care team contacts.
• Prepare for appointments. Help identify questions, take notes, and understand next steps.
• Know the care plan. Understand upcoming treatments, monitoring, and when to contact the team.
• Identify additional support. Ask about social work, home care, counseling, and other resources.
• Review practical needs. Explore work leave, insurance, transportation, and financial questions.
• Take care of yourself. Make time for your own health, relationships, and activities.