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MyPART - My Pediatric and Adult Rare Tumor Network
 

The Role of Families and Caregivers of People with Rare Cancers

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What is the role of caregivers?

When your loved one has a rare cancer, it can affect your entire family. Parents, spouses, adult children, or other loved ones often need to handle details of medical care and provide physical and emotional support.

With medical care, there are many appointments to schedule and go to with the patient. Sometimes you need to go on long-distance trips with the patient to see expert doctors. You may need to help the patient keep track of medicines and their treatment plan. You can also help by asking questions and raising concerns with doctors. And, you can share news and updates with their family and friends.

You may need to help your loved one with daily tasks, especially during treatment. Your loved one may have side effects from treatment that can make them feel tired, dizzy, or nauseous. This can make it hard for them to safely bathe, dress, or prepare food without help.

Having cancer can be overwhelming or scary at times and people with rare tumors need emotional support. You may need to help your loved one cope with difficult feelings. This may include listening when they need to vent or comforting them when they feel sad, worried, angry or frustrated. You may also need to figure out when they need help from a counselor or therapist. 

What supports are available for caregivers?

Caring for someone with cancer is hard. Caring for a loved one with a rare cancer can be even harder. Information about rare cancers may be harder to find. You may feel lost or alone. But, there are many sources of support to help families cope and handle the stress of having a rare cancer.

You can often find coping support at local hospitals. Support for you and your family can include counseling services, spiritual care, or child life services for siblings. Social workers and medical psychologists at hospitals are trained to help you when your loved one is sick. You can also seek out support from a provider in your community. Your doctor or your loved one’s medical team may be able to refer you to someone in your area.

There also are many online resources to help caregivers cope. In particular, the National Cancer Institute has information for families and siblings.

Social media can connect you to other families facing rare cancers. You can share stories and learn about others’ experiences. Some social media websites link you to help from your community. This could include meal delivery, help with errands, or financial support.

Patient advocacy groups and support groups can be a great support for families facing rare cancers. These groups can give you reliable information about treatment or research on rare cancer. They may also help you connect with doctors or rare cancer researchers, or with other families experiencing the struggle with a rare cancer.

The National Cancer Institute maintains a list of advocacy groups.