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Planning for Treatment?

Treatment for Epithelioid Sarcoma

How is ES Treated?

Treatment for ES will depend on a variety of factors. If you are diagnosed with ES, your Care Team may develop a treatment plan with you based on factors such as:

  • The stage of ES when it is diagnosed
  • The location of the tumor in your body
  • Your age and other health considerations

Importantly, your treatment plan may differ from others undergoing treatment. That is okay, because your plan may be customized to your specific needs and situation.

What are my treatment options?

Treatment options exist broadly for soft tissue sarcoma, and depending on your stage at diagnosis, your care team may consider one of the following treatments:

Surgery to remove the tumor, or as much of the tumor as possible, depending on the tumor’s stage, size and location

Radiation therapy to shrink or kill cancer cells, either before or after surgery

Systemic therapy, such as chemotherapy, to stop or slow the growth of cancer cells

You may receive treatment before surgery to shrink the tumor (called neoadjuvant therapy) or after surgery (called adjuvant therapy) to reduce the risk of the cancer returning (called recurrence).

In some cases of distal-type ES, amputation of a limb may be necessary to remove the tumor and prevent the spread of cancer to other parts of the body.

What are the potential side effects of treatment for ES?

Everyone may react differently to treatment. It is important to talk with your doctor about how a specific treatment may work for you. Your doctor will also describe potential side effects you may experience while undergoing treatment.

Your doctor may also talk to you about clinical trials that are ongoing for ES or soft tissue sarcoma. It is important to remember that clinical trials of experimental medicines may carry risks. While undergoing treatment, your doctor may discuss potential clinical trials that you may be eligible to participate in.

Learn more about clinical trials for ES and soft tissue sarcoma, so you can talk to your Care Team about whether a clinical trial might be right for you.

What is the survival rate for ES?

Survival rates for ES are different for everyone and depend on a variety of factors. Talk to your Care Team about what treatments are recommended for best possible outcomes.

There are many online resources to guide you on your treatment journey. A few to consider, include:

Sarcoma Coalition: A coalition of sarcoma advocacy groups working to provide resources and support for sarcoma patients and their families.

CancerCare: Provides free, professional support services to cope with cancer treatment, as well as reliable cancer information and resources.

Cancer Support Community: Offers resources for managing your cancer treatment alongside your Care Team.

 

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Treatment-Related Considerations

There are several important issues to consider if you are receiving treatment for ES.

Since ES occurs frequently in young adults, there are also many resources available to support the unique challenges young adults face with cancer.

Working and attending school during treatment

Working or attending school during treatment is a personal decision that varies by individual. You may find that your ability to continue working or learning depends on the type of treatment you receive. Everyone’s situation is unique.

For many people, the decision to continue working may be necessary to maintain health insurance coverage and income. For others, the side effects of treatment may make it very challenging to continue working.

Talk to your Care Team and your employer and/or school staff about balancing your treatment needs and your work/school responsibilities, if you plan to work or attend school during treatment.

Several patient advocacy groups offer support for working and going to school through treatment.

CancerCare: Provides a Cancer and the Workplace fact sheet with information on your rights related to continuing work during treatment.

Cancer and Careers: Empowers and educates people with cancer to thrive in the workplace by providing expert advice and education.

Cancer Legal Resource Center (CLRC): Champions the rights of people affected by cancer and operates under the Disability Rights Legal Center (DRLC). CLRC publishes an Employment Publication Guide explaining your rights to take time off, including your rights under the Family Medical Leave Act (FMLA).

Cancer.Net: Provides tips on how to handle both school and cancer treatment. Cancer.Net also produced a Cancer and School Podcast episode for teens.

Financial impact of treatment

The financial impact of cancer treatment can be challenging, especially when your main focus is on getting through treatment and getting better.

Most treatment centers have a social worker, financial navigator or counselor who may be able to assist you with understanding your insurance benefits and exploring other resources that may be helpful. You can also ask your Care Team if there are local resources that provide financial support.

Additional resources exist online for managing the financial impact of treatment.

Fertility preservation

If you receive chemotherapy or radiation therapy, especially to the abdomen or pelvic area, it is important to consider the potential effects that treatment might have on fertility or an unplanned pregnancy. Consider a consultation with a fertility specialist to discuss your options for fertility preservation, or talk to your doctor about the best method of birth control for you.

LIVESTRONG Foundation: Provides information about family-building options and fertility preservation, including a Find a Clinic tool to locate a fertility clinic near you. Also provides information and resources specific to young adults.

Alliance for Fertility Preservation: Offers a Fertility Scout tool that allows cancer patients to search for fertility preservation services in their area and request appointments.

Parenting with cancer

It can be physically and emotionally challenging to parent when faced with a cancer diagnosis. Nearly 3 million children and teenagers in the U.S. have a parent diagnosed with cancer.

Parenting with Cancer: An online resource with practical advice on how to talk to children about cancer and navigate the effects of cancer on parenthood.

Cancer.Net: Offers an online portal with tips for parenting while living with cancer, including advice on how to talk with your spouse or partner about cancer.

Emotional support

You may feel a range of emotions after a diagnosis of ES.

Counselors and social workers may be available to help you manage these emotions. You may not be the only person who needs support; and a loved one or your caregiver may benefit from counseling, too.

Cancer Support Community: Provides an online cancer support center called The Living Room where anyone impacted by cancer can find psychosocial support. Live HelpLine Counselors are available on the phone and via web chat.

CancerCare: Their Counseling Center offers professional oncology social workers to provide individual and group support free-of-charge for dealing with uncertainty, stress, anger, anxiety, depression, fear and guilt.

Sarcoma Alliance: Manages a Peer-to-Peer Network for individuals affected by sarcoma who wish to connect with others in the sarcoma community.

 

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Learn about the key players who can support you with making decisions around treatment-related considerations.

After Treatment

After you complete treatment, your Care Team will continue to monitor you for signs that the cancer has returned (called “recurrence”) or to watch out for other related health concerns. Your Care Team will assist you with creating a post-treatment care plan.

There are several screenings that may be a part of the follow-up routine:

MRI to detect tumors in the limbs

CT scan for imaging of the brain, chest and abdomen

Chest X-ray for imaging of the heart, lungs and bones in the chest and spine

Short- and long-term health effects

It can be challenging to return to daily life after cancer. You may experience both short- and long-term health issues, including:

Potential Immediate Health Issues

  • Fatigue
  • Sleep changes
  • Cognitive problems
  • Pain or swelling in your arms, legs or trunk (abdomen)
  • Nerve damage (neuropathy)
  • Impact on bone health

Potential Long-Term Health Issues

  • Hearing loss
  • Heart symptoms, such as high blood pressure, blood clots, or an abnormal heart rhythm
  • Hormonal problems
  • Chronic fatigue
  • Weight gain
  • Bone loss
  • Thyroid, kidney or breathing problems

Post-treatment health issues vary for each cancer survivor. Talk to your doctor if you experience any of these or similar issues and about your specific health risks or other concerns.

Lasting effects on education, employment & finances

Cancer treatment can have a significant impact on your physical and mental ability to attend school, go to work, care for others such as children or aging parents, and may create a long-term financial burden.

Scholarships and financial aid are available to young adult cancer survivors.

Cancer Survivors’ Fund: Provides scholarships for young cancer survivors to enable them to continue their college education.

Additional cancer survivor support resources include:

American Cancer Society: The Returning to Work After Cancer Treatment guide offers tips to transition back to work, including how to tell coworkers about cancer.

Fear of the cancer returning (recurrence)

It is perfectly normal to fear that the cancer could return (recur). The best approach is to understand the signs of a possible ES recurrence and keep up-to-date on your post-treatment care plan.

There are several resources available to support you after treatment, such as:

Cancer Support Community: Partners with the LIVESTRONG Foundation to host a Cancer Transitions program to support the physical, psychosocial and practical issues you and your loved ones may face after cancer treatment.

American Cancer Society: Offers a Life After Cancer Guide with information about returning back to “normal” after treatment and learning to live with uncertainty.

National Cancer Institute: Offers a Facing Forward: Life After Cancer Treatment Guide for cancer survivors, with information about receiving follow-up care, managing physical changes and coping with feelings.

 

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References: Click to Expand
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