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
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.
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.
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).
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.
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.
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.
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.
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.
Learn about the key players who can support you with making decisions around treatment-related considerations.
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:
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:
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.
Additional cancer survivor support resources include:
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: