Alveolar Soft Part Sarcoma Symptoms & Causes

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We understand that you may have a lot of questions when your child is diagnosed with alveolar soft part sarcoma, such as: 

  • What exactly is it?
  • What are potential complications in my child’s case?
  • What are the treatments?
  • What are possible side effects from treatment?
  • How will it affect my child in the long term?

We’ve provided some answers to those questions here, and when you meet with the experts at the Dana-Farber/Children's Hospital Cancer Center, we can explain your child’s condition and treatment options fully.

What is alveolar soft part sarcoma?
Alveolar soft part sarcoma (ASPS) is a malignant soft tissue tumor, a rare type of cancer that starts in soft connective tissues of the body such as fat, muscles or nerves. ASPS is slow-growing and usually starts in the legs or arms, although it can also be found in the head and neck. It can spread to other parts of the body and tends to come back years later.

Is alveolar soft part sarcoma common?
No. As a group, soft tissue sarcomas (other than rhabdomyosarcoma), account for less than 1 percent of all new cancer cases each year and 3 percent of all childhood tumors. This particular type of tumor is very rare among children.

Is it curable?
In some cases, ASPS can be cured with a combination of surgery, chemotherapy and radiation therapy. Unfortunately, however, this tumor can often return after treatment, even many years later.

Causes

What causes alveolar soft part sarcoma?
The exact cause of alveolar soft part sarcoma is not entirely understood; however, studies have indicated that specific genetic defects may play a role.

Signs and symptoms

What are the symptoms of alveolar soft part sarcoma?
Alveolar soft part sarcoma affects the body’s soft tissues, which are elastic and easily moved. This means a tumor may exist for a long time before being discovered and can grow very large and pushing aside surrounding tissue. 

While symptoms may vary child-to-child, the most common include: 

  • a painless swelling or lump
  • pain or soreness caused by compressed nerves or muscles
  • limping or other difficulty using the legs and feet
  • diminished range of motion in the affected area

It’s important to understand that the symptoms of an alveolar soft part sarcoma may resemble other medical problems, some of them which are quite common and easy to treat, others which could be more serious.

Your child may experience symptoms differently. Therefore, it’s important that he is evaluated by a doctor to get an accurate diagnosis. Always consult your child's physician if you have concerns.


Questions to ask your doctor

You and your family are key players in your child’s medical care. It’s important that you share your observations and ideas with your child’s health care provider, and that you understand your doctor’s recommendations.
 
If your child is has been diagnosed with an alveolar soft part sarcoma, you probably have a lot on your mind. So it’s often helpful to write questions down. Some of the questions you may want to ask include: 

  • What does a diagnosis of a alveolar soft part sarcoma mean for my child?
  • How will you manage my child’s symptoms?
  • What kind of surgery will my child have?
  • How long will recovery take?
  • What are the possible short and long-term complications of treatment?
  • What is the long-term outlook for my child?
  • How likely is it that the tumor will come back?
  • What services are available to help my child and my family cope?

FAQ

Q: How serious is alveolar soft part sarcoma?
A:
Alveolar soft part sarcoma is a malignant tumor that can spread to other parts of the body. It is a serious condition requiring surgical removal of the tumor and chemotherapy and radiation in some cases. Once the tumor is removed, children need to receive ongoing follow-up care to monitor for recurrence. Unfortunately, this type of tumor can often return after treatment, even years later. 

Q: Will my child be OK?
A: Your child’s long-term health depends on a number of factors, including the size and location of the tumor and whether or not the tumor has spread. In general, alveolar soft part sarcomas that have spread are much more difficult to treat. Unfortunately, ASPS can also come back after surgery. Your doctor will discuss treatment options with you and your family, including clinical trials and supportive care.

Q: Will my child need chemotherapy or radiation?
A:
Possibly, depending on her individual circumstances. The primary treatment for ASPS is surgery. However, chemotherapy and/or radiation may also be used in some cases. 

Q: Where will my child be treated?
A: Children with ASPS are treated through our joint Dana-Farber/Children’s Hospital Cancer Center. 

  • Children treated through our Bone and Soft Tissue Tumors Program receive inpatient (overnight) at Boston Children’s Hospital and outpatient (day) care at Dana-Farber Cancer Institute.
  • If your child needs surgery, he will see doctors in Boston Children's Orthopedic Center

Q: What services are available to help my child and my family cope?
A: We offer several support services to help you, your child and your family get through the challenges and stresses of dealing with your child’s illness. 


We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital 300 Longwood Avenue, Boston, MA 02115 617-355-6000 | 800-355-7944

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