Usually, signs and symptoms lead parents to seek medical help for their child. The first steps typically include a physical exam, discussion of medical history, a complete blood count and other lab tests.
The doctor may recommend one or more of these imaging tests to locate the cancer and find out if it has spread:
- Computerized tomography (CT)
- Magnetic resonance imaging (MRI)
- Positron emission tomography (PET)
- Bone scan
The doctor may recommend a procedure to remove a sample of tissue (biopsy) from the tumor for lab testing. Testing can show whether the tissue is cancerous and, if so, what type of cancer.
Types of biopsy procedures used to diagnose rhabdomyosarcoma include:
- Needle biopsy. The doctor inserts a thin needle through the skin and guides it into the tumor. The needle is used to remove small pieces of tissue from the tumor.
- Surgical biopsy. The doctor makes an incision through the skin and removes either the entire tumor (excisional biopsy) or a portion of the tumor (incisional biopsy).
Determining the type of biopsy needed and the specifics of how it should be performed requires careful planning by the medical team. Doctors need to perform the biopsy in a way that won't interfere with future surgery to remove the cancer. For this reason, ask your doctor for a referral to a team of experts with extensive experience in treating rhabdomyosarcoma before the biopsy.
After the diagnosis, the extent (stage) of the cancer needs to be determined — whether and how far it has spread. Localized rhabdomyosarcoma has not spread beyond its origin or nearby tissues. Metastatic rhabdomyosarcoma has spread to other areas of the body. The cancer stage guides treatment options.
Over the years, major advances have been made in treating and curing cases of rhabdomyosarcoma. Treatment may include:
- Surgery. The goal of surgery is to remove the cancer cells, but surgeons also perform operations to maintain function and minimize disability. The extent of surgery for rhabdomyosarcoma depends on several factors, such as the tumor's size, location and its response to chemotherapy.
- Chemotherapy. Chemotherapy uses drugs to kill cancer cells. The type and timing of chemotherapy varies, depending on the specific situation and the estimated risk of the cancer recurring.
- Radiation therapy. Radiation therapy uses high-energy beams to kill cancer cells. It may be used after surgery to kill any cancer cells that remain. Radiation therapy may also be used instead of surgery if the sarcoma is located in an area where surgery is not possible or where it would result in unacceptable functional outcomes (such as loss of bowel or bladder function). Proton beam therapy, a newer form of radiation therapy, may be indicated in certain situations to minimize damage to surrounding normal tissue.
- Clinical trials. Clinical trials are studies to investigate new ways of treating cancer. Many of the advances in treating pediatric cancers, including rhabdomyosarcoma, come from clinical trials of the Children's Oncology Group, which has more than 200 participating medical institutions from the United States and other countries.
Coping and support
A diagnosis of rhabdomyosarcoma can be frightening — especially for the family of a newly diagnosed child. With time you'll find ways to cope with the distress and uncertainty of cancer. Until then, you may find it helps to:
- Learn enough about rhabdomyosarcoma to make decisions about care. Ask your doctor about this sarcoma, including treatment options. As you learn more, you may become more confident in understanding and making decisions about treatment options. If your child has cancer, ask the health care team for guidance on sharing this information in a caring and age-appropriate way.
- Keep friends and family close. Keeping your close relationships strong can help you deal with cancer. Friends and relatives can provide the practical support you'll need, such as helping take care of your house if your child is in hospital. And they can serve as emotional support when you feel overwhelmed.
- Ask about mental health support. The concern and understanding of a counselor, medical social worker, psychologist or other mental health professional also may help you. If your child has cancer, ask your health care team for advice on providing emotional and social support and options for professional mental health support. You can also check online for a cancer organization, such as the American Cancer Society, that lists support services.
Preparing for your appointment
If there are signs and symptoms that worry you, you'll likely start by making an appointment with your primary care doctor — or the pediatrician if the concern is with your child. If your doctor suspects rhabdomyosarcoma, make sure you're referred to an experienced specialist.
Rhabdomyosarcoma typically needs to be treated by a team of specialists, which may include:
- Orthopedic surgeons who specialize in operating on cancers that affect the bones or muscles (orthopedic oncologists)
- Other surgeons, depending on the location of the tumor and patient age (for example, chest surgeons, pediatric surgeons or urologists)
- Doctors who specialize in treating cancer with chemotherapy or other systemic medications (medical oncologists or, for children, pediatric oncologists)
- Doctors who use radiation to treat cancer (radiation oncologists)
- Doctors who analyze tissue to diagnose the specific type of cancer (pathologists)
- Rehabilitation specialists who can help in recovery after surgery
What you can do
Before the appointment, make a list of:
- Signs and symptoms, including any that seem unrelated to the reason for the appointment
- Any medications being taken, including vitamins, herbs and over-the-counter medicines, and their dosages
- Key personal information, including any major stresses or recent life changes
- Bring previous scans or X-rays (both the images and the reports) and any other medical records related to this situation
- Consider taking a relative or friend along to help you remember all the information provided during the appointment
- Prepare a list of questions to ask the doctor to make the most of your time
Whether you're the patient or your child is the patient, your questions might include, for example:
- What type of cancer is this?
- Has the cancer spread?
- Are more tests needed?
- What are the treatment options?
- What are the chances that treatment will cure this cancer?
- What are the side effects and risks of each treatment option?
- Will treatment affect the ability to have children? If so, do you offer fertility preservation evaluations and services?
- Are there any brochures or other printed material that I can have? What websites do you recommend?
What to expect from your doctor
Your doctor will likely ask several questions. Be ready to answer them to allow more time to cover other points you want to address. Whether you're the patient or your child is the patient, the doctor may ask:
- What are the signs and symptoms that you're concerned about?
- When did you first notice these symptoms?
- Have the symptoms been continuous or occasional?
- How severe are the symptoms?
- What, if anything, seems to improve the symptoms?
- What, if anything, appears to worsen the symptoms?