Description

Rhabdomyosarcoma is a rare type of cancer that begins as a growth of cells in soft tissues. Soft tissue support and connect organs and other parts of the body. Rhabdomyosarcoma most often starts in the muscle tissue.

Although rhabdomyosarcoma can begin anywhere in the body, it is more likely that you will start in:

  • The head and the neck.
  • The urinary system, such as the bladder.
  • Reproductive system, such as the vagina, uterus, and testes.
  • The arms and the legs.

Rhabdomyosarcoma treatment often requires surgery, chemotherapy and radiotherapy. The treatment depends on the location of the cancer starts, how big it grows and if it spreads to other parts of the body.

The research in the diagnosis and treatment have greatly improved the prognosis for people with a diagnosis of rhabdomyosarcoma. More and more people are living for years after a diagnosis of rhabdomyosarcoma.

Symptoms

The signs and symptoms of this condition depends on where the cancer starts.

For example, if the cancer is in the head or the neck, the symptoms may include:

  • The pain of a headache.
  • Bleeding from the nose, throat, or ears.
  • Tearing, swelling, or inflammation of the eyes.

If the cancer is in the urinary and reproductive system, symptoms may include:

  • A mass or bleeding in the vagina or the rectum.
  • Difficulty urinating, and blood in the urine.
  • Problems with bowel movements.

If the cancer is in the arms or legs; symptoms may include:

  • Possibly the pain in the affected area, if the cancer is pushed in the nerves or in other areas of the body.
  • Swelling or a lump in the arm or leg.

Causes

It is not clear what causes rhabdomyosarcoma. It begins with a soft cellular tissue develops changes in your DNA. A cell's DNA contains the instructions that tell a cell what to do.

In healthy cells, the DNA contains the instructions to grow and multiply at a set rate. The instructions that tell cells to die at a set time. In cancer cells, changes in DNA to give different instructions. The changes, to tell the cancer cells to make many more cells quickly. Cancer cells can continue living when healthy cells would die. This makes too many cells.

The cancer cells may form a mass called a tumor. The tumor can grow to invade and destroy healthy body tissue. At the time, cancer cells can break off and spread to other parts of the body. When cancer spreads, it is called metastatic cancer.

Risk factors

Factors that may increase the risk of rhabdomyosarcoma include:

  • Younger age. Rhabdomyosarcoma occurs most often in children under the age of 10.
  • Hereditary syndromes. Rarely, rhabdomyosarcoma has been associated with genetic syndromes that are transmitted from parents to children. These include neurofibromatosis type 1, Noonan syndrome, Li-Fraumeni syndrome, Beckwith-Wiedemann syndrome and Costello syndrome.

There is no way to prevent this condition.

Complications

The complications of this condition and its treatment include:

  • Cancer that spreads. Rhabdomyosarcoma can spread from its place of origin to other parts of the body. When cancer spreads, it may require more intense treatments. This can make recovery more difficult. Rhabdomyosarcoma is most often spreads to the lungs, lymph nodes and bones.
  • Long-term side effects. Rhabdomyosarcoma and its treatments can cause many side effects, short-and long-term. Your health care team can help you manage the side effects that occur during treatment. And the computer can give you a list of side effects to watch out for in the years after treatment.

Diagnosis

Rhabdomyosarcoma diagnosis usually begins with a physical exam. Based on the results, the health care team may recommend other tests. These may include imaging tests and a procedure to remove a sample of cells for testing.

Imaging tests

Imaging tests make pictures of the inside of the body. They can help to show the location and size of a rhabdomyosarcoma. Tests may include:

  • The x-rays.
  • The computed tomography scan.
  • The MRI scans.
  • Positron emission tomography scans, also called PET.
  • The bone scan.

The removal of a sample of tissue for testing

A biopsy is a procedure to remove a sample of tissue for testing in a lab. A biopsy for rhabdomyosarcoma should be done in a way that does not cause problems with the future of the surgery. For this reason, it is a good idea to seek care at a medical center that you see many people with this type of cancer. Experienced health care team will select the best type of biopsy.

Types of biopsy procedures used to diagnose this condition include:

  • Needle biopsy. This method uses a needle to remove tissue samples from the cancer.
  • Surgical biopsy. Sometimes, surgery may be necessary to remove a larger sample of tissue.

The biopsy sample goes to a lab for analysis. Doctors who study the blood and the tissue of the body, called pathologists, will test the cancer cells. Other special tests to give more details on the cancer cells. Your health care team uses this information to make a treatment plan.

Treatment

Rhabdomyosarcoma treatment more often combining chemotherapy, surgery and radiation therapy.

The treatments that the health professionals suggests depends on the location of the cancer, and the size of the cancer. The treatment will also depend on how fast the cancer cells can grow and whether the cancer has spread to other parts of the body.

Surgery

The goal of surgery is to remove all the cancer cells. But that's not always possible if the rhabdomyosarcoma has grown up around or near the organs. If the surgeon can't remove all of the cancer, your health care team will make use of other treatments to eliminate cancer cells that might be left. This could include chemotherapy and radiation.

Chemotherapy

Chemotherapy treats the cancer with strong medications. Many chemotherapy drugs exist. The treatment often involves a combination of medications. The majority of chemotherapy drugs are given through a vein. Some come in the form of a pill.

For rhabdomyosarcoma, the chemotherapy is often used after surgery or radiation therapy. You can help to kill cancer cells that might be left. Chemotherapy may also be used before other treatments. Chemotherapy can help to reduce a cancer to make it easier to do surgery or radiation therapy.

Radiation therapy

Radiation therapy treats cancer with powerful rays of energy. The energy can come from X-rays, protons or other sources. During radiation therapy, you lie on a table while a machine moves around you. The machine directs radiation to precise points on your body.

For rhabdomyosarcoma, the radiation therapy may be recommended after surgery. You can help to kill cancer cells that might be left. Radiation therapy can also be used in place of surgery. The radiation therapy may be preferable if the cancer is in an area where surgery is not possible due to the nearby organs.

Clinical trials

Clinical trials are studies of new treatments. These studies provide an opportunity to test the latest treatments. The risk of side effects may not be known. Ask your health care professional if you might be able to be in a clinical trial.

Coping and support

A diagnosis of rhabdomyosarcoma can bring up many feelings. With time, you will find ways to cope. Until then, it may help to:

  • Learn enough about rhabdomyosarcoma to make decisions about care. Ask your health care professional about this type of sarcoma, including treatment options. To learn more, can help you feel more in control. If your child has cancer, check with your health care team how to talk with your child about cancer.
  • Keep friends and family close. Keep people nearby can help you to deal with the cancer. Friends and family can help with daily tasks, such as shopping, cooking and taking care of your home.
  • Ask about mental health support. Speak with a counselor, medical social worker, psychologist or other mental health professional can also help. If your child has cancer, ask your health care team to help you find the mental health support. You also can search online for a cancer of the organization, such as the American Cancer Society, which lists the support services.

Preparing for your appointment

Start by making an appointment with your child's primary care professional. If there is a concern that you may have rhabdomyosarcoma, professionals will refer you to a specialist who has experience in the treatment of cancer.

Rhabdomyosarcoma treatment often requires a team of specialists. The team may include:

  • The orthopedic surgeons who specialize in the operation of the cancers that affect the bones or muscles, also called orthopedic oncologists.
  • Other surgeons, depending on the location of the cancer and the age of the person in need of treatment. Examples are pediatric surgeons, and head and neck surgeons, gynecologists or urologists.
  • Specialists who treat cancer with chemotherapy or other medications. These could be medical oncologists or, for children, pediatric oncologists.
  • Specialists who treat cancer with radiation, called radiation oncologists.
  • Specialists who study the tissue to find the type of cancer, called pathologists.
  • Rehabilitation specialists who can assist in the recovery after the surgery.

What you can do

Before the appointment, make a list of:

  • The symptoms, such as pain, feeling of tiredness or weight loss.
  • Some of the medicines, vitamins, and supplements you are taking, including the dosage and the frequency with which you take them.
  • Key personal information, including to other medical conditions or surgeries, and any major stresses or recent life changes.

Also:

  • Bring previous scans or X-rays, the images and reports, and any other medical records that might be useful.
  • Consider taking a family member or a friend to help you to remember all information that is obtained during the appointment.
  • Make a list of questions to ask the health care professional in order to make the most of your time.

If the appointment is for you or for your child, the questions may include:

  • What kind of cancer is this?
  • Has the cancer spread?
  • More proof do you need?
  • What are the treatment options?
  • What are the odds that the treatment is going to cure this type of cancer?
  • What are the side effects and risks of each treatment?
  • It influences the treatment to be able to have children? If so, does it offer ways to preserve that ability?
  • Are there brochures or other printed material I can have? What websites do you suggest?

What to expect from your doctor

Your healthcare provider is likely to ask you questions. The questions may include:

  • What symptoms does it worry you?
  • When did you notice these symptoms?
  • Are the symptoms constant or come and go?
  • How severe are the symptoms?
  • What, in any case, it seems that the symptoms better?
  • What, if anything, appears to worsen your symptoms?
Symptoms and treatment of Rhabdomyosarcoma