Frequently Asked Questions About Primary Bone Cancer

Here are some answers to frequently asked questions about primary bone cancer.

Q: What is primary bone cancer?

A: There are 2 categories of bone cancer: primary and secondary. Primary bone cancer is a type of cancer arising from the bones. The bones are the structures that support the body and protect the internal organs and tissues.

Secondary bone cancer starts elsewhere in the body and spreads to the bone. This section deals with primary bone cancer.

Q: What are the risk factors for primary bone cancer?

A: There have not been any lifestyle risk factors, such as smoking, linked to primary bone cancer. These are some of the risk factors that have been linked to bone cancer.

• Genes. People with certain rare inherited cancer syndromes have an increased risk of getting primary bone cancer. These syndromes include Li-Fraumeni syndrome and an eye cancer called retinoblastoma.

• Bone diseases. People with some bone diseases are at greater risk for getting primary bone cancer later in life. One of these is Paget's disease. This condition makes the bones weaker than normal and can lead to cancer. Another disease is hereditary multiple osteocartilaginous exostoses (HMOCE). This is an inherited condition that causes bumps to form on bones.

• Radiation treatment. People who have had radiation treatments in the past for another type of tumor have an increased risk for developing a primary bone cancer.

• Age. Teenagers undergoing a growth spurt, and young adults in their early 20s, are at the most risk for the most common primary bone cancer. There may be a link between rapid normal bone growth and the formation of bone tumors, which is rapid abnormal, uncontrolled bone growth.

• Bone marrow transplant. A few people who have had a bone marrow transplant have developed bone cancer. 

Q: What are the symptoms of primary bone cancer?

A: The symptoms of primary bone cancer depend on the person and on the size and location of the tumor. These are some of the most common symptoms of primary bone cancer.

• Pain. The pain may come and go and usually seems worse at night. The pain will also increase with activity.

• Swelling. There may also be swelling or a lump in the area of the tumor. This lump may not be noticeable at first.

• Fractures. Bone cancer may weaken the bone in which it develops. Sometimes this can lead to a fracture.

• Weight loss and fatigue. Sometimes bone cancer can cause a person to feel tired. Weight loss is another symptom.   

These symptoms may be the result of primary bone cancer or of other, less serious causes. A person with any of these symptoms should see a doctor right away.

Q: What does primary bone cancer staging mean?

A: Staging is the process of testing that's involved to learn a cancer's grade and stage. Doctors use tests to check to see how extensive the tumor is at the main site, and to see if it has spread anywhere else. They use X-rays, computed tomography (CT scans), and magnetic resonance imagine (MRI scans) to help determine the stage of primary bone cancer. A biopsy is also needed to determine the stage. It is important to know the stage so that the doctor can decide what kind of treatment is best for you.

Sarcomas are also judged by how well developed the cells are that make up the cancer. This is called the grade of the sarcoma. The grade ranges from 1 (well developed) to 3 (poorly developed). Grade 2 and 3 sarcomas are the most aggressive. Higher grade sarcomas often have a worse prognosis than lower grade sarcomas.

Q: How is primary bone cancer treated?

A: A person with primary bone cancer may have one or more of these treatments.

• Surgery. The goal of surgery is to remove the tumor while saving limb function.

• Chemotherapy. The goal of chemotherapy is to use drugs to shrink and destroy bone cancer cells. It can be used to shrink the tumor before surgery. The drug may be injected into the body through a vein. The drug travels throughout the body killing cancer cells. Sometimes, drugs are injected right into the blood vessels near the tumor.

• Radiation therapy. The goal of radiation is to kill cancer cells by using powerful energy. Doctors also use radiation to ease the symptoms of bone cancer. External radiation uses a machine to direct radiation to the outside of the body. For internal radiation, a doctor inserts radioactive substances inside the body.

Doctors are always looking for new ways to treat bone cancer. They test new methods in clinical research trials. Before starting treatment, people should ask their doctor if they should consider any clinical trials.

Q: What are clinical trials?

A: Clinical trials are studies of new cancer treatments. Doctors run clinical trials to learn how well new treatments work and what their side effects are. If a treatment looks promising, doctors compare it to current treatments to see if it works better or has fewer side effects. People in these studies may get access to new treatments before the Food and Drug Administration (FDA) approves them for the public. These trials also help further our understanding of cancer and help future people with cancer.

Q: Should everyone get a second opinion for a diagnosis of primary bone cancer?

A: Many people with cancer get a second opinion from another doctor. There are many reasons to get one. Here are some of those reasons.

• Not feeling comfortable with the treatment decision

• Being diagnosed with a rare type of cancer

• Having several options for how to treat the cancer

• Not being able to see a cancer expert

Many people have a hard time deciding which treatment to have. It may help to have a second doctor review the diagnosis and treatment options before starting treatment. It is important to remember that in most cases, a short delay in treatment will not lower the chance that it will work. Some health insurance companies even require that a person with cancer seek a second opinion. Many other companies will pay for a second opinion if asked.

Q: How can someone get a second opinion?

A: There are many ways to get a second opinion. Here are some of them.

• Ask a primary care doctor. He or she may be able to suggest a specialist. This may be a surgeon who specializes in orthopaedic oncology, a medical oncologist, or radiation oncologist. Sometimes these doctors work together at cancer centers or hospitals. Never be afraid to ask for a second opinion.

• Call the National Cancer Institute's Cancer Information Service. The number is 1-800-4-CANCER (1-800-422-6237). They have information about treatment facilities. These include cancer centers and other programs supported by the National Cancer Institute.

• Consult The Official ABMS Directory of Board Certified Medical Specialists. This book by the American Board of Medical Specialists lists doctors by state. It gives their specialty, background, and training. It is available at most public libraries. You can also view it online at www.abms.org.

• Seek other options. Check with a local medical society, nearby hospital or medical school, or a support group to get names of doctors who can give you a second opinion. Or ask other people who have had cancer for their recommendations.