Seeking the best medical care for bone sarcoma in the USA

[Mary]

Bone sarcoma diagnosis can be a difficult process. Chances are you have been referred by your general physician to another physician about your bone tumor. So, the first thing to consider is whether the doctors you are seeing now are experienced with bone sarcoma. Some cancers are so common that it is easy to find a nearby doctor who can provide excellent care. But bone cancer is extremely rare; many doctors have never seen a case of primary bone cancer and are not familiar with its treatment. Bone cancer patients rely on the knowledge and skill of their doctors to save their limbs and their lives.  Some sarcoma patients make the decision to travel long distances to see reputable orthopedic oncologists (bone tumor specialists) and medical oncologists who have seen a large number of sarcoma patients.

Another question to consider: Are your doctors following the Bone Cancer Practice Guidelines? These guidelines were developed by the top 21 cancer centers in the United States.

Most bone sarcoma patients have two doctors – an orthopedic oncologist who handles limb surgery and functional concerns, and a medical oncologist who handles chemotherapy and general oncology concerns.

A local orthopedic oncologist, or bone tumor surgeon, can be hard to find. You can search for one in your area at the Musculoskeletal Tumors Society’s website. Your orthopedic oncologist should be experienced at performing surgery in the location of your tumor. Nearly 90% of bone sarcoma patients are offered limb-salvage surgery, which means that they do not need amputation. If amputation is presented as your only option, consider seeking a second opinion with another experienced bone tumor surgeon, with the understanding that delaying treatment can have risks as well.

If your tumor requires chemotherapy or radiation, you will also have a medical oncologist. Your medical oncologist should be familiar with the treatments that are given to sarcoma patients, as well as the common reactions that patients have to these treatments. Some oncologists are not comfortable with the chemotherapy protocols that are required for sarcoma patients. If this is the case, your oncologist may treat you locally while consulting long-distance with an oncologist at a sarcoma center, or he may refer you to a sarcoma center.

Adult patients who are treated at local hospitals sometimes have difficulties getting their team of doctors to work together seamlessly. Sarcoma centers tend to provide a team approach, may offer more treatment options and access to clinical trials, and are more experienced with the complications sarcoma patients face. It may be in your best interest to obtain a second opinion or seek treatment at one of the sarcoma centers or programs listed below.

UNITED STATES
Cedars Sinai Orthopedic Oncology Program, Los Angeles, CA
Columbia University Medical Center Sarcoma Department: New York, New York
H. Lee Moffitt Cancer Center Sarcoma Program: Tampa, Florida
M.D. Anderson Sarcoma Center: Houston, Texas
Massachusetts General Hospital – Adult Sarcoma Program: Boston, Massachusetts
Memorial Sloan-Kettering Bone Cancer Program: New York, New York
UCLA's Sarcoma Program: Los Angeles, CA
University of Michigan Sarcoma Clinic: Ann Arbor, Michigan
University of Washington Sarcoma Clinic: Seattle, Washington
Washington Musculoskeletal Tumor Center: Washington, DC

WORLDWIDE
British Columbia Cancer Agency: Vancouver, British Columbia, Canada
Royal Orthopaedic Hospital: Birmingham, England

Another way to find an orthopedic oncologist in your area is to consult internet resources. Members of sarcoma support groups may share information about their doctors, as they have done here. Of course, internet resources cannot always be trusted. It is important to consider the agenda of the writer, as well as their level of expertise. If you do not know these things, why trust an unidentified and inexperienced source when your life is on the line?

Most patients stumble upon health insurance issues at some point during diagnosis and treatment. You may be entitled to a health insurance caseworker, who will personally deal with your questions, claims and issues. You can ask your insurance company about a caseworker at anytime. Keep in mind that some health insurance companies will allow you to visit a network of cancer centers, which may include one or more of those listed above, and even provide assistance with expenses related to medical travel. If your health insurance does not cover the best doctor for your second opinion, the Hand in Hand program provides funding for expenses related to obtaining a second opinion. There are also other organizations that help with medical travel expenses.

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Source: Mary Sorens. I was a patient with a rare type of osteosarcoma at the humerus. I have read every survival story on this website, every post in the discussion board, and have met many survivors in person. I have also read countless medical journals in an effort to provide resources to patients and survivors.