Many people newly diagnosed with sarcoma turn to the internet for information. One of the first things they discover is that sarcoma is a rare type of cancer, with only about 12,000 cases of soft tissue sarcoma and 3000 cases of bone sarcomas diagnosed annually in the United States. To further complicate the search for information, there are at least 50 types of sarcoma.
Fortunately, several online support groups and sarcoma advocacy organizations exist that provide information on sarcoma and its treatment. These sites serve as a lifeline for newly diagnosed patients.
A woman recently posted that she was awaiting determination of the type of sarcoma she had and mentioned how difficult the wait has been. In response, a man replied, “Welcome to the club no one hopes to join.” He then described the agony of his wait for a final pathology report and how he phoned the pathologist directly after ten long days of waiting. He wrote that he was “probably the first living patient this guy had ever spoken to” and learned that he had a myxofibrohistiosarcoma. He noted that the stage of uncertainty is the part of the journey that is the most difficult, and wrote, “You are just starting on the road and you have no idea where it will lead, there are no maps, and you don't speak the language. So let us be your tour guides and translators.”
What is interesting about these sarcoma-focused groups and organizations is that the patients themselves are very knowledgeable about sarcoma and its treatment, and many are willing to share the information they’ve learned.
On these online sites, newly diagnosed patients noted that other patients seemed to know much more about sarcoma than their community oncologists appeared to know. In some ways, these patients have become “experts” on sarcoma, primarily because of the infrequency of its diagnosis as well as the many different subtypes of the disease. The woman who was awaiting determination of her type of sarcoma learned that she has a high grade leiomyosarcoma with atypical spindle cell proliferation, pseudocapsule, and significant nuclear atypia. Not surprisingly, she wonders what this diagnosis means in terms of treatment and outcomes.
Other patients noted that statistics can be scarce when a diagnosis is so uncommon and has such unique histologic features. The good news is, the woman is not alone on her journey—there are other patients who offer to support her along the way.
A recurring situation noted by patients on the online sites is the difficulty in diagnosing the subtype of sarcoma. Patients shared stories of obtaining a second review of their pathology slides only to learn that a different type of sarcoma was diagnosed by the second pathologist. One patient’s slides were read differently by four pathologists at four different comprehensive cancer centers.
What can oncology nurses learn from the experiences of patients with sarcoma? Plenty. First, we need to be aware that in most cases, days to weeks pass before a final pathology report is released. It’s become routine practice for pathologists at community hospitals to send slides out for a second review, which prolongs the time to diagnosis.
Oncology nurses usually are not involved with the patient at this point, but we become involved soon after. Knowing that the patient has endured what may have been be a long time until the diagnosis was made, we can help expedite the patient’s care from that point forward. We also can screen the various online sarcoma support groups and recommend reputable sites. Further, we can assist in identifying clinical trials that the patient may be eligible for.
The Sarcoma Foundation of America’s Clinical Trials Resource Center lists up-to-date information about sarcoma cancer clinical trials throughout the United States and Canada. The Foundation’s website (www.curesarcoma.org) also has a directory of centers that specialize in sarcoma treatment. They recommend that because sarcomas are so rare, patients should be treated at centers that have experience with this disease.
Lisa Schulmeister, MN, RN, ACNS-BC, FAAN is an oncology nursing consultant and editor-in-chief of Oncology Nursing News.