Guiding Patients Through a Soft Tissue Sarcoma Diagnosis
Soft tissue sarcomas (STSs) are a group of rare, malignant tumors of more than 50 subtypes that arise from connective tissues of the body.1,2 Each STS has its own microanatomy and behavior, making diagnosis and treatment complicated. Due to this rarity, a health care provider might see only a handful of STS patients during their career. With this in mind, what is the best way to approach a conversation with a newly diagnosed patient? Learn what a group of sarcoma specialists at the 2018 American Society of Clinical Oncology annual meeting had to say about how to guide patients through an STS diagnosis.
Getting the Diagnosis Right
STS presents in many ways, so partnering with a treatment team (tumor board) at a sarcoma center from the beginning is crucial.1 Let your patient know that you are in consultation with and/or referring them to specialists to ensure that the subtype of sarcoma is properly diagnosed so that treatment options can be evaluated. The tumor board may include an STS specialist, pathologist, medical oncologist, radiologist, oncology nurse, pharmacist, social worker, surgical oncologist, plastic surgeon and symptom management team. In addition, informal consultations with colleagues who specialize in sarcoma, both inside and outside the institution, may be helpful during treatment planning, especially for ensuring an accurate diagnosis.
Preparing for Conversations with Patients
As with any diagnosis, delivering a cancer diagnosis and discussing treatment options is always difficult, and with a rare cancer like STS it could be even more challenging. The patient might not understand that their STS is a cancer, or this fact could be lost on them in the shock of the moment. Even though you may feel your words are clear, patients may hear something different due to socioeconomic, educational or cultural differences. There are ways, however, that you can tone down emotionally difficult and hard-to-understand concepts:
- Maintain a dialogue with the patient. Ask questions along the way to help ensure they understand.
- Encourage the patient to bring a loved one or friend for support, and to help listen to and process difficult conversations.3
- Set realistic expectations about the patient’s prognosis and treatment options. If the patient has metastatic STS, ensure they understand the implications of advanced disease.
- Let patients know that they are not alone and provide sound resources to help them through their journey. Organizations such as Sarcoma Foundation of America and Sarcoma Alliance provide helpful resources for patients.
Setting Goals in Treatment Decision-making Process & Defining Terms
Setting treatment goals can help keep patients focused when undergoing treatment and can help you provide individualized support. When setting goals:
- Involve the patient in decision-making. Some patients with metastatic disease may be willing to undergo higher toxicity treatments for the chance to potentially live longer; others might not.
- Balance quality of life with efficacy. Discuss short-term goals (e.g., attending a wedding or graduation) to help your patient stay motivated during difficult treatment.
- Use the phrase "symptom control" rather than "palliation" when discussing ways to improve quality of life to avoid common misperceptions.
- Help define and qualify outcomes for patients with advanced disease. Discuss the differences between tumor shrinkage and stable disease in metastatic STS to help provide patients with realistic expectations and a more balanced understanding of “good outcomes.”
It is important to consider that each STS patient is as unique as each STS diagnosis and will require a sensitive and well-thought-out communication approach from their team. Being aware of the “patient perspective” and the complexities that come with an STS diagnosis, both emotionally and functionally, is important when communicating in an appropriate and helpful manner. Clearly communicating diagnosis and treatment information is the first step toward establishing a constructive doctor-patient dialogue. Involving your patients as much as possible in treatment choices and goals, as well as setting realistic expectations, can help both patients and their caregivers face an STS diagnosis in an informed and empowered way.
1 Sarcoma Foundation of America. Patient Resources. https://www.curesarcoma.org/patient-resources/. Accessed: September 6, 2018.
2 American Cancer Society. What Is a Soft Tissue Sarcoma? https://www.cancer.org/cancer/soft-tissue-sarcoma/about/soft-tissue-sarcoma.html. Accessed: September 6, 2018.
3 Rein In Sarcoma. Sarcoma Patient Starter Notebook. 6th Edition November 2016. https://www.reininsarcoma.org/wp-content/uploads/2016/12/RIS_SarcomaPatientStarterNotebook-6th-Edition-November-2016.pdf. Accessed: September 6, 2018.