CAREGIVING CORNER: TREATMENT DECISION MAKING AND ADVOCACY

Know Which Treatments and Expert Providers Are Available

After a diagnosis of nonmelanoma skin cancer (NMSC), which includes basal cell carcinoma (BCC) and squamous cell skin cancer (SCSC), your loved one must come to terms with her/his diagnosis and seek treatment. The caregiver often plays an essential role in helping the person with cancer with these first crucial steps.

One important role the caregiver has is supporting the loved one in the decision-making process about a range of treatment options. These primary options can include topical agents, excisional surgery (also known as wide local excision), Mohs Micrographic surgery, or skin-directed radiation therapy. In addition, these skin cancers may grow or advance into the surrounding tissues or spread (metastasize) to other organs in the body. When that happens, the person with cancer may require treatment with a therapy that works throughout the body (systemic therapy) or additional radiation therapy. To be able to make an informed decision, the person with cancer (and often the caregiver) will want to become familiar with these treatment options. This website provides an in-depth discussion of each of these treatment options.

To read about BCC treatment options, click here.

To read about SCSC treatment options, click here.

It’s also important to find a provider, or a team of providers, who are familiar with the most recent and advanced treatment options available for nonmelanoma skin cancer. A list of physicians specializing in skin-cancer treatments can be found in our FIND A SKIN CANCER SPECIALIST portal here.

For the person with cancer, initial meetings with multiple specialists can be overwhelming. S/he may not absorb the information that is being presented. A cancer diagnosis (or a cancer recurrence) can be a very emotional experience, and patients can shut down emotionally. The caregiver can offer support by listening to the healthcare providers, taking notes, and asking questions.

MAKING A TREATMENT PLAN

As a caregiver, you may have an essential role in assisting your loved one in treatment decision making. You can help in the following ways:

• Being the eyes and ears of the patient: the caregiver can offer support by listening and communicating with the healthcare providers and taking notes for the patient
• Being a researcher: caregivers can assist in gathering information and research to support shared decision making by framing relevant questions to ask the healthcare providers. It is imperative to seek treatment information that is based on well-designed studies, vetted by experts, and up to date
• Supporting decision making: because a lot of decisions need to be quickly made after a cancer diagnosis, the caregiver can assist the patient with various decisions that need to be made while figuring out treatment options. These may include whether a second opinion is necessary, what the treatment approach should be, and how to address financial considerations

BEING AN ADVOCATE

Your role in advocating for your loved one begins at diagnosis and is crucial throughout the treatment process, especially when or if your loved one can’t advocate for his/herself. To advocate for your loved one, you may:

• Assist with scheduling appointments
• Accompany your loved one to appointments, take notes, and ask questions
• Be a conduit for medical information for your family. Your loved one should sign a release for you to receive medical information. Click here for a discussion of the Health Insurance Portability and Accountability Act of 1996 (HIPAA) policies. It is also important to have a conversation with the person with cancer early in the process to make sure the communication pathway is what s/he wants
• Keep track of appointments and provide or arrange transportation
• Coordinate care among various healthcare providers
• Assist with or oversee financial issues, health insurance claims, etc
• Address any disability or legal issues.

As an advocate, you should encourage your loved one to speak for his/herself if possible. Your role as caregiver may involve serving as a bridge-builder between your loved one, the healthcare team, and other family members. Establishing the communication pathways can be very helpful and reassuring to everyone involved.