For Your Patients: Survivorship -- Living With Melanoma

The end of treatment for melanoma does not bring the medical journey to an end. Instead, the journey continues during what many people call "survivorship." In reality, however, survivorship begins with the diagnosis of cancer. Many people prefer to describe the post-treatment period as "living with cancer" or similar terms.

No two people have exactly the same survivorship experience. Some people have a greater appreciation of life, especially "the little things." Others feel anxious, about the potential that melanoma may recur and about their health in general. Some people even have "survivor's guilt," unable to understand why they continue to live when so many others do not. There is no such thing as the "right" survivorship experience. Your experience is your own.

Almost 20 years ago the then-named Institute of Medicine (IOM; now the National Academy of Medicine) released a landmark report about the challenges that patients with cancer face when moving from the active-treatment phase to the post-treatment phase. Titled "From Cancer Patient to Cancer Survivor: Lost in Transition," the report aptly described many patients' survivorship experience: lost. Fortunately, you are not alone. An abundance of information and resources are available to assist you in your journey through survivorship.

Survivorship Care Plan

Multiple cancer organizations support the use of a survivorship care plan. During active treatment for melanoma, you likely had a treatment plan that described your diagnosis and all of the planned treatment, including surgery, radiation, and drugs. The survivorship care plan builds on the treatment plan with two additional, equally important documents: the treatment summary and the follow-up care plan.

The treatment summary documents all of the care you actually received, as well as side effects, complications, and other details of your treatment. Similarly, the follow-up care plan includes your schedule of visits for follow-up care, ongoing treatment needs, exams, laboratory tests, and cancer screening. The follow-up plan also describes various supportive services, including psychosocial/emotional support, caregiver assistance, financial assistance, and a range of other services to meet your specific circumstances. Lastly, the follow-up plan emphasizes the importance of healthy living behaviors related to diet, physical activity, tobacco and alcohol use, and other factors that can influence your general health and cancer survivorship.

If your healthcare team has not mentioned a survivorship care plan, ask whether you have one.

Survivorship Resources

In the years since publication of the IOM report, information and resources about cancer survivorship have increased dramatically. Knowing where to look for information, guidance, and support can help you avoid that "lost in transition" feeling.

The American Cancer Society has a wealth of information about cancer survivorship during and after treatment. The American Society of Clinical Oncology's Cancer.net website has an entire section devoted to survivorship issues. The National Comprehensive Cancer Network has dozens of documents for patients about all types of cancer care, some of which are specific to patients with melanoma.

The National Coalition for Cancer Survivorship focuses exclusively on a patient's "cancer experience," particularly survivorship issues. The American Academy of Dermatology website has information about self-care, which applies to all phases of the melanoma medical journey, as well as a section on "life after treatment." The National Cancer Institute has a "Coping with Cancer" section with information on a variety of survivorship topics that apply to patients with all types of cancer.

Read previous installments in this series:

For Your Patients: What Is Melanoma?

For Your Patients: Is What You're Seeing Harmless or Is It Melanoma?

For Your Patients: Is It Melanoma or Something Else?

For Your Patients: What to Know about Treating Early-Stage Melanoma

For Your Patients: New Options, Better Outcomes for Advanced Melanoma

For Your Patients: Choosing the Right Therapy for Advanced Melanoma

For Your Patients: Managing Recurrent Melanoma

For Your Patients: Follow-Up Care for Melanoma

For Your Patients: Palliative Care

"Medical Journeys" is a set of clinical resources reviewed by physicians, meant for the medical team as well as the patients they serve. Each episode of this 12-part journey through a disease state contains both a physician guide and a downloadable/printable patient resource. "Medical Journeys" chart a path each step of the way for physicians and patients and provide continual resources and support, as the caregiver team navigates the course of a disease.