Life after cancer

Transitioning into a post-treatment schedule

Early screening tests, new developments in treatment and better side effect management are all credited with increasing cancer survival rates, especially in the field of melanoma. More than 1 million of the estimated 14.5 million cancer survivors in the U.S. today are melanoma survivors. The cancer community is realizing now that with more and more survivors comes the responsibility to continue care beyond treatment. Recovery — both physical and mental — takes time, resources, education and patience.

Defining cancer survivorship

Cancer survivorship is often defined in two ways: completing treatment and having no remaining signs of disease; or living with, through and beyond cancer. According to the second definition, survivorship begins at diagnosis, continues through treatment and persists past it—including those who are living disease-free and those who are managing cancer as a chronic condition.

As you transition into survivorship, you may experience some unexpected difficulty. You may begin to realize that unfortunately the issues related to your cancer do not end when treatment stops. Your history of disease will affect both your health care needs and your lifestyle every day from here on. Knowing what to expect and the resources available can be valuable assets as you continue your own journey into life after cancer.

What to expect

Cancer and its treatment can affect your body long after it ends—for days, months or even years. Many cancer survivors must manage continuing and late effects of treatment, such as cognitive changes, fatigue, lymphedema and neuropathy. There are ways to alleviate and manage these effects, so maintaining an open dialogue with your health care team even after treatment has ended is vital. Your quality of life after cancer should be a continuing, lifelong focus as you move forward from your diagnosis.

The effects of cancer and its treatments also include psychosocial and emotional changes. Surviving cancer can stir up a lot of feelings, which will be different for everyone. Survivors often experience a mixture of emotions, from relief and joy to stress, depression, guilt or fear. It’s important to be aware that these emotions and many others may arise so you can be prepared to acknowledge, accept and move past them—and seek the appropriate help if you have trouble doing so.

Creating a survivorship plan

Once you’re past primary treatment, it’s important to take the time to create a survivorship plan. Similar to the way your treatment plan helped you navigate treatment, a survivorship plan is like a life wellness plan—a roadmap that helps you figure out where you’re going and how to get there. No single plan applies to every patient, but certain aspects of a plan may be similar.

Your survivorship plan should include everything from comprehensive information about the treatments you received to a follow-up care schedule and more. While you may be able to compile most of the necessary information on your own, be sure to thoroughly discuss each component of your survivorship plan with your doctor.

What to include

A well-documented medical history record and summary of your cancer treatments can help any doctors you see in the future provide you with the best possible care. Your records should contain your entire history of medical care, including your exact cancer diagnosis (date of diagnosis, specific cancer type, stage and location of the cancer), symptoms, diagnostic tests, procedures, treatments (including drug names and dosages), dates, side effects and any supportive care you received. It’s also important to include information about your family’s medical history, including any history of cancer. And if you haven’t already, create a contact log for your entire health care team. List names, titles, phone numbers and addresses; also describe the role each person played (or plays) in your care.

Late effects are those that develop weeks, months or even years after your treatment ends. Because of this, your survivorship plan should include information about your risk for developing certain late effects based on your specific type of cancer and treatment plan. Be sure to ask your doctor about the signs and symptoms you should watch for so that you can detect and manage them early on. Your survivorship plan should also discuss the risk that your cancer may come back as a local recurrence (where it originally developed) or as a distant recurrence in the form of metastatic disease.

In addition to your medical history and treatment summary, your survivorship plan should include plans for follow-up care. At the end of your treatment plan, your doctor should provide you with a follow-up care schedule. This schedule will detail the information regarding future appointments, diagnostic tests and exams. Ask about how often you will have checkups for the first year, second year, etc. Also record any medications you’ll be taking, including maintenance therapy drugs.

Staying healthy and active is perhaps as important as sticking to your follow-up schedule so you and your doctor may choose to add healthy goals and recommendations to your survivorship plan. This can include things such as working with a dietitian to establish healthier eating, maintaining or starting an exercise regimen, quitting smoking if you are a smoker and vowing to wear sunscreen every time you go outside.

In your survivorship plan, you might also want to include your estate plan. This usually involves completing advance directives, naming a power of attorney, developing a will and possibly establishing trusts.

Your survivorship plan is only useful if you actually understand and use it. If you have questions about any of the elements in your plan, don’t hesitate to ask your doctor.

Additional Resources


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