Survivorship

Creating a Survivorship Plan

You will need to monitor your health for the rest of your life, and to do that, you need a plan. Similar to the way your treatment plan helped you navigate treatment, a survivorship care plan can help you stay healthy as you move forward.

Your survivorship care plan should include everything from your medical history and the treatment(s) you underwent to a follow-up care schedule and more. A Survivorship Diagnosis Care Summary is available here to help guide you. You can make copies of it to use as you create your plan.

Following are the key elements of a survivorship plan. Be sure to thoroughly discuss each component of your survivorship plan with your oncologist. In addition, it is important to share this information with your primary care physician.

Medical History

The security of an up-to-date medical history record that has been thoroughly detailed and well-maintained will aid any future doctors in providing you with superior health care. Your records should contain a complete history of your cancer diagnosis, along with other disorders and diseases you may have or had, and a history of your medical care, including test results, treatments and procedures, side effects, dates, etc. Your records should also include information such as immunizations and vaccinations, dental records, your past and current prescriptions and over-the-counter medications, allergies and sensitivities, injuries, nutritional habits, pain issues and ongoing health problems.

It’s also important to include information about your family’s cancer and overall medical history. Certain types of cancer, such as breast, colon, melanoma, ovarian and prostate, have a hereditary link, which means they may be more common in some families than others. This can be because family members share certain risk factors, such as smoking or obesity, or because the cancer is caused by an abnormal gene being passed from parents to their children (hereditary cancer).

If your family has a history with cancer, your doctor may recommend genetic testing to look for gene mutations (changes). Certain mutations may indicate that you have an increased risk for developing certain diseases. The presence of a mutation does not necessarily mean you will develop cancer — only about 5 to 10 percent of all cancers are inherited. However, knowing whether a mutation exists can help you and your doctor develop a plan to reduce your risk and keep you healthy (see Genetic Testing).

If you do not yet have your family’s medical history written down, reach out to your relatives and start compiling a record. It will not only benefit you, it will help your family members, too.

Diagnosis

In addition to your medical history, your survivorship care plan should accurately reflect your exact diagnosis, including the date of diagnosis, the specific tumor type, the stage and/or grade of the tumor, the location of the tumor, and your hormonal status and biomarkers (if applicable). If you sought a second or third opinion and if any of these details differed, or if anything changed during the course of your treatment, document that information as well.

Health Care Team

If you haven’t already, create a contact list for your entire health care team now. Include their names, titles, phone numbers and addresses, and describe each person’s role in your care. You may think you’d never forget any of this information, but as the years pass, you could. It’s important to document this information so that if one of your future providers ever has a question about a past treatment or interaction, you will know exactly whom to contact for clarification.

 

Questions To Ask Your Medical Team About Your Survivorship Care Plan

  • What signs or symptoms might appear if my cancer returns, and what should I watch for?
  • Should I see a cancer rehabilitation therapist to help manage my lingering side effects, such as fatigue, neuropathy and other physical symptoms?
  • What are the long-term or late effects I should expect from treatment?
  • How can I obtain a treatment summary and survivorship care plan for my records?
  • Which health care provider is in charge of my follow-up care?
  • What survivorship support services are available to my family and me?
  • Can you suggest a counselor or support group to help me (or my family) adjust to survivorship?
  • Will my primary care provider receive a copy of my survivorship care plan, too, or should I take a copy of it to him/her when I go for my next checkup?

 

Treatment

Including a summary of your treatments in your survivorship plan can help ensure you get the best care in the future. Ideally, you already have written records of all your treatments. However, if you didn’t track this information, ask your doctor to help you create a treatment plan summary. Include all of the following details that apply.

  • Diagnostic tests – descriptions, dates and results
  • Hospital stays – reasons, dates, medications administered and/or procedures performed
  • Surgeries – types, dates and recovery times
  • Radiation therapies – sites, dates and total amount of radiation
  • Drug therapies – drug names, dosages and types, as well as administration dates and duration
  • Palliative care – specifics about any symptom management remedies you received, such as antiemetic medication to combat nausea
  • Other services – specifics about other services you received, such as physical therapy, fertility preservation, advice from a dietitian and counseling

Be sure to include details about your responses and reactions to treatment(s), as well as any complications and/or side effects they caused.

Risk for Late Effects and Recurrent or Second Cancers

As you now know, serious illness and its treatment can result in many side effects before, during and after treatment. Late effects are those that appear weeks, months or even years after your treatment ends. Your survivorship plan should include information about your risk for developing various late effects based on your specific diagnosis and treatment plan. Be sure to ask your doctor about the signs and symptoms to watch for so you can begin to manage these late effects before they become serious.

In addition, your survivorship plan should include information about the risk that your disease may come back (recur) as well as your risk for developing a new type of cancer (second cancer) or related disease (see Monitoring for Recurrence). It’s important to be aware of these possibilities so you can monitor your health and identify any signs as early as possible.

Follow-Up Care Schedule

At the end of your treatment period, your doctor should have discussed your follow-up care schedule. This details the need for future appointments, lab work, scans and/or any ongoing maintenance therapy.

Adherence

Your survivorship care plan is only useful if you actually understand and use it. If you have questions about any parts of your plan, don’t hesitate to ask your doctor. Also, continue to update your plan as necessary and make a few copies of it to tuck them away for your doctors in the future.

Survivorship Life Plan

When you think about it, this care plan is really your survivorship LIFE plan. It launches you on a course of wellness and empowerment, and keeps you on track for being and remaining healthy as you move forward with your life as a survivor.

A Holistic Approach To Wellness

Now that you are equipped with a survivorship plan, it is important to focus on how to lead a healthy lifestyle. Your treatment likely took more than just a physical toll, and you may already be struggling with a variety of challenges as you transition to life after treatment. Managing these struggles and creating a successful lifestyle roadmap requires attention to and consideration for all aspects of your life — from your eating habits to your emotional well-being. Following are some areas in which survivors commonly experience challenges.

Emotions

Treating a serious illness can affect the mind as well as the body. Even after treatment ends, you may experience stress, depression, anxiety, guilt and fear. Fortunately, resources are available to help you manage these feelings. Talk to your medical team for assistance with this.

Healthy Habits

Staying healthy and active may be just as important as sticking to your follow-up schedule. This includes good nutrition, physical activity as you are able, and following good health habits. While there are some general nutrition guidelines everyone can follow, healthy eating is slightly different for every survivor. Talk to your doctor or ask for a referral to a dietitian to discover the healthiest eating habits for you. Also, ask your doctor to outline an exercise regimen that you can follow. Unless you continued to exercise during treatment, you will likely need to start slowly and gradually build up your strength and endurance.

In addition, you and your doctor may choose to add other healthy goals and recommendations to your survivorship plan. For example, if you smoke, you might include information about programs designed to help you quit. You might also set a limit on your weekly alcohol consumption or commit to wearing sunscreen every time you go outside.

Spirituality

Making sense of your experiences can be challenging. It is natural and normal to wonder “Why me?” You may not know how best to move forward. Some people find meaning and purpose through their faith or religion. Others may question their beliefs. Regardless of your religious practices, your overall quality of life can improve if you develop peace of mind and a sense of meaning.

Finances

Many people struggle with the expenses of treatment. Financial assistance resources are available to help you manage this burden (see Patient and Caregiver Resources). And remember, it is essential to maintain dependable health insurance going forward.

How To Contribute

As a survivor, you possess information and experiences that can be used to help other people in similar situations. You have the ability to improve the lives of others through advocacy, communication, education and fundraising.

Additional Resources

 

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