Do You Have a Cancer Survivorship Checklist?

A survey was done by the National Coalition for Cancer Survivorship (NCCS) to explore the experiences and needs of cancer survivor patients. The online survey of over thirteen hundred cancer patients was completed in January 2019. Fatigue and anxiety were identified as the top side effects by the respondents and most survivors stated that they felt unprepared for the transition to post-treatment life. The survey results noted that the healthcare team was helpful in managing physical side effects but less helpful for emotional ones. Additionally, only 30% of respondents had discussed or received a cancer survivorship care plan.¹

I could identify with these survey results. Fear of the unknown and wondering if my disease would progress was ever-present. Financial issues were a concern as I was unable to return to my full-time teaching position because of the incapacitating side effect of fatigue and my husband had lost his job. Luckily, I had a cancer survivorship care plan that helped make some of the transition to post-treatment life easier.

Why is a cancer survivorship checklist helpful?

The National Coalition for Cancer Survivorship (NCCS) has developed a resource called a Cancer Survivorship Checklist that provides helpful guidance in gathering necessary information for all cancer survivors. The checklist is a simple tool that patients and caregivers can use as a guide during their cancer care continuum.²

What to include in a cancer survivorship checklist while in treatment

When creating a survivorship care plan or checklist while in treatment, you may want to include:

A plan for shared decision making

Do you have a loved one who can attend appointments with you? Open the lines of communication with your provider to get a full explanation of diagnosis, treatment options, and clinical trial options.

Treatment & contact information

Ask for a written outline of your treatment including frequency of treatment and tests, expected side effects, and how to manage these side effects. Ask for a written list of any other medications that you should be taking that you can have updated over time. Find out how to contact your healthcare team during business hours and after hours.

Diet & exercise plans

Discuss diet, exercise, or any other complementary recommendations.

Support & advocacy programs

Ask your provider to help you identify support or advocacy groups that may be helpful while you go through treatment. An oncology social worker may also be helpful for this.

Treatment costs

Ask for information about costs of treatment, resources for financial support, info regarding Family Medical Leave Act, etc. Share any financial concerns or considerations, as you may be eligible for certain types of financial assistance.

Caregiving

If you have a caregiver or multiple caregivers, outlining how they may be helpful can help to keep everyone on the same page. If you need a caregiver, talk to your provider about options for aides or hired caregivers.

What to include in a cancer survivorship checklist after treatment

After treatment, you may need to update your survivorship checklist.

Future care plan

Ask for a written outline of all past treatments and any plans for future tests or treatments, including what tests should be done, where, and how often.

Healthcare providers

Who will manage your care after treatment ends? Ask your provider how to coordinate with your primary care physician and others for any follow-up care.

Emotional and mental health concerns

Discuss emotional or psychological concerns, support and counseling options.

Financial next steps

Outline if there are any outstanding bills or financial liabilities related to your care. Do you need to apply for or extend any financial resources such as FMLA or disability that you had during your treatment? If you work, you may want to talk to your provider about whether or not you can return to work and how to discuss this with your employer.

How to make a survivorship checklist

This checklist provides a mechanism to ensure that major issues are addressed and that you have an easily accessible record of your diagnosis and treatment. I was fortunate that my oncology nurse practitioner completed the checklist and reviewed it carefully with me.

I would recommend downloading a printed example and bringing it to your oncologist in order to initiate the conversation. This tool can help to answer your questions and can be shared with other members of your healthcare team to help ensure your care is appropriately coordinated.^1,2