After your chordoma treatment ends, your body and mind will still need time to recover. There may be side effects from treatment that last for months or even years to come. Whether your treatment was for a new diagnosis, a recurrence, or advanced disease, it takes time to adjust to the “new normal” of life after treatment.
This point in a chordoma journey can bring with it many questions, such as:
- What follow-up care do I need to make sure the chordoma hasn’t recurred or spread?
- What ongoing care do I need to help manage the side effects I have, and where do I get that care?
- What do I do if I have a health emergency?
- How do I start getting back to the things I enjoy?
- When will I go back to work or school, and what will that look like?
- What will I say to family and friends about what I’ve experienced?
- How will I pay for the resulting medical bills?
- What can I do to cope with the fear that the chordoma will come back?
A tool that can help you prepare for and answer these questions is a survivorship care plan.
What is survivorship?
In cancer, survivorship focuses on the health and well-being of a person with cancer from the time of diagnosis until the end of life. This includes the physical, mental, emotional, social, and financial effects of cancer that begin at diagnosis and continue through treatment and beyond. The survivorship experience also includes issues related to follow-up care (including regular health and wellness checkups), late effects of treatment, cancer recurrence, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience. (Source: National Cancer Institute)
What is a survivorship care plan?
The terms cancer survivor and cancer survivorship can mean different things to different people. But no matter how you feel these terms apply to you, a survivorship care plan should be a universal part of every cancer patient’s care when treatment is complete.
A survivorship care plan is a detailed, written plan provided after treatment ends that is customized to an individual patient’s needs. You and at least one person from your care team — such as a doctor, nurse, physician assistant, nurse navigator, or social worker — should create your plan together, to make sure it meets your needs.
Does every patient get one?
Care plans are widely recognized as a critical part of supporting a person’s health and well-being after cancer treatment ends. Unfortunately, many patients do not receive care plans when they complete treatment. In fact, 68 percent of the chordoma patients and survivors who responded to our survivorship survey say they did not receive a survivorship care plan and another 20 percent were unsure if they received one.
Because there is no universal standard for survivorship care planning, the process differs across medical centers and even among individual providers within a center. This means that the care plans patients receive can vary widely and have different levels of usefulness.
Cancer organizations and advocacy groups around the world are working to resolve this problem. In the meantime, there are things you can do to make sure you receive an adequate care plan that will address your needs and concerns.
How do I make sure I do?
If you are in treatment now, talk with your care team about what to expect after treatment ends. If they typically provide survivorship care plans to patients when treatment is complete, find out how you can be involved in that process to make sure your needs are addressed.
If they do not usually provide plans, ask to sit down with your doctor(s) to create one. Take some time before that meeting to jot down your questions and a list of the information you want included in your plan.
If you have finished treatment but don’t remember being given a survivorship care plan, talk with your chordoma treatment team and your primary care physician. You can still prepare a care plan, but it may take a little bit more time to gather the information. If you have a follow-up appointment coming up, let your doctor know in advance that you’d like to sit down with someone to make sure you have everything you need to address any ongoing issues or concerns you have.
If you are in ongoing treatment such as long-term treatment with systemic therapy, a survivorship care plan could still be useful to you. It may not look the same as it would for a patient who has completed active treatment, but information on how to handle side effects, referrals to specialists who can address side effects, and recommendations for supportive care such as emotional or spiritual counseling are important for your well-being at all stages of your treatment journey.
What should be included in the plan?
A complete record of your chordoma treatment, including:
- Diagnostic testing (e.g., MRI and CT images, reports on how biopsy was performed)
- Pathology reports and tumor characteristics (e.g., size of tumor, extent of clear margins around resected tumor, subtype of chordoma)
- Treatment details (e.g., date(s) of surgery, extent of tumor resection, type and dose of radiation treatment, type and dose of systemic therapies, or details of clinical trials)
- Contact information for the center(s) where you were treated as well as your individual doctors
A schedule for follow-up exams and imaging (MRIs, CTs) to make sure the chordoma has not come back or spread to other parts of the body. At your follow-up visits, you will also be checked for health problems that may occur months or years after treatment ends, including late effects of radiation, health issues such as heart disease or diabetes, as well as other types of cancer.
Guidance about side effects and quality of life challenges you are experiencing, whether these are physical, emotional, cognitive, or social. This includes recommendations on the kind of care you may need for these issues as well as information on how to access that care. If you do not live near the medical center where you were treated, it is critical for your chordoma team to help you locate specialists in your area who can treat you for any ongoing side effects.
Information on dealing with practical challenges like paying for medical bills, dealing with insurance providers, or going back to work. Additionally, you should talk with your chordoma doctors about how to contact them in the event of a health emergency.
What do I do with my survivorship care plan once I have it?
- Bring it with you whenever you go to any type of doctor or provider
- Make sure all your providers have access to it; one way to do this is to request that it be uploaded to your electronic medical record
- Refer to it regularly so you can be sure you get the tests and follow-up care you need
- Review and discuss any changes with your healthcare team (both oncology and primary care) so it can be updated to reflect new circumstances or quality of life challenges
Survivorship care planning tools
There are a variety of general care plan templates that you can print out and use as a guide for making a plan with your doctors, such as:
- What’s Next? Life After Cancer Treatment from the Minnesota Cancer Alliance
- Cancer Survivorship booklet from ASCO Answers
There are also tools available from cancer agencies designed to help you personalize a survivorship care plan no matter where you are in your cancer journey. These include:
Contact a Chordoma Foundation Patient Navigator
Chordoma Foundation Patient Navigators provide personalized information and support to anyone affected by chordoma, anywhere in the world, at any stage of their journey. Your Patient Navigator will use their extensive knowledge of chordoma to help answer your questions, provide information about treatment guidelines, help you find qualified doctors, talk with you about side effects, and connect you with others in the chordoma community who have been through a similar journey.
References and further information
- Survivorship. National Cancer Institute Dictionary of Terms. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivorship.
- Survivorship care plan. National Cancer Institute Dictionary of Terms. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/survivorship-care-plan.
- Facing Forward: Life After Cancer Treatment. U.S. Department of Health and Human Services, National Institutes of Health, National Cancer Institute.
- ASCO Cancer Treatment and Survivorship Care Plans. Cancer.Net website. https://www.cancer.net/survivorship/follow-care-after-cancer-treatment/asco-cancer-treatment-and-survivorship-care-plans. Date of last update unknown.
- Survivorship and Quality of Life Network. European Cancer Organisation website. https://www.europeancancer.org/topic-networks/6:survivorship-and-quality-of-life-network.html. Date of last update unknown.
- Free from Cancer: Achieving Quality of Life for All Cancer Patients and Survivors. European Cancer Organisation website. https://www.europeancancer.org/resources/166:free-from-cancer-achieving-quality-of-life-for-all-cancer-patients-and-survivors.html. November 19, 2020.
- Survivorship care plan. Memorial Sloan Kettering Cancer Center website. https://www.mskcc.org/hcp-education-training/survivorship/survivorship-care-plan.