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Your journey with chordoma doesn’t end when treatment ends, and neither does our support. Learn more about how to manage the side effects that can come from chordoma treatment.

Thanks to advances in research, improvements in care, and access to more treatment options, more people than ever before are living with, through, and beyond chordoma. Along with this comes the need for information and resources that help you live well during and after chordoma treatment.

What is survivorship?

Cancer survivorship is not a term everyone is familiar with or comfortable using. There are a number of definitions of survivorship, some of which refer only to the period of time after initial treatment for cancer has ended, while others state that survivorship begins at the time of a cancer diagnosis. Family members, friends, and caregivers are also considered part of the survivorship experience and are sometimes referred to as co-survivors.

The term survivor (or co-survivor) can also inspire a variety of feelings, with some connecting to it as a representation of hopefulness and accomplishment and others finding it inadequate and disconnected from their reality. This can be especially true with a disease like chordoma, where in some cases there is no clear end to treatment and the term remission is not often applied.

No matter how you define these terms for yourself, the Chordoma Foundation is here to support you along every step of your journey — before, during, and after treatment.

Survivorship care

The end of treatment is a unique time that can be both stressful and exciting. The shift from managing the physical effects of treatment in the short term to the physical and emotional ups and downs of coping with life as a survivor in the long term is experienced differently by each person.

Cancer survivorship care focuses on the overall health and well-being of a person who has been through treatment for cancer. It includes the physical, emotional, spiritual, and practical issues a cancer survivor (and sometimes their loved ones) may face beyond diagnosis and treatment. Survivorship care addresses:

  • Appropriate follow-up care and monitoring, including coordination of primary care physician and specialists
  • Physical effects of treatment
  • Social, emotional, and spiritual effects of dealing with cancer
  • Ongoing economic impact of cancer treatment
  • Any other quality of life issues affecting the survivor or co-survivor(s)

With input shared by you, our community, we have developed survivorship resources to empower you to:

  • Access in-depth information, resources, and guidance specifically tailored to address the side effects and quality of life issues that most frequently affect individuals after being treated for chordoma
  • Get the care and support needed to address these issues and live the fullest lives possible

Resources for chordoma survivorship

Knowledge is essential in getting the best treatment for chordoma and for getting the right survivorship care, too. The Chordoma Foundation website is a wealth of information on what to expect after treatment and how to get the best follow-up care. You will find information on managing side effects, consensus guidelines on the role and value of palliative care, and schedules of monitoring after treatment.

Clival and upper cervical spine side effects

Learn about how to manage challenges with vision, hearing, speech and swallowing, pain, endocrine function, balance, and sinuses.

Learn more

Mobile spine and sacral side effects

Learn about how to manage challenges with swallowing, mobility, pain, bladder, bowel, and sexual function.

Learn more

Pain management

Pain is common when dealing with any type of cancer, including chordoma. Learn more about ways pain can be managed.

Learn more

Emotional wellness

Just as you would seek support to address any physical challenges related to chordoma, it is also important to care for your mental and emotional health. There are ways to manage your feelings and support emotional wellness throughout your journey.

Learn more

Cancer-related fatigue

Many people who have or had cancer experience fatigue. Find out some of the causes of cancer-related fatigue and how to manage it.

Learn more

Balance and mobility

Read about how chordoma treatment can affect your balance and ability to move around freely, and what to do about it.

Learn more

Palliative and supportive care

Palliative care is often confused with end-of-life care, but they are not the same. The goal of palliative medicine is to improve the health and well-being of people who are living with a serious or chronic illness.

Learn more

Survivorship care plans

When your chordoma treatment ends, your care team should provide you with information on follow-up care and how to manage side effects.

Learn more

Working after a diagnosis

Understanding workplace rights, resources that are available, and talking with your medical team about how treatment may impact the work you do, can be helpful in making a plan when thinking about how you will handle your workplace responsibilities.

Learn more

Preparing for life after treatment

Learn about the realities of the recovery period, including possible complications from treatment and what you can do to prepare for them.

Learn more

Health emergencies

A few simple things can help you prepare for an unexpected health emergency.

Learn more

Find a specialist

The Survivorship Specialist Directory in our online community allows you to share information with one another about any doctors or specialists who have been helpful in addressing your survivorship and quality of life concerns.

Search for a specialist

Survivorship survey results

The Chordoma Foundation is a resource for you to learn more about quality of life needs, find care to address those needs, and get support from other patients, survivors, and co-survivors in the chordoma community.

In order to learn how we can best meet your needs, we conducted a survey to learn about the issues you’re facing and the resources that have helped. Thank you to those of you who took the survey!

See the survey results

Connect with the chordoma community

Support from someone who's been there can make all the difference.

A rare disease like chordoma can be lonely, so we provide ways for patients, survivors, caregivers, and co-survivors to connect with one another.

Peer Connect

Peer Connect is a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Trained Peer Guides are available to support chordoma patients who are newly diagnosed, patients in active treatment, survivors, caregivers, family members, or friends.

Connect with a Peer Guide

Chordoma Connections

Chordoma Connections is a private, online community where chordoma patients and their loved ones can come together in one place to exchange information, share experiences, and support one another.

Join Chordoma Connections

Virtual support groups

Our professionally facilitated virtual support groups, where you can come together with other people affected by chordoma to support and learn from one another, make new connections, and exchange information. The groups meet once a month on Zoom.

Attend a group meeting

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.

Additional survivorship resources

You may also find survivorship resources from the following cancer organizations helpful in learning about life after treatment, survivorship care, and how to address quality of life needs.