After treatment for advanced or metastatic disease
After you complete treatment, you will need to maintain a consistent schedule of follow-up imaging to check whether the tumor has returned or spread to other areas.
It is important for a chordoma expert who knows your case to review your follow-up scans and compare them to your previous ones. Depending on the treatment you’ve had, this monitoring may be done by your surgeon, radiation oncologist, or medical oncologist. If you traveled for your treatment and it would be difficult for you to travel back to your treating doctor for each follow-up appointment, discuss this with your doctor to make a plan for having the scans done locally and the images sent to your doctor for review.
Follow-up after treatment for advanced or When tumors have spread to other parts of the body from the original tumor site.: A multidisciplinary, international group of over 60 doctors who have extensive experience caring for chordoma patients. The group is responsible for developing and publishing consensus guidelines, based on all available medical and scientific evidence, for the treatment of primary and recurrent chordoma. recommendations
The Chordoma Global Consensus Group guidelines state that you should have an A type of imaging scan that is used initially to help diagnose chordoma, as well as during follow up to check for recurrence or metastasis. every 3 to 6 months for the next 3 years following any treatment you have for recurrent, advanced, or When tumors have spread to other parts of the body from the original tumor site. disease. In some cases of advanced or metastatic disease treatment is ongoing, and regular MRIs will be done during treatment to monitor how well the treatment is working. Beyond that, there is not enough data to make the same recommendations for everyone. Your doctors will use their best judgment based on the state of your disease, general health, ongoing treatments, and other factors to decide on follow-up care. You should be vigilant about caring for yourself and checking in with your doctors.1
When your treatment ends, life doesn’t necessarily return to the way it was before you were diagnosed with chordoma. In fact, it’s very common for patients and caregivers to refer to post-treatment life as “the new normal.” Your family, work, health, body, and relationships can all be affected by the disease, the treatments, and everything else you have gone through along the way. You may not be able to go back to exactly how things were before, for many reasons, and it is okay to take time to learn what’s normal for you now.
In the past, the reality of life after treatment — the experiences and ongoing needs of cancer survivors and their loved ones — was often overlooked by healthcare teams. But that’s changing.
Survivorship is the area of cancer care that focuses on the time after treatment ends. When you finish any type of treatment, a doctor or nurse should sit down with you and create a survivorship care plan. This is a detailed plan that includes a full record of your diagnosis and treatment history, as well as a schedule of the checkups and follow-up tests and imaging you need. Care plans may also include information on:
From the National Cancer Institute:
In cancer, survivorship focuses on the health and life of a person with cancer post-treatment until the end of life. It covers the physical, psychosocial, and economic issues of cancer, beyond the diagnosis and treatment phases. Survivorship includes issues related to the ability to get health care and follow-up treatment, late effects of treatment, second cancers, and quality of life. Family members, friends, and caregivers are also considered part of the survivorship experience.4
Addressing side effects
Continuing with any type of rehabilitation therapy you might have been receiving following surgery or radiation
Referrals or recommendations to specialists to meet any physical, social, emotional, or financial needs you are experiencing
If you are nearing the end of treatment, ask your care team about creating a survivorship care plan with you.
Palliative and supportive care
Care given to improve the quality of life of patients who have a serious or life-threatening disease., also called Care given to improve the quality of life of patients who have a serious or life-threatening disease., can improve the quality of life and well-being of patients dealing with a serious illness by preventing and treating symptoms of the disease or the side effects of its treatment. Care given to improve the quality of life of patients who have a serious or life-threatening disease. is often confused with A specific type of supportive care that is provided to patients who are near the end of life and have stopped treatments meant to cure or control their disease. The main goal is to help patients feel as comfortable as possible, and to support both patients and family members through the end of life process. If a treatment option becomes available, patients can be taken out of hospice care and receive that treatment. care or end of life care, but they are not the same. Hospice care is intended for the end of life period, generally for patients expected to live for less than six months, while palliative care is recommended for patients at any stage of a life-threatening or chronic illness.
There is a community of chordoma patients, survivors, caregivers, co-survivors, and loved ones here to support you. Connect with others for support, perspective, and encouragement as you head into survivorship.
The Chordoma Foundation’s private online community is a place where individuals affected by chordoma can come together to exchange information, share experiences, and support one another. Within the community, there are two private groups, one for caregivers of pediatric and adolescent patients and another for young adult patients and their significant others. Both private groups were created to meet the unique needs of the pediatric and young adult members of our chordoma community.
Our free, confidential peer-to-peer support program connects anyone touched by chordoma with another person whose experiences with chordoma are similar. Trained Peer Guides are available to support patients who are newly diagnosed, patients in active treatment, survivors, caregivers, family members, or friends.
If you’re interested in talking to someone who has been through a similar chordoma journey, Peer Connect can help. Once registered, we will match you with a trained Guide who has had a similar experience with chordoma and who has had to face many of the same challenges that you now face. All Guides are trained to provide a listening ear, serve as a sounding board, and, if requested, suggest helpful information and resources.* The connection between you and your assigned Guide may involve only a few phone calls, or it may develop into a longer relationship, whatever is most helpful for you.
Benefits of the Peer Connect program
- Feel connected with others who understand your thoughts and feelings
- Establish trusting relationships
- Explore cancer resources
- Gain coping and communication skills that can be helpful in advocating for your or your loved one’s treatment
- Be heard and supported
*Peer Guides do not serve as health professionals and cannot provide medical advice. By participating in the Chordoma Foundation Peer Connect program, you acknowledge that you understand the program is for support purposes only and does not provide medical, legal, or psychological advice, diagnosis, or treatment. The Peer Connect program may provide helpful health-related information, but it is not intended to substitute for professional advice, diagnosis, or treatment.
Chordoma Survivors Support Group on Facebook
Newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community through a private Facebook group. This close-knit group exists to help answer questions, share personal experiences, and serve as encouragement throughout your journey with chordoma. Email approval from a group moderator is required simply to protect the privacy of the more than 1,800 members and prevent spammers from entering the private Facebook space. Please send an email briefly describing your relationship with chordoma to email@example.com, and you will receive a reply from a group administrator.
Please note: While many members of this Facebook group are involved with the Chordoma Foundation as volunteers and community advisors, the group is privately run and separate from the Foundation.
References and further information
The information on this page was developed by the Chordoma Foundation in consultation with members of the Chordoma Global Consensus Group. We would like to thank the members of the Chordoma Global Consensus Group for providing their expertise in the development of the original consensus guidelines and their review of this educational content.
The information provided herein is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your or your loved one’s physician about any questions you have regarding your or your loved one’s medical care. Never disregard professional medical advice or delay in seeking it because of something you have read on this Website.