We know that receiving a chordoma diagnosis and making decisions about treatment can be overwhelming, frightening, and come with many questions. So while it may be challenging to start considering the “after” before you’ve begun, we also know that many survivors in our community wish they had known more about what treatment recovery might be like before starting their treatment.
This page was informed by the wisdom of survivors in our community to help you learn about the realities of the recovery period, including possible complications from treatment. We hope it will help you better prepare for life after treatment.
Prehabilitation, or “prehab,” is a way to use the time before your treatment starts to get ready for what’s to come. The goal of a prehabilitation plan is to prepare you both physically and mentally for upcoming treatment, which can help you feel more in control of the process, reduce side effects and complications, and make recovery easier.
In prehabilitation, you can expect that you’ll be asked to focus on or make adjustments to:
Nutrition (e.g. variety of foods, protein intake)
Physical activities (e.g. physical therapy, exercise routines)
Emotional wellness strategies (e.g. coping with stress, emotional support system)
Substance use (e.g. smoking cessation, reduced alcohol intake)
Talk with your doctor about what prehab options are available to you as you plan for treatment. Even if you do not undertake a specific prehabilitation plan, talking with your doctor about your overall well-being and general lifestyle can help you decide what you can do to be at your best before having surgery or starting radiation.
To learn more about prehabilitation for cancer treatment, check out these trusted sources:
Side effects from chordoma treatment vary from person to person, both in the type of side effects they experience and the severity of the side effects. That is because side effects depend on the tumor location, which nerves are affected by the tumor or treatment, the type of treatment you receive, and your overall health. Your doctor should be able to give you an idea of the types of side effects you can expect, their severity, how to report them to your care team, and how they can be managed.
The most common side effects chordoma patients report dealing with include pain, fatigue, mobility issues, vision issues (for clival tumors), bladder and bowel dysfunction (for sacral tumors), as well as emotional challenges after treatment has ended. Resources are available on our website to help you learn more about managing these various issues.
Palliative care is a specialized form of care meant to help patients have the best quality of life possible while living and dealing with a serious illness or disease. The goal of palliative care is to prevent or treat the symptoms of a disease and the side effects of its treatment. It is recommended that all chordoma patients seek the services of a palliative care team to help manage recovery from treatment.
Because palliative care is sometimes confused with hospice care, hearing a doctor suggest a palliative care specialist might be unsettling. But these forms of care are not the same and there is no cause for concern. A palliative care specialist can help you learn about and coordinate the services you need to manage pain and other side effects so you can live your best life while dealing with chordoma.
Talking with your medical team prior to treatment can help you understand and prepare for the days, weeks, and months after treatment. Below are some questions to ask that can help you have these discussions.
Preparation
What can I be doing now to prepare my body for the upcoming treatments? Is prehabilitation an option for me?
Who can I talk to about mental and emotional stress, depression, or anxiety, if needed?
Will I be able to work during and/or after treatment?
Treatment
What side effects should I expect from radiation during and right after the treatments?
What side effects might develop months or years from now? (e.g., mobility issues, hearing loss, vision loss, neuropathy, hormone, or other issues)
What are my palliative care options and when can I start receiving this care? (e.g., pain management, physical and occupational therapy, physiatry, nutrition, counseling, etc.)
Recovery
What will my recovery period be like? What type of rehabilitation therapy will I need and for how long?
What mobility and/or functional impairments might I experience as a result of surgery? How long will these last?
When can I exercise? What kind of exercise is best?
What will my daily life be like once I recover from treatment?
How can I continue to access palliative care after my main cancer treatments are complete?
The Chordoma Foundation is a resource for anyone affected by chordoma, at any stage of your journey. We're here to help you understand the disease, its side effects, find qualified doctors, and connect with others in the chordoma community.
Chordoma Foundation Patient Navigators are available to help connect you with resources regarding preparing for and navigating life after treatment.
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 today to connect with others and learn about their experiences.
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 child’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.