Comprehensive palliative and supportive care

Palliative care is an important part of cancer care. Sometimes called supportive careCare given to improve the quality of life of patients who have a serious or life-threatening disease., it is recommended for all cancer patients from the time of diagnosis, through all stages of treatment, and after treatment is complete to address symptoms of the disease itself or side effects of its treatment.

Chordoma Global Consensus GroupA 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

Chordoma experts recommend that all chordoma patients’ care plans include palliative care from the time of diagnosis, through all stages of treatment, as well as after treatment ends.

No matter what treatment you have for your recurrenceTumor that has grown back after initial treatment. Recurrences can be isolated or multifocal, local or regional., palliative care can help address pain, mobility and functional issues, mental and emotional health, nutrition, and many other concerns to help you live well while managing your chordoma.

Palliative care 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.

Palliative care is often confused with hospiceA 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 specifically for the end-of-life period, generally for patients expected to live for less than six months. Palliative care is recommended for patients at any stage of a life-threatening or chronic illness. The intent is not to treat or cure your disease, but to ease any symptoms and side effects you are experiencing while preparing for, undergoing, and recovering from treatment as well as once treatment is over.

World Health Organization (WHO) definition of palliative care

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with a life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.³

In addition to managing physical needs, palliative care also includes other sources of support to meet your emotional, spiritual, practical, and social needs, and to help you and your family plan for the future. You and your care team will determine which treatments and services are right for you based on your symptoms and other individual needs.

Physical medicine and rehabilitation, anesthesiology, psychology, social work, radiology, and pain medicine are just some of the specialties that can provide palliative care to chordoma patients.

Questions to ask about treatment

To help you get the best care possible, we developed lists of questions with the input of chordoma patients and caregivers that can help you think about what you want to ask your doctors, including questions about palliative care.

View question lists »

A comprehensive palliative care plan should consider:

Pain management, including careful assessment of the cause of your pain. For instance, it is important to determine whether the pain is the result of your original tumor, new tumor growth, or past treatments. Most chordoma patients experience both somatic painPain that results from the activation of sensory receptors even in the absence of injury or damage. It is one of the most common types of pain experienced by cancer patients. and neuropathic painChronic pain caused by nerve damage., which should be correctly diagnosed and treated using pain management guidelines and specialized pain management techniques as needed. Management of pain should be a critical part of every chordoma patient’s care plan.
Careful management of other symptoms such as nausea and vomiting, fatigue, breathing or swallowing difficulties, mobility issues, and loss of bowel, bladder, or sexual function.
Psychological support to help you cope with the emotional difficulties of chordoma. Anxiety and depression are common for many patients dealing with cancer and should be addressed. This can include family-oriented supportAny type of psychosocial, emotional, or other support that includes the family as well as the patient. to help you and your family find ways that you can best support each other.
Assistance considering end-of-life decisions, such as the creation of advanced medical directives, as well as determining what type of home or other care setting will be best for you and your family that will ensure continuity of care.

Request help

If you would like more information on palliative care our Patient Navigators are here to answer questions and help you get the best care possible. Our Patient Navigators are available Monday through Friday from 8 AM to 5 PM Eastern Time.

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References and further reading

Stacchiotti S, Sommer J, Chordoma Global Consensus Group. Building a global consensus approach to chordoma: a position paper from the medical and patient community. Lancet Oncology. 2015 Feb;16(2):e71-83. doi: 10.1016/S1470-2045(14)71190-8.
Stacchiotti S, Gronchi A, Fossati P, et al. Best practices for the management of local-regional recurrent chordoma: a position paper by the Chordoma Global Consensus Group. Ann Oncol. 2017 Jun 1;28(6):1230-1242. doi: 10.1093/annonc/mdx054.
WHO Definition of Palliative Care. World Health Organization website. https://www.who.int/cancer/palliative/definition/en/.
Palliative Care in Cancer. National Cancer Institute Website. https://www.cancer.gov/about-cancer/advanced-cancer/care-choices/palliative-care-fact-sheet. October 20, 2017.
What is Palliative Care? Get Palliative Care website. https://getpalliativecare.org/whatis/.

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.

Chordoma Foundation