Our Patient Navigators can provide more information on managing side effects.
About 20 percent of chordomas form along the spinal column at the neck, chest, or lower back level. These three areas are known as the mobile spine. About 50 percent of chordomas form at the bottom of the spine, in bones called the sacrum.
People with mobile spine and sacral chordomas who have undergone surgery and/or radiation sometimes experience side effects and quality of life challenges in the months or years following treatment. These include:
These challenges are typically caused by compression of the spinal nerves or spinal cord as a tumor grows, nerve damage that occurs as a result of surgery or radiation, or damage to soft tissues around the spine.
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.
Our Patient Navigators can provide more information on managing side effects.
Learn more in our booklet, Treatment Information Series: Managing Mobile Spine and Sacral Side Effects
The mobile spine has three sections: cervical (neck), thoracic, and lumbar (lower back). The bones, or vertebrae, of the spine are the building blocks of the back and spinal column. The vertebrae and other parts of the spinal column protect the spinal cord, support head and body weight, and help the back move flexibly.
The number of vertebrae in each section of the spine varies. The cervical spine is made up of bones named C1-C7, the thoracic spine is T1-T12, and the lumbar spine is L1-L5. The sacrum is at the very bottom of the spine and has five bones, S1-S5. These bones fuse together into one larger bone mass by 30 years of age but are still referred to as separate bones. At the very bottom of the sacrum is the coccyx, which is made up of three to five fused bones. Some sacral tumors involve the coccyx.
Spinal nerves come in pairs. They emerge from either side of the spinal cord and exit through small openings between the vertebrae. Each pair connects the brain and spinal cord with a specific region of the body. The bundle of nerves at the end of the spinal cord is known as the cauda equina, because it looks like a horse’s tail.
There are 31 pairs of spinal nerves which are responsible for sensation, movement, and function in various parts of the body:
The spinal nerves are an important part of the peripheral nervous system (PNS). They transmit information to and from the brain and spinal cord — known as the central nervous system (CNS) — providing sensation and stimulation to the body and helping to regulate and control the functions of the trunk, internal organs, and lower limbs.
If you think of the CNS as the main highway, the PNS would be the smaller connecting roads, bringing signals in and out of the CNS.
Nerve damage or injury can interfere with the ability to transfer information from one system to another, causing neurological problems such as pain, weakness, abnormal sensations, changes in spinal reflexes, and loss of organ function.
The part of a spinal nerve where it first branches off from the spinal cord or cauda equina is called the nerve root. You might hear your doctors refer to this as the nerve root or they may use the terms nerve root and spinal nerve interchangeably.
Treatment provided by doctors and teams specializing in chordoma can significantly improve outcomes for those with mobile spine and sacral chordomas. However, because chordomas are located near vital nerves, organs, and arteries, treatment is often complicated and, in some cases, can lead to serious side effects.
Before you begin treatment, ask your doctors about the risks and what side effects are possible or likely, to ensure you are comfortable with the treatment plan.
The tumor itself can compress nerves as it grows.
When nerves are affected by a growing tumor, it may cause pain, numbness, or weakness in the arms, hands, legs, or feet; or bladder and bowel issues such as incontinence or constipation. These symptoms may go away or improve after the tumor is removed during surgery as long as there is no lasting damage.
Surgery can damage nerves and soft tissues.
Nerves can sometimes be damaged during surgery or must be removed completely along with the tumor. Side effects will depend on which nerves are affected. Surgical flaps, scarring, and metal hardware used for reconstruction may also damage soft tissues or cause side effects such as limited mobility and range of motion in the spine. Additionally, having multiple surgeries over time increases the risk of serious side effects.
Radiation can cause both short-term and long-term side effects.
These can be mild or severe and will depend on the area being radiated and radiation dose. Short-term side effects of radiation for mobile spine and sacral tumors can include fatigue and skin irritation or burns. These usually begin to develop after about 2 weeks of radiation treatments and may continue for 6 to 8 weeks after treatments end. Radiation can also cause side effects that develop months or even years after treatment. These are called late effects and can include soft tissue necrosis, neuropathy, or bladder, bowel, and sexual dysfunction.
Assessment and treatment will depend on what you’re experiencing but should always begin with a complete and thorough evaluation of your current symptoms and your chordoma treatment history. To make sure your doctor is prepared for your visit, be sure to have your medical records sent to their office before your appointment.
The sections below discuss side effects often experienced by mobile spine and sacral survivors as well as possible treatments. If you are experiencing any of the issues in this list for the first time or they are suddenly getting worse, let your doctors know. New or worsening symptoms can be a sign of new tumor growth, or they may be late effects of treatment as described above.
Inability to control the muscles of the face, mouth, tongue, or throat can cause difficulty speaking. Symptoms include:
Dysphagia is the subjective sensation of difficulty swallowing. Types of dysphagia are specific to which part of your swallowing action — beginning a swallow (oropharyngeal dysphagia) or completing it (esophageal dysphagia) — is affected. In both cases, symptoms of dysphagia include:
Whether you have difficulty with speech, swallowing, or both, the following treatments may help:
Treatment should address the cause of your specific balance issues, and can include:
Pain can affect every part of your life — daily living activities like getting dressed and eating, enjoying being around others, sleeping, and working or going to school. It can also affect your mental and emotional health, causing feelings of isolation, exhaustion, anger, fear, anxiety, and depression.
But you don’t have to accept pain as a normal part of having chordoma. It is important to remember that pain can be managed, and it is your right to get treatment for it. Your pain may not always be completely relieved, but your doctors can work with you to control and manage it as much as possible.
Neuropathic pain is caused by damage to spinal nerve tissue. Nerves can be damaged by a growing tumor or by treatments such as surgery, radiation, and some types of systemic therapy. It can also feel like numbness, tingling, swelling, or muscle weakness in different parts of the body.
Nociceptive pain is caused by tissue injury, damage, or inflammation. Nociceptors are sensory endings on nerves. If the pain is momentary, the nociceptors are signaling potential damage. When damage actually occurs, an inflammatory response is triggered and there will be lasting effects.
Treatments can include over-the-counter or prescription medications. Neuropathic pain can sometimes be treated with certain types of antidepressants and anti-seizure medications. Other treatments include nerve blocks, electrical nerve stimulation devices, palliative care, physical medicine and rehabilitation techniques, or low-dose radiation.
Integrative medicine strategies like acupuncture, massage, mental health counseling, meditation, and yoga can also be part of a comprehensive pain management plan.
Insufficiency fractures occur when normal pressure is applied to
weakened bones that are too fragile to support someone’s weight
when they perform daily activities like standing or walking, causing
them to fracture. While they can sometimes be asymptomatic, these
fractures usually cause a great deal of pain.
Insufficiency fractures are different from fractures caused by accident or injury and are often the result of damage to osteoblast cells in the bones caused by radiation. This damage is called osteopenia. Osteopenia typically occurs in the bones that are located in the area where radiation was given. For chordoma patients, this can be any of the vertebrae, as well as the ribs (thoracic patients) and pelvis (sacral patients).
Insufficiency fractures can sometimes be confused for metastatic tumor lesions, so your chordoma treatment team may conduct initial imaging tests like PET/CT scans, bone scans, and MRIs to assess the extent and causes of damage to your bones.
Bone endocrinologists and pain specialists should be involved in treatment planning. Most insufficiency fractures are treated noninvasively with bed rest, pain medication, and treatment for underlying osteoporosis or osteopenia.
If these treatments are not successful, surgeons, interventional radiologists, and /or neuroradiologists should be consulted.
Surgical interventions may include:
Depending on the tumor’s location and the extent of surgical resection, every survivor’s experience with bladder, bowel, and sexual function during and after treatment will vary. Dealing with these challenges is common for individuals with sacral tumors, but they are often not talked about or treated adequately. There are treatments and strategies that can help, though, so don’t hesitate to talk with your doctors if you experience these challenges.
If bowel, bladder, and sexual functions are affected immediately following surgery, they can sometimes be regained over time and with the help of physical medicine and rehabilitation specialists.
Surgeons and radiation oncologists who have experience treating chordoma can tell you what to expect regarding temporary and permanent loss of function. If you have not yet had treatment, be sure to ask what to expect after treatment and what your recovery will be like.
En-bloc (entire tumor removed in one piece) removal of tumors that involve S1 and S2 requires sacrificing the nerves, which will affect functions. Sometimes, if one of the S2 nerves is spared, some level of function might return, but it is unusual.
For tumors at S3 and below, if the S2 nerves are not damaged, it is possible to regain function in some cases. For tumors at S4 and S5, most functions can be preserved.
Most sacral chordoma survivors are dealing with bladder retention challenges; however, some have the opposite problem and experience bladder spasms and leakage.
Learning how to effectively manage your bowel issues can take a few weeks and sometimes even months, but patience and sticking to a routine will help. If things with your bowels change suddenly, though, or if there’s blood in your stool, talk with your doctor to see if you need a colonoscopy.
Cancer survivors can often experience a decreased interest in intimacy and sex following diagnosis and treatment, for many reasons — some physical, some psychological or emotional. In addition to these common challenges, many sacral chordoma survivors, both men and women, experience impacts to their physical ability to have sex. This can be experienced as decreased sensation, lack of lubrication, or inability to maintain an erection, orgasm, or ejaculate. Additionally, if you have difficulty controlling your bladder or bowels, intimacy can be challenging. There are ways to manage many of these issues, and some people find that sensation does return to some degree over time.
For women, start by talking with your gynecologist or primary care physician about your symptoms and what treatments are available.
Treatment for women includes:
For men, ask your chordoma team or primary care physician for a referral to a urologist who specializes in sexual function, preferably at an academic medical center.
Treatment for men includes:
Communication with your spouse or partner and your doctors is key for both men and women. It is important to determine what your goals are and what treatments are right for you based on those goals. Individual and couples counseling can help with these conversations and to determine what’s important to you.
Hear from patients and survivors
Improving control of these bodily functions is important for independence and quality of life. As part of our Chordoma Survivorship Initiative, we published a series of guest blogs written by sacral chordoma survivors and doctors about managing these issues.
Depending on the particular side effects you are experiencing, you may need to speak with more than one specialist to address them. Your care team may include rehabilitation therapists, neuro-endocrinologists, otolaryngologists, neuro-ophthalmologists, and others.
It is sometimes possible to schedule visits with specialists at the center where you were treated for chordoma. For instance, if you see your chordoma team in-person for follow-up visits, ask for referrals to other specialists in the medical center and make appointments to see the specialists while you are there for follow-up. You can then ask the specialist to consult with a specialist local to you so they can plan and follow your treatment together.
If you can’t be seen by a specialist at the center where you were treated, ask your chordoma care team for referrals in your local area. Some chordoma doctors will do consultations with local specialists, even if you haven’t seen them in person.
Seek out specialists at your nearest academic medical center. These
specialists will likely not have experience with chordoma, and that’s
okay. You and your chordoma care team can help educate them on
chordoma and your experiences with it.
Palliative care is an important part of cancer care. Sometimes called supportive care, it is recommended for all cancer patients from the time of diagnosis, through all stages of treatment, and after treatment is complete. It can address symptoms of the disease itself or side effects of its treatment.Chordoma experts recommend that all chordoma patients’ treatment plans and survivorship care plans include palliative care. No matter what treatment you have for chordoma, palliative care can help address pain, mobility and functional issues, mental and emotional health, nutrition, fatigue, and many other concerns to help you feel well and live fully while managing your chordoma.
Read more about palliative care
To help you find specialists to address the side effects of treatment, we created a Survivorship Specialist Directory within Chordoma Connections, our online community. It is a supplement to our Doctor Directory, an invaluable tool on our website you can use to locate surgeons, radiation oncologists, and medical oncologists who have extensive experience treating chordoma.
The Survivorship Specialist Directory allows chordoma community
members to share information about providers who have helped
address quality of life concerns, including pain specialists, urologists,
rehabilitation therapists, and more.
Search the Survivorship Specialist Directory in Chordoma Connections
Many care providers who can help you manage side effects won’t know a lot about chordoma. And that’s okay. The Chordoma Foundation developed a fact sheet you can use to help your doctors, nurses, and other healthcare providers learn about chordoma. It includes general information on chordoma, how it’s treated, and the common side effects of those treatments. There is also space for you to add information about your situation so your providers can understand how chordoma has affected you personally. Share this fact sheet with your providers to help them learn about chordoma.
If you are caring for someone with mobile spine or sacral chordoma who is experiencing side effects, there are a number of things to keep in mind and ways you can support them. Remember that if they are dealing with more than one type of side effect, they may require the care of multiple types of doctors and specialists. It can be a lot to keep track of. Things you can do include:
Help schedule and manage doctor’s visits, writing down a list of questions to ask at each appointment beforehand.
Find a good cadence of checkups with different doctors and specialists, making sure the number and timing of appointments is manageable and that information is being shared across the care team, such as care instructions and medication lists.
Watch for worsening side effects, particularly after changes in your loved one’s care plan or periods of higher stress.
Consider adjusting your living environment to accommodate your loved one’s side effects. This could mean removing items that may be tripping hazards or creating a place in the bathroom where they can manage their bladder and bowel needs.
Get support for yourself as well. Seeing your loved one experience ongoing challenges can be emotionally and psychologically taxing, and having someone to talk to can make a big difference. If you are the spouse of a sacral survivor, it can be helpful to get support for any changes in your relationship that might result from chnages in your spouse’s sexual function.
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.
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.