Living with a Chordoma

Living with a chordoma can be a frustrating experience. Whether you are preparing for surgery or awaiting a follow-up imaging scan, the many uncertainties can be challenging to deal with. While understanding more about chordomas can help to alleviate some of these anxieties, it is also important to find a balance between managing your condition and pursuing a fulfilling life. In this article, we explore common questions that may arise when living with a chordoma.

Chordomas are a type of slow-growing tumor, which means that they tend to grow slowly over time. The rate of growth can vary depending on the chordoma’s location and stage. In some cases, chordomas might not cause symptoms for years or even decades, whereas in other cases they can grow more quickly and cause symptoms to appear sooner.

It is difficult to provide an exact rate of growth for chordomas because it can vary widely from case to case. Also, a chordoma can reappear after treatment even if it seems to have been completely removed, and such recurrent tumors can grow more quickly than the original tumor. Always consult with a specialist in these type of tumors, such as a neurosurgeon with expertise in chordomas, to get a more accurate understanding of the rate of growth of the tumor and the best course of treatment.

The outcome for people with a chordoma varies depending on the location and stage of the tumor. In general, people with a chordoma in the sacral or cervical spine have a better prognosis than those with one in the skull base. When the chordoma is localized (meaning it hasn’t spread elsewhere from the tumor site) and can be completely removed surgically, the 5-year survival rate is around 70%. When the tumor cannot be completely removed, the 5-year survival rate drops to around 40%. However, survival rates can vary depending on the specifics of your condition.

The likelihood of chordoma recurrence depends on several factors, including the stage and location of the tumor, the type of treatment received, and the patient’s overall health. In general, the chance of recurrence is higher for patients with a higher stage tumor and for those who have not received adequate treatment.

The recurrence rate for chordoma can be as high as 50% for patients with a high-grade tumor that is not completely removed by surgery. For patients with a low-grade tumor that has been completely removed, the recurrence rate is generally lower (around 20%).

A recurrent tumor can grow back at the primary site or in distant parts of the body, such as the lungs. Regular follow-up care is extremely important for detecting and treating any recurrence as early as possible.

The treatment and prognosis for chordoma can vary depending on the location and stage of the tumor, as well as your overall health. Surgery is typically the first line of treatment, which might be followed by radiation therapy and/or chemotherapy.

Life after chordoma treatment can depend on the extent of the surgery and success of the treatment. Some patients can experience side effects from treatment, such as fatigue, pain, and difficulty with movement. There may also be numbness or weakness in the area around the surgery. Depending on the location and extent of the surgery, there may be changes in bowel or bladder function. Physical therapy and rehabilitation can help manage these side effects and improve function.

Regular follow-up care is important for anyone with a chordoma because the cancer can reappear. Close monitoring and surveillance can help detect and treat any recurrence as early as possible.

In general, the outcome for patients with a chordoma is better for those with a more localized, earlier stage tumor. With advancements in treatments and technologies, the survival rate for patients with a chordoma is improving.

Be sure to work with a team of healthcare professionals, including a cancer specialist, to develop a treatment plan and manage your care after treatment.

If a chordoma is not treated, it can continue to grow and spread to other parts of the body. The tumor can cause damage to surrounding tissue and organs, leading to symptoms such as pain, weakness, and difficulty with movement. The cancer can also spread to other parts of the body, such as the lungs, which can be life-threatening.

An untreated chordoma can also lead to complications such as compression of the spinal cord or brainstem, which can cause neurological symptoms such as weakness, numbness, and loss of function.

Seek medical attention if you have symptoms that suggest a chordoma, such as a persistent, localized pain on the skull base or spine associated with neurological symptoms like weakness. A combination of diagnostic tests, including radiography (X-rays), computed tomography (CT), magnetic resonance imaging (MRI), and biopsy, will be used to confirm the diagnosis.

Chordoma is a rare cancer, and early diagnosis and treatment can greatly improve your outcome.

• Chordomas are a type of slow-growing tumor that can form in the spine or skull base.
• The outcome for patients with a chordoma varies depending on the tumor’s location and stage, but in general, the outcome is better for people with a chordoma located in the sacral or cervical spine than in those with a tumor in the skull base.
• The rate of growth can vary depending on the location and stage of the tumor, but a chordoma generally grows slowly.
• Consult with a specialist to get a more accurate understanding of your particular condition and the best course of treatment.

• National Cancer Institute: Chordoma
• Chordoma Foundation
• NIH Genetic & Rare Diseases (GARD) Center: Chordoma
• Cancer Net
• American Cancer Society