Surviving with Chondrosarcoma

Chondrosarcoma is a rare cancer of the bone that most commonly occurs in the bones of the arms and legs, pelvis, and shoulder blade, although it can also be found in the spine and skull. Chondrosarcoma is a very serious disease: tumors can become large, compress critical structures, and spread to other parts of the body if not treated properly.

When a formal diagnosis is made, the tumor will be assigned a grade based on how abnormal the cells appear under a microscope. The higher the grade, the more serious and aggressive the disease. For example, a Grade 3 chondrosarcoma is generally associated with a lower chance of survival than a Grade 2 chondrosarcoma.

Some individuals with chondrosarcoma may have a single, accessible tumor that can be treated successfully with surgery alone. However, others may have an advanced form of the disease requiring more intensive treatment that includes radiation therapy and chemotherapy.

Dealing with chondrosarcoma is challenging, both physically and emotionally. Talk to your doctor about your medical questions or concerns, and seek support from family, friends, and support groups to help you through this difficult time.

The survival rate for chondrosarcoma can be different for each person, depending on the size and location of the tumor, its aggressiveness, and the patient’s overall health.

Survival rates give us an idea of how many people with the same type and stage of cancer are alive years after they are diagnosed. In other words, survival rates cannot tell us exactly how long someone will live, but they can help us understand the likelihood of survival to a certain timepoint based on the survival times of other individuals with similar clinical features.

Chondrosarcoma that occurs in only one area, known as localized chondrosarcoma, is typically associated with a better chance of survival after treatment. About 80%–90% of people with localized chondrosarcoma are still alive after 5 years.

If the cancer has spread to nearby areas, called regional spread, the survival rate is about 75%. But if the chondrosarcoma has spread to other parts of the body (metastasized), the survival rate is lower, with only about 20% of patients alive after 5 years. For chondrosarcomas in specific areas like the skull base and spine, the survival rates can vary depending on the grade of the cancer.

Chondrosarcoma is a kind of bone cancer that can be hard to cure, but it can be managed and controlled. The goal of treating chondrosarcoma is to remove the cancerous tissue and prevent it from spreading to other parts of the body. How well the treatment works depends on various factors, like the size and location of the tumor, how advanced the cancer is to begin with, and the overall health of the patient.

Remember that every person is unique, and survival times will be different from person to person. Ask your doctor about your specific case but remember that any estimate is based on large groups of people and cannot exactly predict what will happen to an individual.

When chondrosarcoma is localized and has not spread, surgery is typically the first treatment approach to remove the tumor. Depending on a tumor’s size, shape, and proximity to vital structures, the surgery can be straightforward or complex. After surgery, the medical team might suggest radiation therapy to help prevent growth of remaining tumor cells.

If the chondrosarcoma has spread to other parts of the body, the treatment plan may include a combination of surgery, radiation therapy, and chemotherapy. The goal is to control the cancer spread and alleviate symptoms. In some cases, radiation therapy and chemotherapy are given before surgery to reduce the size of the tumor and make it easier to remove.

However, achieving a complete cure for chondrosarcoma may not be feasible for all individuals. In such cases, the emphasis of treatment shifts towards enhancing the quality of life during the remaining time. The primary objectives are to alleviate symptoms, particularly pain, and to enable the individual to engage in activities they find meaningful before the end of life.

After treatment, some people with chondrosarcoma have successful outcomes and can go back to their normal activities. Others may experience long-term side effects from the cancer or the treatment, requiring adjustments to certain aspects of their lifestyle routines.

Although it is impossible to predict when one might receive a diagnosis of this rare bone cancer, there are steps you can take to collaborate more efficiently with your medical team to ensure timely initiation of treatment.

However, it is equally important to pause and ensure that the chosen treatment aligns with your goals and preferences. Additionally, selecting a competent medical team is essential to maximize your chances of achieving a complication-free survival after treatment.

People living with chondrosarcoma may experience ongoing health and personal concerns that may be challenging to manage. Some common issues include:

• Pain and discomfort: Patients may have pain or discomfort in the bone affected by cancer. Surgeries or radiation therapy might make it worse initially. To help manage these symptoms, doctors may prescribe medications or physical therapy.
• Fatigue: Cancer treatments can make a person feel very tired, both physically and mentally, which can make it difficult to perform daily tasks, go to work or school, or engage in recreational activities.
• Side effects of treatment: Treatments like chemotherapy and radiation therapy can have side effects, including nausea, vomiting, hair loss, and skin irritation.
• Financial challenges: Cancer treatment can cost a significant amount of money. Individuals with chondrosarcoma may struggle to pay medical bills, experience financial strain due to inability to work, and face additional expenses related to their illness (e.g., transportation to appointments, additional home support, therapy costs). This can make recovery and everyday life more stressful.
• Emotional distress: Being diagnosed with cancer and going through treatment can evoke feelings of sadness, anxiety, or uncertainty about the future. Patients may grapple with worries about the unknown or experience a sense of melancholy. Therapy or participation in support groups can be helpful to navigate through these emotions
• Changes to daily life: Cancer treatment can change a person’s daily routine. They might have to take time off work, miss school, or not be able to do things they used to enjoy. Coping with these adjustments can be challenging.
• Not knowing what will happen: Cancer treatment can be a long process, and it is hard to predict what will happen. People with chondrosarcoma might worry about if the treatment will work, cancer recurrence, and how it will affect their life.

While not everyone will encounter these challenges, it's beneficial to be aware of them and understand that there are available resources and strategies for managing and coping with these issues. Seeking advice and tips from fellow chondrosarcoma patients via support groups and national foundations can also be extremely valuable.

Caring for someone with chondrosarcoma can be challenging, but with the right approach, you can positively impact your loved one's life. Consider doing the following:

• Educate Yourself: Learn about chondrosarcoma, its treatment, and potential challenges. Understanding the condition will equip you with information to provide better support.
• Effective Communication: Maintain open and honest communication with the person you are caring for. Listen to their concerns, preferences, and feelings. Remember that emotions can influence the way that we communicate, and patience is critical during this time.
• Coordinate with the Medical Team: Stay informed about the treatment plan and coordinate with the medical team. Attend medical appointments when possible and ask questions to better understand the care needs. This can be extremely helpful, especially if the treatment schedule intensifies. 
• Monitor and Manage Symptoms: Be vigilant about changes in symptoms and report them to the medical team. Help manage pain and discomfort by helping the patient to follow prescribed medications and treatments.
• Provide Emotional Support: Receiving a chondrosarcoma diagnosis can be overwhelming for both the patient and their loved ones. Simply being at their side to listen to their feelings and worries can go a long way.
• Assist with Daily Tasks: Depending on how they feel, your loved one may need help with everyday things like bathing, getting dressed, or moving around. Offer to assist them, but also encourage them to do things on their own when they can.
• Encourage a healthy lifestyle: Help your loved one eat well and exercise regularly. This will make them stronger and improve their overall health.
• Respect Privacy: Although you might want to assist with everything possible, respect the person's privacy and give them space when needed. Everyone copes differently, and understanding their boundaries is important.

Caregiving can be demanding, so prioritize taking care of yourself too. Ensure you get enough rest, seek support from friends and support groups, and don't hesitate to ask for help when needed.

• Survival rates for chondrosarcoma depend on many factors like the size and location of the tumor, as well as its grade and stage.
• The higher the grade or stage, the worse the prognosis.
• Building a support network of your loved ones, medical professionals, and support groups can help you during this difficult time.

• Sarcoma Foundation of America
• The Liddy Shriver Sarcoma Initiative
• Chondrosarcoma Foundation
• National Brain Tumor Society
• American Brain Tumor Association