Decisions about how you handle your workplace responsibilities after receiving a chordoma diagnosis are complex and personal.
Planning how and when you will work will depend greatly on the type of work you do, the treatment you receive, your overall health, and the resources available to support you. You may choose to work through treatment, to return to work after a short leave, or to take an extended leave from the workforce. Additionally, as you undergo treatment, you may find you need to make adjustments to your plan with regard to work.
Here, we’ve put together a list of things to know and consider that can help you make a plan that fits your specific needs, even if they change over time.
When making a plan about work, it is important to turn to your trusted sources of information and support first. By talking with your medical team and support network you will better anticipate what your needs are and what support you will have to meet them.
Talk with your medical team
Your doctors can provide details on your treatment plan, including any possible side effects or any physical limitations that might affect your ability to work. This should include information on how long you may experience these effects, what support you may need to cope with them, and whether any specific activities should be avoided.
Talk with your family, friends, and support network
Each person has a unique set of family and friends that make up their support network at home. Before you make a plan of action, it can be helpful to speak with those closest to you about your anticipated needs, how you feel they may impact your ability to work, and any concerns or fears you have about managing your work and finances as you pursue treatment. In addition to providing emotional support, you may find that your network wants to support you in tangible ways that can impact the plans you make.
Some people may take short periods of time off from work for appointments, treatment, management of symptoms, side effects, etc. Others may take a leave of absence to address their medical needs and then return to work later. When making decisions about work, there are many things to consider, including aspects of workplace practices and laws that may apply to you.
After learning about your treatment and considering your work responsibilities, you may decide to take a leave from the workforce for an extended period of time. You may also plan to return to work after treatment, but decide after undergoing treatment that you need to change your plans for returning to work.
Anticipating or experiencing a lack of energy, physical or cognitive impairments, or high levels of stress can all be reasons for not returning to work. If you need to take an extended leave from the workforce, know that you have not failed and that you are not alone. From our survivorship survey, we know that a significant portion of survivors in our community found returning to work after treatment challenging: 24% of people with skull base chordoma, 28% of people with mobile spine chordoma, and 16% of people with sacral chordoma reported an inability to return to work or school.
At the same time, we know that not returning to work can have a serious financial impact on you and your family. If you are in the U.S. and need to take an extended leave from the workforce, there are community resources and state and federal benefits that can help. At the federal level, the Social Security Administration offers disability benefits that can support people when cancer diagnosis or treatment prevents them from performing work. Social Security Disability Insurance (SSDI) pays benefits to you and certain members of your family if you have worked for a certain length of time and paid Social Security taxes. The Supplemental Security Income (SSI) program will pay benefits to adults and children with a disability according to financial need.
If you are in another country, please refer to our International pages to learn whether similar programs exist where you are. If you are planning to take leave from the workforce for an extended period of time, we encourage you to contact our Patient Navigators to help you identify additional local resources that may offer financial assistance for you and your family.
The Chordoma Foundation is a resource for anyone affected by chordoma, at any stage of your journey.
In addition to helping you understand the disease, treatment options, and side effects, our Patient Navigators can also help connect you with resources regarding making decisions about managing work while preparing for or going through treatment.
Chordoma Connections provides a private space 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 learn how others have managed work while facing a chordoma diagnosis and treatment.
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.