Chordoma Foundation

Improving lives after treatment ends: Introducing the Chordoma Survivorship Initiative

Thanks to advances in research, improvements in care, and access to more treatment options, more people than ever before are living with, through, and beyond chordoma. To more holistically support anyone who has been affected by chordoma, we are proud to announce the launch of a new Chordoma Survivorship Initiative.  

Cancer survivorship is not a term everyone is familiar with or comfortable using. For some, the idea of survivorship feels like it doesn’t really apply to them. There are a number of definitions of survivorship, some of which refer only to the period of time after initial treatment for cancer has ended, while others state that survivorship begins at the time of diagnosis. Family members, friends, and caregivers are also considered part of the survivorship experience and are sometimes referred to as co-survivors. 

The term survivor (or co-survivor) can also inspire a variety of feelings, with some connecting to it as a representation of hopefulness and accomplishment and others finding it inadequate and disconnected from their reality. This can be especially true with a disease like chordoma, where in some cases there is no clear end to treatment and the term remission is not often applied. 

No matter how you define these terms for yourself, the Chordoma Foundation is here to support you along every step of your journey — before, during, and after treatment.

Survivorship care

The end of treatment is a unique time that can be both stressful and exciting. The shift from managing the physical effects of treatment in the short-term to the physical and emotional ups and downs of coping with life as a survivor in the long term is experienced differently by each person.   

Cancer survivorship care focuses on the overall health and well-being of a person who has been through treatment for cancer. It includes the physical, emotional, spiritual, and practical issues a cancer patient or survivor (and often their family members) may face beyond diagnosis and treatment. Survivorship care addresses:

  • Appropriate follow-up care and monitoring, including coordination of primary care physician and other specialists
  • Physical effects during and after treatment 
  • Social, emotional, and spiritual effects of dealing with cancer
  • Ongoing economic impact of cancer treatment
  • Any other quality of life issues affecting the survivor and co-survivor(s)

After treatment completes there can be a sense of sadness or unspoken fear. Wait, what?! We’re no longer “fighting cancer” and people are labeling us as “cancer survivors” but have we actually “beat cancer”? We can silently feel fear… one that we can’t openly discuss because family and friends will try and help by giving pep talks about their uncle who “beat liver cancer… you can too!” Survivorship is acquiring the tools available in dozens of variations to help us live our lives with a focus on thriving, not just existing in-between scans in fear of a recurrence… one that may never happen.

Chris Jones

co-survivor parent of a chordoma patient; Chair of the CF Community Advisory Board

The Chordoma Survivorship Initiative

Since our inception, the Foundation has worked to improve the lives of those affected by chordoma. Our Patient Services help achieve this goal by focusing on education, navigation — in particular, providing personalized guidance to affected individuals and families around the world — and support.

To date, the main focus of these services has been helping you get the best treatment possible for chordoma. But your journey doesn’t end when treatment ends, and neither does our support. Now — thanks to input shared over the past few years by you, our community—we are excited to expand upon our existing services with the launch of this initiative and the release of a series of resources specifically tailored to individuals who have completed initial chordoma treatment. 

The goal of the Chordoma Survivorship Initiative is to empower you to:

  • Access in-depth information, resources, and guidance specifically tailored to address the quality of life issues that most frequently affect individuals who have been treated for chordoma
  • Get the best care and support needed to address these issues and live the fullest lives possible.

This initiative and the resources it provides would not be possible without the generosity of many in our community, notably, Dr. Stephanie Neuman, whose philanthropy enabled its launch. Stephanie was a chordoma patient and longtime friend and supporter of the Foundation who cared deeply about ensuring that everyone affected by chordoma have the support needed to live a full and high-quality life both during and after treatment. We were devastated to have lost Stephanie to the disease this spring and are eternally grateful for the legacy she leaves behind in making life better for those who are still battling. 

The launch of the Chordoma Survivorship Initiative is tremendous news for the chordoma community. It will bring dedicated focus to helping chordoma survivors live well — physically, mentally, emotionally, financially — after their initial intense battle with chordoma, and as they grapple with the reality of their diagnosis and all that it means. The Survivorship Initiative will equip patients with the tools and resources they need to thrive despite their diagnosis.

Edward Les, MD

clival chordoma survivor

Finding a specialist for your specific needs

While the Doctor Directory on our website is an invaluable tool for finding surgeons, radiation oncologists, and medical oncologists who have extensive experience treating chordoma, there are many other medical, emotional, and social needs that can arise following treatment. 

However, finding providers in your local area to treat these needs who also understand or are willing to learn about chordoma can be difficult. To bridge this gap, one of the first tools we created as part of the Survivorship Initiative is a Survivorship Specialist Directory, now available in our private, online community, Chordoma Connections. The directory includes doctors and other specialists ranging in expertise from physical therapy to endocrinology to wound care (and beyond!). Populated in large part by Chordoma Connections members who have had direct, personal experiences with these specialists, it is designed to help you locate providers equipped to address your specific needs. And, you can submit the names of specialists you’ve been treated by and would recommend to others as well.

Have you had a great experience with a specialist you’d like to add to the directory?

Head over to Chordoma Connections to submit their information! Not a member yet? Join today! (It’s free!) In addition to housing our Survivorship Specialist Directory, Chordoma Connections is a great place to exchange information and support one another.

Please note that the specialists listed in the Survivorship Specialist Directory have not been vetted by the Chordoma Foundation nor does their listing imply endorsement of their services. We are making this resource available as a means for our community members to share information with one another. 

What’s to come

In the coming months, you can expect to see new and expanded resources, including:

New information on our website and in educational materials

The follow-up care and survivorship pages currently on the Chordoma Foundation website include a range of helpful resources from global consensus guidelines on follow-up care to information about the role and value of palliative care. In the coming months, look for in-depth information on common quality of life issues such as  pain, chronic sinus issues, incontinence, double vision, and more.

Personalized, one-on-one navigation

Our Patient Navigation Service provides personalized information and support to anyone affected by chordoma, at any stage of their journey. Our Patient Navigators have assisted over 2,000 people, most of whom have been recently diagnosed or are dealing with recurrent or metastatic disease. However, our Patient Navigators are a survivorship resource as well, helping to answer your questions, provide information about quality of life issues, assist you in locating or accessing care, and connect you with others in the chordoma community who share your experiences.

Support and information from others in the community

Chordoma Connections, the Foundation’s private online community, is an excellent resource for exchanging information about survivorship needs as well as to support each other through the “new normal”. In addition to the new Survivorship Specialist Directory, use the Quality of Life forum (previously called Living Well) to post questions, ask for advice, or share things you’ve found helpful. Peer Connect is our free, confidential, peer support program that connects anyone touched by chordoma with a Peer Guide whose experiences are similar. Later this year, our Peer Guide training will become available online, with a focus on survivorship needs.

Stay up to date with our progress on the Chordoma Survivorship page of our website.

 

We need your help!

In order to best meet your needs, it is critical for us to hear and learn from our community members about the issues you’re facing, the resources that have helped, and how the Foundation can assist in better meeting your needs. Stay tuned for information about our survivorship survey, coming later this summer, and don’t hesitate to reach out in the meantime with feedback or ideas.

After treatment, there is sometimes a gap in contact with – and information from – the health care team. There are many points along the journey where a patient is looking for input and guidance on new developments in the field, help dealing with the long-term side effects of treatments, potential clinical trials, or quality of life.  Sometimes, it just helps to have someone to talk to who understands the chordoma journey, listens, and is willing to help inform and guide. The Chordoma Foundation and its amazing staff excel at this.

Steven Golick

clival chordoma patient

How do you feel about survivorship? What are your hopes for this initiative? Let us know at support@chordoma.org. We’d love to hear from you!



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