Chordoma Survivorship Initiative
Your journey doesn’t end when treatment ends, and neither does our support. Since our inception, the Foundation has worked to improve the lives of those affected by chordoma and lead the search for a cure. 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. Along with this comes the need for new information and resources that help you live well during and after chordoma treatment. With input shared by you, our community, on how we can address this need, we are excited to expand upon our existing services with the launch of this initiative.
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 after being treated for chordoma
- Get the 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 has 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 in the spring of 2020 and are eternally grateful for the legacy she leaves behind in making life better for those who are still battling.
What is survivorship?
Cancer survivorship is not a term everyone is familiar with or comfortable using. 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 a cancer 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.
The medical care community doesn’t lavish as much attention and resources on patients in the aftermath of an initial cancer battle; yet this is where the living takes place — and unfortunately where much of the suffering happens. Survivorship means far more than surviving — it means living well. It means living richly among families and friends despite disability and physical pain and medical challenges. It means developing a new and healthy perspective on all that is important and beautiful and meaningful.
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 Chordoma Survivorship Initiative will equip patients with the tools and resources they need to thrive despite their diagnosis.
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 survivor (and sometimes their loved ones) may face beyond diagnosis and treatment. Survivorship care addresses:
- Appropriate follow-up care and monitoring, including coordination of primary care physician and specialists
- Physical effects of 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 or co-survivor(s)
The Chordoma Foundation is a resource for you to learn more about quality of life needs, find care to address those needs, and get support from other patients, survivors, and co-survivors in the chordoma community.
In order to learn how we can best meet your needs, we conducted a survey to learn about the issues you’re facing and the resources that have helped. Thank you to those of you who took the survey! View the initial results »
Resources for chordoma survivorship
Knowledge is essential in getting the best treatment for chordoma, and it is no different when it comes to survivorship care. The Chordoma Foundation website is a great source of information on what to expect after treatment and how to get the best follow-up care. This includes consensus guidelines on the role and value of palliative care, schedules of monitoring after treatment, and information on quality of life challenges often experienced after treatment.
You may find the following resources helpful:
- Survivorship care plans
- Chordoma fact sheet for non-chordoma providers (PDF)
- Palliative and supportive care
- Living Well webinar: Caring for yourself during stressful times
- Follow-up after treatment for a new diagnosis
- Follow-up after treatment for a local recurrence
- Follow-up during or after treatment for advanced or metastatic disease
- Treatment Information Series: Pain Management booklet (PDF)
- Questions to ask about pain management (PDF)
- Pain journal (PDF)
- Webinar: Options for comprehensive pain management
In the coming months, look for in-depth information on managing additional quality of life issues such as anxiety and depression, balance and mobility, bowel and bladder dysfunction, double vision, and more.
Additional survivorship resources
You may also find survivorship resources from the following cancer organizations helpful in learning about life after treatment, survivorship care, and how to address quality of life needs.
Adjusting to the “new normal” is important as you live with, through, and beyond your chordoma. Resources specifically tailored to chordoma provide tools, options, and information to help survivors live their best lives.
Find care or assistance
We know it’s essential to find doctors with chordoma expertise when seeking treatment for the disease. It is also important to find the right survivorship care to address any concerns you may have because of the chordoma or its treatment.
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 are dealing with active disease and are in the process of making treatment decisions. 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.
To help you find specialists to treat the many medical, emotional, practical, and social needs that may arise following treatment, we created a Survivorship Specialist Directory within Chordoma Connections, our online community. It is a supplement to our Doctor Directory, an invaluable tool for locating surgeons, radiation oncologists, and medical oncologists who have extensive experience treating chordoma. The Survivorship Specialist Directory is a resource that allows you to share information with one another about any doctors or specialists who have been helpful in addressing your survivorship and quality of life concerns. This includes specialists ranging in expertise from physical therapy to neurology to acupuncture and more.
Not a member of Connections yet? Join today!
I hope that people embrace the numerous services and specialties that are available to meet them where they currently are along their journey. There are dozens of survivorship resources and services available, but patients must find them. By having a Survivorship Specialist Directory created by people who have been through what we have and socializing the game-changing service providers, the chordoma community will ideally be better poised to negotiate the different paths and detours along their own chordoma journeys.
No one should face chordoma alone, and that is equally true after treatment. Talking with others about what to expect after surgery or radiation can often help you prepare to face the “new normal”. Hearing how others have dealt with side effects like radiation necrosis, double vision, or incontinence, which can severely impact quality of life, can be helpful in determining what care to seek out to address these concerns.
Chordoma Connections, the Foundation’s online community, is an excellent resource for exchanging information about survivorship needs and supporting each other. In addition to the new Survivorship Specialist Directory, use the Survivorship 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.
Everyone’s journey is different. We are extremely fortunate that the Chordoma Foundation has put together a team and resources to help support those affected by chordoma with information and guidance tailored to their individual journey.