Newly Diagnosed

Whether you are newly diagnosed or have been living with EHE for a while, you are not alone. We know there are many unwelcome emotions, symptoms, and worries associated with an EHE diagnosis and we hope this page will give you a good starting point in supporting you in this journey. We highly encourage you to browse our website, join our mailing list, and connect with The EHE Foundation on social media @ehefoundation on Facebook, LinkedIn, Instagram, and Twitter.

Our Patient Services Team aims to help you:

CONNECT – Connect your medical care team with an oncologist familiar with EHE and connect with others living with EHE.

STAY INFORMED – Learn about the latest news and research related to your EHE diagnosis through our website, articles, emails, and videos. Sign up for emails here.

MAKE A DIFFERENCE – Advocate for all EHE patients. Share your EHE story and contribute to research as a participant of our patient survey or as a biobank donor.

Here are some suggestions and resources that might help right away:

Connecting with an EHE Expert

EHE is extremely rare and many medical providers do not have experience treating this unique cancer. Finding a sarcoma provider with EHE experience can be daunting and frustrating, but it is a vital part of the diagnostic and treatment process. There are EHE specialists across the nation and many are accepting new patients. Some doctors are willing to give second opinions and partner with your oncologist to advise on your further care or treatment plan (at your oncologist’s request). Some providers also offer virtual visits. Please visit our Provider Directory here.

Another resource for finding a sarcoma specialist is SARC, Sarcoma Alliance for Research through Collaboration. It is an organization that aims to improve outcomes for all sarcoma patients. SARC offers a list of medical providers located at SARC Centers around the US. You may access that list here.

Collaborative Medical Care

Rare cancer medicine is best practiced when patient care is a team effort.  Your medical oncologist should work closely with you, other medical professionals associated with your care, and often times EHE researchers, to develop a comprehensive treatment plan that is individualized to you.  Due to many factors, not every EHE patient will have similar care or treatment plans.   This team philosophy is often referred to as Collaborative Care and works best when multiple providers communicate about a patient’s diagnosis and treatment.  An EHE patient’s care may include primary care, surgical oncology, radiology, pathology, symptom or pain management, surgery, chemotherapy, radiation therapy, nutrition, social work services, psychiatry, and other areas. EHE patients and caregivers often choose to take an advocate role themselves.  Some patients also opt to use a Patient Navigator to assist not only with navigating their patient care, but also to help with financial, legal, and social support.  These trained professionals help EHE patients deal with insurance companies, second opinions, and many other unique needs that come with a rare cancer diagnosis.

Organizing Your Medical Records

In most cases, medical records are kept electronically by the medical facility.  However, most EHE patients have found it to be extremely helpful to maintain their own personal records.  This allows the patient to advocate for their care, ask the right questions, and have a good record of various conversations, results, etc. There are several ways to organize personal health records.  Many patients recommend using a 3-ring binder and simply request a printed record at each appointment.  Sections can be separated by date or categories (treatments, tests, doctors, appointment types, etc).  Some patients opt for an all-electronic version. They bring their lap top or tablet with them to every appointment.  There are also online services available.  Whichever method you chose, please understand a patient’s health record is confidential and should be protected at all times.

Support System

There are various levels of support and resources available to EHE patients, but we understand that not all types of support systems are the right fit for everyone.  We encourage every patient to use a personally preferred support system to help cope with the emotional and practical challenges of EHE.  There are many individual, peer-to-peer, small group, or large group support systems that are held in communities, online, or by phone.  Finding an emotional outlet at a time that is right for you will be key and may be part of your Collaborative Care.

Many members of our EHE community take advantage of the EHE Facebook Support Group. It is a large group of worldwide patients, caregivers, and supporters that provide EHE support, experiences, and insight.   This Facebook group is not operated by The EHE Foundation, but many of our team members and volunteers are active in the group.   Facebook groups are not intended to be a substitute for professional medical advice, diagnosis, or treatment.

You can find more information about support groups here

Advocating for Your Care

EHE research has advanced over the last decade and it is important that you understand how you can advocate for your own care. In addition to recommending that you seek guidance from a provider that has experience treating EHE, we suggest that you have a good understanding of your own diagnosis and treatment. We have many tools to guide you and your provider along the way.

A critical part of improving rare cancer care is the use of scientific publications and articles. It is how scientists and clinicians either share results of a study they conducted or how they share their review from other published research. Most articles are written for other scientists and clinicians, but it is becoming more common for patients to review these articles. Patients aren’t expected to understand the scientific background in each article, but may want to share specific findings with their doctor. You can access our EHE Library here.

We also have several video presentations from EHE 360, a two-day international, scientific meeting consisting of worldwide EHE experts to gain consensus on the state of EHE research and clinical management of patients. Click here to browse the various video presentations.

We hope this information is helpful as you start your EHE journey. We welcome you to reach out to us with questions and truly value your feedback. You can reach our Patient Services Team here or at 1-877-460-4240.

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