Navigating the Mental Health Challenges of an EHE Diagnosis and Treatment

A cancer diagnosis can be one of the most daunting experiences in life, not just physically, but mentally and emotionally as well. The journey through diagnosis, treatment, and everything in between often feels like a roller coaster, filled with uncertainty, fear, and a range of intense emotions. It’s important to acknowledge these challenges and find ways to cope effectively. Here’s an outline of the mental health difficulties that many individuals experience with an epithelioid hemangioendothelioma (EHE) diagnosis and some strategies to help you navigate this tough journey.

Mental Health Challenges You May Be Experiencing

Emotional Overload

The moment you hear the words “rare, incurable cancer, and epithelioid hemangioendothelioma” your world changes. Any cancer diagnosis is difficult, but being diagnosed with an ultra-rare sarcoma is especially complex. You might feel a flood of emotions—shock, disbelief, anger, sadness, and anxiety. These feelings are completely natural and valid. Resources on our Newly Diagnosed page can help new patients find their footing.

Fear and Uncertainty

The fear of the unknown can be overwhelming. Your diagnosing physician may be as new to this disease as you are. Questions about treatment efficacy, potential side effects, and your future can lead to significant anxiety. This uncertainty can sometimes be harder to manage than the physical symptoms of cancer. It’s critically important to seek additional consultation with sarcoma experts experienced with EHE to confirm your diagnosis, and before determining a treatment plan. The EHE Foundation’s Provider Directory is a good place to find experts experienced with EHE.

Physical and Cognitive Impact

EHE and treatments you may undergo can lead to physical and cognitive changes including fatigue, pain, and difficulty concentrating. These symptoms can exacerbate feelings of frustration, helplessness, and depression. It’s important to advocate for your tolerance of treatments and their side effects. There is no one-size-fits-all treatment for EHE, so you and your healthcare team must communicate openly about your quality of life.

Changes in Identity and Self-esteem

Being diagnosed with an ultra-rare cancer such as EHE can alter your self-image and sense of identity. You may struggle with changes in your appearance, physical abilities, and the integration of your diagnosis into your family or work life. There is no right or wrong way to define yourself after diagnosis, but changes in how you define yourself are common. Working with a trained therapist or palliative care specialist can help nurture this new part of you.

Social Isolation

Despite the best intentions of friends and family, you might feel isolated. Others may not fully understand what you’re going through, or you might withdraw to avoid burdening them with your struggles. While these feelings are typical and understandable, it’s important to identify and stay connected to your support system.

Coping Strategies

Seek Professional Help

Don’t hesitate to reach out to mental health professionals, such as psychologists or counselors, who specialize in cancer care. They may never have heard of EHE, but as trained professionals, they can provide supportive care. Therapy is a safe space to express your feelings openly without the fear of burdening caretakers. It is also the perfect environment to develop coping strategies.

Connect with Support Groups

Joining a support group, whether in person or online, can help you connect with others who understand what you’re going through. Sharing experiences and advice with fellow patients can reduce feelings of isolation and provide practical tips. Facebook offers several support groups for the EHE community, including specific groups for patients and caregivers. Search for EHE on Facebook and they will come up. Note that these support groups are not affiliated with The EHE Foundation.

Educate Yourself

Knowledge is empowering. It’s a critical pillar in an EHE patient’s journey. Learn about your diagnosis and treatment options. Understanding what is known about EHE can reduce fear and help you make informed decisions about your care. Presentations recorded at the annual EHE 360 Global Patient Conference provide fundamental information about EHE, research, and treatment. Another important resource is the Consensus Paper on EHE Management. With both patient-friendly and scientific versions available, you and your healthcare team can plan your treatment based on the opinions of global EHE experts.

Mindfulness and Relaxation Techniques

Practices such as mindfulness meditation, deep breathing exercises, and yoga can help manage stress and anxiety. These techniques can bring a sense of calm and help you stay grounded in the present moment. These can be especially helpful during times of acute stress or pain.

Maintain Open Communication

Keep the lines of communication open with your loved ones. Share your fears and needs with them. Letting them in can provide emotional relief and help them understand how best to support you.

Set Realistic Goals

Setting small, achievable goals can give you a sense of purpose and control. Celebrate your progress, no matter how small. This can boost your mood and self-esteem.

Engage in Creative Outlets

Engage in activities that bring you joy and allow you to express your emotions creatively. Whether painting, writing, playing music, or crafting, these activities can be therapeutic and provide a sense of peace.

Prioritize Self-care

Focus on self-care activities that nurture your body and mind. This includes eating a balanced diet, getting adequate sleep, and engaging in gentle physical activity as advised by your healthcare team.

Practice Gratitude

Even on the toughest days, try to find moments of gratitude. Keeping a gratitude journal can help you focus on positive aspects of your life, improving your overall outlook and mental well-being.

If it Resonates With You, Embrace the EHE Community’s Unofficial Motto: Just Live!

Coined by an EHE patient, our community has adopted Just Live! as our unofficial motto. For most it means to live your life, whatever that looks like, on your terms, prioritizing people and activities that bring you joy, happiness, and peace. If this concept doesn’t resonate with you, that’s okay too, because you’re an important part of this community.

Your EHE diagnosis brings with it a myriad of mental health challenges, but remember, you don’t have to face them alone. Utilize the resources available to you. It’s not just okay to seek help and take steps to prioritize your mental health, it’s highly recommended. By acknowledging your emotions and actively working on coping strategies, you’ll be equipped to navigate this journey with resilience and hope.

Written by staff member and EHE patient, Maggie Cameron and reviewed by Dr. Maeve Baechler, EHE patient

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