In June 2021, Michelle Hughes, then 34 years old, collapsed at home two weeks after giving birth to her son. A CT scan revealed numerous inoperable lung and liver tumors, and she was diagnosed with an ultra-rare sarcoma called epithelioid hemangioendothelioma (EHE). Doctors informed her that there were few treatment options and she had a life expectancy of three to five years. However, a sarcoma specialist provided her with hope by sharing the story of a patient who had lived with EHE for 20 years. This drastically shifted Hughes’ mindset and she began to focus on living her life to the fullest.
Hughes’ journey with EHE began when she was pregnant with her first daughter in 2016 and started experiencing sharp pain in her abdomen. Doctors initially diagnosed her with a gallbladder issue, but an ultrasound revealed a hemangioma on her liver which did not explain her symptoms. Over the years, the pain persisted even though the mass on her liver did not grow. After the birth of her second daughter, doctors were still unable to determine the cause of her pain. It was only after the birth of her son that Hughes collapsed and was diagnosed with EHE.
With a grim prognosis of only a few years to live, Hughes refused to accept defeat and sought out an experimental treatment that stabilized her cancer growth. She then embraced a lifestyle of exercise, healthy eating, and activities that brought her joy. Despite facing tough moments and severe side effects from the medication, Hughes persevered and completed a triathlon on the third anniversary of her cancer diagnosis. She aims to live her life out loud and inspire others by sharing her journey on social media.
Epithelioid hemangioendothelioma is a rare cancer that primarily affects individuals between the ages of 30 to 50. The symptoms of EHE can include coughing, breathing difficulties, abdominal pain, fever, swelling, weight loss, and skin lumps. Treatment options vary due to the rarity of the condition, and patients may undergo surgery, chemotherapy, radiation, immunotherapy, targeted therapy, or monitoring of tumor growth. Hughes’ tumors have shown minimal growth, indicating a positive response to her current treatment plan.
Despite the challenges she faces, Hughes remains grateful for the moments she is able to experience and the time she can spend with her family. She acknowledges the survivor’s guilt she may feel at times but continues to choose a life filled with joy and meaningful experiences. By living her life out loud and sharing her story, Hughes hopes to create lasting memories for her children and change the perspective of what it means to live with Stage 4 cancer. She encourages others to find joy in their lives and do what makes them feel alive, despite the obstacles they may face.
