Diagnosis: Stage 4 incurable Sarcoma, a very rare cancer Epithelioid Hemangioenothlioma (EHE).
Prognosis: 1 to 2 years with no standard treatment.
Every face of cancer has a story and this is mine...
In November of 2017, I started feeling chest and lower back pain. Concerned, I went to my GP and an X-ray showed I had calcified nodules on my lungs. I was told it was probably an infection and was referred to a respirologist. From there I spent over a year getting more X-rays, CT and bone scans, and going to many doctor appointments. Still I had no answers. I was told it was not cancerous and that it most likely was an infection that my body fought off. My pain increased as well as my fatigue within that year. In November of 2018 I developed pleural effusion and thickening around my right lung but still there was no reason revealed.
On Feb 1st 2019 I was scheduled for a biopsy on the thickening of my right pleura. At that time the surgeon ended up draining 2 litres of fluid from my pleura and a pleurex catheter was put in to drain my lungs weekly.
On Feb 11th 2019 I met with my respirologist for the results. I was diagnosed with a very rare cancer Epithelioid Hemangioenothlioma (EHE) stage 4: prognosis 1 to 2 years with no standard treatment. 1 in a million is what I was told. I was crushed. How could this be when I was told it was not cancerous? It took a year and a half to determine this? Emotions were trembling. My family and their future was all that I could think of.
I was then sent to BC Cancer in Vancouver where they confirmed the diagnosis and also confirmed it was now in my liver. I was put on the “watch and wait” treatment. Meaning no treatment at all.
My wife and I couldn’t stand still. We pushed and pushed our oncologist here. We even went to City of Hope in California for a 2nd opinion and also got DNA sequencing done there. Diagnosis was the same and unfortunately no treatment was found in the sequencing either.
Back at BC Cancer Vancouver I was eligible and did the Personalized Onco-Genomics (POG) to help understand what might be enabling it to grow and to potentially develop treatment strategies to block its growth. The goal is to use the information to direct patients toward targeted therapy clinical trials whenever possible. From there they found Sorafenib, Sunitinib, and an IV chemo treatment that may help. I am currently on Sorafenib. January 2020 I have my next CT in hopes for stability.
We need funding for more research here in Canada. There is little to none. Please help us raise awareness and the resources to research EHE.
I am 38 married with 2 boys ages 3 and 6 living in Port Moody, BC.