I was diagnosed with Stage 4 Clear Cell Sarcoma in 2023 at the age of 42. It all started in October 2022 when I felt a mild discomfort around my left ankle. At first I thought it was because I was sleeping in a weird position so I just brushed it off. The discomfort continued and in November 2022, I decided to see a local podiatrist. He did an ultrasound in his clinic and told me I have tendonitis. He sent me home with a brace for my ankle and told me to wear it daily.
My discomfort continued and around January/February 2023, the discomfort turned into pain and I noticed bruising around my ankle. I went back to the podiatrist and after an ultrasound and x-ray, he noticed a small mass around my ankle. He said the mass was pressing on my nerve which was the cause of the pain. He suggested surgery to take the mass out and assured me that it is very “rare” for mass around the ankle to be cancerous.
Around March 2023, I was scheduled to have the surgery but I started developing unexplained fever. At this point, I can no longer put weight on my left foot and I started noticing lumps growing on my foot and one in my calf. The podiatrist refused to proceed with the surgery until my fever is completely gone. I went to my primary doctor and took multiple trips to the ER but no one can figure out why I kept having fever. My husband and I kept insisting that the fever was related to what’s going on with my ankle but no one agreed. They tried to draw fluid from the mass but could not get any.
Finally, in one of my ER visits, they admitted me to the hospital and the attending physician consulted with an infectious disease doctor. He tested me for Epstein-Barr (mono) and the result came back positive. I felt a sense of relief that they finally found the reason for my fever and couldn’t wait to feel better so I can proceed with the surgery. Still, none of the doctors I have seen mentioned anything about sarcoma or the possibility of the mass in my ankle being cancerous.
In April 2023, the podiatrist finally agreed to do the surgery. When I woke up, he told me he had never seen anything like what I have and the condition was much worst than what he expected. He took the masses out from my ankle and sent it out to pathology. He could tell at that point that I have cancer and decided to leave my surgical site open for “staging” purpose by an oncologist.
When the pathology confirmed clear cell sarcoma, the tumor in my calf has grown exponentially and I found out later that I also had tumors behind my knee that were going into my bones. By the time I got to Mayo Clinic for a second opinion, I have metastasis in my lymph nodes in my groin and the tumors grew back in the same exact spot around my ankle and foot. They also found a nodule in my left lung but thankfully, the biopsy came back negative for malignancy.
My orthopedic oncologist at Mayo said the progression was too aggressive and a hip disarticulation amputation was the only option to stop the spread. It was a very difficult decision but I’d choose my life over my limb over and over again. Though my surgeon cannot guarantee that amputation will completely stop future metastasis, I was willing to do anything to have more time with my sweet family.
On April 2024, I just celebrated my 1 year cancerversary and coming up in June 2024, I’ll be celebrating my 1 year ampuversary. It’s not easy to be hit with the news of having stage 4 cancer AND having to lose my leg but I am extremely thankful to be alive. Prior to being diagnosed, I have never heard of sarcoma much less clear cell sarcoma. Unfortunately, it seems like a lot of doctors have never heard of it either. This is why sarcoma is often misdiagnosed.
I hope that my story will spread awareness to others but most importantly, I hope that my children will always be proud of their mommy for being a warrior.
Words of Wisdom:
Advocate and speak up for yourself. Sarcoma is rare and with over 100+ subtypes, it’s hard for doctors to know everything. Get 2nd, 3rd or 4th opinion if you know something is wrong. Most importantly, live and savor the present moments because tomorrow is never promised.
