I will give you a little background for those who aren't/weren't aware. In October 2019, I went to the Dr. to have what was believed to be a ganglion cyst removed. Prior to 2019, I had three (3) physicians look at the bump on my ankle only to be told that it was nothing to be concerned about. So, what did I do? I believed them. It grew larger and was starting to bother my range of motion and was becoming an eye sore. I went in to have it drained in October 2019 and unfortunately it was a solid mass. Per the Dr, there was still no cause for concern, but they ordered an MRI. The results came back, and it was just a benign tumor that needed removal. Great! Scheduled surgery and was in and out in a couple of hours. Dr. said everything was great and it was nothing to worry about. That was until I got a call four days later from the Dr. telling me it was cancer and that they were referring me to Levine Cancer Institute for treatment. My heart stopped, and a ringing in my ears so loud that I couldn't concentrate on anything else. I cannot remember one word the Dr. said after the "C" word. My son was at basketball tryouts for his 6th grade team, and my husband was there to pick him up. I sat alone in my backyard in stunned silence. I immediately called my husband, and the only words I could get out were, "it's cancer." He thought I was kidding. The fear, anxiety, unknowing and fragility all hit you a once. I knew this had been in my body for YEARS! I was expecting the worst. I will spare you the details of the next couple of weeks because they were some of the worst moments of my life. I had scan after scan to determine how far this had spread while we waited to hear what type of cancer it was. On October 31, 2019, we learned that it had stayed local in my right leg, which was as good news as we could have received. My cancer type: Clear Cell Sarcoma.
I'm going to give you a little information on Clear Cell Sarcoma. Sarcoma is a very rare cancer usually seen in the bones and soft tissue. It is generally found in teens and young adults in their 20's. How rare, you ask? According to the American Cancer Society, about 13,400 new soft tissue sarcomas diagnosed in 2023. However, I have Clear Cell Sarcoma ("CCS"), a RARE form of a RARE cancer. Lucky right? There are roughly 1,600 people diagnosed with CCS every year. The survivability rates of CCS are about 60% at five years and 50% at ten years. Most CCS do not respond well to chemo or radiation; most treatment is surgery to remove the sarcoma (any type of sarcoma).
My treatment for CCS was a resection surgery in my right ankle/lower leg (the clinical term is a limb salvage surgery). Essentially, my surgeon removed any muscle or tendon that the tumor touched. This gives someone with sarcoma the best chance for no reoccurrence (it coming back). I had this surgery in December 2019 and it came back with clear margins, meaning no cancer cells left behind. WHEW!!! I had monitoring tests and scans every three months. This type of cancer tends to metastasize (spread) to the lymphatic system (lymph nodes) and the lungs. This was the plan for two years and then it would move to every six months until I reached five years. I made it two years and six months (May 2022) until I had a questionable spot on a MRI higher up on my leg than my original tumor. I had finally just gotten to a point to where I could breathe a little. I was starting to think that I may get to live long enough to see my son graduate high school and be able to plan for the future. The shock value of a questionable scan was gut-wrenching. I was FINALLY starting to put this behind me. This "thing" that had so consumed my life that I was a shell of my former self. The Dr. wasn't certain, so we opted for a biopsy, and the cancer had returned. Gut punch.
So, after the initial shock of it all, I decided to take the "been there, done that" approach. I can do this again; I've been here before. I was going to pull myself up by the bootstraps and get through this again. So, in August 2022, I underwent another leg surgery to remove the tumor and the surrounding muscle and tissue. I healed up, and we took a celebratory vacation during my son's fall break in October. Ready to put this all behind me again.
Had my 3-month scan in November 2022, it was inconclusive. No biggie because I just had surgery, and inflammation can throw these things off. We've been through all this before. We will rescan in 3 months. Since the initial cancer findings, I have always been very self-aware of my body. In December 2022, the section between my surgery sites started looking off. I thought it was swelling. then I felt a tiny something. I held off on calling the Dr because I was sick around Christmas. I decided to wait until the New Year and see if anything was still off with my leg. I called, and they got me in for a MRI the same day. Went for my results the next day......my cancer has returned for a THIRD time. This cannot be happening again. I cannot look my son in the eye and tell him for a THIRD time that I have cancer. I can't. I cannot see his face and his devastation. This just cannot be real. How much more can my little family of 3 take?
This time the surgery is going to be a bit different. Well, a lot different. My team of doctors did not want to give me a solid choice, even though they knew which one they recommended. I (well, my family and I) have been given the choice of two surgeries. OPTION 1: Since so much muscle, tendon and tissue has already been removed from my lower leg, there isn't much left to give us clear margins (no present cancer cells). We could try to have another limb salvage but that would remove all the muscle, tissue and skin that has been affected by the tumor, which would result in my foot no longer functioning (think no feeling and drop foot - where you cannot control your foot) and on top of that have a 50/50 chance that the cancer will return. It would also mean multiple surgeries to take tendons, muscle and skin from other parts of my body. Or OPTION 2: amputate my leg below the knee, and after I heal, fit me with a prosthetic and have a 10% chance for a reoccurrence.
Given those two options I opted to meltdown. I have no idea of what the Dr said after that other than he wanted me to meet with a young lady that had the same surgery as I would be having if I chose. OK whatever, nothing is going to make this better. I wanted to throw myself off the parking deck at the hospital. I am obnoxiously independent. Obnoxiously. What in the hell would I do with only one lower leg? Thankfully my Dr suggested I get a second opinion and asked permission for his other patient to reach out to me. We have had 2 second opinions, which made the path that we SHOULD take very clear. I met with my doctor's other patient, Jenn, and she was the one that made it clear to me what decision I NEED to make. I met with her in person; it was two hours of clarity. We are pretty much the same person (same personality, same independence and same determination), only difference is she is five years my junior. I credit her for helping me be at peace with my decision. And also showing me that I will be coming out of the other side as a better, stronger and fiercer woman than I was before. I can do this!
My little family of 3 had many discussions about the options. My 15 yr old son was steadfast in his decision from the beginning. No one knows the strength of this child. He is to be admired and to be praised. He is a rare find. After I gave him the two options, he responded without hesitation that "He needed me to be here with him; I need my mom," and that will stick with me forever. My poor husband, we have been together 23 years, and had our fair share of struggles, but he couldn't commit to a decision. After meeting with the other Dr.'s, he is also firm in his decision. Sooooo.
FEBRUARY 15TH will be the first day of my new life. Our new life. I have made the impossible and difficult decision that the Dr,'s are right, and I need to have my right lower leg amputated (we actually call it a pedicure in my house b/c I will not say that word). The past three years have been so difficult, and we have kept the majority of it to ourselves and immediate family. Why? I have no idea; maybe we are just private people, maybe I was ashamed, maybe I just didn't want to talk about it? I have now realized that I need to share my story because (a) it is about to be VERY obvious, and (b) maybe I can help someone else.
I will be updating this blog throughout my journey. I also have an idea of how to get more people involved and a way to make sure everyone lives their lives to the fullest. We aren't guaranteed tomorrow, and we must start acting like it! Together, we will Make It Count For Cort! Stay tuned......
Love, Cort
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