Sarcoma Survivor Stories: Meet Jess Lee
Cancer Sub-type: Low-Grade Fibromyxoid Sarcoma and Sclerosing Epithelioid Fibrosarcoma
Q: When were you originally diagnosed and what sub-type were you given? Did you have any pre-symptoms that you overlooked? Were you initially misdiagnosed?
A: I was diagnosed in June 2014, but it all started that April. I woke up with a sore chest and midline after a rigorous personal training session the night before. Looking back the only pre-symptom I had was a sharp unusual pain when I sneezed or coughed. I went to my general practitioner who sent me to get an abdominal ultrasound, which resulted in an abdominal CT for further clarification, which then lead to a chest CT. It was after these scans that they discovered a “mass” that required a core needle biopsy. I was told to expect the worse because masses in this area are very uncommon. The biopsy came back as a benign myxiod cardiac growth. A cardio thoracic surgeon removed the mass. Four weeks after my surgery I was back at work and planning my wedding (which was only a few weeks away). I received a call from my surgeon to tell me the results of the histology. My diagnosis was Low-Grade Fibromyxoid Sarcoma and Sclerosing Epithelioid Fibrosarcoma. The tissue and diagnosis was sent to America due to the fact that Australian Pathologists were unable to identify it. I was referred to a Radiation oncologist and started six weeks of Radiotherapy. In the midst of all of this new normal I was getting married!
Q: What was your initial reaction?
A: I honestly do not remember my reaction in that moment. What I do remember is that I am a planner and was weeks away from getting married and there was no way cancer was preventing that from happening. I did take a few weeks before I chose to tell my family and friends about my diagnosis. At the time, my husband and I were living remotely due to his work commitments so that was easy for us to do. I am the oldest of four siblings and we really only have each other, so I wanted to provide clarity, hope, and not fear. I took on the approach of planning and completing radiation whilst getting married, and I did just that!
Q: What was your treatment plan?
A: In 2014 the Multi-Disciplinary team decided against mass resection to the area. Since at the time of my initial surgery I did not have clean margins because they did not suspect Sarcoma. So radiation was the best treatment option to kill any cancer cells.
Q: What do you feel is the most important thing when going through cancer treatments?
A: I think that there are a lot of important factors when going through cancer treatment. The ability to have open conversations with your medical team that includes them willing to admit when they are out of their depth, which mine luckily did. Family and friends are crucial, although I found that some family members made my cancer all about them and needed me as a source of comfort. I found that to be very disappointing and annoying. Additionally, maintaining the routine of doing the things you did before cancer diagnosis. This helped me to keep a bit of independence as well as helping me distinguish myself from my cancer. At the end of the day, we are not our disease.
Q: Did you have a recurrence and how long were you in remission before this occurred?
A: I had a local recurrence in December 2019. A large mass was found in my chest wall again through routine check-ups. Five years during every check-up there was discussion as to whether the cancer was recurring or just changes to the area due to surgical scarring/radiation.
Q: What was your next course of treatment after the recurrence?
A: I spent four months speaking with surgeons, radiation oncologists, chemotherapists and proton beam radiotherapy clinicians. Standard radiation was a no go as I had maxed my radiation limits. Chemotherapy was not an option because there was evidence that it would not be effective for killing the cancer cells. Proton beam therapy was squashed as there was little evidence on the safety measures on standard radiation patients, as well as it would require international travel and with COVID-19 traveling was no longer an option. In April 2020 I had a massive resection to my sternum costal cartilage, diaphragm and rectus muscles. I was reconstructed with abdominal flaps and mesh. Unfortunately, margins were still not clear and I had another resection in June. Further resection to my sternum and costal cartilages was performed and resulted in half of my sternum being removed. Once again the margins were not clear. I was offered the option of removing my whole sternum and replacing it with a 3D titanium printed implant. I have currently placed this on hold for now as I have a 3 year old and a 2 year old and the surgery would be severely debilitating in my stability and strength through my chest. For anyone with my sub-type I have learned that there is limited evidence around removing and not removing the micro cells that remain, playing no significance in the expected outcome or prognosis.
Q: What is the best piece of advice you can offer someone going through a similar situation to what you went through?
A: Find something that keeps you happy, so you do not become the cancer or the treatment. That is only a small part of your life. The things you will learn and find after treatment will be some of the best things that you will experience. Sure have your moments; cry, scream and eat all the chocolate but remember who you are and yes this bloody sucks right now, but it is not forever.
Q: What is one positive thing that has come out of your experience?
A: I was such a control freak, and now I just embrace the moment for what it is. Life really is beautiful, some people get a long one, and some people sadly do not. So don’t waste time saying poor me; just do what you want when you want. Smile, laugh, dance, take that trip, spoil your kids and buy them that toy. Try your hardest to live in the present moment, because that is all that we are guaranteed.