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Catherine Rosenberg - Patient Story

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"I’ve had an amazing experience with the compassionate and caring doctors, nurses, and nursing assistants at Fox Chase."

— Catherine Rosenberg, Lymphedema and Sarcoma Survivor

My cancer journey began in 1990 when I was eight years old. I was diagnosed with synovial sarcoma, a soft-tissue tumor that occurs near joints, most often the knee. My world was turned upside down. I wasn’t allowed to be in school or around crowds for almost eight months. 

My parents enlisted the best doctors. I had two surgical resections followed by the maximal radiation an adult can receive to one part of the body at the age of eight. 

My treatment was successful, and I’m now the longest living survivor of synovial sarcoma in the United States, with 27 years cancer-free. However, as with most cancer treatments, there were side effects. I developed severe swelling in my leg, a condition known as lymphedema.

For 25 years, I was cautious in my physical activities and managed the condition with manual lymph drainage therapy and by wearing compression wraps and stockings. Although I followed my doctor’s orders religiously, I still developed complications from my lymphedema, which is in my entire lower left leg. Unfortunately, I didn’t realize how bad this condition was for me until about 2004, when I was 22 years old and started to get cellulitis infections on a regular basis. These infections are very painful and always involved at least a one-week hospital stay.

I also experienced complications with my hip due to my extensive radiation treatment. In 2012, doctors determined I needed a hip replacement. After a few failed attempts to correct the issue, I was finally referred to Dr. John Abraham, an orthopedic oncologist at Fox Chase Cancer Center. From the moment I met Dr. Abraham, I knew he was the right man for the job. His compassion for the condition I was dealing with, coupled with his willingness to listen and understand, set him apart from many doctors.

I wasn’t going to let anything stand in my way. I was a top student, an athlete, and a computer whiz. I had earned my bachelor’s degree and two master’s degrees and was working as an elementary special education teacher in Little Egg Harbor, NJ.

In 2013, I underwent the total hip replacement. Now, three years later, my hip is still doing wonderfully. After my hip replacement, the lymphedema remained a factor, and in 2013, I dislocated my hip. By the fall of 2014, my infections were so frequent that I calculated more days in the hospital than at home in 2014. Finally, in December 2014, Dr. Abraham suggested a surgical procedure called vascularized lymph node transfer to reduce the swelling in my leg. He referred me to a plastic and reconstructive surgeon at Fox Chase, who had mastered the procedure.

During my first visit with him, I knew immediately that if I was going to have surgery to manage my lymphedema, it was going to be performed by him. I appreciated his compassion and ability to listen.  

Unfortunately, we didn’t know what the ultimate outcome was going to be because I had had this condition for 25 years, whereas the average person only has lymphedema for about five years to 10 years prior to having one of these surgical procedures.

At this same appointment, the doctor encouraged me to go home and consider whether I wanted to proceed with the procedure before making a final decision. I discussed the surgical option with seven different doctors, and each one said to go ahead with the procedure.

Catherine on a paddle board - something she never expected to do!Catherine on a paddle board - something she never expected to do!

I appreciated that he didn’t pressure me into making an immediate decision, and he encouraged me to obtain a second opinion, going so far as to give me a list of physicians across the country who perform these procedures. I understood the surgery would not cure the lymphedema but would control it. I needed to take action because the condition was controlling my life, and at the age of 33, I wasn’t able to work. I decided to proceed with the surgery.

In 2016, almost a year after surgery, I knew it was the best medical decision I’ve made in my life. I’ve had an amazing experience with the compassionate and caring doctors, nurses, and nursing assistants at Fox Chase. Before surgery, my affected leg was 30 percent bigger than the other. Today, there is a nine percent difference between the size of my legs. I never expected such a drastic difference, and I’m very pleased with the results. I’m continuing therapy at Fox Chase to treat my lymphedema, and I recommend Fox Chase to anyone with a similiar prognosis.

In January 2016, I obtained a full-tuition scholarship to Rutgers University Camden where I’m working toward a PhD in computational integrative biology with a focus on lymphedema research. I’m collaborating with my plastic and reconstructive surgeon to explore more accurate methods for calculating and monitoring limb volumes in patients with lymphedema being treated at Fox Chase. As of August 1, 2016, we received a patent-pending status on a method to monitor the current method used to determine the volume. We are also collaborating for my PhD dissertation at Rutgers with the goal of identifying a new computational formula that determines accurate limb volumes compared to water displacement. This new formula eliminates the assumption that circumferences are perfectly circular and reduces the number of measures required to compute the volume accurately. 

Since having the total hip replacement and vascularized lymph node transfer, I’ve gotten my life back. I’m living out my dream of teaching and doing medical research. I teach pre-calculus to undergraduate pre-medicine, biology, health science, and nursing majors. For fun, I enjoy spending time with friends by going to the movies or going out to dinner, and I enjoy playing the piano, flute, and violin. Physically, I’ve also run in a 5K race for Children’s Hospital of Philadelphia, done stand-up paddle boarding, completed a high-ropes course on a cruise ship, and played in a soccer tournament—things I’ve only imagined doing since I was eight years old. 

If you receive a cancer diagnosis or complication, never give up and follow your heart on what your needs are. Patients know their bodies the best. Don’t be afraid to speak up when you believe in something strongly. Laughter and smiles are the best medicine and will really help to get you through the difficult times. 

 

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