Type of Sarcoma: Synovial Sarcoma
Year of Diagnosis: 2006
Sometime during 2006 I began to notice my left calf was often sore. The sensation was not pain but a dull ache such as a Charlie horse in a muscle would give. I tolerated this feeling for 6 or 8 months thinking it was a lingering effect of a bruise to that calf a year or two earlier. I had been doing a burn out on my Harley; and the foot peg jammed into the back of my calf.
Eventually, I started complaining to my chiropractor. He measured both of my calves and found the left calf was one inch larger in diameter. He then told me that was not uncommon and it was nothing to worry about. I asked his masseuse if she could work out the knot in my left calf. Tatyana worked on it for a while and said, “that’s not right, usually a muscle softens up but it is like a piece of wood.” She continued with, “you should get that checked, maybe an MRI.” This got my attention because Tatyana was into holistic medicine and normally against traditional medical care. Again the chiropractor told me, “no, it’s fine, she doesn’t know what she’s talking about.”
Well, I was concerned enough then to visit my family doctor. Dr. Langley immediately recommended an MRI. The technician showed me the images which clearly showed an egg shaped mass obviously out of place in the center of my leg scan. My doctor sent me to a surgeon at United who told me, “I could cut it out then biopsy it, but I think this looks unusual.” He then sent me to Dr. Clohisy at the University of Minnesota, Masonic Cancer Center. This surgeon told me Dr. Clohisy is the one I would go to if I had your condition.
By now, I was frightened as my mother died of cancer at age 54. When I met Dr Clohisy at the U of M masonic cancer center, he impressed me greatly. I had been told a biopsy would involve scheduling a future visit to an operating room. Instead, he asked me to jump up on the table and took a biopsy right then and there. I was quite afraid upon hearing that sarcomas were rare and unusual but, he said, “they are rare by comparison to other cancers but we deal with them every day exclusively.”
It turns out I had a synovial sarcoma. It was slightly over the size where they are known not to spread so; they threw the full bore treatment program at me. They said my leg may need amputation as the tumor abutted nerves and arteries and I found out this is common by watching all the other patients missing extremities. They were able to salvage my leg but, it required four months of chemotherapy, surgically removing my soleus calf muscle, then seven weeks of radiation therapy to prevent recurrence. The chemo wore down my health and spirit to the point I thought this will kill me but at least I will be out of misery. Dr. Cho was my radiation doctor and I loved his upbeat attitude and sense of humor. At one point, I had a second opinion consult at the Mayo Clinic. The doctor there was very helpful. He told me I would receive a similar treatment regimen there but the U of M masonic center was just as effective.
I met some of the folks from the Karen Wyckoff Rein In Sarcoma charity (RIS), while still undergoing initial treatments. They had some literature in the waiting room and invited my wife and I to the summer picnic at Como lake. I met a lady in a wheel chair with her leg in a cast. She had gone through treatment several years earlier and the sarcoma returned. I really enjoyed connecting with fellow patients even though I realized the disease may come back years later. Eventually we volunteered at some of the RIS events to try to give back some of the support we had received.
Well, at my seven year scan, Dr. Clohisy thought he saw something fishy on a lung scan that Radiology had already reviewed with no findings. It turned out they found a metastatic nodule in my upper left lung lobe. Shortly after, Dr. Rafael Andrade at the university thoracic center removed a piece of that lung. Biopsy verified it was again synovial sarcoma. Now I am back to scans every few months and fear for my life. Dr. Clohisy is optimistic that any other spots should have shown by now. He tells me if they reappear he would expect only one or two and they will remove them immediately. I dread the thought of a recurrence since the recovery from the lung operation took the wind out of my sails for over a year. One bright side was my meeting with Kevin O’Keefe, a Rein In Sarcoma volunteer. He heard me discussing my relapse with the Wyckoffs and told me that he has synovial sarcoma and experienced a lung metastasis around six years later. It was comforting to hear Kevin was a 16 year survivor by then.
Synovial Sarcoma has been a drastic blow to my life. I have been very blessed to find Dr. Clohisy and the other doctors at the U of M. Also, I have been fortunate to meet some uniquely supportive folks at KW-RIS. My wife Brenda and I became survivors since first diagnosis in August 2006. This has given me a chance to assess my priorities and live each day with gratitude. Thank you and may God bless!