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Clear Cell Sarcoma

by Patricia W. - 09/10/2007

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Hello, My name is Patricia. I am 59 years old & am a survivor of Clear Cell Sarcoma. This is my story.

When I was 21, I developed a "trigger finger" of the fourth finger on my right hand. I kept dropping things & decided to see my family doctor, to find out what was wrong. He immediately referred me to an orthopedic surgeon, who treated me for about six months. He referred me to an internal medicine specialist, in Dec. 1969. At that time, I was admitted to hospital for an intensive work-up, with x-rays, lab, spinal tap, etc..

After all the tests were completed, the doctor believed that I had rheumatoid arthritis and I was started on a regimen of several aspirin a day, plus paraffin wax dips for my right hand & physiotherapy. By this time, I had a large firm mass on the outer aspect of my right hand. I continued under the care of the internist until June 1970, when I was referred back to the orthopedic surgeon.

Surgery was scheduled in July 1970, for removal of fluid around the fifth finger; which by now, had fused & was immobile. During the surgery, the pathologist called to the O.R. and stated that there was a tumor in the hand. Surgery concluded, I was stitched up & sent on to Recovery. 

I remained in the hospital, in Kitchener, Ont., Canada for three weeks. Noone would assume the responsibility of telling me that I had some type of cancer.  At the end of that three weeks, I was transported to the Wellesley Hospital, in Toronto, Canada.  There I was seen by a rheumatologist, along with an entourage of interns.  I felt like I was on display, yet I still had no answers from anyone who saw me. Then an orthopedic surgeon came to see me and finally, after several days, informed me that I had 'a tumor'. 

They had examined it and had sent a sample on to the Mayo Clinic, in Rochester, MN., to see exactly what type of cancer this was. The next time the orthopedic surgeon and I met, I was told that they were not sure what this was. They thought it was either clear cell sarcoma or synovial sarcoma. I was devastated to say the least! For a lack of having something meaningful to ask him, I said "Well, you can just tell my parents, since you brought me here under false pretenses; leading me to believe I had rheumatoid arthritis, when I didn't.".  

I was appalled at this surgeon's lack of tact, when disclosing such a life-altering diagnosis. I asked him if I was going to die. That was the foremost thing on my mind, at the time. I remember him saying "Yes, you will if you don't have surgery. And even then, there are no guarantees. It is extremely rare and it does not respond to chemotherapy or radiation". He continued, "We will do some x-rays. If the cancer has already spread, we will not amputate your hand.".

The next couple of days I had several x-rays and, I believe, a CAT scan or some other type of scanning equipment. The results showed that there were no additional body sites where the tumor had metastasized.  That was good news, if you could call any of this 'good news'. By this time, I was a basket case! In spite of that, surgery was being scheduled immediately.  This was done because three weeks, or more, had gone by since the original surgery. 

I had the the hand amputated on Aug. 21, 1970. I had asked the surgeon "If you can't save part of my hand, would you put on something that looked like I still had a hand.". Then, I said "I would like them to use my hand in research and try to find a cure for this cancer.". When I awoke, I looked down & saw a cast with an artificial hand attached to it and knew that they had been unable to save my hand. It was then that I accepted my fate. 

I made a good recovery and went home with my parents.  After the stump was sufficiently healed, I returned to the Prosthetics Department of Wellesley Hospital to undergo training and have a fitting of a myoelectric hand. I felt that the appliance was cumbersome and didn't respond properly.  The device was opening and closing when I wasn't flexing or extending muscles.   I told them I didn't want it and would just prefer a cosmetic hand. 

I continued to use the cosmetic hand for over four years and then, one day, I decided that it just got in the way.  Since it wasn't functional anyway, I put it away in a dresser and never used it again. I had come a long way and accepted myself as I was.  I knew that I didn't need 'the hand' as a crutch for my disability any longer! My stump was long enough that I could do almost anything I needed to do.  My amputation is about six inches up the forearm.

I went back to school to University to study Psychology and had planned to become a Medical Social Worker. I completed 3 years at University and then married a young man in the USAF, from Iowa.  We moved to Maine, where he finished out his service time in the air force. 

That was a long time ago.  Today, I am the mother of two children, a son who is 33 and a daughter who is 30. I have two grandsons who are the light of my life and bring me much joy. I became a nurse in 1981 and have been working in the field of geriatrics ever since.  My dream, back in 1970, was to become a nurse.  I never gave up the hope; though I encountered numerous bumps in the road along the way. 

What I want to tell everyone, is that being a survivor is a state of mind that anyone can achieve. Believe in your doctors, believe in yourself!!!! My diagnosis was about as grim as you can get. There weren't any statistics that showed anyone surviving past five years. That was what I was told by my doctor back in 1970. Today it is Sept. 10, 2007. I am alive and well, with no recurrence of the cancer to date. I give God the praise for my life and I am trying to help others; to pay back for the wonderful gift I have been given.

Always believe in miracles. They happen every day! I hope that in sharing my story with you, that I have given you hope that you too, can be a survivor. 

Sincerely, Patricia