Posts Tagged ‘Clear Cell Sarcoma’

Reporter: Aviva Lev-Ari, PhD, RN


Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by VonTuck on Thu Oct 30, 2008 12:00 AM

Hello All

I’ve been reading the posts with great interest and sorrow over the last couple of weeks. I have been waiting to post until my final pathology came in and I had a solid diagnosis. Well, yesterday afternoon I received it.

I have been diagnosed with clear cell sarcoma (CCS) of the right ankle. In my reading I have seen it is also called soft tissue melanoma (which is still confusing me). It appears in my reading, to learn about the enemy within me, that this is about as rare of a cancer as there is, and there has been little to no research done, to include viable chemo treatment plans after surgical intervention.

I am a 46 year old retired military male. The symptoms (lump, swelling, mild pain, etc) struck me 2.5 years ago during my last couple of months in Afghanistan. Upon my return the lump and discomfort went away, allowing me to dismiss it as a problem.

About a year ago I began to experience severe swelling and, at times, excrutiating pain. I finally went to the doctor. At that time it was diagnosed as a synovial cyst and I was told not to worry about it unless the pain got worse or the lump got larger. Next episode it was diagnosed as gout, but a week later, when my uric acid levels were below normal, they realized there was a problem. (This is the “misdiagnosed” picture we all have heard so much about)

I was finally sent to an ortho joint specialist, and he knew after a 10 minute exam that I was in trouble. The following MRI confirmed a “cancerous mass” and the intial prognosis was synovial sarcoma (probably spindle cell). The CT scan came back clean for the lungs, abdomen, and vital organs. At that time, due to the encompassing size of the mass, I opted for below the knee amputation versus limb salvage and all the inherent risks that go along with it, as well as the prolonged reconstructive surget. I was then biopsied.

It took 2 weeks to the day for the final pathology report to come back. The reason was that they had an extremely difficult time identifying that it was CCS because, as my surgeon put it, “we don’t see this everyday”.

Now the amputation is a MUST. I have a PET scan on Monday, and we are all praying that it has not infiltrated my lymphatic system (which CCS is notorious for doing). My amputation is Nov. 12th.

I am looking forward to posting my experience on here. I hope it can be learned from, as well as if anyone else out there is in a similar situation, to share the information and good and bad experiences. I will do my best, health permitting, to post regularly.

I am not frightened of the amputation, but I am terrified of lymphatic compromise. I am trying to keep a positive attitude and can only hope for the best.

Thanks for reading, and I look forward to the interaction with all of you in this forum.

Love and prayers to you all




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