Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

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

VonTuck

 

 

 

 

Dear Von Tuck,

i was diagnosed thursday with clear cell sarcoma versus amelanotic melanoma from a tumor on my right toe i had dropped a fruit bowl on it in feb and the nail cracked broke off most of it and then this growth appeared I am due to see an oncologist on dec 10th from what i have read a clear cell sarcoma is often referred to as soft tissue melanoma but i believe it may have some minute differences they are still trying to finish my path report so i hope i will find out sonn. I'm scared too i have 2 kids in college and am 51 i have been an RN for almost 29 yrs hoped to retire at 60 just hope i make it til then now lol  update when u can I will do the same. any others with experiences with subungal cancers will be appreciated

harrillrn

hi

firstly, i hope things are going ok for you and i send our love and prayers.

my son was 10 (13 march 2009) when he was diagnosed with clear cell sarcoma. we found a lump in his neck it was operated on. then on 22nd dec we got the diagnosis. he had radiotherapy for 6 weeks and now has mri scans on his neck every 4 months (was 3) as well a chest xray and ultrasound on his abdomen (i had to fight for the later and it was a comprise as i wanted him to have whole body scans)

he's doing really well at the moment he's on thyroxine as the radiotherapy damaged his thyroid but apart from that he is back at running club has joined army cadets and has a wicked sense of humour.

i can really relate to the lack of research each piece seems to stem from 2 or 3 documents. i think i have down loaded most of them! our consultant had little knowledge and our hospital has never treated it.

 we're 2 years down the line, Nathaniel really is a picture of health his next scans are on the 23 march which is near enough 2 years from the end of treatment.

again all our love gill and nathaniel x

 

Dear all,  I searched Clear Cell Sarcoma to see what new news there is out in the world on this cancer and found your messages here.  My mother was first diagnosed with Clear Cell Sarcoma back when I was 10 in 1977.  Back then there was nearly no research or knowledge of this cancer anywhere.  When they initially removed her tumor from her temporal muscle (primary site) they sent the pathology to Washington D.C. as nothing came up during local testing.  At that time there were only 200 cases known world-wide and only 4 cases known where the tumor's primary site was in the temporal muscle.  The initial diagnosis came with a 6 months at best life expectancy.  My mother said that one day this pump appeared and when she asked the doctor what it could be they told her it was a spider bite.  Almost a year later (when the biopsy was done) the pump was a large lump that left her glasses sitting crooked on her face.  The news was devasting to all of us.  I am the youngest of a family of six kids with the eldest of us being 22 at the time with 2 kids of her own.  It was a rough time.  The first thing they did for my mother was to cut the full tumor out.  It had not mataticized to her lymph system so they didn't feel chemo would help her.  She did not receive any other treatments.  It was a waiting game.  They scanned her periodically for years but 8 or 9 years later the tumor returned to the primary site.  Again they cut the tumor out and since this was the mid 80s they decided to also radiate the neck area to prevent any lymphnode spreading.  This knocked out her thyroid and she went on Thyroxin too.  For several years tumors would return to the primary site and the doctors would cut them out and radiate.  As radiation became more commonly used she received it as much as she could with each round.  As you can imagine, after several operations and grafts to the same location the skin gets very thin and after a while it wouldn't heal properly.  The doctors were always worried about air exposure into the wound as it healed.  She had a surgery during the mid 90s where the location just wouldn't heal and she hot packed the spot and drained it and all kinds of things and yet it wouldn't heal.  One day I stood next to her at the kitchen sink and she was there without her wig and I turned and looked at her, I was on the side of her where her tumors had been, and I noticed through her translucent skin that she had a new tumor and that it had a vein running through it.  I said something to her that I thought she should be seen immediately and she broke into tears.  She had been seen and she was scheduled for another surgery.  We both knew in that moment that she was in trouble.  I was pregnant during the July of '96 when my parents stopped over for a visit.  They weren't acting right so I knew something was wrong.  Finally my parents broke the news that the cancer had spread and was found in my mothers lungs.  We were lucky all those years that the cancer hadn't spread.  Back when she was initially diagnosed the longest living survivor of that cancer lived 2 years with most not making it past that first 6 months.  My mother always believed that chemo was the absolute worst thing she could do for this cancer and that her success was refusing chemo.  She had some lung surgeries and radiation again and again.  A few years later the cancer spread to her liver and in her back, still radiation and diet were her defenses.  In July of 2000 the doctors said she was at critical bulk and had so much cancer within her that they couldn't do anything more for her.  She fought long and hard and in Feb. 2001 the cancer won.  Her whole journey with cancer for 23+ years was Clear Cell Sarcoma.  I was incredibly blessed to have had my mother here with me until I was 33.  God blessed us that, with such a poor initial diagnosis, for a girl of 10 years old, that my mother would live such a long time and witness the births of all 13 of her grandchildren and even her first 2 great grandchildren.  My mother was 65 when she died. 

 The point of my story here is to tell all of you who are getting this diagnosis that there are some cases that beat the odds.  Modern medicine is far better now than it was in 1977 when my mother was diagnosed.  Even on your toughest days with this disease there is always hope.  I pray that advancements would be and will be made with this disease so that my mother would be the last one to suffer with it.  Up until the last week of her life she said that even though her days were difficult that they were all worth living.  We were blessed and now I hope for blessings and strength for you if you are in our shoes.  Please stay positive and keep faith and hope and look for the blessings in each day.  You are all in my prayers. 

Hi all, I got this sarcoma just over five years ago. Had the lump for a couple of years was told not to worry. Long story made short this cancer kills and it's not easy to find a doctor that has ever treated it with much success. Just finish reading Gerson Therapy book. My next read will be The China Study. Doctors can cut cancer out, they can kill cancer cells, but they can't cure cancer. Fight back through your diet. Good luck.

Hi, VonTuck - all the best, here's praying with you! I've just been diagnosed with CCS and I also see it referred to as Malignant Melanoma of the Soft Parts - why is this? Off for a full body scan next week followed by surgery.... Oh well, chin up! Adrian