Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

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Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

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

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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

 

 

 

 

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by harrillrn on Sun Nov 23, 2008 12:00 AM

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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

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by gillianj on Fri Mar 06, 2009 12:00 AM

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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

 

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by Dave12Sherry on Sat May 23, 2009 12:00 AM

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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. 

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by Melvynman on Thu Jul 09, 2009 12:00 AM

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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.

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by ahaughto on Fri Sep 04, 2009 12:00 AM

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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

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by GracePearson on Fri Jun 29, 2012 07:16 PM

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On Oct 30, 2008 12:00 VonTuck wrote:

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 Sir,

I refer to your post from October 2008 which I have read with great interest.

It was scary for me because it was so freakishly similar to my own circumstances you see. I see that it was posted prior to the amputation - which I assume has long since happened. I hope it went well - as well as these things can go!

Over 10 years ago in early 2002 I was diagnosed with the exact same thing in my right foot. I had the lump for at least 5 years - being dismissed by all and sundry of the medical profession, until one day the pain just became too much and I, please excuse the pun, put my foot down and insisted that it be removed to save my own sanity. It wasn't until I had a plain xray that it was discovered that there might be a problem. Removal of the visible lump lead to the diagnosis of clear cell sarcoma which, due to the fact that the tumor was so large (had pretty much eaten into the entire foot) it was practically impossible to limb spare. Like you my consultant discussed with me the possibility of various surgerys to spare the limb. Bone grafts, skin grafts, nerve grafts, muscle grafts, ligament and tendon grafts etc etc. However the fact that I was also a type 1 diabetic didn't exactly help matters! I went for a bone, CT and MRI scan which, thankfully, confirmed that it hadn't spread anywhere else. As far as I'm concerned there was no decision. Limb sparing only works if there's something worth saving. I would have been left with a practically useless foot so amputation, although drastic, was the only option for me. Luckily, that time, the amputation was also my "cure" so I didn't require any further treatment. I was 18 at the time so I bounced back pretty fast and I can honestly say that it's not the worst thing that's ever happened to me.

Over the years I've had various scans and check ups and have remained cancer free. That is, until now.

On March 19th this year I had my 10 year anniversary of the loss of my right foot. Over the last couple of years I had developed what is known as a neuroma (a bundle of nerve endings which grow together to form a nerve tumor) in my stump which would have been caused by the amputation itself. Totally benign but extremely painful (causing both extreme physical and phantom pain). I had tried a couple of treatments for it but ultimately surgery was the only answer. I had the neuroma removed on the 31st May last. On the day it was removed my surgeon mentioned finding some "other tissue" which he had sent to pathology. After three weeks I got the bad news. I hadn't had any scans recently because the standard follow up treatment here is to have scans for 5-6 years post treatment. The surgeon did say that he removed what he saw but he's sure he didn't get "clear margins", which is a term I'm sure you're familiar with. Unfortunately the tumor is or was in what remains of my calf muscle. If I lose my calf muscle I'll lose the ability to flex my knee which renders the knee pretty much useless. In effect, I'll have to lose the knee althgether and become a trans-femoral amputee - a fate I would rather avoid. At the moment I've only had an MRI scan of the stump and am waiting to have my PET/CT on Tuesday which is the scan that will "reveal all". Unfortunately being a diabetic makes it very difficult to do - high sugars can corrupt the results.

It's so surreal to me right now. One minute I'm thinking "I can't believe I'm back here again" and the next I'm thinking "why am I not surprised". It's very conflicting!

I've made a great effort to get healthy over the last 4 years - I swim almost every day and walk a great deal. I feel completely healthy. In fact almost everybody who knows about the situation has commented on how "healthy" I look. They can hardly believe it. I like to think I'll be lucky this time and won't have metastisized. Best case scenario is that it won't have spread, my surgeon will be able to spare enough of the calf muscle to allow me to stay a trans-tibial amputee and life can go on as normal. Not that things can be normal again. I keep thinking I was a complete fool for thinking it wouldn't come back. And even if I do get "lucky" this time it'll only be a matter of time before I'll end up losing the entire leg altogether. I know it's pointless thinking like that but sometimes I can't help it. Another part of me thinks that, actually, I'm rather lucky. The tumor was quite small and the only thing I ever noticed, physically, was the neuroma so we've clearly caught it in the early stages. If it hadn't been for the neuroma this tumor may not have been noticed for years. I'm also lucky because I do have one of the best facilities in the country looking out for me - so I've got that on my side also. It's funny how "importantly" they treat you when you've got a cancer that's as "rare as rocking horse s**t"!

I know I've wittered on for quite a bit and I hope my circumstances haven't caused you any worry for your own wellbeing. At the end of the day, everybody's different.

I've only read this post and I'm new to this site so I don't know if there are any other posts from you. I do hope that all went well for you and your lymphatic system wasn't affected. Or anything else for that matter.

Kind regards,

GracePearson

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by DrManish on Sun Sep 09, 2012 07:54 AM

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Dear Brother,

Our almight God says in 

Exodus 15:26.

"I am the Lord that healeth thee"

Brother by this time you are already healed in Jesus name.

I declare healing in Jesus name.

Your brother in Christ

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by kmrosserjr on Thu Aug 01, 2013 04:57 PM

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I was diagnosed in 2009. I had a 2.7cm tumor removed from the bottom of my right foot. We tried to save it they cut out clear margins and reconstructed my foot. In 2011 pet scans revealed new tumors in my foot and in my right ankle. I knew it was back before the scans because I had the similar pain when I walked so I opted for the BK amputation. I stayed clean for the next 2 years. My last scan showed three lung nodules and hot lymph node. They cut out 2 of the lung nodules both were less than 5mm but they were metastatic lesions of clear cell sarcoma. So I have it now in my lymph nodes and my lung. From what Ive read I have anywhere from 9 months to 7 years depending on how it grows. But I say this/... When I was diagnosed with metastatic cancer, the doctors gave the cancer 2 years to live. HAHAAHAH Keep on fighting my friends and god bless.

RE: Diagnosed With Clear Cell Sarcoma (Soft Tissue Melanoma)

by kmrosserjr on Mon Jul 28, 2014 04:48 PM

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Me again.

My cancer has spread to my left (non amputated leg). Since its in my lungs and Lmph nodes I will not be amputating my other leg. The new Tumor was measured at 6cm last pet scan in May of 2014 and a few new lung nodules were found. On June 2nd 2014 I had 2 surgeries in 1. First the Cardio surgeon removed 2 of the 4 nodules in my lung which is the 2nd lung surgery Ive had so my left upper lobe is almost just scar tissue now. After he finished the Surgical oncologist came in and used Ultra sound to guide 6 probes into my 6cm tumor behind my left knee and then sent electricity through the tumor to try to kill it off. After 5 weeks I was able to walk again with no crutches. Remember my right leg is alrady gone and I use a prosthetic. The Ablation seemed to work as most of the pain behind my left knee was gone. Now about 2 months later I feel like the Tumor he shocked is pissed off. Its hurting more and it feels like ther is either another tumor beside it or my old one just grew really big. I see my Dr next week and we will scheduling another PET scan to see what its doing. I feel like my left leg has been compromised by the disease and that sucks. I was ok with amputating my first leg but I will not allow the 2nd. Like I said its already spread to lungs and lymph nodes so I need to think of the quality of life I have left. I'd rather take a bunch of Oxycontin and have 1 leg with pain than to be a double amputee. If they cut off my left leg it would be really high above my knee. My right leg is a below knee and I could do most things. Now my left leg is holding me back but I would not do better on prosthetic this time around due to my circumstances. Its a slow growing and when you get a tumor in the wrong spot its very painfull. Mine causes shooting and throbbing pains all the time. Sometimes electric shock feelings that bring me to my knees. It sucks because i feel like I know more about it than my Doctors do. All they can do is give me pain meds, schedule my scans and do surgery when needed. Of course pile my mail box with Medical bills and take all money they can get there hands on. Im 30 years old. I should be worrying about which boat i wanna get to take my kids fishing in, not all this crap. Life is what it is and I trust in Jesus Christ and things will be ok.

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