CSN Login
Members Online: 16

Clear Cell Sarcoma

Buddah_Dog_Red
Posts: 1
Joined: Jan 2010

My 19 year old brother was diagnosed with clear cell sarcoma earlier this week. I am trying to connect with others who have this same condition.

jenna045
Posts: 1
Joined: Jan 2010

on aug.25 2009 my 21 months old daughter was diagnosed with clear cell sarcoma of the kidney

katherine71
Posts: 9
Joined: Jan 2011

I know it's been a year, but I just saw your comment. Can you update on your brother? I was diagnosed with clear cell in my foot in March 2010. Just trying to connect with someone with a similar experience.

ksea222
Posts: 1
Joined: Mar 2011

I also had clear cell sarcoma. Over a year now since the surgery and radiation and I am feeling great. It is super hard to find people out there with this, we are a very special group!

running333
Posts: 1
Joined: Apr 2011

I was diagnosed with clear cell sarcoma in 2006. It is very hard to find anyone with the same diagnosis. It is nice to know that there are others!

cavtastic
Posts: 3
Joined: May 2011

Im a new member to this "special group" I was just diagnosed with CCS in my right foot about a month ago. the podiatrist after several tests ultrasound,MRI,X-ray,core sample biopsy, and finally removal thought it to be a benign soft tissue mass. Well ten days later I got the bad news. Now I start radiation next week for a month then off to surgery. Thats the part I'm worried about. How have people recovered from the surgery part of treatment are they maintaning mobility? Is there any better options for skin grafts? Just lookin for some advice on what to expect from those who've been there.

Auntie Jo
Posts: 3
Joined: May 2011

1994...I was a 24 year old female college senior when I was diagnosed with Clear Cell Sarcoma. It was a small bump on the top of my left foot that I remember always being there. Initial surgery was for "vanity" reasons (I didn't like the bump showing when I wore sandals or went barefoot). It grew back within two months of the first surgery. I had another surgery two months later that indicated cancer. I had my third and final surgery in December 1994 (three months after the initial surgery). At that time, there was (and still is) very little information about Clear Cell Sarcoma. I remember the surgeon saying, "I will try to save your foot." I had been blessed with a wonderfully skilled doctor who not only removed all of the cancer cells, but saved my foot, as well. I am eternally greatful!

Back in 1994, my pathology was sent all over the country to obtain professional medical opinions about what "this" was and what course of treatment was recommended. For every pathologist who reviewed my slides, there was a different opinion. In the end, it was determined that any follow-up treatment to the surgery (i.e. chemotherapy, radiation, t-cell injections) would not be helpful. Thus, only surgery, including a massive skin graft was needed. I healed beautifully and graduated from college five months after diagnosis.

I had gone through years of check-ups with chest x-rays (they always said that the next place this cancer would travel to was the lungs) and lymph nodes in the groin area checked. In 2001, I was told that I no longer needed to schedule these tests. It is now 2011 and I am happy to report that I am healthy with no recurrence of the tumor.

Does anyone have a similar experience? Maybe I'm one of the rare lucky ones to not have had to go through what others are experiencing with treatments. I have to admit, though, I'm always scared that it could (even after 16 years) return. Thanking my lucky stars!

cavtastic
Posts: 3
Joined: May 2011

Your case sounds very similar to mine.(mine is on the inside of my right foot) Only I'm in the treatment process right now at UNC in Chapel Hill,NC. Its a sense of relief to hear your story was a success and 16 years later to be cancer free thats amaz****! Congratulations!! :)

My doctors all agreed that chemo was a waist and not needed as well but decided that raditation wouldn't hurt. Since its down on the foot there is little side effects if any that I've noticed,its just a long process 5 days a week for 5 weeks,then once thats done I'll go into surgery, projected to in Aug. Thats what I'm nervous about.....

How in depth did your skin graft get? I'm told I will need muscle and skin which can hinder mobility once I'm healed. Do you have full function of your foot?

cavtastic
Posts: 3
Joined: May 2011

Well its been awhile since I've posted here, just wanted to give a progress report on myself. I'd have say that this has been a really hard journey,the side effects of the radiation treatment finally kicked in around the 3rd week of treatment which invovled sever swelling and infection of my right foot making it so I could barely walk without crutches, and instead of stopping treatment or lowering the dose the Drs stuffed me full of Ibuprofen, and steroids and kept going telling me "its the recommended dose". Well I finally got tired of it and made them stop 4 days before their planned treament end date, and waited for almost a month before I could walk normal again.
I was schedualed for surgery on the 8th of Aug to clear the margins, but just before that I had a PET scan done to check for possible spread of cancer. The results showed some spots in my inguinal (groin) lymph nodes that appeared to be signs of spread and was told that I would need a biopsy of those nodes to be sure, but had to wait until after all my surgerys was complete. Talk about stress! long story short it took 2 attempts to clear the margins across 2 weeks but finally they got all the tumors out and then I went in for a free flap skin graph to fill the whole. It was taken from my left thigh which left me with a huge scar and numb outer quad. so far the foot flap itself looks like a swollen belly stitched to the side of my foot, and my big toe is numb, but I'm walking again after 10 days in the hospital and a month of recovery at home it's slow but progress none the less. As for the swollen lymph nodes the test results came back negative, it seems that the hacks in the radiation theropy caused so much infection during treatment that it was just my bodies natural reaction to it, so as of now I'm looking good as to being cancer free not counting my chickens just yet I still have more healing to do but its a good start.

Pocket61
Posts: 7
Joined: Sep 2012

How are you doing

Auntie Jo
Posts: 3
Joined: May 2011

First, I want to apologize for my "absence" from this site. I haven't checked in since I wrote my first post back in May 2011. I wish I would have kept in better contact with everyone. Support is one of our best defenses!

I do truly feel like a "Lucky Girl". My CCS was operated on with clear margins by one of the best orthopedic oncologists in the country. He was a very young doctor at the time (1994) and had just moved from Mayo Clinc in Florida to Marshfield, Wisconsin (where I had my surgery). Dr. Thomas Nelson has since moved on to the Mayo Clinic in Minnesota. After clear margins were established, Dr. Nelson performed a skin graft to close the hole on the top of my left foot. The skin was taken from my left thigh. Initially, the skin graft was much more painful than the foot surgery because it had to heal "naturally". By that I mean, it was left open to dry out with a sun lamp directed on the open wound. This took the better part of the one week that I was in the hospital. After the skin graft scabbed-over, a dressing was applied to protect the rest of the healing. After all these years (17 yrs), I do NOT have any scarring or evidence of the skin graft.

As far as mobility with my left foot...I absolutly have FULL MOBILITY! (Thank you, God!) My skin graft did not involve muscle tissue. Initially, I experienced some numbness on the top and around the big toe after my cast was removed (one month after surgery). This "tingling" feeling still exists in a very (VERY!) small amount. In the beginning, even the hem of my pants that would brush against the top of my foot (or a thin bed sheet) would drive me crazy ("prickly" feeling) but now, I don't notice any difference in feeling from my left foot to my right foot. However, I am careful to treat the top of my left foot with extra care, especially during the summertime. LOTS OF SUNSCREEN!

I am greatly perplexed why radiation is recommended? If all of the CCS cancer cells have been surgically removed (as in my case), and all other conventional methods have been shown to be ineffective treatment methods, why the need for futher follow-up treatment? Maybe medical opinions have changed for the course of treatment since I was treated in December 1994. Make sure you do your homework. Agreeing with something "just because" is unacceptable. Second, third, and even fourth opinions are acceptable.

Make sure you stay on top of all of your pathology reports. READ EVERY SINGLE ONE OF THEM! (Even if you don't quite understand the medical lingo...READ THEM ANYWAY!) Knowing what I know now, I would have read everything at the time instead of "after the fact".

Thinking of you and praying for a FULL RECOVERY and FULL MOBILITY of your foot.

celgul
Posts: 1
Joined: Dec 2011

Hello,
I writing you from Canada. This past Monday I was diagnosed by Clear cell sarcoma. I had a leison on my left foot on my great toe since I was 12. (I'm turning 30 within couple months). At the age of 19 I went under a surgery and got it removed. At that time I was in a third world country and told that it is nothing to be worried about. It came back after after couple months and knowing it is nothing to be worried about I ignored it for the last 12 years. Couple months ago I went to see a plastic surgeon to get it removed due to vanity reasons. He removed it and sent it for biopsy. Based on the test result I was told that I have CCS and it has the potential of spreading. I will be seeing an oncologist in few weeks to asses if the cancer has spread to any other parts in my body. I haven't experienced any

Melvynman
Posts: 7
Joined: May 2004

Seven years with this CCS. Are you seeing a orthopedic oncologist? If not try and get to one ASAP. August seems like a long time away for this cancer.

Auntie Jo
Posts: 3
Joined: May 2011

I absolutely agree with your advice of seeing an Orthopedic Oncologist!

For anyone who has been diagnosed with CCS, you MUST guard yourself with the best!

Even if this means you have to travel to see the best doctor...DO IT! God will help you find a way.

Pocket61
Posts: 7
Joined: Sep 2012

My husband was just diagnosed with Clear Cell Sarcoma Stage 4on Sept 17, 2012. It began in the leg but has move to a lymph node in the chest and the groin area. Would like like to share or update any info.

Pocket61
Posts: 7
Joined: Sep 2012

How are you doing

Pocket61
Posts: 7
Joined: Sep 2012

We are getting ready to begin a clinical trial in about 2 weeks. We are really confused, not sure if we should do anything at all at the moment. My husband is very healthy.

Pocket61
Posts: 7
Joined: Sep 2012

Do you know anyone with clear cell?

vivachesi
Posts: 1
Joined: Feb 2012

I was diagnosed with CCS two days ago. It is located in my right foot under my heel. The doctor says that I will have to get surgery, chemo, most likely radiation and amputation from the knee down. She told me that the tumor has eaten through the bone and tissue. She says that when she removes it, I am going to be left with a giant hole in my foot. Sounds life changing huh? If it means saving my life, I am totally for amputation. (BRING IT ON...AS LONG AS I AM GIVEN LIFE!) I am not afraid to get my limb cut off to be honest with you. Having a prosthetic will not be too bad, I don't think. So long as my insurance is willing to cover the costs of getting a prosthetic then I have nothing to worry about.

So, are you someone going through the same problem as me? If so, please reach me.

Cheers,
Jesse

Melvynman
Posts: 7
Joined: May 2004

You need to get to Orthopedic Oncologist or a Sarcoma specialist. Go to this site. http://sarcomaalliance.org/sarcoma-centers/
Try not to let you average doctor, surgeon or oncologist treat this cancer. Chemo and or radiation will not save your life. You need the best.

Contact her she might help.

http://www.carolinasfightforlife.com/

If you need more information let me know.

Pocket61
Posts: 7
Joined: Sep 2012

Hello, my husband just found out he has Clear Cell, it began in the leg and it is know in the lymph nodes, can you up date how you are doing. we have not begun treatment yet.

Melvynman
Posts: 7
Joined: May 2004

How is your husband doing? I am a survivor of CCS for eight plus years. Have you contacted Carolina Dehond group they have amazing experiences and lots of information about surviving? I hope things are going well for your guys.

AliciaGon
Posts: 10
Joined: Oct 2013

Hi Jesse,

i was dx 15 yrs ago in my left heal. First thing I was told worst cancer you can get per my pcp. we will probably have to amputate below the knee. I went straight to God. My children were so young I had three and youngest was three yrs old. I asked God let me raise my kids and I was willing to do it without my left leg.  We'll scans came back showing only the tissue was affective so they removed my heal then tock my arch and created a new heal. I had some complication some of the skin graph didn't catch so I had some scarring.  It was a long recovery but I did it. 

in May 2013 I my scar developed a new tumor sticking out. Had it checked MRI did show it was small tumor ordered PET Scan no cancer in foot but in my lyphm node in left leg.  I had my ortho oncology remove tumor and lymph node. I did not know he should have removed more of the nodes. Well I had a scare with blood clots in July and that's when another dr told me I should have had more treatment. I was sent to MD Anderson there I was set up for lymph node dissection.  A total of 20 were removed from groin and tummy In September. I am now recovering from this surgery. This has been hard too but keeping my faith. Lots of swelling in my upper thigh painful but managing it. 

I say I have been lucky no treatment as of now just surgeries to cut out.  My youngest now 17 but I also now have a grand baby. 

Keep up with check ups. I too was only doing chest X-ray of chest only on follow ups. Had it not been my foot acting up I would have never know it was in my lynphm nodes too. Hope you are doing well. I pray for all of us. Stand strong SSC fighters!

AliciaGon
Posts: 10
Joined: Oct 2013

Hi Jesse,

i was dx 15 yrs ago in my left heal. First thing I was told worst cancer you can get per my pcp. we will probably have to amputate below the knee. I went straight to God. My children were so young I had three and youngest was three yrs old. I asked God let me raise my kids and I was willing to do it without my left leg.  We'll scans came back showing only the tissue was affective so they removed my heal then tock my arch and created a new heal. I had some complication some of the skin graph didn't catch so I had some scarring.  It was a long recovery but I did it. 

in May 2013 I my scar developed a new tumor sticking out. Had it checked MRI did show it was small tumor ordered PET Scan no cancer in foot but in my lyphm node in left leg.  I had my ortho oncology remove tumor and lymph node. I did not know he should have removed more of the nodes. Well I had a scare with blood clots in July and that's when another dr told me I should have had more treatment. I was sent to MD Anderson there I was set up for lymph node dissection.  A total of 20 were removed from groin and tummy In September. I am now recovering from this surgery. This has been hard too but keeping my faith. Lots of swelling in my upper thigh painful but managing it. 

I say I have been lucky no treatment as of now just surgeries to cut out.  My youngest now 17 but I also now have a grand baby. 

Keep up with check ups. I too was only doing chest X-ray of chest only on follow ups. Had it not been my foot acting up I would have never know it was in my lynphm nodes too. Hope you are doing well. I pray for all of us. Stand strong SSC fighters!

Slg2013
Posts: 1
Joined: Nov 2013

I was diagnosed with ccs about 2 months ago. I had a bump outside my right foot. I had it removed, and everyyhing. I got a pet scan and a ct scan done. The pet scan showed it was localized and the ct scan showed it wasnt in my lungs. We'll the oncologist said the thing to do is a below the knee amputation. And I got the amputation done last month October 30th 2013, and I'm doing great. I am now ready for my prosthetic. 

HoustonDad
Posts: 1
Joined: Dec 2013

My 24 year old son had a small growth (less than 1cm) on his left forearm removed by the Dermatologist for vanity reasons 6 days ago. He had this growth for about 2 years, never bothered him. But the Pathologist (after consulting with MD Anderson Doctors) believes this is CCS. 

He is scheduled for Ultrasound Fine Needle Aspiration, Catscan (Chest, Abdomen and Pelvis) and Bloodwork next week, then we will see a Doctor at MD Anderson for the first time and find out more about his cancer.

I guess the CCS is caused by a genetic mutation. We have so much to learn and deal with...

Is there any other CCS Message Boards, useful links, studies we can look at that might give us the latest and the greatest on the subject?

We live in Houston and will be treated at the MD Anderson, so that is a big plus for us I believe. 

Any suggestions,, experiences or ideas are greatly appreciated.

Thank You.

Melvynman
Posts: 7
Joined: May 2004

I am a nine year survivor.  There is not much to learn.  Try and get a Orthopedic Oncologist they will be the most aggressive surgeon and most likely to have seen this beore.  I am going to sent you email. 

AliciaGon
Posts: 10
Joined: Oct 2013

Sorry to hear about your son. Yes awesome you are able to be at MD Anderson. It is where I go as well. but I don't live in houston. How is your son?  I can tell you my experience is only surgery to remove what they can which have been twice on foot and then the lymph Nodes.  I will keep your son in prayer. 

Melvynman
Posts: 7
Joined: May 2004

I sent you a email.  Hope to hear from you and sorry about your brother. 

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network