Clear Cell Sarcoma

Melvynman

Pocket61 said:

clear Cell Sarcoma
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.

Clear Cell Sarcoma
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

vivachesi said:

Clear cell sarcoma
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

Clear cell sarcoma

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

vivachesi said:

Clear cell sarcoma
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

Clear cell sarcoma

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

vivachesi said:

Clear cell sarcoma
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

Hey

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

CCS on the Arm

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

Clear Cell Sarcoma

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

Melvynman

HoustonDad said:

CCS on the Arm

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.

I am a nine year survivor.

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

HoustonDad said:

CCS on the Arm

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.

Your son

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. 

Lindajo58

Clear cell sarcoma

anyone out there with clear cell sarcoma

Lauren32988

https://csn.cancer.org/discussion/comment/1432075#Comment_1432075

Can I get in touch with you? My boyfriend has been fighting clear cell sarcoma for almost a year and I really need help/ advice

Melvynman

https://csn.cancer.org/discussion/comment/1697138#Comment_1697138

send me email to krieghoff123@cox.net. Lookup “Sara’s Cure” with Clear Cell Sarcoma in the search. That is the best information available and we have Facebook group you can join.