Dermatofibrosarcoma Protuberans

DeaVan
DeaVan Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
Is anyone familiar with this type of cancer?

Comments

  • AuthorUnknown
    AuthorUnknown Member Posts: 1,537 Member
    #2
    Hello,

    You may want to do a search of the CSN website by entering the key words "Dermatofibrosarcoma Protuberans" in the search bar at the top of this page. If you find someone you would like to contact you can do so through the internal CSN email system. For more information on how to do this, click on the "help" link at the top of the page.

    Take care and be well,

    Dana
    CSN Dana
  • sur5er
    sur5er Member Posts: 4
    #3
    You might want to check out the following link on the American Cancer Society website.

    http://search.cancer.org/search?client=amcancer&site=amcancer&output=xml_no_dtd&proxystylesheet=amcancer&restrict=cancer&q=Dermatofibrosarcoma+Protuberans

    Also the following links from the National Institutes of Health (US Dept Of Health & Human Services) website.

    http://search2.google.cit.nih.gov/search?site=NIH_Master&client=NIH_frontend&proxystylesheet=NIH_frontend&output=xml_no_dtd&filter=0&getfields=*&q=Dermatofibrosarcoma+Protuberans&btnG.x=13&btnG.y=5

    Hope this helps you. Let me know if I can be any further help to you.
  • rvarm
    rvarm Member Posts: 1
    #4
    way too familiar! i was diagnosed with one in 3/07. i received conflicting advice as to how to treat it, so my derm.sent me to md anderson where i had MOHS surgery in may. i will be checked by both drs. every six months. while recurrance appears to be high, MOHS was not the standard until recently also, since it is so rare, many people are misdiagnosed and mistreated. all in all, if this is my brush with the "BIG C", i'll gladly take it and be DONE!
  • Rancho
    Rancho Member Posts: 9
    #5
    rvarm said:

    way too familiar! i was diagnosed with one in 3/07. i received conflicting advice as to how to treat it, so my derm.sent me to md anderson where i had MOHS surgery in may. i will be checked by both drs. every six months. while recurrance appears to be high, MOHS was not the standard until recently also, since it is so rare, many people are misdiagnosed and mistreated. all in all, if this is my brush with the "BIG C", i'll gladly take it and be DONE!

    I hope you are doing well! I have just been recently diagnosed and treated (surgically). My procedure was today, 9/2/08. Have you had any complications from your procedure? I am a distance runner and hope to get back to training ASAP. Has your activity been affected? MD Anderson is a remarkable place. How was your first check-up?
  • sgpmaxx66
    sgpmaxx66 Member Posts: 1
    #6
    Rancho said:

    I hope you are doing well! I have just been recently diagnosed and treated (surgically). My procedure was today, 9/2/08. Have you had any complications from your procedure? I am a distance runner and hope to get back to training ASAP. Has your activity been affected? MD Anderson is a remarkable place. How was your first check-up?

    diagnosed in 1991
    I was diagnosed wiht DFSP in 1991. My tumor was on my right forearm. My treatment consisted of surgery only. I then went to follow-up appointments (during which chest x-rays were taken) for 5 years. I was treated by Dr. Mark Scarborough at Shand's Hospital in Gainsville, Florida. To date, I have not had a recurrance. I do have a very large scar on my arm and one on my leg where from where skin was grafted to cover the surgical incision. I did not have any major complications from my surgery. But, I did lose a little sensation in my wrist. I was originally misdiagnosed by a family doctor who decided (without conducting any tests, not even an x-ray) that I had a benign tumor. He then removed it in his office. When I went back in to get the stitches removed, I was told I had cancer! I was 24 years old when I was diagnosed and I was terrified to hear that I had cancer. Luckily I was referred to Shand's and met Dr. Scarborough. I only recently learned how rare DFSP is. From what I've learned, DFSP is very treatable and rarely spreads. I realize how fortunate I am.
  • jmckenna
    jmckenna Member Posts: 1
    #7
    sgpmaxx66 said:

    diagnosed in 1991
    I was diagnosed wiht DFSP in 1991. My tumor was on my right forearm. My treatment consisted of surgery only. I then went to follow-up appointments (during which chest x-rays were taken) for 5 years. I was treated by Dr. Mark Scarborough at Shand's Hospital in Gainsville, Florida. To date, I have not had a recurrance. I do have a very large scar on my arm and one on my leg where from where skin was grafted to cover the surgical incision. I did not have any major complications from my surgery. But, I did lose a little sensation in my wrist. I was originally misdiagnosed by a family doctor who decided (without conducting any tests, not even an x-ray) that I had a benign tumor. He then removed it in his office. When I went back in to get the stitches removed, I was told I had cancer! I was 24 years old when I was diagnosed and I was terrified to hear that I had cancer. Luckily I was referred to Shand's and met Dr. Scarborough. I only recently learned how rare DFSP is. From what I've learned, DFSP is very treatable and rarely spreads. I realize how fortunate I am.

    Diagnosed Fall 2008
    Hey there

    I was diagnosed after having doctors ignore me when I said a small red lump on my head was concerning me. They said it was nothing. On more than one occasion. So I found a surgeon myself, got a referral from my schools clinic and waited 7 months to see him. The first surgical removal was on Sept. 29. It came back as dermatofibrosarcoma. Second surgery was on Nov. 17. And then the biopsy came back two weeks later as STILL having remaining cells. So my last surgery was on December 15 and on January 19th it came back negative for any remaining cells. While I am so very very relieved right now I am only 22 and am so terrified about the reoccurance rates of this cancer. Does anyone know any more info on it? percentages etc? I just can't quite feel good about this until I know if I should expect it to come back? I have a large scar on my head and a even larger dent.
    Any info would be greatly appreciated.
    Thanks, J
  • sen0760
    sen0760 Member Posts: 9
    #8
    4th time dfsp
    hello to all:

    This is my 4th recurrent dfsp . The first 2 were diagnosed as lipoma ( 1993, 1996), the 3rd as dfsp (1998).
    I have a large scar in my left upper jaw area. 6x5x 2cm deep. The 3rd operation was a wide excission one taking out all above skin, the bone connecting eye to ear, back mucle parts of jaw and the upper parotid gland among lymph noads. Now it came back in the cavity of the parotid gland. all the time I was confident that palpitation of the site was enough. Since the site has the facial neve and possibly other nerves, I feel overwhelmed about what to do. They say that imatinib can be helpful in shrinking the tumor to a less size thus making the operation less invasive. need info if possible.
    My thoughts and prayers with all.

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