Dermatofibrosarcoma Protuberans

mronchi
mronchi Member Posts: 1
edited March 2014 in Sarcoma #1
I was just diagnosed with DFSP on Monday, 3/15/10. I have a similar story to the few others I've managed to find. I first noticed the lesion when I was about 15 years old but was told by a dermatologist that it was probably just a benign tumor and not to worry about it unless it got bigger. I've shown it to a couple other doctors along the way with substantially the same reaction. It has grown very slowly over the years but nothing appreciable until I had my 3rd child about a year and a half ago. Since then it has quadrupled (at least) in size. I'm now 34. I finally went to the doctor and insisted on a biopsy. When the pathology report came back as DFSP, I was referred to a dermatologist. He was great and did some research and got special permission from my insurance carrier to have a Slow Mohs procedure done by a well respected surgeon. I'm totally stoked about that but now I'm stressing out that because the lesion has been there for almost 20 years that it may have crept into muscle or bone. I'd say the lesion was about the size of a large garbanzo bean surrounded by blue mush about 2-3 cm diameter.

A few questions:

1. Does anyone know if size matters with regard to the severity of the microscopic spread of the cancer cells? My lesion doesn't seem all that big compared with some pictures I've seen on the internet and I'm hoping that's a good sign.

2. Has anyone had the Slow Mohs procedure who can describe the process to me and how it differs from traditional Mohs?

3. Does length of time with the lesion have anything to do with the chances that it's metastasized? I know this is a type of cancer that very rarely does but I'm worried that my chances are increased because the lesion has been there for so long.

I know that none of these questions can be answered for certain. I'm just hoping to hear other peoples' experiences.

Comments

  • vivincali
    vivincali Member Posts: 1
    #2
    DFSP
    I was diagnosed Nov 2008, and had Mohs in Dec 2008. My tumor was on my face, on top of my parotid gland. It is very slow growing, and size does matter. I caught mine fairly early, and went to the dermatologist right away. He immediately suspected DFSP. I had the regular Moh's surgery. The unfortunate part is that they have to take such wide margins to make sure they get all the cancer. I had an MRI before and after, to make sure the tumor was gone. I don't know about slow mohs, but the regular mohs was pretty traumatic for me. He cuts the area, you leave for a while, pathology is checked, and then he cuts more. This continues for several duartions. I had a huge hole in my cheek that was able to be flapped closed. Fortunately my surgeon was good at his job, but unfortunately, he sucked at dealing with me for after care. He nicked my partotid gland, probably because he had no choice, but didn't mention it to me. For two months after the surgery, my cheek was leaking saliva. I know it sounds gross, but it really wasn't. Just every time I would eat, it would leak, therefore I stopped eating! Finally I went to a head/neck guy, and it eventually healed. If I were you, I would have an MRI to check about spread. I wish you the best. I got through it with the help of family and friends, lots of praying, and telling myself every day, I can get through today till tomorrow.
  • Unknown
    Unknown
    #3
    DFSP and MOHS
    Hi,

    I had my tumor for about 20 years and it had not metasized, and it does grow more slowly than other cancers, although it did break out into assymetrical smaller tumors and was more extensive than they thought it was. I did have the MOHS, and they did do the testing during the procedure, which worked well. The procedure was in November so I will have to be tested for the next 10 years, and probably for the rest of my life, but the procedure is very effective.

    I recommend the MOHS, and I also recommend that you find someone who had treated this type of cancer before.

    JC
  • DFSPsucks
    DFSPsucks Member Posts: 2
    #4
    DFSP is not always slowly growing
    I just want people to know, that although DFSP may be slowly growing, this is not the case in everyone.

    This type of cancer is too rare to say that it always grows slowly.

    In my sitution, the lump I had grew very rapidly and the tentacle like projections spread aggressively.
  • Unknown
    Unknown
    #5
    DFSPsucks said:

    DFSP is not always slowly growing
    I just want people to know, that although DFSP may be slowly growing, this is not the case in everyone.

    This type of cancer is too rare to say that it always grows slowly.

    In my sitution, the lump I had grew very rapidly and the tentacle like projections spread aggressively.

    Hi,I agree with you that
    Hi,

    I agree with you that the cancer is so rare -- and rarely diagnosed -- that it is hard to generalize. It is said to grow more slowly, and that is one reason I was told that radiation is ineffective in many cases of DFSP, but that might not be true!

    It is right to not make any assumptions; since it is rare and rarely diagnosed, it is not at the forefront of cancer research and too often misdiagnosed, thus making it even more important to get as many opinions as possible in order to truly identify what it happening in your body.

    JC
  • BrendansMom
    BrendansMom Member Posts: 4
    #6
    DFSPsucks said:

    DFSP is not always slowly growing
    I just want people to know, that although DFSP may be slowly growing, this is not the case in everyone.

    This type of cancer is too rare to say that it always grows slowly.

    In my sitution, the lump I had grew very rapidly and the tentacle like projections spread aggressively.

    It can grow fast!
    My 9 year old son's dfsp on the top of his foot grew within 2-3 months. We are now 4 months our from wide local resection and considering radiation.

    Melissa
  • Unknown
    Unknown
    #7
    DFSP
    Hi,

    Sorry I haven't responded in so long.

    In my case, the cancer spread beyond what was visible to the naked eye; so the MOHS procedure is best for this reason, although I do not know about the difference between Slow Mohs or regular Mohs.

    Likewise, even though the cancer is slow growing, it can hasten growth over time and this is what happened to me over the past few years.

    Although I had an MRI a week before surgery, it did not show all of the growth; they found it during surgery, thus my being in surgery for 5 hours. That is the value of Mohs.

    JC
  • kellinedcassi76
    kellinedcassi76 Member Posts: 1
    #8
    DFSP

    Hi 

    My daughter thought she had a cyst on the middle of her stomach. Saw various doctors for different things over the past 6 years and always mentioned it, but was waved away with it just being a cyst. Saw a skin specialist late Oct 2016 to have a mole removed and as it has grown larger she asked if he could remove it also. No worries just a cyst we'll remove it under a local anesthetic. Not going into prolonged details but it wasnt a cyst. Had the "removal of the rest of it" with a surgeon 30/11/2016. 5cm up and 5 cm down, 2cm either side and 5 cm deep was what was removed ( Scar tissue etc and to get clear margins)  Thought she was going to have radiation but the radiologist didnt seem to think she needed it. Now nearly 3 months on she has had the whole area swell up and is very tender/sore. Ultrasound tomorrow ( Wed 22/2/17) to see what the problem may be. GP thinks maybe the mesh has moved? will know more tomorrow. Just interested to know if anyone else out there in the world has gone thru the same if not a similiar diagnosis.

     

    Linda

  • natmcg
    natmcg Member Posts: 134 Member
    edited April 2017 #9
    kellinedcassi76 said:

    DFSP

    Hi 

    My daughter thought she had a cyst on the middle of her stomach. Saw various doctors for different things over the past 6 years and always mentioned it, but was waved away with it just being a cyst. Saw a skin specialist late Oct 2016 to have a mole removed and as it has grown larger she asked if he could remove it also. No worries just a cyst we'll remove it under a local anesthetic. Not going into prolonged details but it wasnt a cyst. Had the "removal of the rest of it" with a surgeon 30/11/2016. 5cm up and 5 cm down, 2cm either side and 5 cm deep was what was removed ( Scar tissue etc and to get clear margins)  Thought she was going to have radiation but the radiologist didnt seem to think she needed it. Now nearly 3 months on she has had the whole area swell up and is very tender/sore. Ultrasound tomorrow ( Wed 22/2/17) to see what the problem may be. GP thinks maybe the mesh has moved? will know more tomorrow. Just interested to know if anyone else out there in the world has gone thru the same if not a similiar diagnosis.

     

    Linda

    Sorry to hear about your daughter.

    Hi i have just read you post and am very concerned that you your daughter is being treated by a GP and I presume a general surgeon.

    I strongly recommend that you seek the advice of a sarcoma specialist. DFSP is NOT a typical skin cancer. Sorry to be so blunt and I don't want to scare you. If you go to the other thread here with the same name except with DFSP at the end and go to the last page you will see a lot of recent advise from other people with dfsp.

    I'm not sure why they have used mesh as i have more than that removed and didn't need a skin graft or mesh and my wound had healed well.

    In case you don't find the other thread I'll check back here in a couple of days.

    I'm in Australia, not sure where you are so not much use me directing you to any one in particular.

    I'm sure everything will be fine. Did they give your daughter any antibiotics?

    Hope to hear from you again.

    Natalie 

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