Dermatofibrosarcoma protuberans (DFSP)

11012141516

Comments

  • natmcg
    natmcg Member Posts: 134 Member

    I was diagnosed Nov 6 2012
    Hello, I felt so alone when I was diagnosed last week.I am 40 years old and saw my DSFP about 3 years ago.At least that is the first time I noticed it.It was on the middle of my lower back and so I thought it was a scar from a epideral. Anyways, I had a mole on my side bothering me and I went to have it looked at.While there I asked if they would take a look at my back since it did look different and had another spot beside it. well, it came back DSFP.I was the first case in that office and now I am waiting on a referral to a surgeon. I found a support group for this on face book! There are a litte over 300 people on there. I hope all goes well and please keep in touch. Sandy

    Hi Sandy, how have things turned out? Have you seem a surgeon yet? I hope your able to have Mohs done. My scar is healing really well and I don't go back for another checkup till April nxt yr.
    There have been a few new comers to this group but not many post more than once. Maybe they find the Facebook group easier to access.As for me I like this site antd still log in regularly. Not only to keep in touch wth DFSP people but because I can find out lots of.stuff about throat cancer which another family member is dealing with.
    Please know your not alone and 90% of us here had our DFSP over looked and/or misdiagnosed for many yrs. ( in my case over 10yrs of Dr.s saying my lumps were fatty tissue-nothing to worry about)

    So you should be able to get clear margins with a bit of surgery and after some rest and recoup you'll be fine
    My only advise would be ask lots of questions,and ho with a Dr.that has delt with DFSP before,so many still have no knowledge on this.type of cancer.
    Best of luck
    Nat Mcg.
  • gayled627
    gayled627 Member Posts: 6
    kyoungs said:

    DFSP on forehead
    I was just diagnosed with DFSP. Tumor removal was 9/14/11. It was located on my forehead above my left eyebrow near the hairline. Doctor called me 9/20 with results. Cleveland Clinic contacted me 9/21 to schedule the first consultation for 10/3/11. I have been reading as much information as I can. I was told that I would need reconstructive surgery. I believe MOHs surgery is the best solution, however, based on the location and additional unknowns, I have to be prepared for other alternatives. Please keep all information coming!

    How is your forehead doing? Mine waiting on surgery
    Hey Kyoungs.....I don't know if you look on the board any longer but I was curious about how your treatment went. I too have a tumor on my forehead but I think it's closer to my left eyebrow than what you seem to have. My treatment may go up to my scalp line so I would love to know how your surgery and recovery went. How is the scar doing? Does it stop hair from growing in the scalp? I'll wait to see if you reply to this before I go on with other info and questions. In any case, I hope all went well with you.
  • natmcg
    natmcg Member Posts: 134 Member
    natmcg said:

    sarahtim & mikey77
    Hi I'm an Australian with DFSP, this site is the best and most informative one that I have come across since I found out I had DFSP 2wks ago I have already had one op.but will be seeing another Dr.about Mohs nxt week as margins are not clear. I'm very lucky to have wonderful support from my GP & Skin cancer clinic. I've been worried about the eventual size of my wound and scar,(under my breast.) But after reading your posts(& others on this site) I realize Im being silly. No one will see my scar. I am still concerned about the size my wound will reach as my tumor started over 10yrs ago, then was misdiagnosed as fatty nodule by ultrasound in 2004. Thankfuly things have moved along quite quickly in the last 2wks.

    Wishing you all the best in your recovery.

    Nat.

    I have DFSP and feel so alone,
    Oops
  • natmcg
    natmcg Member Posts: 134 Member
    cmguy777 said:

    Thanks Nat Mcg. I am still recuperating from surgery. Sutures healing well. This discussion has helped knowing others are going through relatively similar situations. I am glad your Mohs procedure went well and I hope your brother will have a successful treatment for his throat cancer.
    cmguy777

    take it to the top
    Just making sure this thread stays near the top.
  • natmcg
    natmcg Member Posts: 134 Member
    cmguy777 said:

    Thanks Nat Mcg. I am still recuperating from surgery. Sutures healing well. This discussion has helped knowing others are going through relatively similar situations. I am glad your Mohs procedure went well and I hope your brother will have a successful treatment for his throat cancer.
    cmguy777

    take it to the top

    Just making sure this thread stays near the top.

  • natmcg
    natmcg Member Posts: 134 Member
    cmguy777 said:

    Thanks Nat Mcg. I am still recuperating from surgery. Sutures healing well. This discussion has helped knowing others are going through relatively similar situations. I am glad your Mohs procedure went well and I hope your brother will have a successful treatment for his throat cancer.
    cmguy777

    take it to the top
    Oops
  • natmcg
    natmcg Member Posts: 134 Member
    cmguy777 said:

    Thanks Nat Mcg. I am still recuperating from surgery. Sutures healing well. This discussion has helped knowing others are going through relatively similar situations. I am glad your Mohs procedure went well and I hope your brother will have a successful treatment for his throat cancer.
    cmguy777

    take it to the top
    Oops again
  • ryan and family
    ryan and family Member Posts: 15
    natmcg said:

    From Natmcg
    Just though I let you know my MOHS went we'll. Clear margins after the first excision on the day .Surgeon recomended taking a bit more all the way round and down to the muscle(cancer was already in fatty tissue) I agreed . 35 stitches later with my prescription for painkillers in hand my husband and I headed for home. So now Im on the road to recovery. The Dr. hasn't mentioned checkups yet. I suppose we will talk about it when I get my stitches out in 10days. So I couldn't ask for a better result.

    Ryan how is you son ? I pray he is now completely DFSP free and you are all enjoying good health.

    Zing 77 , hope your recovery is still progressing well.

    Take care
    Nat.

    follow up

    Hello Nat, so very glad to hear, and and sorry for prolonged follow up... 

    Our son is healing well to date after numerous surgeries. Our 'check ups' after the last surgery was every 2 weeks for period of time, then transitioned to once a month, then 2-3 month check up.  We are now (very recently) on a 3-5 month check up schedule. Our approach (as a family), is to process on visit-by-visit basis (block) for a 2-3 year period following each surgery/update.  So far, we have a very good update process involving several specialties which has been very helpful.  ith this, we are vigilent with daily care for graft healing which may lead to reconstructive surgery down-the-line.  Very are glad to hear about your progress, and will continue to touch base.   

    Ryan and family.

  • ryan and family
    ryan and family Member Posts: 15
    natmcg said:

    From Natmcg
    Just though I let you know my MOHS went we'll. Clear margins after the first excision on the day .Surgeon recomended taking a bit more all the way round and down to the muscle(cancer was already in fatty tissue) I agreed . 35 stitches later with my prescription for painkillers in hand my husband and I headed for home. So now Im on the road to recovery. The Dr. hasn't mentioned checkups yet. I suppose we will talk about it when I get my stitches out in 10days. So I couldn't ask for a better result.

    Ryan how is you son ? I pray he is now completely DFSP free and you are all enjoying good health.

    Zing 77 , hope your recovery is still progressing well.

    Take care
    Nat.

    follow up

    Hello Nat, so very glad to hear, and and sorry for prolonged follow up... 

    Our son is healing well to date after numerous surgeries. Our 'check ups' after the last surgery was every 2 weeks for period of time, then transitioned to once a month, then 2-3 month check up.  We are now (very recently) on a 3-5 month check up schedule. Our approach (as a family), is to process on visit-by-visit basis (block) for a 2-3 year period following each surgery/update.  So far, we have a very good update process involving several specialties which has been very helpful.  ith this, we are vigilent with daily care for graft healing which may lead to reconstructive surgery down-the-line.  Very are glad to hear about your progress, and will continue to touch base.   

    Ryan and family.

  • radtechbb
    radtechbb Member Posts: 3 Member
    natmcg said:

    take it to the top
    Oops again

    Hi Natalie,
    I found the

    Hi Natalie,

    I found the thread and thought I would put my story on this one.  I was diagnosed with DFSP 16 1/2 years ago.  I had a "knot" on my toe and that had been there for 2 1/2 years before I did anything about it.  I had three rounds of surgery to get clear margins and I have been cancer free since.  I did not have radiation, the diagnostic scans I had was a MRI (after the 2nd surgery) and a CT Chest (just for my peace of mind).   I was 22 when first diagnosed and was only the 2nd person in the state ever diagnosed with this type of cancer.  It looks as though the information I am seeing here is what I was told over 16 years ago: (1) that <5% of the cases will spread and if so usually in the lungs and (2) the most effective treatment is surgery.  I have not had any reoccurance since my last surgery in 1996 (knock on wood).  I just wanted to let the newly diagnosed know that there are some oldies out here that have been doing fine since treatment.

    Becky

  • natmcg
    natmcg Member Posts: 134 Member

    follow up

    Hello Nat, so very glad to hear, and and sorry for prolonged follow up... 

    Our son is healing well to date after numerous surgeries. Our 'check ups' after the last surgery was every 2 weeks for period of time, then transitioned to once a month, then 2-3 month check up.  We are now (very recently) on a 3-5 month check up schedule. Our approach (as a family), is to process on visit-by-visit basis (block) for a 2-3 year period following each surgery/update.  So far, we have a very good update process involving several specialties which has been very helpful.  ith this, we are vigilent with daily care for graft healing which may lead to reconstructive surgery down-the-line.  Very are glad to hear about your progress, and will continue to touch base.   

    Ryan and family.

    ryan amd family
    Hello again, it was good of you to check in and give an up date on how your son is coping. And even better to hear that things are going well. I'm 6mths post op and due for a check up. I'm pretty sure I will get a good report.
    This site has slowed down quite a bit( which I hope is a good thing) but every now and then someone adds a post.
    Once again nice to heat from you.
    Best wishes for more good news
    Nat Mc.
  • hairoom
    hairoom Member Posts: 1
    head dfsp

    I was diagnosed with scalp dfsp in Aug 2012  went to a specialist at University of Michigan hospital  dr Bradford   she is a head and neck oncologist otorynologist plastic surgeon  she is the best    my follow up is in March  she knows a ton about this cancer and has done many surgeries  they consult with atumor board and many doctors team up for this  good luck 

  • natmcg
    natmcg Member Posts: 134 Member
    hairoom said:

    head dfsp

    I was diagnosed with scalp dfsp in Aug 2012  went to a specialist at University of Michigan hospital  dr Bradford   she is a head and neck oncologist otorynologist plastic surgeon  she is the best    my follow up is in March  she knows a ton about this cancer and has done many surgeries  they consult with atumor board and many doctors team up for this  good luck 

    Head dfsp
    Hi, just noticed that you have added a post here.sorry that you have had a DFSP diagnosis. But it sounds like you have been fortunate enough to get some really knowledgable Dr.s straight up.

    Not every one diagnosed with DFSP has been that lucky.
    If you would like to keep posting and be in touch with the few of us who still drop in from time to time we have been posting under the heading DFSP (recurrence) .we don't all have recurring DFSP but somehow that's where all the most recent posts ended up.
    My DFSP was under my left breast and was removed by Mohs last August. I haven't been for my checkup yet . But will
    be soon. I live in Australia as do some of the others who have posted. There is also a Canadian lady (Jo) how's cancer site was identical to mine and we have been chatting regularly for a few months.
    I'm a bit curious about how you first disscovered the cancer. Did you feel a lump/growth.? Was it itchy or painful? Lots of us where misdiagnosed for several mths or even years( I was).
    I hope you do decide to post on the other thread and share you experience. I know the others would welcome your input.
    Best of luck
    Natalie.
  • Jessie5
    Jessie5 Member Posts: 4 Member
    DFSP on my back

    I was diagnosed with dfsp in 2010. It was a small lump which was removed and it was negative. 2 years later it came back in late 2012 and my surgeon removed it again under local anesthesia. Lab report came with positive margins. I had wide excision done in jan 2013 leaving me with a 6 inch scar on my back, this time report came with negative margins but less then 1cm. My surgeon told me i have to go for another surgery and this time she will be working with a plastic surgeon as there will be involvement with skin graft as margins needs to be at least 2cm or more, otherwise it has higher chance of coming back again. My question is should i do more reserch before i get this surgery done. Did my surgeon do the right thing. I was also told that i am not a candidate for MOHS procedure as my scar is too big for it. Some one please help me, i am worried alot. Frown 

     

  • Lone111
    Lone111 Member Posts: 32
    Jessie5 said:

    DFSP on my back

    I was diagnosed with dfsp in 2010. It was a small lump which was removed and it was negative. 2 years later it came back in late 2012 and my surgeon removed it again under local anesthesia. Lab report came with positive margins. I had wide excision done in jan 2013 leaving me with a 6 inch scar on my back, this time report came with negative margins but less then 1cm. My surgeon told me i have to go for another surgery and this time she will be working with a plastic surgeon as there will be involvement with skin graft as margins needs to be at least 2cm or more, otherwise it has higher chance of coming back again. My question is should i do more reserch before i get this surgery done. Did my surgeon do the right thing. I was also told that i am not a candidate for MOHS procedure as my scar is too big for it. Some one please help me, i am worried alot. Frown 

     

    Hi Jessie
    i'm sorry to hear

    Hi Jessie

    i'm sorry to hear that the dfsp came back. I think most surgeons are satisfied with a clear margin of 1 cm. i had my dfsp removed march 12 and i'm waiting on the pathology and i was told that my surgeon would accept a 0,8 cm clear margin. But given your history i think it is good thing that your surgeon is going for a clear margin of at least 2 cm.

    I don't know anything about MOH's surgery but i'm sure others will write here too.

    good luck with your decision, and your surgery.

    Lone

  • natmcg
    natmcg Member Posts: 134 Member
    Lone111 said:

    Hi Jessie
    i'm sorry to hear

    Hi Jessie

    i'm sorry to hear that the dfsp came back. I think most surgeons are satisfied with a clear margin of 1 cm. i had my dfsp removed march 12 and i'm waiting on the pathology and i was told that my surgeon would accept a 0,8 cm clear margin. But given your history i think it is good thing that your surgeon is going for a clear margin of at least 2 cm.

    I don't know anything about MOH's surgery but i'm sure others will write here too.

    good luck with your decision, and your surgery.

    Lone

    just saying hello
    Wellcome Jessie to our little group( but sorry you had the need to do so.). I'm a little confused as to why you say the first lump was negative but diagnosed as DFSP. You haven't mentioned.where you live or where your previous surgeries were performed. You definitely should do some research or be more informed by your team of Dr.s about how they are dealing with your reoccurrence.
    But try not to worry yourself to much. I have read in other posts that plastic surgons have.been called in bit they do mot always have to get involved. Have you had or are they planning for you to have any scans/xrays before surgery to try and determine how much more needs to be excised?.
    At tihis point Im not going to try and.influence you in any way, ( Im not informed enough myself)but if time allows maybe you should seek a second opinion.

    We.have a fellow DFSP saviour called Joanne who is very good at sifting through the mass of information on the internet and finding the information that relates to this type of cancer. And Im sure she will be able.to help you somewhat.. so please.keep.checkimg in and.we.will all.do our best to support you through this stressful time as best we can.
    Please know you are not alone. And things will eventually be ok.

    Take care
    Natalie.
  • Ontario48
    Ontario48 Member Posts: 66 Member
    Jessie5 said:

    DFSP on my back

    I was diagnosed with dfsp in 2010. It was a small lump which was removed and it was negative. 2 years later it came back in late 2012 and my surgeon removed it again under local anesthesia. Lab report came with positive margins. I had wide excision done in jan 2013 leaving me with a 6 inch scar on my back, this time report came with negative margins but less then 1cm. My surgeon told me i have to go for another surgery and this time she will be working with a plastic surgeon as there will be involvement with skin graft as margins needs to be at least 2cm or more, otherwise it has higher chance of coming back again. My question is should i do more reserch before i get this surgery done. Did my surgeon do the right thing. I was also told that i am not a candidate for MOHS procedure as my scar is too big for it. Some one please help me, i am worried alot. Frown 

     

    Found You!

    Hey Jessie, Nat had told me about your post and for some reason I had a heck of time finding it.  Anyhow, I assume from your 2010 excision you got a negative pathology report.  Do you know how much the clearance was on that removal.  That may be an indicator for your recurrence...something I'd find very interesting to know (and others) as we all have the "recurrence cloud" hanging over our heads.  There is much debate on what to remove to achieve clear margins.  The "acceptable" measurement from existing cancer cells to clear margins ranges in the reports I've been reading.  There aren't many articles that speak to this and I couldn't find a rule of thumb measurement.

    Is your surgeon a dermatologist or general surgeon? Here's what I experienced.  I had a general surgeon do my first excision, he took the whole thing off 1x3" incision (was thinking it was cancerous).  Mine was on my chest just below my left breast, it was about the size of a nickel.   It came back DFSP, the cancer was on the underside (so deep side) and a bit on the edge.  The GS sent me to a Mohs clinic thinking I'd get that procedure.  That doc did a WLE like yours instead, he just felt for me it was the way to go (size of incision was a factor).  I think it was due to the location as well (but then Nat got Moh's & hers was in the same spot)

    Everything I had read said 2-5cm all round for excision.  But he only did 1cm which concerned me.  He did take the fascia as mine was deep.  He said he was confident we'd get clear margins. We did.  So I read more and found out that statistics say Mohs saves more healthy tissue and the average clearance came within 1cm removal.  I suspect that's why my doc (who has is a Moh's fellowship) went with the smaller excision as in his experience it produced clear margins. 

    But I am still a little muddy on where the cancer was in relation to the clear margin.  This will be something I will ask my next doctor.  I was told to get a dermatologist for follow up.  I decided to go with a sarcoma specialist.  I've read in a number of articles that if  you have a sarcoma you should see a sarcoma specialist.  Sarcomas are very rare (1% of all adult cancers) and DFSP is rare within that group.  So I googled and found a sarcoma clinic and a doc that specializes in STS (soft tissue sarcoma) and sent her an email.  She wrote back that she will take me on and review all my reports.

    SO, after all that I would suggest if you can, find yourself a STS specialist if you feel you want another opinion.  Sounds like your surgeon is being very cautious allowing wide margins, which is good as it's better to be on the safer side.  All that being said, this is a tricky kind of cancer and because of the root like projections its extremely hard to get it all hence why recurrence is commom.  Will your doc do  a chest screen...I've read this is prudent with regrowths (and the Moh's doc said that too).  This cancer, if it spreads goes to the lungs.   There is a good up-to-date article at the National Comprehensive Cancer Network.  You will need to read it twice I am sure LOL, I did. There is also a good section on sarcomas on the American Cancer Society (or Association).

    I hope this helps and once I see the STS specialist I will hopefully have more info to share from that angle.  If you are unsure about this next surgery, take your time and get all the questions answered that you have.  A second opinion won't hurt.  You have time as they've got it all out as it stands.

    Cheers, Joanne

  • Ontario48
    Ontario48 Member Posts: 66 Member
    Jessie5 said:

    DFSP on my back

    I was diagnosed with dfsp in 2010. It was a small lump which was removed and it was negative. 2 years later it came back in late 2012 and my surgeon removed it again under local anesthesia. Lab report came with positive margins. I had wide excision done in jan 2013 leaving me with a 6 inch scar on my back, this time report came with negative margins but less then 1cm. My surgeon told me i have to go for another surgery and this time she will be working with a plastic surgeon as there will be involvement with skin graft as margins needs to be at least 2cm or more, otherwise it has higher chance of coming back again. My question is should i do more reserch before i get this surgery done. Did my surgeon do the right thing. I was also told that i am not a candidate for MOHS procedure as my scar is too big for it. Some one please help me, i am worried alot. Frown 

     

    Hi Lone,

    I read some yesterday on measurements to clear margins (this is the pathology findings not the actual excision clearence) as this is something I will discuss with my doctor.  There isn't much as far as statistics that I could find.  I googled DFSP recurrences.  I found a recent report that speaks to conditions that would promote recurrence based on a case study of 158 patients from the same medical centre. 

    Now take all this with a grain of salt as this is my understanding of what I read, this is to just give you some possible questions to review with your doc should you choose to.  I  by no means am an expert, just trying to understand all this myself ")

    The study referenced the clearance margins... less than 1mm is favorable for recurrence, more than 1mm is less favorable (really splitting hairs).  I found a few interesting facts for what they call "Event Free Survival" (EFS), meaning no recurrence of primary,  regional or distant (mets) disease.

    - mm to clear margin

    - age, 50 and over higher recurrences

    - site, limbs, head and neck higher recurrences

    - variant, FS-DFSP (Fibrosarcomatous) higher recurrence & possible mets, where DFSP is considered a low-grade malignancey FS-DFSP is considered high-grade

    - histology, lower expression of CD34 & Apol-D (these are protiens) , higher mitolic index and increased cellularity (I think these speak to how the cells grow within the tumor) higher recurrence.  They noted lots of debate on these factors as to whether they truely make a difference.

    - macroscopic surgical margins vs. microscopic (I believe this speaks to clearing every edge of the margins as in Moh's, I know my pathology wasn't as thorough as that used for Moh's, so I suspect WLE uses Macro as the specimen is so big.  BUT I would expect that depends on the pathologist doing the testing)

    All of what I have read states successful removal of all of the tumor returns the best prognosis regardless of all of the other factors and regardless of whether you had Moh's or WLE.  In your case I'd be interested to know how the above faired out in your original pathology reports and how it compares to now. 

    I will be reviewing this with the STS doc and will share what I learn with all after my appointment.

    Cheers, Jo

  • Ontario48
    Ontario48 Member Posts: 66 Member
    hairoom said:

    head dfsp

    I was diagnosed with scalp dfsp in Aug 2012  went to a specialist at University of Michigan hospital  dr Bradford   she is a head and neck oncologist otorynologist plastic surgeon  she is the best    my follow up is in March  she knows a ton about this cancer and has done many surgeries  they consult with atumor board and many doctors team up for this  good luck 

    Surgical Oncologist!

    Thanks Hairoom.

    I really do think that having an oncoligst in the mangement of this (or any) cancer is key.  A regular dermo isn't an oncologist.  I see them as the GP of the skin world.  I've been reading alot about soft tissues sarcomas recently and comparing it to the skin cancer angle.  It's so different.  Some patients see an oncologist and some don't, do not know why this is.  But you have reaffrimed the importance.  They know cancer...period. I have read about the tumor board as well and there is one specific to STS.  Very cool.  I am going to the Mount Sinai Sarcoma Clinic in Toronto for follow up...really looking forward to that discussion.

    Hope all is going well for you!

    Joanne

  • Lone111
    Lone111 Member Posts: 32
    Ontario48 said:

    Hi Lone,

    I read some yesterday on measurements to clear margins (this is the pathology findings not the actual excision clearence) as this is something I will discuss with my doctor.  There isn't much as far as statistics that I could find.  I googled DFSP recurrences.  I found a recent report that speaks to conditions that would promote recurrence based on a case study of 158 patients from the same medical centre. 

    Now take all this with a grain of salt as this is my understanding of what I read, this is to just give you some possible questions to review with your doc should you choose to.  I  by no means am an expert, just trying to understand all this myself ")

    The study referenced the clearance margins... less than 1mm is favorable for recurrence, more than 1mm is less favorable (really splitting hairs).  I found a few interesting facts for what they call "Event Free Survival" (EFS), meaning no recurrence of primary,  regional or distant (mets) disease.

    - mm to clear margin

    - age, 50 and over higher recurrences

    - site, limbs, head and neck higher recurrences

    - variant, FS-DFSP (Fibrosarcomatous) higher recurrence & possible mets, where DFSP is considered a low-grade malignancey FS-DFSP is considered high-grade

    - histology, lower expression of CD34 & Apol-D (these are protiens) , higher mitolic index and increased cellularity (I think these speak to how the cells grow within the tumor) higher recurrence.  They noted lots of debate on these factors as to whether they truely make a difference.

    - macroscopic surgical margins vs. microscopic (I believe this speaks to clearing every edge of the margins as in Moh's, I know my pathology wasn't as thorough as that used for Moh's, so I suspect WLE uses Macro as the specimen is so big.  BUT I would expect that depends on the pathologist doing the testing)

    All of what I have read states successful removal of all of the tumor returns the best prognosis regardless of all of the other factors and regardless of whether you had Moh's or WLE.  In your case I'd be interested to know how the above faired out in your original pathology reports and how it compares to now. 

    I will be reviewing this with the STS doc and will share what I learn with all after my appointment.

    Cheers, Jo

    Thanks Jo - I think tht

    Thanks Jo - I think tht leaves me in group of no reorcurrence if it follow the statistics. Event Free Survival :-) how nice

    I hope my surgeon calls soon to say the margin are at least 1.5 :-)

    thanks, 

    lone