Dermatofibrosarcoma protuberans (DFSP)

airforcewifeky said:

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

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.

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

Just making sure this thread stays near the top.

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

ryan and family said:

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.

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 

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.  

 

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

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.  

 

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

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 

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