Dermatofibrosarcoma protuberance (DFSP) Recurrence

Osterbar said:

DFSP experience
Hi, I'm new to this board, and am a 2-year survivor of synovial sarcoma, but I'm actually writing about DFSP. My wife is a 50+ year survivor of DFSP. She had it on her leg as a child in the late 1950s, and had several recurrences before they did a wide-area excision. She was fine until 1991, when she had a recurrence, treated at the time at Mass General Hospital with surgery followed by radiation (60 gray). She has had issues recently with site of a skin graft taken for her 1991 surgery, but has not had a recurrence of the tumor in more than 20 years/

I urge you to go, if you can, to a cancer center with expertise in sarcoma. I highly recommend Mass General not just because of our experience there (I was treated there myself, with an aggressive chemotherapy regimen that few other cancer centers use), but also because its reputation is well earned. I'm a medical journalist by profession, and write about oncology for a professional audience, and know from my professional (and personal) experience that some places are better than others, and that only a handful have seen enough sarcoma cases of any variety to be able to claim expertise.

DFSP can be treated successfully with a combination of careful surgery - not necessarily Mohs - and radiation. Recently, targeted cancer agents have been tried with some success in clinical trials.

Good luck, and let us know how things work out.

Grich5 said:

DFSP
Just wanted to see where you are with DFSP? I just joined CSN and saw this post. I was diagnosed with DFSP on my upper right chest this past April, and had mohs surgery 2 days ago and reconstruction. I am very happy that I had mohs! The surgery took all day because I had to have 2 rounds of mohs and repair, but my doc felt very sure that she got it all. She also explained to me that if she would have done a wide excision she probably would have missed the little bit that was found in my chest muscle. Good luck to you and I hope you are able to have mohs surgery.

e79lewis said:

Hi Nat
I also live in

Hi Nat

I also live in Australia and was diagnosed with DFSP last year. I had my MOHs surgery in London however as I was living in the UK when I was diagnosed. Having just moved back to Sydney I am struggling to find a doctor to take on my case. Would you mind telling me who your DFSP specialist is ? I was operated on by a dermatological surgeon as the cancer was in the skin, next layers of tissue and muscle. I have found one DFSP specialist but he is an orthopaedic surgeon. 

Thanks for your help.

Emily

Welcome to our little group,but sorry to hear you have needed to find us. I'm more than happy to recomend my Doctor to you he operated on me at the Skin & Cancer Foundation Hospital in Westmead.ph 02 8833 3000. His name is Dr Duncan Stanford,and he has a lovely caring nature. I originally saw him at jis office on the south coast (Kiama) because I live near there. And travelled to Westmead for the day surgery. But he may do consultations in Sydney as well. The Kiama ph.no.02 4232 2011. I'm sure they will be able to work something out. If you Google him there is some info on him there also. I did ask him how he got involved with DFSP and he told me he had done some research and presented the information at a conference and from then on his colleagues started to refer DFSP patients to him. There are other dermatologist in Sydney that I looked at as they did Mohs, but my GP recomend I see Dr Stantord as he new he had experienced with our rare cancer. And Im glad I took the advice. My DFSP was under my left breast in the fat tissue and skin luckily it hadn't got to the muscle. I'm due for my first 6mthly checkup in Feb. My scar has healed well and looks ok to me, but Ill feel a lot better when I get the all clear from Dr. Stanford. I'll check this space again soon so please let me know how you get on. If you don't mind me asking? Do you think you need more treatment or are you just looking for someone to do the checks incase of reoccurrence.? Either way good luck. If you do feel you want to talk about your cancer to others have had DFSP there are a couple of nice people Iv been keeping in contact with on the thread called DFSP friends. Bye for now. Natalie.

Hi Natalie

Thanks so much for that - its really helpful to find someone who has performed Mohs on DFSP here in Sydney.  I will give them a call.  I saw a dermatologist this week but he has no experience with either, and today I saw a DFSP specialist (orthopaedic surgeon & sarcoma specialist) at Royal Prince Alfred Hospital but they were very against Mohs and said wide excision was the only way to go. I didn't like their approach at all.  I just need a doctor for the ongoing monitoring now, as my surgery last year removed all the cancer. But I would like to find a doctor who agrees with the Mohs technique as I really think it was the right way to go.  It seems like its a war between the dermatologists and orthopaedic surgeons as to which is the right method to use ! My scar is 15cm long (from a 7.5cm lump) and I shudder to think what it would have been if I had wide excision instead.  In the UK they monitor every 3 months, and I had my first check up before I left which went fine. I am due for another checkup in April and then an MRI in September.

Thanks again, Emily

e79lewis said:

Thanks Natalie

Hi Natalie

Thanks so much for that - its really helpful to find someone who has performed Mohs on DFSP here in Sydney.  I will give them a call.  I saw a dermatologist this week but he has no experience with either, and today I saw a DFSP specialist (orthopaedic surgeon & sarcoma specialist) at Royal Prince Alfred Hospital but they were very against Mohs and said wide excision was the only way to go. I didn't like their approach at all.  I just need a doctor for the ongoing monitoring now, as my surgery last year removed all the cancer. But I would like to find a doctor who agrees with the Mohs technique as I really think it was the right way to go.  It seems like its a war between the dermatologists and orthopaedic surgeons as to which is the right method to use ! My scar is 15cm long (from a 7.5cm lump) and I shudder to think what it would have been if I had wide excision instead.  In the UK they monitor every 3 months, and I had my first check up before I left which went fine. I am due for another checkup in April and then an MRI in September.

Thanks again, Emily

Well, as much welcome as someone would want having to deal with cancer in all.  Natalie has been a great chat over the months that I have been on here.  Our situations are almost identical except for procedure.  She had Moh's, I had WLE.  So it's really good to hear what she has experienced and to be able to share what each of our doctors are saying.  Glad you are able to get a personal recommendation for a care giver in your area.

I just had a good (meaning thorough) chat with my original surgeon.  I had my protuberan removed in whole at my first procedure with a doc in my town (3x1" incision).  General surgeon.  When it came back DFSP he referred me to Women's College in Toronto to deal with the rest of tumor as they have a large skin cancer centre there and Moh's specialists.  When I got there though they decided to do Wide Local Excision to my surprise.  There continues to be great debate on this part.  I've read probably everything posted online on the subject and there really is a divide.  I applaud your doc as due to the size of your tumor most would have chosen WLE (based on my laymens knowledge of course).  The tipper is usually the size of tumor and location.  Anything face, head and neck is alway Moh's, trunk and extremeties is usually WLE.  May I ask where yours was and how it got so large before you had it removed.

I guess for me I was lucky to have a Moh's surgeon to do the procedure.  He removed smaller margins than a typical WLE (1cm all round most recommend 2-5).  I think this was due to his experience with Moh's.  Moh's study shows clearance achieved in most situation within 1cm.  Another rule of thumb if its' deep (as mine was) is to take the fascia as well.  If he was wrong on the 1cm it would mean another surgery.  My pathology came back clear, so this is good.  But this is where things get a little mucky for me.  In speaking with my original surgeon he explained the pathology piece in great detail as I had done lots of reading on this and I wanted to understand what they did with my "deposit".  Moh's completely clears all edges of the margins, WLE does not.  The testing that is completed on WLE is as extensive as it can be but it is not as thorough as Moh's. This is due to the enormous size of most specimens for WLE (as he explained it), it would take forever in the lab.  So there is a higher margin of error.  Cancer cells can be missed in the procedure.  With Moh's, there could be something missed outside the test area, as in Natalie's case.  Her doc got clear margins but then said I'm going to take a little more to be sure.  He found more.  Either way, it's difficult to get all of those little cells floating around.

Good news is that is considered a low to med grade cancer which very rarely metastisizes, usually only with the FS variant (Fibrosarcoma).  Reoccurance is common and most doctors don't do any other screening (MRI, CT) here unless you have DFSP-FS or a recurrence. I suspect your screening is more thorough due to the size of your tumor.  It's locally agressive. MRI is the best test to detect any interior growths.  Geeze, it doesn't take long to fill up a page does it.

No matter what you can always demand to be referred to a Moh's surgeon if that is your preference.  So us three ladies are lucky as we have Moh's centres near us.  We all know the signs of this tumor if it should regrow.  It's a wait and see kind of thing unfortunately.  But I have been told by the Moh's surgeon, regrowth is almost alway in the original site, only 1% new growth elsewhere has been reported. So at this point we must manage our scars.  And don't be discouraged if you suspect something and you get the push off "it's nothing".  That's how all of this started for me.  Most doctors, specialist or otherwise, don't have a clue what to look for as it is so very rare.  I have had a "smudge" appear below my scar. The doc said "its nothing", ha, like I haven't heard that before LOL.  But at least I know to watch it and pay attention to any changes.

I'm watching the ladies golf this afternoon, Australian Open.

Cheers, Joanne

natmcg said:

Nice words
Hey Joanne, I just read your post to Emily. I love the way you can explain our type of cancer in normal terms. You really HAVE done your homework. And its great that one day when someone new turns to this site they will be able to read your clear and concise information. As you know I googled quite abit in the beginning( and scared the hell out of myself). If I had have know you then I could have been saved a lot of trouble(and worry) .
Just to make it clear for anyone else reading these posts. When I had my Mohs.the original large peice removed on the day which took over 2hrs to be tested) came up clear margins. But when that slab as the Dr.called it was sent to the lab for the more intense testing (stained I think its called) they detected DFSP on one edge. But the extra doughnut shaped peice that be remover just to be double sure had clear margins all round on the inside edge. So because he did that on the day it saved me going back again. And that's the whole point of having Mohs.
He also explained, what you have read that it's a very hard cancer to detect as the spindels(roots) look so similar to normal cells and it takes a well trained eye to see them.

I'm glad someone appreciates our golfers....personally ...watching golf is like watching paint dry....not that I don't appreciate the skills involved...but all that walking makes me tied..and Im not even doing it...lol.

Nat.

LOL, Well Nat, you do know I watch paint dry as well (doing renos and all).  I would rather play it but sometimes, when its friggin cold here (-22C), and I don't feel like doing anything, it's my excuse to sit and do nothing.  I must also point out that I tend to have a wee nap during the round...our secret!! : )  Thanks so much for your kind words.  There are all kinds of "horror" stories online.  I focused on information that came from reputable sites, not speculation or opinion.

In regards to Emily's concerns about Moh's vs WLE, if I had to do it again, I would insist on Moh's.  BUT we all know how hard that is in the face of professionals.  My doc was a Moh's doc and he insisted on WLE (holy confusion).  I'd ask for drugs (happy, happy, happy) next time!! Didn't really give a reason but said in "his experience" it was the way to go.  We put all our faith in what they say.  At the end of the day if we are all clear and continue to be it's a mute point.  The key is that there is no re-growth.  And really we are talking about tiny minescule cells, anything can happen and we cant' blame the docs, the Moh's or the WLE.  It is what it is and will be what it will be.  We can all feel better knowing that this type of cancer has an extremely high cure rate regardless.  If you had to pick a cancer, this one is a good one to choose due to its mortality rate. 

Dont' get me wrong, it's a big deal to be told you have cancer. You will go through all kinds of emotions...don't rush yourself it truely is a journey that you must work through.  Time WILL heal you!  And it's nice to make new friends and have chats with those who know what you are going through.  IT HELPS!!

Cheers for now, Joanne

Ontario48 said:

Ya Gotta Love Those Auzzie Accents!

LOL, Well Nat, you do know I watch paint dry as well (doing renos and all).  I would rather play it but sometimes, when its friggin cold here (-22C), and I don't feel like doing anything, it's my excuse to sit and do nothing.  I must also point out that I tend to have a wee nap during the round...our secret!! : )  Thanks so much for your kind words.  There are all kinds of "horror" stories online.  I focused on information that came from reputable sites, not speculation or opinion.

In regards to Emily's concerns about Moh's vs WLE, if I had to do it again, I would insist on Moh's.  BUT we all know how hard that is in the face of professionals.  My doc was a Moh's doc and he insisted on WLE (holy confusion).  I'd ask for drugs (happy, happy, happy) next time!! Didn't really give a reason but said in "his experience" it was the way to go.  We put all our faith in what they say.  At the end of the day if we are all clear and continue to be it's a mute point.  The key is that there is no re-growth.  And really we are talking about tiny minescule cells, anything can happen and we cant' blame the docs, the Moh's or the WLE.  It is what it is and will be what it will be.  We can all feel better knowing that this type of cancer has an extremely high cure rate regardless.  If you had to pick a cancer, this one is a good one to choose due to its mortality rate. 

Dont' get me wrong, it's a big deal to be told you have cancer. You will go through all kinds of emotions...don't rush yourself it truely is a journey that you must work through.  Time WILL heal you!  And it's nice to make new friends and have chats with those who know what you are going through.  IT HELPS!!

Cheers for now, Joanne

Hi Joanne,

I am Jeff from New South wales, Australia and I  thank you" for your positive outlook. It maybe -22 where your are but I live in sub tropical Aust and even to move makes a sweet

I am new to DFSP but I plan not to let it define me. My first annaul MRI and CT were clear and I feel well. I retire on 1.3.13 "(this Friday) so you can imagine I still have 25% of my life to go. The dignosis came as a suprise but it has helped me to re evaluate my life. I was going to work longer but I will now persue volunteer work.

Trust all is well with you.

Best Wishes

Jeff

Coffey said:

DFSP

Hi Joanne,

 

I am Jeff from New South wales, Australia and I  thank you" for your positive outlook. It maybe -22 where your are but I live in sub tropical Aust and even to move makes a sweet

I am new to DFSP but I plan not to let it define me. My first annaul MRI and CT were clear and I feel well. I retire on 1.3.13 "(this Friday) so you can imagine I still have 25% of my life to go. The dignosis came as a suprise but it has helped me to re evaluate my life. I was going to work longer but I will now persue volunteer work.

Trust all is well with you.

Best Wishes

 

Jeff

 

Hi Jeff, nice to have retirement so close.  Enjoy, Enjoy, Enjoy!  When did you notice a problem, how was it detected and what did you have to go through.  It`s amazing all my buddies on here are Auzzies...so cool. I would rather the heat than the cold.  I find its easier to cool off then warm up.  I suspect from your post that you have had your removal and all is good!!

Four sleeps to retirement...Wahoo...Cheers, Joanne 

Ontario48 said:

Happy Retirement

Hi Jeff, nice to have retirement so close.  Enjoy, Enjoy, Enjoy!  When did you notice a problem, how was it detected and what did you have to go through.  It`s amazing all my buddies on here are Auzzies...so cool. I would rather the heat than the cold.  I find its easier to cool off then warm up.  I suspect from your post that you have had your removal and all is good!!

Four sleeps to retirement...Wahoo...Cheers, Joanne 

Greetings Joanne from Australia,

My short story is this;

I noticed an unusual lump on the rear of my left upper arm about 6 inches down from my shoulder. It was pertruding. I was referred to a Skin Specialist who said "don't worry its only a cyst!! OH YEAH.. Even I knew that was wrong.

Nevertheless, and back with my GP I persuaded him to excise it and after almost 4 weeks of pathology and after sending the sample away from Australia the DFSP decision came back. The remanents of the sarcoma lession by this time had come to the surface after the GP's cut and it was radiating red lines out from the 1 inch cut. No this was not an infection but the disease breathing and growing as I put it. Next followed quick surgury and a wide long insision with the doctor not really knowing why the cut was so big or had to be. I got the impression he read up on it that morning. After 6 months of wound infection on 14.9.12 the wound healed over exactly 6 months after the op. First C/T and MRI this month were clear except to find that a metalic clip had been left in my arm.

The value of any major health problem is that you get a chance to re evaluate the bigger questions of life and to adjust if you are given time. That is why I retire in two days time. Work is good but the best day in the Office does not count for much when you are dying (hopefully in twenty five years time). I want to remember the continuing great marriage I have the good I have done by volunteering, the fact that I have watched my grand children grow and have become part of their lives. This also means by default more quality time with my adult children. I could say that DFSP was good for me for these reasons but only if it does not re occur.

Enough of me. How are you??? What is your story and is your Countries health system more across this than mine?? Today the weather is fine after almost 3 weeks of rain and heavy winds. Welcome to global weather change!!!

Best wishes

Jeff