Dermatofibrosarcoma protuberans (DFSP)

natmcg said:

I have DFSP and feel so alone,
Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.

Best wished to everyone.
From Australian with DFSP

Thankyou Ryan and family and Zing77s
Thankyou to both of you for your replies to my last post. Ryan I am so happy to hear that you precious little boy is recovering and coping with what he has been through. You must be very proud of him. I have never experienced cancer with any of my three sons,but did have to be there when two of them(at different times) were recovering from surgery so I have a bit of understanding of what you have been through. Good luck for the future.

Zing77s (Jason) Your previous input on this forum(along with others) and my research has enabled me to approach my Dr.with confidence and ask questions if I needed to. I am very lucky to be in the hands of one of the most experienced DFSP surgeons in Australia.He has delt with 12other people with this cancer and studied MOHs in your beautiful country(my son had been there three times and I hope to see the sights one day too.) I'm not expecting to need a graft as the area involved is on my left upper stomach and scaring is not an issue. I chose to have the tumor removed 5wks ago by my skin cancer Dr.even though he gave in the option of being referred for MOHs.(I was this Dr.s second DFSP patient.)I was hoping that as my tumor was relatively small 2-3cm( 1in) that one excision would be enough but clear margins were not achieved and I now know that it has spread to fatty tissue. In hindsight I suppose had I opted to wait for the specialist to do MOHs I may now have been at the other end of this ordeal. Anyway thanks again for all the info and suggestions you have put forward over the last few mths and it's great to hear your cancer free and have such good movement back in your shoulder and arm. My surgery is in two weeks so untill then I am going to count my blessings of which I have many and get on with things.
Best wishes to all
Nat.

ryan and family said:

quick follow up to natmcg and zing77s
Hello Natmcg. Also, "zings" comments for us were very helpful particularly related to reconstruction longer term. We have focused on short term, and it was very helpful to understand longer term expectations during the short term. At this point, key questions for us included:

-how long should we wait until free? At leat 2-3 years seems to be a benchmark if not longer.
-is mohs or wide margin the best procedure? After long talks, mohs was elected not to be the best for small toddlers given duration of surgery. This made sense with the informtation and consultation provided for circumstance with a very wide margin.
-what is the best procedure for surgery and reconstruction. Please provide examples.
-What does reconstruction look like (what ever it is)? Please provide examples.
-how are you going to do check ups and how to monitor this? We would like a team to do this. Who is the medical team and who is the lead? May we come back with questions?

And, very carefully, what sources of information are you using to do this? Very recently, we elected to do a post-surgery bioposy to make absolutely sure that dfsp has not come back in such a short time. Our son's hair texture changed and our medical team was supportive to check this with a negative result today (given that there is very little information available and we wanted to make sure). With this, we will now enjoy this summer. Wishing you the very best over next several weeks and months, and also, to Zing77s too. ryan and family.

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.

tenkireport said:

Questions about DFSP recurrence (from Asia)
Hi, I am from Taiwan in Asian and glad to know this forum discussing DSFP. My girl friend was diagnosed "DFSP" 2.5 months ago in Taiwan and had surgery in May 2012. This is also very rare here in Taiwan but luckily the doctor had done the surgery to 1 person before. Since the tumor was on her stomach so plastic surgery is no needed. She had wide excision combined with MOHS (this is what I heard) and recovering very well now. Although she still feels tired sometime but I believe she is getting better.

When we first know this DFSP we were so scared and checked many info from website.
Now I am concerning with the high occurrence rate of DFSP and maybe people from here can give me some advice.

Since the high recurrence for this type of cancer, does anyone have recurrence after 3 years of operation? and does it appears close to the previous surgery or it can be far away from it? also what is the symptom of recurrence?

I would like to know more info so I can take care of her well.. thanks. Pray for all people here healthy and recovery well.

tenkirport
Hi, my name is Natalie, I had DFSP on my stomach also. It's only 10 days since my MOHS surgery. I don't know how much research you have done, but every thing I have found out leads me to believe that there is always a small chance that cancer will reoccure,and if it does it will most likely be on or around the existing scar.

But personally I will be requesting a biopsy if I find any lump or unusual skin disorder anywhere on my body. That may sound a bit paranoid. But the area of skin where my tumor grew was discolour and strange looking for many years and even when a lump did grow I was told by more than 1 doctor that it was harmless. So in that respect I suppose I was lucky ,that it was slow growing in my case and had only gone as far ad the fatty tissue

I have also read that people have biopsies done at their regular checkups (the time between checkup seems to vary from one person to another)

If I find out any new information I will post it here. I am still new to all of this. If you haven't read through the other stories on this forum you should try and go through them some have some really interesting information.
Kind regards to you and your girlfriend.
Bye for now
Natmcg.

natmcg said:

tenkirport
Hi, my name is Natalie, I had DFSP on my stomach also. It's only 10 days since my MOHS surgery. I don't know how much research you have done, but every thing I have found out leads me to believe that there is always a small chance that cancer will reoccure,and if it does it will most likely be on or around the existing scar.

But personally I will be requesting a biopsy if I find any lump or unusual skin disorder anywhere on my body. That may sound a bit paranoid. But the area of skin where my tumor grew was discolour and strange looking for many years and even when a lump did grow I was told by more than 1 doctor that it was harmless. So in that respect I suppose I was lucky ,that it was slow growing in my case and had only gone as far ad the fatty tissue

I have also read that people have biopsies done at their regular checkups (the time between checkup seems to vary from one person to another)

If I find out any new information I will post it here. I am still new to all of this. If you haven't read through the other stories on this forum you should try and go through them some have some really interesting information.
Kind regards to you and your girlfriend.
Bye for now
Natmcg.

another short update.
Well how are you all, fine I hope.
My final checkup after Mohs surgery was three wks ago. I was Lucky that my Dr.took a bit more out before he sewed new up, as the stained biopsy showed that there was still a very small spot of cancer on the edge of the initial excision. My scar is healing much better than I expected,and I can do most everything I did before the op with little or no pain. My nxt checkup is in Feb.13.
Best wishes &take care.
Nat.

giffer said:

DFSP
My apologies if I haven't posted this correctly; I had trouble figuring out how to post here and I hope I'm not just responding to one person.

A familiar story, it seems. I had a lump on my lower back, on the beltline, when I was in my early to mid 20s (I'm now almost 43) and was always told it was a cyst or even a boil. One doctor diagnosed it as a boil from across the room. Finally one doctor looked at it and said it was no boil and sent me to a surgeon to have it removed. He excised it, thinking it was a cyst, I believe, and a few weeks later I was called in for a consultation and found out it was DFSP. They were surprised as it's so rare, but I was told it was nothing to worry about, though it had to be removed or it would continue to grow. The surgeon said he sees about four cases a year in a city of 3.5 million. They excised the wider area--the size of a woman's fist, he said--and I was told that they got it all. I didn't have further problem with the DFSP but the area where I had the surgery became infected and I was hospitalized and then was stuck at home for almost three months with daily visits from nurses to pack the wound, not an experience I'd like to do again.

Seventeen years later and all seems fine. I was never told to get it checked again. I didn't even realize it was a form of cancer until I visited this board. I plan to visit a dermatologist as soon as I can for a check-up. I have many moles and a family history of cancer, so that would seem the prudent thing to do.

Thanks,

Jim

Hi Jim,
I'm not sure how you came across this site but if it led you to getting a checkup its a good thing. DFSP is always easier to treat if found early. Wow I can't believe you weren't told to get regular check ups.
I had trouble working out how to post here as well.(you may have noticed a few of us.have double up on entries because we can't work out how to delete the extras). You have probably realized by now that your post is added to the list of entries and anyone can read it. People here have been a bit quiet lately, I'm sure that's a good thing. As far as cancers go DFSP once removed (wound repaired & healed) is quick to get over. I still log on regularly to check the head&neck cancer posts as well as here. My brother has recently been diagnosed with throat cancer and I wanted to find out as much as I could about what he is in for. They are a very brave group of people in Head & neck section .
Good luck with the check up
Nat.

I am not a medical doctor and can not give any medical advice. Each case of DFSP is apparently different. I was diagnosed with DFSP in my upper left calf in September, 2012. The lesion was approximately 2-3 cm wide. After consultation and research I went to a Mohs micrographic surgeon who performed MM surgery in November, 2012. I was given local anesthesia and after three excisions clear margins were obtained. I was sutured by the Mohs micrographic surgeon. I believe the earlier cancer stage one can get to the DFSP tumor, the better. My tumor was in the lower fatty area of the dermis, however, did not extend into the muscle region, thankfully. I was impressed how Mohs micrographic slides and mapping by the MM surgeon tracked the tumor cells aiding the MM surgeon to take the least amount of healthy tissue out. I hope your case with DFSP has been resolved. Thanks.

Mikey77 said:

New to network
I was diagnosed with DFSP on January 13th 2012, it started with three small bumps on my forehead. Went to a dermatologist here in northern wisconsin and they biopsied them. Test came back positive for DFSP so the next step they sent me to UW Madison under the care of DR. Steven Snow this man work under the founder of MOHS surgery DR. Fredrick Mohs for people who do not know what MOHS stands for. Anyway they did a wide area excision on my for head about 5.6" wide by 7" long. The wound starts about 1/2 inch above my brow line and goes to the middle of my head. All tissue and muscle was removed to skull and after 8 surgerys all margins were finally clear. Two weeks later I was sent to a plastic surgeon who installed a graft on my skull with a graft jacket to get live tissue growing again so they can place the final skin graft on top of it. The first layer was a donor skin. After the graft they installed a wound vac which helped tremendously over the next couple of weeks. I am looking at having my final graft before may 1 2012 and hopefully on the road back to normal. Great site and good luck to all!!!!

My forehead gone awry!!
I'm just reading this DFSP board and see your situation is similar to mine. I was first diagnosed back in '08' and had surgery to remvove 3 tumors. Went on Gleevec in '09' and now 3 years later the Gleevec isn't keeping the growth at bay. Just saw my doc yesterday and MRI shows it's larger and now I need to consult with a MOHS Dr., a radiologist and have my first CT scan (on my neck). I've had regular MRIs to monitor my forehead. I'm very concerned with how much the tumors have spread as it started above the center of my left eyebrow and has spread down to the same level of my eyebrow almost in between my eyes. Reading your story this location scares me because it's so close to my eye now.

My doctor told me I may need radiation after another surgery but I have yet to get all the tests done so my medical team can discuss my case. I feel in good hands with the drs. I'm working with. He told me I may lose all or part of my eyebrow and maybe a small part of hair at my scalp line if I need radiation treatment. Just sharing all this is freaking me out and I'm losing my focus right now. I'm glad I found this chat room and hope I can find folks to share and support with.

If anyone out there has had radiation treatment where there is hair, can you tell me if it grew back? I'm already dealing with a scarred and lumpy section of forehead and now am possibly facing more mutilation and scarring. Reading postings here is reassuring but also scary because this type cancer is so pervasive and hard to contain. Everyone has a different story which is educating me immensely and I thank all of you for that.

Thanks,
Gayle

gayled627 said:

To Australian DFSP...
I'm now to this chat room and read your posting. I was wondering how you're doing and how your surgery went. Reading all these DFSP postings is truly educational and I feel blessed to have found this. For 3 years I've been using Gleevec which has kept my main larger tumor (on my forehead) from growing (it actually shrunk for while) but now it's lost its' affect and my tumor is growing. I'm facing some tests and consultations in the next couple weeks and my team will let me know what they recommend for me. It all feels so scary now that it's taken on a life of its' own. I feel like I'm going to start rambling while not following any one train of thought so I'm signing off now to go to bed. Thanks for all of you out there educating me with your stories....I appreciate it!

Hi, my name is Natalie and Im sorry to hear you're DFSP is not responding to the medication. But firstly thanks for asking and Im doing fine I had Mohs surgery in Aug to remove 2 small tumors under my left breast and didn't need a graft as there was enough stretch in my skin to just pull it all together a and stitch it up.(I did post some updates that are further down on this list) I going back to my specialist nxt wk as Im concerned about a lump just under my left ear that seems to have changed shape. Im hoping he will remove it on the day.
Now...Im a bit confused(which isn't unusual for me lol) you said your new here but you joined in July 2011?
Also Im curious as to why your tumor/tumors weren't removed with Mohs surgery? From what I read in the other posts(most of the people don't write anymore) Gleevec is used for DFSP that has reocurred. You mentioned a team so Im guessing you have been dealing with the same Dr.s for some time.
Stay positive when ever you can,and if you feel scared or lonely just log on and write it here that's what I did more than once and it.made me feel better just getting it off my chest. No one is going to judge you..your going through a lot and need support. I hope you got a good sleep.
I'm going to try and start a new thread called"DFSP Friends" because as much as I have appreciated reading all the stories and info from DFSP survivors I would like to just get on and chat without having to scroll through all the posts.
Anyway look.whos rambling on now.
If you want you can always contact me with a personal message through this site.
Take care. Nat

natmcg said:

Hi, my name is Natalie and Im sorry to hear you're DFSP is not responding to the medication. But firstly thanks for asking and Im doing fine I had Mohs surgery in Aug to remove 2 small tumors under my left breast and didn't need a graft as there was enough stretch in my skin to just pull it all together a and stitch it up.(I did post some updates that are further down on this list) I going back to my specialist nxt wk as Im concerned about a lump just under my left ear that seems to have changed shape. Im hoping he will remove it on the day.
Now...Im a bit confused(which isn't unusual for me lol) you said your new here but you joined in July 2011?
Also Im curious as to why your tumor/tumors weren't removed with Mohs surgery? From what I read in the other posts(most of the people don't write anymore) Gleevec is used for DFSP that has reocurred. You mentioned a team so Im guessing you have been dealing with the same Dr.s for some time.
Stay positive when ever you can,and if you feel scared or lonely just log on and write it here that's what I did more than once and it.made me feel better just getting it off my chest. No one is going to judge you..your going through a lot and need support. I hope you got a good sleep.
I'm going to try and start a new thread called"DFSP Friends" because as much as I have appreciated reading all the stories and info from DFSP survivors I would like to just get on and chat without having to scroll through all the posts.
Anyway look.whos rambling on now.
If you want you can always contact me with a personal message through this site.
Take care. Nat

Back at you Nat
Thanks for your words! I had first joined this site last year (I forgot about it) but didn't feel I had much to say.

My tumor was reacting well to Gleevec and I felt I was sailing along. I did get Gleevec because the first removal of my largest of 3 tumors (in 2008) was not complete and it grew back again in about 5-6 months. I didn't know about MOHS when I first had the 3 tumors removed and biopsied. Once it grew back again I was told that MOHS would be difficult in my case because of how spread out the roots could be. The surgeon said there could be a 70% recurrence rate with MOHS and a very messed up forehead. So I started Gleevec which did shrink it and keep it that way for 3 years. Now Gleevec is no longer working so I'm faced with the challenge of a new course of treatment. I don't expect to see my oncologist until mid Dec, which is when I'm finished with a CT scan and consults with both a radiologist and the dermatology surgeon/MOHS specialist. When I get the plan they recommend, I'm sure I'll be back for input.

Right now I'm curious to know if radiation helped anyone out there. I'm not quite sure how it fits into the scheme of things. Is it done after surgery or before? Why can't radiation alone work? Will it harm anything deeper than my scalp? etc, etc, etc. In the meantime, I just love this site. It's soooo full of info!!! I've been reading personal stories by others for hours now. That's it in a nutshell.

If you make a new thread (which sounds like a great idea) will I be able to find it by using a search? Right now I don't mind scrolling thru the stories to get to mine, but it will get old fast. Not sure how this site works yet. Maybe I should look around b4 I ask.

Take care Nat,
Gayle