Dermatofibrosarcoma protuberans (DFSP)

Digger33 said:

DaisysMom - At my first surgery with Dr. Watson, he said the latest research shows that radiation for DFSP is only marginally effective so he does not support radiation when he can get clean margins. The plastic surgeon who closed me up this time was surprised I wasn't getting it. I have a follow-up with Dr, Watson next Thursday and I was going to ask him about it again. Right now, there are no plans for it.

Craig - when I had my CT scan, it showed 2 spots on my liver and 3 spots on my right lung. All were < than 5MM. Doctor Watson considered them nothing special and probably due to normal wear and tear of living and breathing in an industrial society. He said they don’t even biopsy anything until it is at least 1CM but he will look for changes in any future CT scans. The folks who did the CT scan recommended all kinds of follow-up tests but Dr. Watson said they usually do that just for precaution. Hopefully, yours will be nothing too. Good luck.

-Steve-

Steve,

Thanks for the information. I am feeling really good and sense that my spot is similar to yours. Mine is 2cm by 3cm in size and I'm hoping it is a hemangioma, which is a dense cluster of small veins and arteries. I will let you know my results when they come back. Hope you're feeling better.

Craig

Rancho said:

Steve,

Thanks for the information. I am feeling really good and sense that my spot is similar to yours. Mine is 2cm by 3cm in size and I'm hoping it is a hemangioma, which is a dense cluster of small veins and arteries. I will let you know my results when they come back. Hope you're feeling better.

Craig

Hi Steve,

I had my last consult with my surgeon today (Oct. 21). My liver spots are complex cysts. My next check-up is in one year. I am back to work and my stamina is good. Hope all is well with you. Take care and thanks for walking the path with me.

Craig

So Frustrating
Wow, I am glad that I'm not alone in being totally confused about all this! I am 23 years old and was diagnosed with DFSP 5 months ago. Ever since that day that I found out what this lump on my back was (which had been there for over TEN YEARS and was misdiagnosed as scar tissue from a broken rib when I was in middle school!) I feel like every person or doctor that I have spoken with has a different story or theory about what to do about all this. It's so frustrating! I am lucky that I am feeling better lately but I went through three surgeries (one with a general surgeon, two with a plastic surgeon) After the third surgery, my surgeon called and said that he had gotten clear margins (finally) I was was then sent to see a radiologist. This radiologist then told me that my plastic surgeon had only gotten 3 milimeters past the cancerous tissue and then he told me that was "completely inadequate" and that I needed to go back to my surgeon and have ANOTHER surgery done to get further past the cancer! I was so confused. I went back to my surgeon who then told me that he had already scraped the muscle on my back and had removed ALL the fat and fascia and that if he did another surgery, he would be cutting "blindly" into muscle and I would most likely lose most of the function of my left arm (just a side note: I'm a hair stylist, so losing function of my arm...no an option if at all possible) I was pissed and felt like these doctors hadn't even spoken to one another. Two days later I saw my oncologist who told me he was going to take charge. He then told me that I needed 33 treatments of local radiation. I completed that almost exactly one month ago. Now I have no idea where I really stand. I can't have a pet scan until August and I'm getting married in May. It's just all so frustrating! Why is there no general concencus on this disease! I understand that it's a complex disease but I just wish that someone could give me some more CONCRETE answers. I doubt this helps anyone, but I have been looking for other survivors to vent with...thanks.

codyredd421 said:

So Frustrating
Wow, I am glad that I'm not alone in being totally confused about all this! I am 23 years old and was diagnosed with DFSP 5 months ago. Ever since that day that I found out what this lump on my back was (which had been there for over TEN YEARS and was misdiagnosed as scar tissue from a broken rib when I was in middle school!) I feel like every person or doctor that I have spoken with has a different story or theory about what to do about all this. It's so frustrating! I am lucky that I am feeling better lately but I went through three surgeries (one with a general surgeon, two with a plastic surgeon) After the third surgery, my surgeon called and said that he had gotten clear margins (finally) I was was then sent to see a radiologist. This radiologist then told me that my plastic surgeon had only gotten 3 milimeters past the cancerous tissue and then he told me that was "completely inadequate" and that I needed to go back to my surgeon and have ANOTHER surgery done to get further past the cancer! I was so confused. I went back to my surgeon who then told me that he had already scraped the muscle on my back and had removed ALL the fat and fascia and that if he did another surgery, he would be cutting "blindly" into muscle and I would most likely lose most of the function of my left arm (just a side note: I'm a hair stylist, so losing function of my arm...no an option if at all possible) I was pissed and felt like these doctors hadn't even spoken to one another. Two days later I saw my oncologist who told me he was going to take charge. He then told me that I needed 33 treatments of local radiation. I completed that almost exactly one month ago. Now I have no idea where I really stand. I can't have a pet scan until August and I'm getting married in May. It's just all so frustrating! Why is there no general concencus on this disease! I understand that it's a complex disease but I just wish that someone could give me some more CONCRETE answers. I doubt this helps anyone, but I have been looking for other survivors to vent with...thanks.

DFSP Question
Hello, I've never posted so I don't know if this goes to one person or a messege board. I'm Rachel and I'll be 27 in a couple of days. I was diagnosed in 2006 and have had clean scans since my surgery (mass excision from my hip), leaving a scar that goes from my spine and wraps around my left hip. My oncologist determined radiation was not necessary.

There have been no problems since then, but now I have another lump on my leg. This feels the same, but it drains. The DFSP on my hip did not. Its been there for several months now and I'm not sure whether it needs to be biopsied. Has anyone else experienced drainage (just a little oil) with their DFSP? I'm working on my PhD and trying to get through the semester. I don't want to go through this again if I don't need to. Any advice would be appreciated! Thank you, Rachel

Rachelsb said:

DFSP Question
Hello, I've never posted so I don't know if this goes to one person or a messege board. I'm Rachel and I'll be 27 in a couple of days. I was diagnosed in 2006 and have had clean scans since my surgery (mass excision from my hip), leaving a scar that goes from my spine and wraps around my left hip. My oncologist determined radiation was not necessary.

There have been no problems since then, but now I have another lump on my leg. This feels the same, but it drains. The DFSP on my hip did not. Its been there for several months now and I'm not sure whether it needs to be biopsied. Has anyone else experienced drainage (just a little oil) with their DFSP? I'm working on my PhD and trying to get through the semester. I don't want to go through this again if I don't need to. Any advice would be appreciated! Thank you, Rachel

DFSP
Hi Rachel,

I did not have drainage with my growth but had pain. I hope you have had it checked by now.

Sheila

she150 said:

DFSP
Hi Rachel,

I did not have drainage with my growth but had pain. I hope you have had it checked by now.

Sheila

Dx April 6, 2009 with DFSP
Hi Everyone,

It is good to read other people's experiences with DFSP. Apparently I am the first case in my medical town of having DFSP on the face. I was DX in April 2009 after having a mass removed from under my right eye. I was sent to a plastic surgeon and they removed a area alittle smaller than a tennis ball from my right cheek and lower eyelid area. My surgery was on 4/29/09 and I am continuing to heal. I went to an oncologist this week and they will do a MRI at the end of July to make sure nothing has come back. We will go from there. The oncologist told me they might have to send me to another city or state? because this is rare especially on the face. Has anyone else experienced this on the face?

she150 said:

Hi cdodgin,
Mine is on my
Hi cdodgin,

Mine is on my upper left shoulder and about one inch across. My growth was there for a little over 9 years. The first biopsy in 2000 showed dermafibroma. I do not know when mine turned to sarcoma. They removed my growth with the expectation it was still a dermafibroma and had no clear margins in either direction. I go back 06/02 for moh's surgery. How big was your growth before they did your surgery? I am new to this as well and never heard of it until this month.

On my Back
I had DFSP on my back, i m 27 yr old,i had it removed when i was 14 which it was not sarcomas one, then 9 years later it started to grown again i wait for 5 years to get it removed cause everytime i went to the doctor, they said you can love with it, it's nothing. until it brothering me and i got it removed. i did wide excision the size 2 by 2 inches by i have 15 cm scar. I want to ask what are the procedure the doctor do to you when you go for follow up. I have to follow up every 3 months for 2 years. Hope you are all stay healthy !!

cdodgin said:

Dx April 6, 2009 with DFSP
Hi Everyone,

It is good to read other people's experiences with DFSP. Apparently I am the first case in my medical town of having DFSP on the face. I was DX in April 2009 after having a mass removed from under my right eye. I was sent to a plastic surgeon and they removed a area alittle smaller than a tennis ball from my right cheek and lower eyelid area. My surgery was on 4/29/09 and I am continuing to heal. I went to an oncologist this week and they will do a MRI at the end of July to make sure nothing has come back. We will go from there. The oncologist told me they might have to send me to another city or state? because this is rare especially on the face. Has anyone else experienced this on the face?

DFSP on the face
You are not alone! I was diagnosed with DFSP last June after notice a small lump running just above my left eyebrow to just below my hairline. My primary dr thought it was a cyst and referred me to a plastic surgeon to have it removed. The plastic surgeon did not agree with the cyst diagnosis, but did not think it was anything serious, so it was removed in his office without a biopsy. After it was removed, he knew that it was indeed serious and sent the tumor off for a pathology report. I received the diagnosis a week later. Since then I have had two surgeries to remove additional tissue, and finally received the wonderful news of a clean margin this past January. In between surgeries, I tried a round of chemo - Gleevec - which had shown promise in others with DFSP, however, my body was unable to tolerate the drug and I had to stop after just 3 weeks of a scheduled 12 week treatment plan. I truly feel for you. Most people with DFSP are able to "hide" the scars and no one is the wiser, but when it is on your face, it's a little harder to do. I've changed the way I wear my hair and can cover up most of the scars, but not all of them (they start above the middle of my left eye and run across my forehead to just above my left ear, and from the front of my scalp all the way back to the crown of my head - the surgeon quit counting after 50 staples).

Best of luck with your recovery!

Cheryl

Cweaver said:

DFSP on the face
You are not alone! I was diagnosed with DFSP last June after notice a small lump running just above my left eyebrow to just below my hairline. My primary dr thought it was a cyst and referred me to a plastic surgeon to have it removed. The plastic surgeon did not agree with the cyst diagnosis, but did not think it was anything serious, so it was removed in his office without a biopsy. After it was removed, he knew that it was indeed serious and sent the tumor off for a pathology report. I received the diagnosis a week later. Since then I have had two surgeries to remove additional tissue, and finally received the wonderful news of a clean margin this past January. In between surgeries, I tried a round of chemo - Gleevec - which had shown promise in others with DFSP, however, my body was unable to tolerate the drug and I had to stop after just 3 weeks of a scheduled 12 week treatment plan. I truly feel for you. Most people with DFSP are able to "hide" the scars and no one is the wiser, but when it is on your face, it's a little harder to do. I've changed the way I wear my hair and can cover up most of the scars, but not all of them (they start above the middle of my left eye and run across my forehead to just above my left ear, and from the front of my scalp all the way back to the crown of my head - the surgeon quit counting after 50 staples).

Best of luck with your recovery!

Cheryl

Had Mohs done 3 weeks ago
Hi everybody,

just to add my story as well. I am 34 and I was diagnosed with DFSP on the right upper chest about five months ago. I had the tumor for ten years. I had it checked regularly because I could see it was growing, slowly, but stedily. It was always wrongly diagnosed for a bening cyst, or for a scar. I have to say that luckily at some point, the tumor became painful, which pushed me to go to the doctor more and more frequently. Usually I would just get antibiotics, because doctors thought it was a cyst that would get inflamated. I was lucky enough one day to meet a different doctor that adviced me to get a biopsy done on it. The biopsy clearly showed it was a DFSP and had to be removed. I had Mohs done, at St. Thomas's hospital, London, uk. They took out the tumor mass and an additional 1cm all around it. THe 1cm rim was then analysed to check for tumor roots and found to be free from it. This left me with a 13 cm long 6 cm wide hole on my chest, no skin, no fat, down to the muscle. It was patched up by a plastic surgeon using a skin flap from the side of my chest. I have to say the skin flap looks really bad. THe shape of the area is different than my healthy side and I wonder wheather it will ever go back to a more symmetric and normal state. Of course I shall be glad the tumor has been taken all out. I will have regular check up for the next five years to check for recurrence. I did not have to do any radio or chemo therapy. Throughout the procedure I had minimal pain, eventhough I was given very strong paikillers (including morphine). I hope things will soon get back to normal and I can get back with to my every day life.