Dermatofibrosarcoma protuberans (DFSP)

Rancho

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

weathergirl15

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

Good article about DFSP and Glivec
I just posted this at the www.sarcomaalliance.org site as well. Here is a good link to a very comprehensive article about DFSP/FS-DFSP and Glivec (Gleevac, Gleevec).

http://www.glivec.com/pdfs/G0039 monograph.pdf



Hope you find it helpful.

Gail
FS-DFSP 2 years NERD
left pelvic area of trunk
surgery to remove primary tumor, followed by resection, followed by 7 weeks radiation

Rancho

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

WillemwithaV

MOHS vs Wide excision
I am curious. How many of you received MOHS as opposed to wide margin surgery the first time you had it excised?

I was diagnosed earlier this year, and had my surgery in April. I'm 25 years old, so I guess age doesn't play such a big role, compared to other cancers.

The site was on my abdomen, right on my belt line, which is probably a good thing as it made me go in for a checkup earlier than i may have otherwise. The tumor was 2, maybe 3 cm across although perhaps bigger under the skin surface.

I am lucky enough to be in the Boston area, and was referred to an dermatological oncologist, who had seen numerous cases of DFSP. He determined that he would use MOHS despite the relatively small size and uncomplicated position of the tumor. As it turns out, I am very fortunate that he had the insight. Despite the immediate testing of MOHS, the doctor sent the tissue off for a second opinion at another lab, and they found that there was a microscopically small root structure that went outside of the excised area and needed to be addressed. So one week later, I was back in for another round of MOHS, and the results came back with negative margins for both the on site and secondary double check.

I did some reading and it seems like MOHS seems to have a significant statistical advantage of curbing recurrence over standard surgeries if used as the primary procedure, perhaps due to the very fact that it can catch tiny cancerous fragments that might otherwise be missed. I believe the stats show that the recurrence rate is cut from something like 25-40% in standard vs 2% for MOHS.

I am not sure if insurance will cover it for everyone, but it seems significant enough to me to push for if indeed it makes that much of a difference.


I am 6 months clear now, staying humble but optimistic that i've put it behind me. Best of luck to you all, and stay healthy.

codyredd421

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.

gamiro

Rancho said:

Mohs procedure and recurrence
I opted for the more radical surgery, CCPDMA. It stands for "complete circumferential and peripheral deep-margin assessment." I had clear pathologic margins after this procedure that was done on September 2, 2008. I will be having a body scan later in the month. At this time I will not need radiation or Imatinib mesylate therapy. Access www.nccn.org for DFSP. It discusses clinical practical guidelines for our cancer.

Good luck,
Rancho

CCPDMA
Rancho,

I've seen the CCPDMA procedure in the NCCN guidelines. You're the first individual that I've heard of that had this procedure. Where and who did the surgery?

It seems hard to get a good recommendation on a procedure. If you go to an oncology surgeon they recommend wide excision, if you go to a dermatologist they recommend Mohs.

Thanks,

Greg

Rachelsb

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

quebec09

coolme said:

I was diagnosed with this in June this year. I've had the surgery and have been told of a medicine (Gleevec) that I have to use. Has anyone used this yet? Are ther side effects? I'm worried! I'm told this is a rear thing. I'm looking anywhere for as much information as I can get.

Gleevec user for dfsp ?
Hi! I'd like to know if you have used the gleevec for your dfsp since you posted your message last year. I am about to start it soon (May 2009) as a first line of treatment to avoid mutilating half of my face with a surgery. I do know the stats about the possible responses of the tumor (57% complete and 83% total, including partial resp.). I'd like to know if you have experienced similar results and what side effects please...Thanks

she150

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

angelagreen

steetanya said:

I have been diagnosed with DFSP, I would like to discuss this cancer with someone else who has it.Since it is rare there are not a-lot of cases out there.If anyone has had this please contact me at t_steeeno@verizon.net I am very worried

DFSP
I am a 2 year survivor. I didn't have the MOHS surgery which is highly recommended but so far so good. I was diagnosed January 31, 2007 which was on my back. I get check ups on it every year.

cdodgin

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

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?

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.

Lita

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

The mass that came up under
The mass that came up under my eye was originally about 1 inch and grew to about 2-3 inches, that is when I went back to have it rechecked. They got clean margins now and hopefully it will stay that way! I dont need anymore of my face removed! Hope all is well with all of you.

Cweaver

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

Digger33

Rancho said:

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

Checking in
Craig,
I hope everythng is still going well for you. I just had my second post surgery check up and so far so good.

I just wanted to let folks know there are two groups on facebook where people are talking about their DFSP experience. Some folks have posted pictures there too. There are 2 groups:

Dermatofibrosarcoma Protuberans - has ~ 40 members.
DFSP - DERMATOFIBROSARCOMA PROTUBERANS - has ~25 members.

You may want to check it out.
I hope everyone is doing well.

Ale

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.

sen0760

dfsp to the left jaw area
I was diagnosed with dfsp after the 3rd surgery . 1rst 1993 size 1 inch round ( said was lipoma), 2nd 1996 size 1.5 inch by 2in and 1/2in(said was lipoma but noduled and dark brown red in coler) the third was in 1998,lump size almost a large egg( said was dfsp, and made with wide incision, back muscle parts of the jaw were cut, parotid gland was cut, bone bridge connecting eye to ear was cut, and upper facial nerve was cut) Later site was crafted from my leg 2 in by 2 in. No follow up treatment was made and 2 yr Mri was negative. This month after MRI, a lump(1 in. round) was found occupying my parotid gavity, and i am waiting for biopsy reasults( a piece was taken by a micro surgey under laocal anestesia ). The last surgeon did a great effort , I was over confident and did not follow after 2 years by doing MRI images every year. yet I always checked the area by hand for any new irregular lumps. All time had a regular full life. Hope the best for me and others. It is another element of fighting in the couse of staying alive. Best luck .

Unknown

sen0760 said:

dfsp to the left jaw area
I was diagnosed with dfsp after the 3rd surgery . 1rst 1993 size 1 inch round ( said was lipoma), 2nd 1996 size 1.5 inch by 2in and 1/2in(said was lipoma but noduled and dark brown red in coler) the third was in 1998,lump size almost a large egg( said was dfsp, and made with wide incision, back muscle parts of the jaw were cut, parotid gland was cut, bone bridge connecting eye to ear was cut, and upper facial nerve was cut) Later site was crafted from my leg 2 in by 2 in. No follow up treatment was made and 2 yr Mri was negative. This month after MRI, a lump(1 in. round) was found occupying my parotid gavity, and i am waiting for biopsy reasults( a piece was taken by a micro surgey under laocal anestesia ). The last surgeon did a great effort , I was over confident and did not follow after 2 years by doing MRI images every year. yet I always checked the area by hand for any new irregular lumps. All time had a regular full life. Hope the best for me and others. It is another element of fighting in the couse of staying alive. Best luck .

Diagnosis
Hi, This is my first post to this board. I have had a lump on my upper center chest for about 20 years. I went to various doctors, none of whom wanted to do anything since they thought a biopsy could disrupt the tumor. Well, the tumor got bigger and developed into a mass that I guess I always thought was manageable, until my diagnosis with dfsp a few weeks ago. The physician did three biopsies and it seems I have a few new lumps now, which I had feared. Surgery (wide excision) is scheduled for July along with reconstruction of the area immediately following. They did a CT scan and PET scan and it showed my body to be free from dfsp elsewhere; but I am now afraid it will spread elsewhere, especially lower in my breast, given my new lumps.

The surgeon had not heard of this disease; but the reconstructive surgeon had and he said he had a patient several years ago who had it. I have considered going to Hershey, where some dermatologists have done the Mohs surgery technique; but how they will reconstruct is unknown until they are doing the surgery, and I would like to have more control and say in what occurs upfront.

By the way, my mass, including the lump that cannot be seen, is 7cm large; huge.....

I am soon to be 56 and have three biological children. I am a full-time professional who is very active; and while I might be a little overweight, I am in relatively good shape and eat well--I have been a lacto-ovo vegetarian for about 30 years.


I wish all of you well; it is hard to think that this could spread for any of us and not be treated. I have read that hypertherapy, the use of high temperatures, can increase cellular health; so I have been going to a sauna for thirty minutes a couple of times a week and am planning on buying my own to assure I can detox.

I will keep you all in my thoughts and prayers.

JC

Digger33

unknown said:

Diagnosis
Hi, This is my first post to this board. I have had a lump on my upper center chest for about 20 years. I went to various doctors, none of whom wanted to do anything since they thought a biopsy could disrupt the tumor. Well, the tumor got bigger and developed into a mass that I guess I always thought was manageable, until my diagnosis with dfsp a few weeks ago. The physician did three biopsies and it seems I have a few new lumps now, which I had feared. Surgery (wide excision) is scheduled for July along with reconstruction of the area immediately following. They did a CT scan and PET scan and it showed my body to be free from dfsp elsewhere; but I am now afraid it will spread elsewhere, especially lower in my breast, given my new lumps.

The surgeon had not heard of this disease; but the reconstructive surgeon had and he said he had a patient several years ago who had it. I have considered going to Hershey, where some dermatologists have done the Mohs surgery technique; but how they will reconstruct is unknown until they are doing the surgery, and I would like to have more control and say in what occurs upfront.

By the way, my mass, including the lump that cannot be seen, is 7cm large; huge.....

I am soon to be 56 and have three biological children. I am a full-time professional who is very active; and while I might be a little overweight, I am in relatively good shape and eat well--I have been a lacto-ovo vegetarian for about 30 years.


I wish all of you well; it is hard to think that this could spread for any of us and not be treated. I have read that hypertherapy, the use of high temperatures, can increase cellular health; so I have been going to a sauna for thirty minutes a couple of times a week and am planning on buying my own to assure I can detox.

I will keep you all in my thoughts and prayers.

JC

JC,
I hope everything goes
JC,
I hope everything goes well for you. The good news is that DFSP rarely spreads and hopefully that will be the case for you. I check in once in a while on a few sites and facebook to see how folks are doing. The site below has some recent folks with similiar experiences. In addition, if you are on facebook, there are a couple of sites with a folks dealing with DFSP with a wide variety of exeperiences if you want to check it out.

http://www.rarercancers.org.uk/forum/view_topic?topic_id=291

Good luck with surgery.
-Steve-