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Dermatofibrosarcoma protuberans (DFSP)

DeaVan
Posts: 2
Joined: Jan 2007

Has anyone had or no someone that has/had this type of sarcoma? I know it is very rare, but I am having a very hard time understanding what to do. I was diagnosed in November and immediately scheduled for surgery to remove this from my arm. The surgeon only spent about 10 minutes with me prior - and just kept telling me how rare it was and it had to be removed. Since then, I was told they did not get it all and I would have to have more surgery and also additional biopsies(sp) for two other possible areas. I refused to have the surgery until speaking with at least an oncologist. The oncologist sent me back to my primary care physician to have the biopsis, wants to do the surgery with a plastic surgeon for required skin grafts, but also has stated he isn't positive the pathologist was correct in the original diagnosis and wants someone else to evaluate it because it is so rare. My primary care physician scheduled me for the biopsis, but changed her mind that day and now won't do the biopsis since I have an oncologist. I've now (since I can spell it) done the homework and am more confused than ever on why I'm being told surgery is the only option and no one seems to be in charge of this or willing to really work with me and explain what is going on. Sorry for the long winded message, but I am really scared, confused and looking to be proactive in making sure I am fully informed and going in the right direction.

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

You may want to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with questions regarding side effects from treatment. They can be reached at 1-800-227-2345.

Take care and be well,

Dana
CSN Dana

chevypro101
Posts: 1
Joined: Mar 2007

I'm a survivor! I was diagnosed 2 yrs ago with dfsp. Wide excision is what is recommended to treat this type of sarcoma. Other than surgery the only other option out there is radiation therapy. This cancer has an extremely high recurrence rate so that is why they need to be sure to get it all.

I had the wide excision of my dfsp which happened to be located on my left leg. A plastic surgeon is who performed my surgery and after I was healed from the surgery I follow up with an oncologist and my PCP. The down fall to the surgery (in my opinion) was the skin graft. It was painful to me. Where they removed the dfsp from was fine; it was where they took the skin graft from is what caused me the most pain.

The providers I went to were at Johns Hopkins Bayview Medical Center in Baltimore, MD. I highly recommend my plastic surgeon, Michele Shermak. Dr. Shermak discussed my case with my oncologist and other providers at Johns Hopkins. That is how they determined the best treatment plan for me. I was thoroughly explained all my options and what was recommended.

TK
Posts: 1
Joined: Jun 2009

NT

ElizabethRay
Posts: 1
Joined: Jul 2009

I saw that your dfsp was located on your left leg. Just over a month ago I had 2 back to back mohs surgeries to remove dfsp from my left lower leg and a skin graft a few days later to close the incision. The doctor who removed the sarcoma, a dermatologist, told me that it is highly unlikely for this type of cancer to reoccur and didn't recommend any follow ups. Since your dfsp was in a similar area as mine, I was wondering what your doctors told you about recurrence rates and follow up treatments as I am debating whether I should seek a second opinion. Any advice you can give me would be greatly appreciated.

lacretia
Posts: 4
Joined: May 2009

Please get the follow ups. This cancer has a high reoccurence rate. My son has been dealing with this for of cancer for over 5yrs now and is currently taking Gleevac. It is also recommended that you see a oncologist that specializes in Sarcoma cancers as this is a rare cancer most physicians are not that familiar with it.

ChristaLynn
Posts: 1
Joined: Dec 2010

Hi,

My 8 year old niece was diagnosed last week and has it on her right leg, they took x rays on friday and we are afraid it is in her lungs although they haven\t confirmed cause its the weekend, they did leave a message stating her surgery would be Tuesday.

Is this a cancer that can be fought off long term or should be even more worried ???

my 14 year old nephew has cancer for 10 years but not this kind so i am wondering if you know cause i am not finding much i understand. i live in Canada.

Any info, good or bad but honest would be helpful.

\thank \you

Csmith
Posts: 1
Joined: Jun 2007

Hello,

Which lab performed the original diagnosis? Was the immunohistological stain CD 34 performed?

Did you have an MRI with gadolinium before surgery.

Did you recieve a second diagnosis from another lab?

Chris

dbutler
Posts: 1
Joined: Aug 2007

I was diagnosed with DFSP on July 9 and had the surgery on July 16, 2007. My surgeon made made a wide incision around the tumor until he got clean margins. From what he says the tumor has a five percent chance of coming back. The survival rate is 90 percent. The only thing I can not find an answer for is, will this made me more susceptable to other types of cancer? If anyone knows more about DFSP please post. This a rare disease and there is not a lot of info on the net or my the american cancer society.

steetanya
Posts: 1
Joined: Jun 2008

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

lis232
Posts: 1
Joined: Jul 2008

I'm a recent survivor of DFSP. I was diagnosed just about a year ago to the day. I had a "nodule" on my abdomen and my PCP sent me to a plastic surgeon to have it removed. I had the option of having it biopsied first but given it was bleeding at that point I just wanted it removed. The tumor was not terribly big but I had about a 5 inch scar. the pathology report showed it was DFSP but I didn't have clear margins. I had another surgery - a wide excision which took even more tissue. I now have a 13 inch scar across my abdomen. A plastic surgeon performed this surgery with a pathologist in the OR. I also consulted with oncologists prior to surgery. My surgery was successful, I did need one more reconstructive surgery about 3 months after the wide excision. The recovery was extremely difficult as I could not sit up on my own after two major surgeries. I was hospitalized for a bit less than 3 days.

My long term care has been with a sarcoma clinic with regular physical exams and tests and I'm in remission almost a year now.

My best advice for anyone with DFSP with its high recurrence rate is to work with a plastic surgeon or a dermatologic surgeon to remove the tumor and do reconstructive work. But it's just as important if not more so to seek out a cancer/oncology facility that has a sarcoma clinic for your ongoing care during remission. Be proactive, don't wait.

angelagreen
Posts: 1
Joined: May 2009

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.

coolme
Posts: 1
Joined: Jul 2008

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.

amyr329
Posts: 4
Joined: Aug 2008

i was diagnosed last august and had the mohs procedure to excise it. i just found out yesterday its back and i just read about gleevec. i read about it on emedicine.com, and also have the same qeustions as you. i have a 7cm scar on my neck from the first excision and probably will have another scar the same size and do not want to have to keep going through this every year. if you get any good info on the drug therapy please let me know

Rancho
Posts: 9
Joined: Sep 2008

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

gamiro
Posts: 1
Joined: Apr 2009

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

quebec09
Posts: 4
Joined: Apr 2009

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

Digger33
Posts: 7
Joined: Sep 2008

Hi everyone
I'm in a similar boat. I had a lump removed from my upper middle back in July that was supposed to be a simple, benign Lipoma. It turned out to be DFSP. The lump measured 4CM in the report. The lab report said it was low-grade which I learned means the rate of cell division was relatively low. I have no idea how long it was there. I'm 38 and if my wife didn't see it, I may never have noticed it. It was flat, round, a slightly squishy and it had a little purplish color. It was somewhere between the size of a quarter and half dollar. It was painless.

I ultimately went to Fox Chase Cancer Center in Philadelphia PA to see Dr. Watson. He has treated 30 patients for DFSP. He told me that 28 times it stayed localized and was treated successfully. Two times it spread with one fatality.

He sent me for a CT scan and chest X-ray to make sure it hadn't spread. Luckily, they were normal. On Sept 2nd, he performed a wide excision on my back. He took as much tissue as he thought he could take and still stitch me closed without requiring reconstructive surgery. He cut an ellipse in my back. My location is fortunate as it allows for the removal of a large amount of tissue. He said the back is not a common occurrence for this. He said his goal is a 2CM margin on all sides. He will accept 1CM but nothing less. I got my lab result on 9/10. The left and right margins were clear but the top and bottom was <1CM. The bottom was only 1MM or less. He recommended follow-up surgery which I'm scheduled for 9/23. This time, it will require a plastic surgeon too who I will meet on the 17th. I trust Dr. Watson. He really seems to know his stuff and he is really familiar with DFSP so if you are in the Northeast US, he is someone to check out. The plastic surgeon is part of the Fox Chase team so they work it together and have done others together.

For me, the toughest part of this is the mental anguish of having a type of cancer with a high recurrence rate. He took a big hunk out of my back the first time and my family and I thought we were done and were quite surprised to hear the lab results weren’t clear. I know there are a lot more difficult types of cancers and I'm thankful this one is usually highly treatable but it still is a mental grind. I'm glad to hear that some of you have been cancer free for a long time and hopefully forever. Dr. Watson said we will do periodic CT scans in the future. I think he said every 6 months for the first year but I haven't been able to think about much past the surgery. The thing I find interesting is that he will place little markers in my back (pins) to outline the area removed so that if it does come back, the CT scan will show the pins and he will be able to tell where it came from relative to his cut.

There is another web site worth checking out where you can read about other people with DFSP. http://www.rarercancers.org.uk/

I wish you all luck and health with your treatment.

-Steve-

Rancho
Posts: 9
Joined: Sep 2008

Hi Steve,

I am curious about the two patients where the DFSP had spread. Do you know where the primary lesion was located? Into which organs did it migrate? How was the one treated that had spreading and is still alive? Sorry for all the questions. The medical center where I was treated, has seen very few cases of DFSP. Luckily, my surgeon is a personal friend with whom I work and I knew going into the procedure what a great dissectionist he is. My incision was quite large also (about 10 inches) and was in my groin. My wife also noticed how different the tumor it looked; it was like your description. I minimized the whole thing but she insisted I had someone look at it as I work at a med center. Since surgery, my walking has been a little labored and I will be off work until Oct. 6. I am a runner and plan to work hard to be able to run at least one half marathon before the new year.

I will fire a few prayers your way on the 23rd. I plan to check out the rare cancers website.

Craig

Digger33
Posts: 7
Joined: Sep 2008

Craig,
I hope you are back to full speed real soon. It sounds like we both need to thank our wives for pushing us as I too tried to dismiss it as nothing. I didn't think it was any big deal. I almost didn't have it removed as the doctor said it was mostly a cosmetic issue and I didn't want to be tied up in the summer.

As far as the two people who had it spread, it was tough for me to hear the story. The one fatality was a guy my age. It started in his shoulder and it was removed. When it returned, he said it traveled pretty far which is unusual for DFSP. I think he said it ended up in his lungs but I'm not 100% sure. He definitely said one of the favorite place for soft tissue sarcomas to travel is to the lungs which is why he sent me for the CT scan but I don't know if that was the case with the guy who died. I don't recall what he said about the other person. I'll ask him again on Tuesday when I see him.

Thanks for the prayers. Tuesday is a little more intimidating for me after my consultation with the plastic surgeon. Given the location on my back and the fact that this is my third surgery so there is not much excess skin remaining, he is going to make multiple crescent shaped incisions down my back to rotate skin around after Dr. Watson removes the additional tissue. He will leave in multiple drains too which doesn't sound fun. It sounds like I'll be laid up for a few weeks too. As soon as I feel up to it, I'll put up a post after my surgery to let you know what I find out.

If there is any other info I can provide, let me know. Feel free to ask me anything as I’m happy to help. Given the rarity of this thing, it’s helpful for me to chat with other people in similar situations. I'm rooting for you to hit your marathon goal. Hopefully this will be a distant memory for both of us by next year.
-Steve-

Rancho
Posts: 9
Joined: Sep 2008

Steve,

My incision will show definite scaring but because he was able to fold and pull the skin, plastic surgery was not needed. My surgeon had to do some creative overlapping but opted not to place a drain. The way he sutured it, it drained by itself anyway for the first week. At time the sutures were removed 15 days after surgery, I had a serotoma (fluid in the wound) which needed further draining (about 10cc).

I was also told that the lungs were a target for spreading. I'm looking ahead to my body scan and I feel pretty confident. I have been walking 1/2 mile a day with just a little pain. I ordered some new running shoes, Cubs cap and wind shirt but had to promise my wife I would not do any running till at least mid October. ( Although I have been on the west coast a long time, I am from Chicago and have always liked the Cubs).

I will pass on any new info I acquire. I am a clinical scientist, so if I can help you with information let me know. Try to enjoy the rest. I know plenty of work will be there when I get back but that's O.K. Although my colleagues have missed me, they have been very supportive and want me to take my time. I plan on it.

It is nice to have a person to talk to and for sure this will be behind us as we continue to be cancer survivors.

Craig

jwmassey
Posts: 4
Joined: Feb 2011

My son also has his lump on his back. I posted on the DFSP part of this board. He already had the tumor removed a couple of weeks ago and the pathology report came back as DFSP. He goes back for more extensive surgery next week. His tumor was the size of a golf ball so I am terrified they are going to take a huge amount from his back?? The tumor had been growing for 10 years. They had diagnosed it as a cyst and he even had it drained 5 years ago. I pray it hasn't spread. This site is so informative and helpful. I just wish people came back an updated their postings. My son may have a spot on his hip also that he hasn't even shown to the dr. yet. I am worried after reading postings that it may be too late to perform the MOHS since his tumor has already been removed and that it was so large. If anyone has any knowledge of this it would be helpful.

Thanks,

A worried Mom

Digger33
Posts: 7
Joined: Sep 2008

Craig,
My surgery went fine. Slight curve ball in that they kept me in the hospital overnight to run some antibiotic through my IV (along with some morphine). I have two drains that will be in until next Wed. The first time they drained about 50ccs each but by the time I left today, one was down to 10 and the other down to 5. I should get my lab results then or sooner but Dr. Watson is very confident he got it all this time as he took a very large chunk from my back. He told me not to worry. They want me to take an oral antibiotic this week too to minimize the risk of infection.

I did ask him about the two patients that had it spread. In both cases, it went to their lymph nodes first. In the person who died, it went to the lungs after his lymph nodes. It did not spread to the lungs in the other person who is still alive. That’s as far as we got with the conversation as there were a bunch of people around working on the surgery prep.

I’ll shoot you a post when I get my test results. I hope your scan goes well.
-Steve-

Rancho
Posts: 9
Joined: Sep 2008

Steve,

I'm glad to hear your surgery went well. Antibiotics sound like a good idea. The last thing you want is an infection. Thank you for the info about the two patients. Lymph node involvement is the scary thing about our cancer. I seems like for both of us, it will not be a problem.

The radiology department took about 300 raw images of my torso. Collating the images and having them read by a radiologist will take about four days. I see my surgeon again on October 1 and will get the results of the scan at that time. I'll let you know the results. I may be going back to work on October 6. We'll see.

One challenge I've noticed is stamina. My body is used to more exercise and it isn't getting enough. I'm working on it and know it will improve. My wife has been wise and so supportive. Usually I'm the problem solver and "go to" person.

Heal well and avoid any backslapping friends!

Craig

Leelee Jordan
Posts: 1
Joined: Sep 2008

Steve,

Thanks for letting me know about this forum. I looked several years ago when I was diagnosed and I'm pretty sure there wasn't one for DFSP at that time.

Just to let everyone know a little about me I'm a 48 year old female with a mixed up diagnosis for DFSP. When I finally found out on my own by reading my pathology report that was three and a half years old. I had been told that it was benign by a surgeon that couldn't read. I had MOH's surgery to my right hip one day (3 times to surgery) and then followed up with more surgery and reconstruction the very next day. Total seven inches across and down to the muscle. I am fortunate to have good dr's now but wasn't so lucky back in 2002.

I'm doing well now (2 1/2 years) after surgery.

ttyl

Digger33
Posts: 7
Joined: Sep 2008

Craig / Sandra,
I got good news in that my lab results were clean. No additional DFSP was found. The plastic surgeon removed my drains today too which is a big relief. Last thing is stitches out next week and I should be good. Thanks for the support.

I also found another website that had a bunch of DFSP posters. It is a little tricky to navigate since it has other form of sarcomas too but if you play with their search engine, you can find a bunch of DFSP folks. You need to get to their discussion board first. Link attached.

http://www.sarcomaalliance.org

Good luck everyone.
-Steve-

DaisysMom
Posts: 2
Joined: Sep 2008

Hi Steve, Are you going to have to have radiation now that the surgery is over with?
Congrats on getting the stitches out next week!
Best wishes,
DaisysMom

Rancho
Posts: 9
Joined: Sep 2008

Steve et al.,

Steve, I am pleased about your good news. Keep healing! My scan came back with a spot on my liver. Lungs, spleen, pericardial and pleural areas, viewable lymph nodes, pancreas, gall bladder and adrenals were all clear. I have an MRI for my liver this Saturday (Oct. 4) and will have results later next week. I feel healthy and plan to start running mid October. Hopefully, the spot is nothing but I am glad to be having more confirmatory testing. I will let you know about my results. I am going back to work on Oct. 6.

Take care,
Craig

Digger33
Posts: 7
Joined: Sep 2008

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-

Rancho
Posts: 9
Joined: Sep 2008

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
Posts: 1
Joined: Oct 2008

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%20monograph.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
Posts: 9
Joined: Sep 2008

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

Digger33
Posts: 7
Joined: Sep 2008

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.

WillemwithaV
Posts: 1
Joined: Nov 2008

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.

beabaker
Posts: 2
Joined: Jul 2009

Hi WillemwithaV
I hope you are still well & optimistic. I had neither MOHS nor wide excision; my surgeon didn't recognize my lump (on my back, at age 26) as DFSP so he left 0.5 mm margins, no testing. That was 14 years ago and so my fingers are crossed that a lump in my leg isn't a new site. Could you tell me who your doctor was? I live in Boston too and am hoping he is still around.

Thanks for your post and for your optimism. Stay healthy.

codyredd421's picture
codyredd421
Posts: 3
Joined: Mar 2009

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.

Rachelsb's picture
Rachelsb
Posts: 1
Joined: Oct 2008

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

she150
Posts: 3
Joined: May 2009

Hi Rachel,

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

Sheila

cdodgin
Posts: 2
Joined: Apr 2009

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
Posts: 3
Joined: May 2009

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
Posts: 1
Joined: May 2009

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 !!

Cweaver
Posts: 1
Joined: Oct 2008

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

Ale
Posts: 1
Joined: Jun 2009

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.

beabaker
Posts: 2
Joined: Jul 2009

Hi Codyredd
I hope you're doing well. This is my first post, and your message (of all these helpful messages) is the most similar to my experience.

When I was 26 I noticed a small lump on my back and was told by my doctor that it was a harmless cyst. Within weeks it had grown a lot, and clearly was anchoring itself in place, I could no longer wiggle it around. I was really alarmed because my mom died of breast cancer quite young. I had it excised a few weeks later by a surgeon who patronized me with a lot of talk about wanting to avoid scars. Even without knowing about DFSP, I knew I wanted a very conservative approach - I asked him to please take as much tissue as he needed to get it all; I didn't care about a scar. The tumor by then had grown through the fat and into my muscle. Sadly, I learned a few weeks ago that he left only a 0.5mm margin. The doctor who made the diagnosis of that tumor in 1995 mistook it for a dermatofibroma, and told me it was harmless. I sort of forgot about it for years.

Now I am 41 and have had no re-occurrence on my back. But I recently started to worry about a similar lump on my left leg that has been there for 6 years. Again, at first I was dismissed by my doctor and told that it's just a cyst. I have insisted that it be removed, and it will come off in Sept. I am really frustrated by the lack of "homework" by doctors; the dermatologist I saw this month for my leg lump had never heard of DFSP. Now I know I was very, very lucky to have no return on my back, despite a very small margin. I'm trying to get someone to look at my first pathology report. I am wishing I had done radiation back when that first lump, on my back, was removed. My fingers are crossed that the lump in my leg tests negative.

I don't feel I deserve to call myself a cancer survivor, because I only just found out that I had it back in '94. But I thank all on this forum who have posted your comments. My prayers are with you. If anyone has had lumps appear in another limb, can you describe if the second looked just like the first? Or if you found a good doctor near Boston, Massachusetts, please reply.
Thank you.

codyredd421's picture
codyredd421
Posts: 3
Joined: Mar 2009

Hi beabaker,

Oh I just wish I would have checked this discussion board sooner! I checked it for a few weeks after my post and then just kinda forgot about it. But I have to be honest, when I saw your response it just about brought me to tears! First off, I DO feel that you deserve to call yourself a cancer survivor...BECAUSE YOU ARE!! But I can totally relate to that feeling. Sometimes I feel like since I tried to make as little a fuss as possible about my situation and that I never had chemo, that I don't deserve to be in that category either. I hope and pray that the lump removed on your leg came back clean! Please let me know! I will be praying for you. Did it feel and/or look like your first lump? I can't tell you how much I have been hoping to find someone that could relate to my frustration with these docs. I mean they are great and all, but I am still having issues with mine...
I had my first round of scans done in late July. WHile they saw nothing but scar tissue on my back, they had a nurse call me and tell me they saw "something" in my lower bowels! I was referred to a G.I. specialist for some more tests and am still not really sure what the results are. They seem to have no knowledge of my cancer either and sort of acted like I was very low on their priority list.
I know that there are so many more people who are in FAR worse shape than me and I pray for them every day, but this **** (pardon my French) is just so frustrating sometimes. The one year anniversary of my diagnosis is coming up and I am finding myself being alot more emotional about it than I thought I would be.
beabaker, I hope this message finds you in good health AND good spirits! Thank you so much for responding to my post and for addressing me directly. It means alot.
God bless you all

cdodgin
Posts: 2
Joined: Apr 2009

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.

sen0760
Posts: 9
Joined: Jun 2009

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 .

JC (not verified)

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
Posts: 7
Joined: Sep 2008

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-

JC (not verified)

Hi, Thanks very much for your response. I am really trying to get into a clinic to be assessed for possible MOHS surgery; but I can't get in until September!! I don't want to wait that long.

JC

bstar
Posts: 22
Joined: Nov 2009

My first post on this site which I joined today.I am a survivor of dfsp to my left cheek.
I would like to say after much research of the different procedures Mohs is by far the best for dfsp simply because it is done at the Microscopic level and less apt to miss a tiny area.
I lost my parotid Gland,my facial nerve,muscles and a lot of facial skin tissue to my left cheek the size of a hardball. A large flap of donar skin tissue was taken from my upper left
leg to do the reconstructive surgery.There is no covering up this skin graft its large and
was light in colour compared to my tanned face.Since the healing process has now finished
my reconstructive surgeon gave me the ok to use self tanner to darken the area but it is still very obvious.The pathology report was well above 95% succesful approaching 100%

JC keep pushing to get the Mohs Micrographic surgery,the after surgery records speak for themselves,very high success rate after many years. There is much more to my story but these
comments about Mohs are what I want to strongly recommend.I'm a strong healthy 65 which
most can't beleive I'm retired. My dfsp was a classic case,a small hard spot on my cheek for
probably 15 to 20 years,my family physician mistook for scar tissue and dismissed it. In
March 2009 an agressive Tumor grew over 5 weeks to a golf ball size which was surgicly removed,thats when the biopsy reveiled dfsp. A final comment,the physical scars we receive are one thing but who helps us with the emotional scars we carry inside.I'm glad I have family
to support and encourage me,I'm just trying to overcome how selfconscious I am of my "New Normal Look" I see the little children whisper, "Mommy look at that mans face", I love kids and have Three grandchildren,this part of rising above our infermity is not easy.

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