Dermatofibrosarcoma protuberans (DFSP)

Krzysztof said:

DFSP in 15 year-old girl
Hi all. I am a father of 15 year old girl who has this stranger on the right shoulder. Best oncologist in Poland it is cut with a small margin. He thought it was a mild variant. But it turned out that this DFSP. Biopsy was not done in the oncology center. Oncologist told to each take a section of the hospital oncology in the Polish capital for re-examination. Even though you will need to send back to belgium for molecular studies. Please tell me if anyone of you is close to the age of 15 years and has a DFSP .. whether this can be to live long? how long? you know what there in the world with this disease. Tell me honestly. Those who have it. On Monday I will have a new study re - examination.

my English is just google sorry for mistakes

Krzysztof

Possible Recurrence of DFSP in Breast
I am a 52 yr old female who had DFSP in the left breast 12 years ago. There was never any lesion visible on my skin - just a pea-sized lump in my breast that I had for years. Doctor after doctor told me it was nothing to worry about. Finally, after having 2 friends stricken with serious forms of breast cancer, I insisted on having the lump removed, and it turned out to be DFSP. After the initial surgery, I had two more surgeries to get clean margins, no chemo or radiation, and all follow-up exams including mammography and ultrasounds and clinical exams have been fine. In August of 2011 my dermatologist felt a thickening along the scar line from my previous DFSP surgery. An ultrasound showed a 5mm lesion in the same area as the previous surgery, did not show up on subsequent mammogram. I had an excisional needle-guided breast biopsy yesterday and I am so scared that DFSP is back again. The breast surgeon removed a piece of tissue the size of his thumb, obviously larger than 5mm. He is quite concerned, I am sick with worry. I should get the pathology results on Thursday. I am so glad I found this discussion board. Thanks for listening, Buffkins

Krzysztof said:

DFSP in 15 year-old girl
Hi all. I am a father of 15 year old girl who has this stranger on the right shoulder. Best oncologist in Poland it is cut with a small margin. He thought it was a mild variant. But it turned out that this DFSP. Biopsy was not done in the oncology center. Oncologist told to each take a section of the hospital oncology in the Polish capital for re-examination. Even though you will need to send back to belgium for molecular studies. Please tell me if anyone of you is close to the age of 15 years and has a DFSP .. whether this can be to live long? how long? you know what there in the world with this disease. Tell me honestly. Those who have it. On Monday I will have a new study re - examination.

my English is just google sorry for mistakes

Krzysztof

DFSP in young girl
Hi,
I'm a mother of a 14 year old who had the same. It was a little lump for years until she said she wanted it gone. She needed a large removal of tissue, which is very painful as a parent to see. She also had a small margin near one part, but it was clear. She is fine though, and will have reconstructive surgery when she is 18 or 19 to make it look better. As long as they clear the DFSP. She's positive, I'm positive. It is true they come back, but lots of people don't have them re-occur also.
Good luck and stay positive.

Dermatofibrosarcoma protuberans (DFSP)
Hi, my daughter was diagnosed with this cancer, We first noticed it on her back when she was about 7 years old, the Dr. said it was probably a cyst formed from a mosquito byte, no big deal. This "cyst" kept getting bigger and bigger, over the years, it would take on diffrent shades of purple,and reddish, it was getting tall and widening, it didn't really bother her too much and since it was on her back we didn't see it much xcept for when she would go swimming etc. I took her to a dermatologist, she thought it was a hematoma, and said all she had to do was draing it, she proceeded to stick a needle in the middle of it and my daughter cried out in pain, it started bleeding quite a bit, the dermatologist had an odd look on her face and said she would'nt mess with it anymore, it will probably go away after a few years. My daughter was about 12 years then. So we went on our merry way and every time I took my daughter in for a cold or allergies, I would always ask the dr. to look at it, they all said no big deal, it's just kinda ugly, but it'l go away. It kept growing and eventually started hurting her, I took her to a diffrent dermatologist. He did a biopsy, and he is the one that told us what it was, he said it was very rare, especially in people my daughter's age, he took pics. to submit into some medical journal, and sent us to a Moh's surgeon. This was probably the scariest time of our lives, he didn't know how far he would have to dig, great Dr. he allowed my husband and I to stay in there with my daughter the whole time he did the surgery, we were there all day from 6 a.m. till 9pm she was under local anisthetic. he had to take small slivers from her back, let them freeze and look under a microscope. by the time he was done he had reached the muscle in her back, the trapezoids. She had to undergo alot of plastic surgury and healing,this is going on year number 3 with no reocurrences, but recently she has been complaining of her back hurting when she lays down, and at times paralyzation, I don't know who to take her to for that, nobody said anything about an oncologist or anything like that.But like I said so far its still gone. The Moh's surgury has a really good success rate. I'm glad we did it, and I think she is too.

Buffkins said:

Possible Recurrence of DFSP in Breast
I am a 52 yr old female who had DFSP in the left breast 12 years ago. There was never any lesion visible on my skin - just a pea-sized lump in my breast that I had for years. Doctor after doctor told me it was nothing to worry about. Finally, after having 2 friends stricken with serious forms of breast cancer, I insisted on having the lump removed, and it turned out to be DFSP. After the initial surgery, I had two more surgeries to get clean margins, no chemo or radiation, and all follow-up exams including mammography and ultrasounds and clinical exams have been fine. In August of 2011 my dermatologist felt a thickening along the scar line from my previous DFSP surgery. An ultrasound showed a 5mm lesion in the same area as the previous surgery, did not show up on subsequent mammogram. I had an excisional needle-guided breast biopsy yesterday and I am so scared that DFSP is back again. The breast surgeon removed a piece of tissue the size of his thumb, obviously larger than 5mm. He is quite concerned, I am sick with worry. I should get the pathology results on Thursday. I am so glad I found this discussion board. Thanks for listening, Buffkins

DFSP In Breast
HI I had to write to you. We are about the same age and I also had DFSP in my breast area about 14 years ago. I haven't been on these sites in along time and I am so surprised at the amount of cases there are now. I had three surgeries and am left with an 8 inch scar on my chest. I now have a small pea size colorless bump on my arm and I was wondering if I should start to worry again. They say it is unusual to come back after 10 years. I hope you get good news. Once you have any time of cancer it is hard not to go to that place again. Try and be positive and hope for the best. Best wishes! R

shamarie said:

Dermatofibrosarcoma protuberans (DFSP)
Hi, my daughter was diagnosed with this cancer, We first noticed it on her back when she was about 7 years old, the Dr. said it was probably a cyst formed from a mosquito byte, no big deal. This "cyst" kept getting bigger and bigger, over the years, it would take on diffrent shades of purple,and reddish, it was getting tall and widening, it didn't really bother her too much and since it was on her back we didn't see it much xcept for when she would go swimming etc. I took her to a dermatologist, she thought it was a hematoma, and said all she had to do was draing it, she proceeded to stick a needle in the middle of it and my daughter cried out in pain, it started bleeding quite a bit, the dermatologist had an odd look on her face and said she would'nt mess with it anymore, it will probably go away after a few years. My daughter was about 12 years then. So we went on our merry way and every time I took my daughter in for a cold or allergies, I would always ask the dr. to look at it, they all said no big deal, it's just kinda ugly, but it'l go away. It kept growing and eventually started hurting her, I took her to a diffrent dermatologist. He did a biopsy, and he is the one that told us what it was, he said it was very rare, especially in people my daughter's age, he took pics. to submit into some medical journal, and sent us to a Moh's surgeon. This was probably the scariest time of our lives, he didn't know how far he would have to dig, great Dr. he allowed my husband and I to stay in there with my daughter the whole time he did the surgery, we were there all day from 6 a.m. till 9pm she was under local anisthetic. he had to take small slivers from her back, let them freeze and look under a microscope. by the time he was done he had reached the muscle in her back, the trapezoids. She had to undergo alot of plastic surgury and healing,this is going on year number 3 with no reocurrences, but recently she has been complaining of her back hurting when she lays down, and at times paralyzation, I don't know who to take her to for that, nobody said anything about an oncologist or anything like that.But like I said so far its still gone. The Moh's surgury has a really good success rate. I'm glad we did it, and I think she is too.

Dr. Recommends Annual Lifetime Checkups
See my comment above about lifetime follow-up checkups. If you live close to a major medical center, you need to find an oncologist who specializes in sarcomas. My original diagnosis was 10+ years ago - I am healthy but need to be on guard - I will remember your daughter in my prayers. Buffkins

nannylewis said:

New to DFSP
My diagnosis of DFSP was accidental. I had a hard 3cm nodule in the middle of my forehead, and a smaller one closer to my hairline. My dermatologist said it could be a cyst or lipoma, but because of the size and location, she wanted me to see a plastic surgeon. He took one look, said "osteoma", a benign bone tumor, and scheduled an endoscopic removal on 4/21. His plan was to make an incision in the hairline and go in under the skin to remove the "osteoma". However, when he went in, there was no bony growth, but what he thought was a thickening of the periosteum. Thank goodness he took a biopsy.
He gave me the results of the biopsy on my follow up appointment on 4/30. Like many the stories I have read from many people on this site, I was thunderstruck. The plastic surgeon said I was the 3rd case of his career, so his knowledge and experience is not vast. I went back yesterday, 5/14 to receive the results of the immunostaining (CD34). I have been doing my homework, and asked about the Moh's procedure. He feels that he cannot do it because since he went in and "released the periosteum, and disturbed the tissue plane", so he has no idea where the margins would be. He says he could end up taking a huge chunk out of my forehead.
He mentioned radiation therapy, but says that could be difficult on the forehead. He is willing to refer me to a radiation oncologist or any other specialist. I live about 100 miles from Philadelphia, and he says UPenn has people who have seen more than a handful of cases.
His final feeling, though, was that we should just adopt a "wait and see" approach. I said yes to this at the appointment yesterday, but 24 hours later, I am more confused than ever about what to do. Like I have read on several posts, people are reassured that DFSP is slow growing and rarely metastasizes, but why should anyone with this diagnosis gamble on that?
bstar and JC seem to have lots of advice, and I sure could use some!

I'm going to wait and see..
I had a smallish pimple like deal on my upper, middle back (very near my spine) for about 10 years that grew to almost the size of a golf ball back during early June. Before June is was a non-issue, and it was only painful if I touched it a certain way. I think I originally injured myself with a barbell or dumbbell in that area but I don't remember. Assuming it was a lipoma or sebaceous cyst I waiting until Dec. 1st to have it removed by a plastic surgeon and what should have been a 15 minute procedure lasted nearly an hour. The tumor itself was an ugly looking thing loosely resembling a squid, about 8 cm. The pathology came back saying it was DFSP, even though it was only stained for CD34 and not CD10 or factor 13a (to absolutely distinguish it from variants of dermatofriboma, a benign condition). The plastic surgeon I went to mentioned the wide excision and not Mohs. The oncologist he sent me to also mentioned the wide excision and scoffed at the idea of Mohs saying that it involves a lot of scraping (um yeah!; that's the procedure). She also mentioned doing the surgery and some radiation.

What's odd is just like many of you have mentioned both drs. say they've seen it about 3 times in 30 years (is this the standard answer?) and neither were high on the Mohs procedure (one didn't even mention it), even though Mohs has the lowest recurrence rate (1% - 5% vs. 30% - 50%). Needless to say when/if I actually have surgery I won't be using either of them because it seems as if they were more concerned with what procedures they can do instead of what is the best procedure for me was. I'm already done with the plastic surgeon and once I have the MRI and take a look at it I'm done with this oncologist.

Further, since it rarely metastasizes and is only an issue to me if it grows back and hurts, I'm not sure I want to subject myself to another surgery and the complications that could be associated with it, as it is near my spine. I'll also take a wait and see approach but I will visit the Mohs surgeon in the meantime. If the wound can be stitched up I might go ahead and have the Mohs surgery. I'm not concerned about the dying aspect of this form of cancer; I'm more concerned with surgical mishaps and loss of mobility or functionality as a result. It may take years before it grows back to the point it was in early June and within that time a better form of treatment have have been developed or even a cure for cancer (http://news.health.ufl.edu/2010/9267/colleges/college-of-medicine/uf-researchers-find-cancer-fighting-properties-in-papaya-tea/). We'll see what happens.

Kudichan said:

I was diagnosed with DFSP
I am also interested in any one who has DFSP with myxofibrosarcomatous transformation.I was diagnosed with this 6/2010 which started growing in may and had the tumor removed. It was on the inside crease of my right leg. The Dr. told me a month later he did not get it all and we would have to do surgery again when it came back. So I was wait and see mode next. He did tell me he would have to take my leg off next time.. which had me concerned. I thought it was back in May 2011 had an MRI and he said just scar tissue. So I thought he did not know what he was doing so I found another Dr that is handling it in a group approach.I was supposed to have surgery Nov 2011 but he decided he wanted me to try Gleevec to shrink it. My first one grew to 8 x 10 mm and the second one from june to November was 4x6 mm. So I am still on that and it has shrunk the tumor completely on top of my skin, but the one under neath is still there. I will be having surgery the end of Feb. My question for you is on skin grafts. I know they are going to do the MOHS surgery and skin grafts to rebuild my private area. I dont know what to expect, should I be concerned? The last Dr. sewed my labia to my leg that I could not walk well so I had reconstructive surgery to slice my leg open so I could walk.It helped and my new Dr. knows my concerns.I am a fairly active 55 year old..I am just afraid I will never have my old mobility back. I know you can never go back.. kudichan

Skin Graft
Hi Kudichan. Sorry to hear of your troubles with your previous surgery. It sounds like you made a good decision in changing doctors. Is your new doctor experienced in plastic surgery? In my case, I had 2 doctors--one who removed the cancer, and a plastic surgeon who did my skin graft. I would ask a lot of questions about what to expect with the graft and if your new doctor doesn't have a lot of experience with plastic surgery, consider talking to a different doctor too. I had my surgery in December on my left shoulder area and the graft in is an area that normally has a lot of movement, so I can relate to the concerns (although not nearly the same as the privates area, I know). My plastics doctor says I am healing as expected, but I have very limited mobility in that area right now (almost 6 weeks later). The truth is that grafts take a lot of time to heal and you will need to be patient with the process. Also, doctors can't really say how well your mobility will be until you completely heal--and even then, physical therapy may be needed to help. My plastic surgeon tells me in my case to expect 80% use of my arm at best. 2 other doctors are telling me that I should have no limitations at all... so I've decided that none of them know for sure and I will have to be patient and wait to see how it all heals up. Hopefully you have a good support system in place and that will encourage you and help you on this journey! I'll be praying for you--that you have clarity before the surgery and that your procedure goes well! God Bless!