Dermatofibrosarcoma protuberans (DFSP)

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  • Buffkins
    Buffkins Member Posts: 4
    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
  • Buffkins
    Buffkins Member Posts: 4
    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

    Update on possible recurrence in breast
    Hello, I'm happy to report that my pathology report from last week's biopsy came back negative for any DFSP cells - I am so happy.

    Keeping everyone facing this disease in my thoughts and prayers.....Buffkins
  • Franny1908
    Franny1908 Member Posts: 1
    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.
  • lynda44
    lynda44 Member Posts: 1

    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.

    hi i had what i thought was
    hi i had what i thought was a cyst in the middle of my chest between my breasts for years after it changed colour and looked like a third nipple i decided to have it removed {purely for cosmetic reasons} two weeks later i recieved the phone call informing me i had DFSP which was a huge shock,i had wide excision of the area leaving a 5" scar, on going back for my results i was told that ideally there needs to be a 3mm clearance and i only had 1mm, i am now booked in for 2nd op on 1st of dec i will also be having a woolf graft, would be interested if anyone else has had this type of graft.
  • shamarie
    shamarie Member Posts: 1
    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.
  • naye
    naye Member Posts: 2
    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
  • naye
    naye Member Posts: 2
    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
  • Buffkins
    Buffkins Member Posts: 4
    lynda44 said:

    hi i had what i thought was
    hi i had what i thought was a cyst in the middle of my chest between my breasts for years after it changed colour and looked like a third nipple i decided to have it removed {purely for cosmetic reasons} two weeks later i recieved the phone call informing me i had DFSP which was a huge shock,i had wide excision of the area leaving a 5" scar, on going back for my results i was told that ideally there needs to be a 3mm clearance and i only had 1mm, i am now booked in for 2nd op on 1st of dec i will also be having a woolf graft, would be interested if anyone else has had this type of graft.

    Dr. Recommends Lifetime Checkups
    Hello DFSP friends,

    After my recent recurrence scare (biopsy was negative), my doctor has hooked me up with a sarcoma specialist at Duke University Medical Center who is recommending annual lifetime checkups. My first appointment is tomorrow (Weds). The specialist called me on the phone to set up the appointment, and emphasized how sneaky DFSP can be, and also that patients need to be followed for the purpose of tracking and research into survival rates based on types of treatments, locations of tumors, etc to help others in the future. I'm all for that ! Happy Holidays to everyone, prayers headed your way for a healthy future! Buffkins
  • Buffkins
    Buffkins Member Posts: 4
    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
  • zing77s
    zing77s Member Posts: 6
    Just diagnosed
    I was just diagnosed last week with DFSP. I had several cysts (or that's what I thought) in my upper chest near my left shoulder that I discovered about 5 years ago. 2 different doctors over the years have said they were cysts and not to be concerned unless they grew. Well, over the summer, one of them grew to about the size of a golf ball. My primary doctor diagnosed it as an infected cyst and sent me to a general surgeon to have it removed. I had to have surgery to have it removed and while in recovery, he told me that it was NOT a cyst and that fully pathology was ordered. During my follow up on the first surgery, I found out I have DFSP. Since this is such a rare form of cancer, he has only seen this a few times. He didn't mention Mohs as an option (which I plan to ask him about)--but for now is planning a wide removal (about the size of a mango) and testing of margins. I meet with Plastics next week to find out that part of the process. My chest scan came back clear, so he's confident it hasn't metastasized. He mentioned that after treatment, I will have to have lifetime checkups and will be referring me to an dermatologist. Through it all, I'm very thankful for family and friends who have come along side me--and trusting in God through all of this. With such a rare cancer, it's been hard to find good reliable information--so thanks to all of you for sharing! I hope my experiences can help others too.
  • kendalldaniels
    kendalldaniels Member Posts: 1

    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.
  • ryan and family
    ryan and family Member Posts: 15
    teef said:

    Don't freak out.
    It seems scary but there are lots of good outcomes. I had this 6 years ago. Like lots of other people, I was told by my family doctor that the little lump on my upper leg was nothing to worry about. After 7 years it grew to about 1.5 cm slightly raised reddish bump. I thought it was kind of unsightly so went to a dermatologist to have it removed. When the lab results came back they found it was dfsp. I read about Moh's but my plastic surgeon said that was only worth having if the lump was on your face or hand where you wouldn't want a lot cut out. He said it was safer to excise with wide 3cm margins. He closed it with two flaps which he said makes a neater job than a skin graft. It was day surgery.

    To be honest, it didn't look like a neat job right after it was done but it all healed up and flattened out. I now have a giant s-shaped scar that goes all the way from my knee to the top of my leg. After a year it was whitish and flat and not that bad looking, and there has never been a regrowth of the cancer. Most of the time I pretty much forget I ever had it. I keep an eye on the general area, but really the chances of regrowth and metastasis are tiny.

    I live in Halifax (Canada) which is a small city, but everything was dealt with professionally and promptly. I wondered about flying somewhere bigger to have specialists, but I think that those thoughts were fueled by the big panic I felt when first diagnosed.

    Your chances are good of making a straightforward recovery and just putting it behind you.

    new arriver with toddler having dspf and decisions to make soon
    Thank you Teef. I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions now recognizing that this is rare, and required a biopsy to confirm at a larger hospital to confirm).

    I am glad to hear your experience as it is relates; a 1cm raised reddish bump. We have some big decisions to make over the next few days regarding the type of surgery and reconstruction (grafting is only avaible given location on head area).

    We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

    "what are the best questions to ask these professionals"

    We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer. Any perspectives on this would be greatly appreciated as we meet very soon (this has all happened within a very short time and with some urgency given the nature of growth).

    Many thanks, very touched and a privilege to be here. Ryan and Family.
  • ryan and family
    ryan and family Member Posts: 15
    zing77s said:

    Just diagnosed
    I was just diagnosed last week with DFSP. I had several cysts (or that's what I thought) in my upper chest near my left shoulder that I discovered about 5 years ago. 2 different doctors over the years have said they were cysts and not to be concerned unless they grew. Well, over the summer, one of them grew to about the size of a golf ball. My primary doctor diagnosed it as an infected cyst and sent me to a general surgeon to have it removed. I had to have surgery to have it removed and while in recovery, he told me that it was NOT a cyst and that fully pathology was ordered. During my follow up on the first surgery, I found out I have DFSP. Since this is such a rare form of cancer, he has only seen this a few times. He didn't mention Mohs as an option (which I plan to ask him about)--but for now is planning a wide removal (about the size of a mango) and testing of margins. I meet with Plastics next week to find out that part of the process. My chest scan came back clear, so he's confident it hasn't metastasized. He mentioned that after treatment, I will have to have lifetime checkups and will be referring me to an dermatologist. Through it all, I'm very thankful for family and friends who have come along side me--and trusting in God through all of this. With such a rare cancer, it's been hard to find good reliable information--so thanks to all of you for sharing! I hope my experiences can help others too.

    Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

    I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

    We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

    "what are the best questions to ask these professionals"

    We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.
  • ryan and family
    ryan and family Member Posts: 15
    zing77s said:

    Just diagnosed
    I was just diagnosed last week with DFSP. I had several cysts (or that's what I thought) in my upper chest near my left shoulder that I discovered about 5 years ago. 2 different doctors over the years have said they were cysts and not to be concerned unless they grew. Well, over the summer, one of them grew to about the size of a golf ball. My primary doctor diagnosed it as an infected cyst and sent me to a general surgeon to have it removed. I had to have surgery to have it removed and while in recovery, he told me that it was NOT a cyst and that fully pathology was ordered. During my follow up on the first surgery, I found out I have DFSP. Since this is such a rare form of cancer, he has only seen this a few times. He didn't mention Mohs as an option (which I plan to ask him about)--but for now is planning a wide removal (about the size of a mango) and testing of margins. I meet with Plastics next week to find out that part of the process. My chest scan came back clear, so he's confident it hasn't metastasized. He mentioned that after treatment, I will have to have lifetime checkups and will be referring me to an dermatologist. Through it all, I'm very thankful for family and friends who have come along side me--and trusting in God through all of this. With such a rare cancer, it's been hard to find good reliable information--so thanks to all of you for sharing! I hope my experiences can help others too.

    Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

    I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

    We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

    "what are the best questions to ask these professionals"

    We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.
  • ryan and family
    ryan and family Member Posts: 15
    zing77s said:

    Just diagnosed
    I was just diagnosed last week with DFSP. I had several cysts (or that's what I thought) in my upper chest near my left shoulder that I discovered about 5 years ago. 2 different doctors over the years have said they were cysts and not to be concerned unless they grew. Well, over the summer, one of them grew to about the size of a golf ball. My primary doctor diagnosed it as an infected cyst and sent me to a general surgeon to have it removed. I had to have surgery to have it removed and while in recovery, he told me that it was NOT a cyst and that fully pathology was ordered. During my follow up on the first surgery, I found out I have DFSP. Since this is such a rare form of cancer, he has only seen this a few times. He didn't mention Mohs as an option (which I plan to ask him about)--but for now is planning a wide removal (about the size of a mango) and testing of margins. I meet with Plastics next week to find out that part of the process. My chest scan came back clear, so he's confident it hasn't metastasized. He mentioned that after treatment, I will have to have lifetime checkups and will be referring me to an dermatologist. Through it all, I'm very thankful for family and friends who have come along side me--and trusting in God through all of this. With such a rare cancer, it's been hard to find good reliable information--so thanks to all of you for sharing! I hope my experiences can help others too.

    Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

    I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

    We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

    "what are the best questions to ask these professionals"

    We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.
  • zing77s
    zing77s Member Posts: 6

    Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

    I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

    We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

    "what are the best questions to ask these professionals"

    We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.

    ryan and fam
    My prayers for you and you little one for the journey that lies ahead.

    I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.

    to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.

    i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.

    so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."

    When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...

    feel free to post any other questions and I'll be happy to offer my thoughts...

    God Bless!
  • ryan and family
    ryan and family Member Posts: 15
    zing77s said:

    ryan and fam
    My prayers for you and you little one for the journey that lies ahead.

    I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.

    to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.

    i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.

    so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."

    When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...

    feel free to post any other questions and I'll be happy to offer my thoughts...

    God Bless!

    Thank you
    Zing77s, thank you very much for sharing.
  • Kudichan
    Kudichan Member Posts: 1
    zing77s said:

    ryan and fam
    My prayers for you and you little one for the journey that lies ahead.

    I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.

    to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.

    i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.

    so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."

    When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...

    feel free to post any other questions and I'll be happy to offer my thoughts...

    God Bless!

    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
  • zing77s
    zing77s Member Posts: 6
    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!
  • Fedeyks
    Fedeyks Member Posts: 6
    DFSP Info Please
    I was diagnosed with DFSP on January 13, 2012 .... Since then I have tried to find out information on this rare skin cancer. It is rare. I live in Edmonton, Alberta, Canada. I do have a Dermatologist that does MOHS surgery but there is trouble finding a surgeon to do the 'repair/skin graft' surgery. My tumor is 2.5cm x 2cm in size and has been on my mid-back close to the spin for 25 years. I have been ignored by doctors. This is my second cancer diagnosis (breast cancer in 2006) so I don't want to wait to deal with this. I have had a hard enough time with the breast cancer and am finished my five years of Tamoxifen on April 16 of this year, so would really like this cancer done sooner than later as well.

    I have found the Mayo Clinic in Rochester, Minnesota to be specialized in this cancer and have contacted them, does anyone have any experience with them?

    I have tried alternative treatment in the meantime as I have nothing to lose .... Castor Oil, Cannabis Oil and TCM Acunpuncture, which I can tell you has started to change the color and size of the tumor/area.

    I understand it can reoccur and I have no control over that. It seems like the recovery is the hardest part.

    I would love to hear from anyone (especially Canada).