Dermatofibrosarcoma protuberans (DFSP)

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Comments

  • natmcg
    natmcg Member Posts: 134 Member
    Lone111 said:

    Thanks Jo - I think tht

    Thanks Jo - I think tht leaves me in group of no reorcurrence if it follow the statistics. Event Free Survival :-) how nice

    I hope my surgeon calls soon to say the margin are at least 1.5 :-)

    thanks, 

    lone

    Jessie where are you?
    Hey has anyone had any contact with Jessie she seems to have fallen off the radar.

    Hope everything is going ok

    Nat.
  • Ontario48
    Ontario48 Member Posts: 66 Member
    natmcg said:

    Jessie where are you?
    Hey has anyone had any contact with Jessie she seems to have fallen off the radar.

    Hope everything is going ok

    Nat.

    J E S S I E

    Hey Nat, left a note on the other stream.  She may not be seeing some of the posts...I had that problem too until figure out to refresh my favorites.

    Jessie lives in Toronto and she too made contact with Dr. Gladdy.  She is going to look at her case, wahooo.  So happy for Jessie.  I'm sure Dr. G's like, where are all these DFSP's coming from ")

    Chow for now...Jo

  • Jessie5
    Jessie5 Member Posts: 4 Member
    Ontario48 said:

    J E S S I E

    Hey Nat, left a note on the other stream.  She may not be seeing some of the posts...I had that problem too until figure out to refresh my favorites.

    Jessie lives in Toronto and she too made contact with Dr. Gladdy.  She is going to look at her case, wahooo.  So happy for Jessie.  I'm sure Dr. G's like, where are all these DFSP's coming from ")

    Chow for now...Jo

    I am sorry

    Hi Guys, i am new on this website not sure how to use it yet. I have been in contact with jo. She Helped me alot. I read all the comments and they were very helpful. I am not going to make  decision until i speak to sarcoma specialist. So, far i have all different answers from different doctors as my plastic surgeon spoke to them. Some say my margins are good and some says in order to be on safe side it better to go above 2cm. I am waiting for my general surgeon to come back and once i get my all reports from her , i will be able to see sarcoma specialist. Again , thanks everyone for help and i am sorry again for not checking my posts. Have a nice day :)

    Jessie

  • natmcg
    natmcg Member Posts: 134 Member
    Jessie5 said:

    I am sorry

    Hi Guys, i am new on this website not sure how to use it yet. I have been in contact with jo. She Helped me alot. I read all the comments and they were very helpful. I am not going to make  decision until i speak to sarcoma specialist. So, far i have all different answers from different doctors as my plastic surgeon spoke to them. Some say my margins are good and some says in order to be on safe side it better to go above 2cm. I am waiting for my general surgeon to come back and once i get my all reports from her , i will be able to see sarcoma specialist. Again , thanks everyone for help and i am sorry again for not checking my posts. Have a nice day :)

    Jessie

    Nice to hear from you.
    Hi Jessie,
    Don't apologize its me who gets a .bit nosey and pushy.
    It's just Im a bit of a mother hen, and I get concerned thinking that someone is out there dealing with this rare cancer on their own and maybe feeling a bit lonely or scared. So glad Jo has been able to help you with the names and places you can now look into. She really does an amazing job researching DFSP. Sounds like your on your way to getting the best results possible. It's not easy to make sense of it all specialy when the.Dr.s have different ideas.These things take.time to organize and some times all we can do is " hurry up and wait ".lol.

    Good luck
    Nat.
  • Jessie5
    Jessie5 Member Posts: 4 Member
    natmcg said:

    Nice to hear from you.
    Hi Jessie,
    Don't apologize its me who gets a .bit nosey and pushy.
    It's just Im a bit of a mother hen, and I get concerned thinking that someone is out there dealing with this rare cancer on their own and maybe feeling a bit lonely or scared. So glad Jo has been able to help you with the names and places you can now look into. She really does an amazing job researching DFSP. Sounds like your on your way to getting the best results possible. It's not easy to make sense of it all specialy when the.Dr.s have different ideas.These things take.time to organize and some times all we can do is " hurry up and wait ".lol.

    Good luck
    Nat.

    I don't mind

    Hi Nat,

    I don't mind if you are nosey and pushy. I know everyone is here to help each other. I found out jo will be seeing dr gladdy soon and we are planning to get appointments on same day so we can meet up. I am still waiting for the paper work. Will update once get an appointment.

    Thanks for help!

    Jessie  

  • Ontario48
    Ontario48 Member Posts: 66 Member
    natmcg said:

    Nice to hear from you.
    Hi Jessie,
    Don't apologize its me who gets a .bit nosey and pushy.
    It's just Im a bit of a mother hen, and I get concerned thinking that someone is out there dealing with this rare cancer on their own and maybe feeling a bit lonely or scared. So glad Jo has been able to help you with the names and places you can now look into. She really does an amazing job researching DFSP. Sounds like your on your way to getting the best results possible. It's not easy to make sense of it all specialy when the.Dr.s have different ideas.These things take.time to organize and some times all we can do is " hurry up and wait ".lol.

    Good luck
    Nat.

    Message for All...Scammer on site

    Hello Everyone,

    I recieved an email from "ymrssandra70".  I reads like one of those scams for you to open a bank account and you get a millions of dollars, some lady is stating she has 3 months to live and wants to give me all her fortunes.  Sounds like a money laundering propostion.  So beware...I have notified the site with this info.  Pretty sad preying of people with cancer.

    Jo

  • natmcg
    natmcg Member Posts: 134 Member
    Ontario48 said:

    Message for All...Scammer on site

    Hello Everyone,

    I recieved an email from "ymrssandra70".  I reads like one of those scams for you to open a bank account and you get a millions of dollars, some lady is stating she has 3 months to live and wants to give me all her fortunes.  Sounds like a money laundering propostion.  So beware...I have notified the site with this info.  Pretty sad preying of people with cancer.

    Jo

    Thoese people are just scum

    Thanks for the waning Jo. There have been a few different intruders here from time to time. Some post multiple sale adds, some aren't even translated into English(not very clever scrum.) Quite rude of these people to try and take advantage of others who might be a bit vulnerable due to their cancer situation. Hey Jo did you flag her ??(inside joke of mine & Jo's) Hope everyone is progressing well in what ever stage their at. I'm still in the wait for checkup stage. About 10days to go. But Im pretty optimist that all will be well. Nat.

  • Saywhaat
    Saywhaat Member Posts: 1 Member
    my story

    I had a lump appear no less than 5 years ago on my left buttock. It started out relatively small when i first noticed it, and it itched. I scratched. Over the years it grew in size but stopped itching and never hurt and as a result, i quit paying attention. I wondered fleetingly what it was, but didnt really care all that much. Cancer certainly never crossed my mind.

    Fast forward to 2012. I started to notice it again, it was huuuge. It was so big you could see the indention through jeans.  But the only reason i began to pay attention again was because my husband was starting to notice it and he would ask me about it. So finally in 2013, I got sick of the third buttcheek attempting to grow and went to my pcm(military clinic) to get it looked at. I was immediately referred to general surgery to get it further evaluated and removed. By all accounts, everyone suspected and assured me this was nothing more than either a lipoma or cyst, benign. I was never worried. Didn't care what it was.  I really just wanted it gone. So the general surgeon removed it in his office under local anesthesia. 30 mins later and im stitched up and on my way home with my husband. Again, i am assured i wont have to come back, this is it, have a good life. Dissolvable sutures, you're free. So imagine my surprise when the nurse calls me a week and a half later and tells me i have an appt scheduled with Dr. Palmer in a few days. I was like, whaaa? But asked no questions, said yes ma'am and showed up. He enters the office and offers pleasantries, which we return of course, takes his chair and asks how I'm doing. Fine, i say. Healing good. He asks what I've been taking for pain. I say nothing. (not a big pill person). He then gets down to brass tax. You can tell he feels really bad about what he's about to say. "So it's not what we thought it was. It's actually a low-grade cancer called Dermatosdksabnkdfn." I tuned out to an extent. I was like, well of course it is. He was explaining everything. I'm sure my husband was listening, because i was laughing. He asks if I'm okay, i said yes, and i really was. i was just marveling at how those shoes just drop one after the other. Horrible way to start off a year. He had never heard of this, it being so rare, so he contacted an oncologist friend of his and they both researched it and talked back and forth, kicked ideas around, really got on top of this. For me. In any case, the wide excision surgery, which he had discussed with the oncologist friend, was scheduled for 2 weeks. Great. I had never been under general anesthesia.  Of course my husband and I did our own research, and agreed with his course of action in my case.

    Fast forward to last week, the 2oth of march. Had the surgery at a local surgery center, a 4 inch scar on my butt, hopped up on pain meds, and finally go home. My follow-up was on the 28th. Clear margins. Lucky me, he actually got it all the first time in his office! i knew i trusted this Dr. He just has a passion about his work and  he seems to genuinely care. I'm lucky and cancer free hopefully. I have a ct scan next week to check the rest of my body. i'm pretty pessimistic about it but i'm not worried at all. i truly believe it is what it is and we'll deal with the outcome. I will be getting out from under the military doctors after all this and getting a referral to an oncologist so i can be monitored in the coming years.

     

    For those of us who this happens to, worry is never your friend. Worrying will do nothing but stress you out and give you worry lines. Don't make it more than it is, and deal with it as it comes. You can't change that it's there, but you can control your approach to the news. It's cliche, but i now believe all things happen for a reason. I hate the dr. I never went. there had to be a significant annoying change on me for me to go. But i'm glad i did and it may have saved me lots of agony down the road.

  • mykidisthebest
    mykidisthebest Member Posts: 1 Member

    I was 12  when I found a spot on my lower back that was bothering me.  My mother looked at it and said "come on,  it's not like it's cancer or anything!"   It kept bothering me so  she took me to 5 different doctors over the years.  Every time I went in they told me it was a cyst and it will go away.  It was annoying having this pain.  Finally, a doctor  told me that it doors look like it's a cyst but it shouldn't be hurting so he decided to take it out. I  had local anesthesia  and they cut in and said it wasn't a cyst but looked like scar tissue.  I was 17 when they found that it was cancer.  They told me they had to research it because they never heard of it before. I had 3 surgeries before they  told me it was gone.  

     

     

     

    I am now 33. About 8 months ago I felt this spot on my upper back  by my shoulder blade.   It's growing.  So I am headed back into the doctor to get a biopsy  because the spot looks the same and  feels exactly like the one that was in my low back.  I had the connective  tissue  type 'Dermatofibrosarcoma Protuberans. I was told it  would only come back in the same spot. Has anyone heard of it coming back in other areas? 

     

     

  • natmcg
    natmcg Member Posts: 134 Member
    Saywhaat said:

    my story

    I had a lump appear no less than 5 years ago on my left buttock. It started out relatively small when i first noticed it, and it itched. I scratched. Over the years it grew in size but stopped itching and never hurt and as a result, i quit paying attention. I wondered fleetingly what it was, but didnt really care all that much. Cancer certainly never crossed my mind.

    Fast forward to 2012. I started to notice it again, it was huuuge. It was so big you could see the indention through jeans.  But the only reason i began to pay attention again was because my husband was starting to notice it and he would ask me about it. So finally in 2013, I got sick of the third buttcheek attempting to grow and went to my pcm(military clinic) to get it looked at. I was immediately referred to general surgery to get it further evaluated and removed. By all accounts, everyone suspected and assured me this was nothing more than either a lipoma or cyst, benign. I was never worried. Didn't care what it was.  I really just wanted it gone. So the general surgeon removed it in his office under local anesthesia. 30 mins later and im stitched up and on my way home with my husband. Again, i am assured i wont have to come back, this is it, have a good life. Dissolvable sutures, you're free. So imagine my surprise when the nurse calls me a week and a half later and tells me i have an appt scheduled with Dr. Palmer in a few days. I was like, whaaa? But asked no questions, said yes ma'am and showed up. He enters the office and offers pleasantries, which we return of course, takes his chair and asks how I'm doing. Fine, i say. Healing good. He asks what I've been taking for pain. I say nothing. (not a big pill person). He then gets down to brass tax. You can tell he feels really bad about what he's about to say. "So it's not what we thought it was. It's actually a low-grade cancer called Dermatosdksabnkdfn." I tuned out to an extent. I was like, well of course it is. He was explaining everything. I'm sure my husband was listening, because i was laughing. He asks if I'm okay, i said yes, and i really was. i was just marveling at how those shoes just drop one after the other. Horrible way to start off a year. He had never heard of this, it being so rare, so he contacted an oncologist friend of his and they both researched it and talked back and forth, kicked ideas around, really got on top of this. For me. In any case, the wide excision surgery, which he had discussed with the oncologist friend, was scheduled for 2 weeks. Great. I had never been under general anesthesia.  Of course my husband and I did our own research, and agreed with his course of action in my case.

    Fast forward to last week, the 2oth of march. Had the surgery at a local surgery center, a 4 inch scar on my butt, hopped up on pain meds, and finally go home. My follow-up was on the 28th. Clear margins. Lucky me, he actually got it all the first time in his office! i knew i trusted this Dr. He just has a passion about his work and  he seems to genuinely care. I'm lucky and cancer free hopefully. I have a ct scan next week to check the rest of my body. i'm pretty pessimistic about it but i'm not worried at all. i truly believe it is what it is and we'll deal with the outcome. I will be getting out from under the military doctors after all this and getting a referral to an oncologist so i can be monitored in the coming years.

     

    For those of us who this happens to, worry is never your friend. Worrying will do nothing but stress you out and give you worry lines. Don't make it more than it is, and deal with it as it comes. You can't change that it's there, but you can control your approach to the news. It's cliche, but i now believe all things happen for a reason. I hate the dr. I never went. there had to be a significant annoying change on me for me to go. But i'm glad i did and it may have saved me lots of agony down the road.

    Yep is sure is a mouth fulll!!!

    Hi there,(saywhaat) sounds like you have got your DFSP all undercontrol. Your right in saying we just have to deal with what comes along as it comes. So pleased you have got clear margins and your forward planning is done. Not all if us handle the DFSP news the same and this discussion board has been a wealth of knowledge and support to many people. Me being one of.them. Your story( thanks for sharing ) is just sooooo common. We go to the docs cause we are.sick of an annoying lump (mine was under my breast and always being rubbed by my underwire bra) and want it gone . Then a week or so later oh by the way that harmless growth it a rare skin cancer. So welcome to the 1 in a million club. Wishing you all the best.
    Nat.

  • natmcg
    natmcg Member Posts: 134 Member

    I was 12  when I found a spot on my lower back that was bothering me.  My mother looked at it and said "come on,  it's not like it's cancer or anything!"   It kept bothering me so  she took me to 5 different doctors over the years.  Every time I went in they told me it was a cyst and it will go away.  It was annoying having this pain.  Finally, a doctor  told me that it doors look like it's a cyst but it shouldn't be hurting so he decided to take it out. I  had local anesthesia  and they cut in and said it wasn't a cyst but looked like scar tissue.  I was 17 when they found that it was cancer.  They told me they had to research it because they never heard of it before. I had 3 surgeries before they  told me it was gone.  

     

     

     

    I am now 33. About 8 months ago I felt this spot on my upper back  by my shoulder blade.   It's growing.  So I am headed back into the doctor to get a biopsy  because the spot looks the same and  feels exactly like the one that was in my low back.  I had the connective  tissue  type 'Dermatofibrosarcoma Protuberans. I was told it  would only come back in the same spot. Has anyone heard of it coming back in other areas? 

     

     

    Hi, Im writing this in the hope that it will make you feel a little better in some way. First to answer your question ...no I haven't read of DFSP reoccurring in a new area(not that I can remember anyway) and yes reoccurring DFSP seems to always come back around the scar area. That's why we are told to keep a close check on our scars. Your story is unfortunatly so very common,not many Drs think the lumps are anything to be concerned about. It is only when we tell them of the pain, itching or discomfort do they do something and like in your case they cut before doing a biopsy. In that respect I was lucky my the Dr wanted a biopsy before removing it as he is trained in detection of skin disorders as well as being a GP but he really didn't expect it to be cancer let along such a rare one. Your doing the right thing by having a biopsy so keep that in mind. There will be no misdiagnose this time you know exactly what you want it checked for. Remember "its nothing until the Dr says it's something." I'm not making light of your situation. Not at all... 4mths after my final op. I was on holidays and noticed a mole under my left ear. My DFSP was under my left breast and the scar way still quite fresh and I had been told that if it were to come back it would be near or on the scar tissue. And it was very unlikely as I have good clear margins. But...The minute we got home I made an appointment wth my specialist. On the drive to his office I was thinking this thing has to be removed or biopsied asap. But I had worked myself up into a frenzy over a simple mole and its still under my ear(and I still check it every day lol) I'm hoping you will have the same outcome. Take care and try not to worry too much . Nat.

  • Ontario48
    Ontario48 Member Posts: 66 Member

    I was 12  when I found a spot on my lower back that was bothering me.  My mother looked at it and said "come on,  it's not like it's cancer or anything!"   It kept bothering me so  she took me to 5 different doctors over the years.  Every time I went in they told me it was a cyst and it will go away.  It was annoying having this pain.  Finally, a doctor  told me that it doors look like it's a cyst but it shouldn't be hurting so he decided to take it out. I  had local anesthesia  and they cut in and said it wasn't a cyst but looked like scar tissue.  I was 17 when they found that it was cancer.  They told me they had to research it because they never heard of it before. I had 3 surgeries before they  told me it was gone.  

     

     

     

    I am now 33. About 8 months ago I felt this spot on my upper back  by my shoulder blade.   It's growing.  So I am headed back into the doctor to get a biopsy  because the spot looks the same and  feels exactly like the one that was in my low back.  I had the connective  tissue  type 'Dermatofibrosarcoma Protuberans. I was told it  would only come back in the same spot. Has anyone heard of it coming back in other areas? 

     

     

    There is a small chance for...

    Hi there,

    I must say you are an anomaly as far as the statistics go.  A, because you had DFSP so young and B, you had a recurrence elsewhere.  My skin cancer surgeon told me there was a 1% chance of regrowth elsewhere.  So consider this...DFSP is one in a million.  Soft tissue sarcoma in adults represent 1% of all adult cancers and DFSP within that group is "very rare".  And now you represent a 1% regrowth elsewhere.  Not sure where you live but you should get yourself on a study list in your area.  It's important to document such occurrences for this.  We must thank our stars that this cancer is slow growing and typicaly does not produce distant spread. If you get a positive for DFSP again I encourage you to get a chest screen to ensure there is no spread there.  You are at higher risk for this after recurrence.  I would also question how it got to where it went...blood vessels, lymph nodes etc. 

    Connective tissue indicates a deep growth which contributes to a higher regrowth rate.  Again, it's important that these types of tumors are documented so the pros can understand them and better manage them.  Since ours, thank god, has a low rate of death it seems it's not taken as serious as other cancers.  I strongly recommend hooking yourself up with a STS (Soft Tissue Sarcoma) specialist.  Dermotologist get on this as it's in the skin but it's not like any other skin cancer.  It's tricky.  The pathology is tricky too.  You want someone who is versed in sarcoma.

    I myself have just found a STS specialist and am very interested in the discussion with her.  I will share once that appointment has happened (in May).  We can't fault our docs for not knowing about this.  It just so rare.  Sarcoma study in itself is just getting momentum.

    Good luck, keep us posted on your progress if you can.  I am sure we all will find you fascinating.  We all have that "recurrence" cloud over us at the moment.  We are here to help each other.

    Cheers...Joanne

  • Mrdeli
    Mrdeli Member Posts: 2
    DFSP Lower forearm, WLE, Stage T1

    Hi everyoone, 

    Had a WLE surgery. 

    Margins came back clear --- which I knew was key, but the margin was too small .2 of a cm. 

    My oncologist got me an X-Ray, bloodwork, and a thoracic CT scan with contrast.All clean. 

    My oncologist wrote a letter to the plastic surgeon and this week he cut out another (second) WLE that was much bigger than the first WLE. Pathology will be back in a week. I am expecting since margins are clear that there should be zero neoplasm found in the sample this time, right ? 

     

    M

     

     

  • natmcg
    natmcg Member Posts: 134 Member
    Mrdeli said:

    DFSP Lower forearm, WLE, Stage T1

    Hi everyoone, 

    Had a WLE surgery. 

    Margins came back clear --- which I knew was key, but the margin was too small .2 of a cm. 

    My oncologist got me an X-Ray, bloodwork, and a thoracic CT scan with contrast.All clean. 

    My oncologist wrote a letter to the plastic surgeon and this week he cut out another (second) WLE that was much bigger than the first WLE. Pathology will be back in a week. I am expecting since margins are clear that there should be zero neoplasm found in the sample this time, right ? 

     

    M

     

     

    Second surgery
    Hi, M.

    Welcome to the dfsp "one in a million club".To bad you didnt have a choice.
    You havnt given a great deal off info, but from what you have written I think you can be confident that you are in the clear.
    I had Mohs surgery and although the pathology looked good my surgon decided to remove a bit more to be 99.9% sure that I would not have to have more surgery. So far 1yr on everything is going fine.

    Was this a recurrence of dfsp for you.? If not then your medical team seem to be very thourough with your scans and tests.
    Have these Drs your seeing delt with dfsp before? Just curious....

    Try not to worry between now and getting your results.

    Sending Best Wishes for (extra) clear margins.:-):-)

    Natalie.
  • Mrdeli
    Mrdeli Member Posts: 2
    natmcg said:

    Second surgery
    Hi, M.

    Welcome to the dfsp "one in a million club".To bad you didnt have a choice.
    You havnt given a great deal off info, but from what you have written I think you can be confident that you are in the clear.
    I had Mohs surgery and although the pathology looked good my surgon decided to remove a bit more to be 99.9% sure that I would not have to have more surgery. So far 1yr on everything is going fine.

    Was this a recurrence of dfsp for you.? If not then your medical team seem to be very thourough with your scans and tests.
    Have these Drs your seeing delt with dfsp before? Just curious....

    Try not to worry between now and getting your results.

    Sending Best Wishes for (extra) clear margins.:-):-)

    Natalie.

    Surgeries and tests

    Hey Natalie

    Yes, I was worried when oncology set up the thoracic CT. I was told it was routine as I had already  been diagnosed. This is the first time I have had DFSP. My plastic surgeon says he has seen DFSP about 20 times in 28 years. He mentioned that people from all over travel to the plastic surgeons they are the front line. My surgeon was not a big fan of mohs for DFSP  unless its in a spot that cannot have tons of tissue removed, like face or neck. Since mine was in the lower forearm he basically said its better to take out the tissue with WLE. I am a bit concerned about percentages WLE vs MOHS but up until now we have been in shock and have been following what they tell us.

    I don't know how much experience my oncologist had with DFSP but she picked up on getting a bigger margin the minute I got in her office. She mentioned that since I have cancer the benefits of CT always outweigh the risk going forward forward. I took this observation rather stoically. I have heard via the radiologist that she has no bedside manner but is very thorough. Works for me!

  • natmcg
    natmcg Member Posts: 134 Member
    Mrdeli said:

    Surgeries and tests

    Hey Natalie

    Yes, I was worried when oncology set up the thoracic CT. I was told it was routine as I had already  been diagnosed. This is the first time I have had DFSP. My plastic surgeon says he has seen DFSP about 20 times in 28 years. He mentioned that people from all over travel to the plastic surgeons they are the front line. My surgeon was not a big fan of mohs for DFSP  unless its in a spot that cannot have tons of tissue removed, like face or neck. Since mine was in the lower forearm he basically said its better to take out the tissue with WLE. I am a bit concerned about percentages WLE vs MOHS but up until now we have been in shock and have been following what they tell us.

    I don't know how much experience my oncologist had with DFSP but she picked up on getting a bigger margin the minute I got in her office. She mentioned that since I have cancer the benefits of CT always outweigh the risk going forward forward. I took this observation rather stoically. I have heard via the radiologist that she has no bedside manner but is very thorough. Works for me!

    WLE vs MOHS

    Hi M,

    I don't think you have anything to worry about in regards to not having mohs. From what I have read and what my surgon told me the main thing is to get it all. And experienced DFSP Drs. know not to skimp  on the clear Margins. Thats why they sent you back to get a better/wider clearence. 

    In my case I asked  my GP to  do the first excision even  though  he recomended I  see a specialist.  He removed the tumor and went with recomemded margins but a week  later I was told that the margins were not clear and that now it was obvious that it had spread to the fatty tissue  as well. So having mohs  was more  about avoiding more than one more surgery to get those " Clear Margins" . And They did :-)

    And fortunately it hadnt made its way into the muscle tissue. 

    So from what you have written it looks like you are in very good hands  and should be hearing good news soon.

    Keep Us Posted

    Nat.

     

  • marshal g
    marshal g Member Posts: 1 Member
    DFSP

    I was diagnosed with DFSP 3 months ago.  It began as a lump on the back of my scalp. I mistook it for a cyst of some type and didn't bother to see the doctor for at least 6 months.  When I originally visited a dermatologist he thought/hoped it was a lipoma but as soon as he "punched" the tissue for removal he knew it wasn't.  A biopsy confirmed DFSP and I scheduled an appointment with a Mohs trained dermatological surgeon here in SLC 2 weeks later.  

    It was quite the experience.  My wife and I were originally told it would take 1/2 a day of surgery but it had spread much further than anyone anticipated.  The surgeon removed tissue 5X on one day and a 6th time on the following day - he sent us home saying that he would not be able to take anymore tissue and scheduled an appointment for me to see a surgical oncologist.  Fortunately the last Mohs procedure came back with clear margins and I was immediately scheduled to see a plastic surgeon.  4 days later I ended up with 70 staples and 60ish stitches following the flap procedure to close the 12cm x 8cm scalp wound.  2 months later my recovery from the surgery is almost complete.  

    I don't know what advice I can offer.  Mohs was the best option for me since the cancer was on my scalp.  No one has recommended chemo or radiation at this point but they want me to see the dermatologist every 3 months for 2 years.  There's lots of scarring, mostly from the reconstruction, but my wife still loves me and I don't have dfsp - so I'll take that for now and hope for the best going forward.

    If anyone is in the SLC, UT area - I recommend the UofUtah Medical Center's Mohs Clinic and Reconstruction Team.  The treatment I've received gives me confidence about my future.

    Marshal

  • periwinkle1979
    periwinkle1979 Member Posts: 1
    Just Diagnosed

    Hi, I'm 34 years old and was just diagnosed with DFSP a few days ago.  I first noticed a bump under my breast about 6 years ago.  Like many of you, each Dr. told me it was a just a cyst and would probably go away on it's own.  4 1/2 yrs later it had gotten much bigger and super sore since my bra rubbed directly against it.  My Dr. did a surgery in office to remove what he thought was one cyst.  He ended up removing, I believe, 5 total tumors.  He told me they were just cysts that multiply and not to worry.  Well 6 months later they showed up again, only this time I could see three on the surface of the skin.  I went back to my original Dr. who sent me to a surgeon since there was too much scar tissue for him to opporate out of his office.  The surgeon encouraged me to get a biopsy.  It came back positive for DFSP.  I officially meet with the oncologist in a few days, but from what the financial director said, he wants me on Gleevec immediately.  It's such a whirl wind.  To be told for years that it's nothing but a harmless cyst by several doctors only to find out it's cancer....ugh!  After much research, I'm convinced MOHS is the best choice for surgery, keeping my fingers crossed that it'll be a possibility for me.  I'm super thankful it's not a super scary cancer.....but it's still cancer and that has me deeply concerned.  Any of you tried Gleevec?   The side effects sound AWFUL!  Some websites I read say that chemo is helpful and others can it's completely ineffective.  Thoughts?

  • Cuda340
    Cuda340 Member Posts: 4 Member
    marshal g said:

    DFSP

    I was diagnosed with DFSP 3 months ago.  It began as a lump on the back of my scalp. I mistook it for a cyst of some type and didn't bother to see the doctor for at least 6 months.  When I originally visited a dermatologist he thought/hoped it was a lipoma but as soon as he "punched" the tissue for removal he knew it wasn't.  A biopsy confirmed DFSP and I scheduled an appointment with a Mohs trained dermatological surgeon here in SLC 2 weeks later.  

    It was quite the experience.  My wife and I were originally told it would take 1/2 a day of surgery but it had spread much further than anyone anticipated.  The surgeon removed tissue 5X on one day and a 6th time on the following day - he sent us home saying that he would not be able to take anymore tissue and scheduled an appointment for me to see a surgical oncologist.  Fortunately the last Mohs procedure came back with clear margins and I was immediately scheduled to see a plastic surgeon.  4 days later I ended up with 70 staples and 60ish stitches following the flap procedure to close the 12cm x 8cm scalp wound.  2 months later my recovery from the surgery is almost complete.  

    I don't know what advice I can offer.  Mohs was the best option for me since the cancer was on my scalp.  No one has recommended chemo or radiation at this point but they want me to see the dermatologist every 3 months for 2 years.  There's lots of scarring, mostly from the reconstruction, but my wife still loves me and I don't have dfsp - so I'll take that for now and hope for the best going forward.

    If anyone is in the SLC, UT area - I recommend the UofUtah Medical Center's Mohs Clinic and Reconstruction Team.  The treatment I've received gives me confidence about my future.

    Marshal

    DFSP

    Hi Marshal, I have a similar tumor on the top of my head. My skull has caused it to grow outward and its pretty large now. Is there any advice you can give me at all. My Mohs surgery is in 2 months. I guess the surgeon is pretty busy. Again any advice would be much appreciated.

  • Cuda340
    Cuda340 Member Posts: 4 Member
    DFSP

    I was diagnosed with a large tumor on the top of my head. Scheduled for Mohs surgery in 2 months because the surgeon is booked. Has anyone had it on the head and if so can you give me any advice.