DFSP Friends.

natmcg
natmcg Member Posts: 134 Member
edited November 2012 in Sarcoma #1
Hi I have started this new heading so that anyone who is dealing with.DFSP at the moment can contact other people in the same position without having to scroll through all the old entries. Please don't get me wrong the older entries have valuable information and are always worth reading if you find out you have this rear cancer. This is just my attempt at bringing current members together faster.
Natalie.
«13456789

Comments

  • natmcg
    natmcg Member Posts: 134 Member
    gayled627,airforcewifeky,cmguy777,giffer
    Hi DFSP survivors, I've posted this with the names of the most resent members so if you or a new DFSP person logs on our thread will still be near the top. But the other thread will always be somewhere further down the list, and will probably still be used as well. There is only a small group of us here who have recently delt with DFSP or still are dealing with this rear skin cancer. For those of you who are still waiting to finish your treatment I wish you well and a speedy recovery.

    I hope you all have a Happy and Safe Festive Season.
    Best wishes for the New Year

    Natalie.
  • gayled627
    gayled627 Member Posts: 6
    Awaiting the final treatment plan

    I only just now found your new feed Natalie.  I know this site is hard to navigate and understand its' nuiances.  I finally finished all 4 consultations (MOHS surgeon, oncology radiologist, head/neck surgeon and plastic surgeon).  I'm waiting for my oncologist to call so we can discuss the consensus on my treatment.  I'm expecting I'll hear that I'll be losing most of my left eyebrow, but not sure if I'll be having a skin graft or first have skin expanders used so I can have a flap procedure.  That's the status for me right now.  Whatever the plan is, I won't do anyrhing until after the New Year.  How are you doing with your process?  Hopefully all is going well.  Hope you had a nice Christmas and let's hope we all have a Happy, Healthy, Healing New Year!!!!

    Gayle

  • natmcg
    natmcg Member Posts: 134 Member
    gayled627 said:

    Awaiting the final treatment plan

    I only just now found your new feed Natalie.  I know this site is hard to navigate and understand its' nuiances.  I finally finished all 4 consultations (MOHS surgeon, oncology radiologist, head/neck surgeon and plastic surgeon).  I'm waiting for my oncologist to call so we can discuss the consensus on my treatment.  I'm expecting I'll hear that I'll be losing most of my left eyebrow, but not sure if I'll be having a skin graft or first have skin expanders used so I can have a flap procedure.  That's the status for me right now.  Whatever the plan is, I won't do anyrhing until after the New Year.  How are you doing with your process?  Hopefully all is going well.  Hope you had a nice Christmas and let's hope we all have a Happy, Healthy, Healing New Year!!!!

    Gayle

    nice to hear from you

    Nice to hear from you again Gayle. This site is driving me crazy, not sure if you got my last email Im having all sorts of trouble since csn did an upgrade on this forum. Iv lost all my contact details and emails that I sent or received. The original thread where we first posted has changed as well our post are on page 5 now and they seem to be in a different order. I was just getting use to the old format and now it's all changed. I'm sure everything will go fine when you finaly have your procedure done. And once your all healed you can have the eyebrow cosmeticly tattooed if don't want to be using brow pencil every day. I have been very lucky,except for an indent (due to fat tissues being removed) and a 5-6 inch long scar I have healed up really well. Iv gone back to the gym and do notice a bit of soreness afterwards but that too will pass in time. My Christmas was lovely spent time with my new granddaughter she is only 5wks old. And Im looking forward to the new year as my son's girlfriend is coming to stay for 6mths( she's from California) and we.can't wait to see her again. Last time she was here I was only 2wks post op.and I couldn't do much. Take care and happy new year. Nat.

  • natmcg
    natmcg Member Posts: 134 Member
    natmcg said:

    nice to hear from you

    Nice to hear from you again Gayle. This site is driving me crazy, not sure if you got my last email Im having all sorts of trouble since csn did an upgrade on this forum. Iv lost all my contact details and emails that I sent or received. The original thread where we first posted has changed as well our post are on page 5 now and they seem to be in a different order. I was just getting use to the old format and now it's all changed. I'm sure everything will go fine when you finaly have your procedure done. And once your all healed you can have the eyebrow cosmeticly tattooed if don't want to be using brow pencil every day. I have been very lucky,except for an indent (due to fat tissues being removed) and a 5-6 inch long scar I have healed up really well. Iv gone back to the gym and do notice a bit of soreness afterwards but that too will pass in time. My Christmas was lovely spent time with my new granddaughter she is only 5wks old. And Im looking forward to the new year as my son's girlfriend is coming to stay for 6mths( she's from California) and we.can't wait to see her again. Last time she was here I was only 2wks post op.and I couldn't do much. Take care and happy new year. Nat.

    johanne from canada
    Hope you check here and get this message, our DFSP experience has so many similarities.!! Sorry your surgery was unpleasant. I tried writing you an email but some how it all went wrong and I gave. It took ages for me she's to wrk out how to navigate my way around this site and even longer to wrk out posting and emails.( I'm not very good wth this stuff) them 2 wks ago csn did an upgrade on this site and now Im having mote trouble than ever.
    I do want to share my DFSP story wth you( if you want to hear it) and would love to hear how your recovery is going. I'm running out of time right now. But I will try and email you soon and Ill check hear as well.
    Take care
    Natalie.
    PS sorry about the mistakes Im also trying to get use to the touch screen on my ph.( which I usr to access this site) and I having trouble wth that to. Need a teenager to help lol.
  • Ontario48
    Ontario48 Member Posts: 66 Member
    natmcg said:

    johanne from canada
    Hope you check here and get this message, our DFSP experience has so many similarities.!! Sorry your surgery was unpleasant. I tried writing you an email but some how it all went wrong and I gave. It took ages for me she's to wrk out how to navigate my way around this site and even longer to wrk out posting and emails.( I'm not very good wth this stuff) them 2 wks ago csn did an upgrade on this site and now Im having mote trouble than ever.
    I do want to share my DFSP story wth you( if you want to hear it) and would love to hear how your recovery is going. I'm running out of time right now. But I will try and email you soon and Ill check hear as well.
    Take care
    Natalie.
    PS sorry about the mistakes Im also trying to get use to the touch screen on my ph.( which I usr to access this site) and I having trouble wth that to. Need a teenager to help lol.

    Got your note!!

    I've been poking around the site as well, not very user friendly.  Been difficult connecting with others or maybe there just aren't many on here with DFSP.  Anyhow hope you are well and enjoying the day...well when you wake up.  ; )

    Joanne

  • Ontario48
    Ontario48 Member Posts: 66 Member
    gayled627 said:

    Awaiting the final treatment plan

    I only just now found your new feed Natalie.  I know this site is hard to navigate and understand its' nuiances.  I finally finished all 4 consultations (MOHS surgeon, oncology radiologist, head/neck surgeon and plastic surgeon).  I'm waiting for my oncologist to call so we can discuss the consensus on my treatment.  I'm expecting I'll hear that I'll be losing most of my left eyebrow, but not sure if I'll be having a skin graft or first have skin expanders used so I can have a flap procedure.  That's the status for me right now.  Whatever the plan is, I won't do anyrhing until after the New Year.  How are you doing with your process?  Hopefully all is going well.  Hope you had a nice Christmas and let's hope we all have a Happy, Healthy, Healing New Year!!!!

    Gayle

    Hi Gayle, new friend of Natalie : )

    Hello Gayle, we seem to be the only active ones on here so thought I'd touch base.  I am new to this, been trying to figure it out.  I will add you to my favorites and poke around a bit.  Hope to chat some.

    Take care, Joanne

  • Ontario48
    Ontario48 Member Posts: 66 Member
    natmcg said:

    johanne from canada
    Hope you check here and get this message, our DFSP experience has so many similarities.!! Sorry your surgery was unpleasant. I tried writing you an email but some how it all went wrong and I gave. It took ages for me she's to wrk out how to navigate my way around this site and even longer to wrk out posting and emails.( I'm not very good wth this stuff) them 2 wks ago csn did an upgrade on this site and now Im having mote trouble than ever.
    I do want to share my DFSP story wth you( if you want to hear it) and would love to hear how your recovery is going. I'm running out of time right now. But I will try and email you soon and Ill check hear as well.
    Take care
    Natalie.
    PS sorry about the mistakes Im also trying to get use to the touch screen on my ph.( which I usr to access this site) and I having trouble wth that to. Need a teenager to help lol.

    PS...Silly me

    I forgot to mention, I flagged you thinking that it was like a bookmark, LoL.  I realize now it is to alert inappropriate content.  I suspect it will be ignored.  Cheers, Joanne

  • Rangegirl
    Rangegirl Member Posts: 3
    Ontario48 said:

    Hi Gayle, new friend of Natalie : )

    Hello Gayle, we seem to be the only active ones on here so thought I'd touch base.  I am new to this, been trying to figure it out.  I will add you to my favorites and poke around a bit.  Hope to chat some.

    Take care, Joanne

    I'm back

    Hello. Yes, this site is hard to navigate and though I'd joined last May, can't find any of my posts or discussions.  I'm on the 'back side' of DFSP. Had Mohs in June. This month I will be going for my second follow-up to check on reoccurance. This is a crappy cancer to have simply because it's so hard to find an info on it because of rarity. I did connect with a woman in Australia and she and I keep contact now through email.  I'm from Minnesota. Hope you are all doing well!  Take care, Rangegirl

  • Ontario48
    Ontario48 Member Posts: 66 Member
    Rangegirl said:

    I'm back

    Hello. Yes, this site is hard to navigate and though I'd joined last May, can't find any of my posts or discussions.  I'm on the 'back side' of DFSP. Had Mohs in June. This month I will be going for my second follow-up to check on reoccurance. This is a crappy cancer to have simply because it's so hard to find an info on it because of rarity. I did connect with a woman in Australia and she and I keep contact now through email.  I'm from Minnesota. Hope you are all doing well!  Take care, Rangegirl

    Hello Minnesota!

    Hi there, hope all is going well.  Nice to have the procedures behind you for sure.  I got the all clear on Jan 3rd.  It was a long wait. I didn't have the Moh's but rather WLE (wide local excision).  It was done by a Moh's doctor though in Toronto.  Pathology took a month and unfortunately ran over the holidays.  But I am happy for the results.  Your Aussie friend, is that Natalie.  She is still here and we've been chatting.  I am sure she would be happy to hear from you.  Where did you have your DFSP and what kind of work up did you get.  My doc didn't do anything outside of the surgery.  Not sure if I should be pushing for more.  Waiting to chat with my GP.  I need to find a dermatologist as well.  Hard to find them with DFSP experience.

    If you really dig you will find more and more info on this type of skin cancer.  I got a really good updated article from the National Comprehensive Cancer Network.  http://www.nccn.org/about/news/newsinfo.asp?NewsID=116  Also look up info on soft tissue sarcomas.  Of everything I've read the biggest obstacle is that most doctors, specialized or otherwise, are not very informed about this type of skin cancer.  Sarcomas are rare in themselves and then DFSP is even rarer.

    Hope to chat some more...Joanne

  • natmcg
    natmcg Member Posts: 134 Member
    Ontario48 said:

    Hello Minnesota!

    Hi there, hope all is going well.  Nice to have the procedures behind you for sure.  I got the all clear on Jan 3rd.  It was a long wait. I didn't have the Moh's but rather WLE (wide local excision).  It was done by a Moh's doctor though in Toronto.  Pathology took a month and unfortunately ran over the holidays.  But I am happy for the results.  Your Aussie friend, is that Natalie.  She is still here and we've been chatting.  I am sure she would be happy to hear from you.  Where did you have your DFSP and what kind of work up did you get.  My doc didn't do anything outside of the surgery.  Not sure if I should be pushing for more.  Waiting to chat with my GP.  I need to find a dermatologist as well.  Hard to find them with DFSP experience.

    If you really dig you will find more and more info on this type of skin cancer.  I got a really good updated article from the National Comprehensive Cancer Network.  http://www.nccn.org/about/news/newsinfo.asp?NewsID=116  Also look up info on soft tissue sarcomas.  Of everything I've read the biggest obstacle is that most doctors, specialized or otherwise, are not very informed about this type of skin cancer.  Sarcomas are rare in themselves and then DFSP is even rarer.

    Hope to chat some more...Joanne

    Welcome back Kim.

    Hi I'm Natalie the Aussie that has been chatting with joanne (from Canada). I found one of your old posts along with Frangipani8 who I think is the other Australian DFSP survivor that you are in contract with. So you got through surgery and are due for a second check up. How great. I hope if you did end up with a graft that it wasn't to painfull. This site has had somekind of software upgrade, and its been a pain in the a** . I lost all my original emails, which they use to call PMs .( personal message) and lots of other stuff seems to have changed or gotten mixed up. The original thread called dermatofibrosacoma protuberance DFSP. (That where a least one of your posts is) was being pushed further and further down the list because new posts were few and far between(which I suppose is a good thing).so I started this new thread called DFSP friends. And I'm glad you joined in again and gave our little group an update. I also worked out that by adding a post(or two or three) the other thread would come back to the top. Joanne and I both had our Dfsp in the same place under our left breast, and we have similar concerns about reoccurrence as it so near vital organs. You can see from her post to you that she has done some serious research. Which makes me feel better because I was starting to think maybe I was overreacting to my situation. People around me tend to think / say "well you had it cut out ...no further treatment needed ...so get over it." My first check up is nxt mth. I'm pretty happy with the scar, I have a.substantial dent as the cancer had gone into my fat tissue,so I kinda have skin over muscle without any padding ,but being where it is it doesn't bother me. To who ever may drop in for a read, I hope you are well Cheers for Australia. Natalie

  • natmcg
    natmcg Member Posts: 134 Member
    natmcg said:

    Welcome back Kim.

    Hi I'm Natalie the Aussie that has been chatting with joanne (from Canada). I found one of your old posts along with Frangipani8 who I think is the other Australian DFSP survivor that you are in contract with. So you got through surgery and are due for a second check up. How great. I hope if you did end up with a graft that it wasn't to painfull. This site has had somekind of software upgrade, and its been a pain in the a** . I lost all my original emails, which they use to call PMs .( personal message) and lots of other stuff seems to have changed or gotten mixed up. The original thread called dermatofibrosacoma protuberance DFSP. (That where a least one of your posts is) was being pushed further and further down the list because new posts were few and far between(which I suppose is a good thing).so I started this new thread called DFSP friends. And I'm glad you joined in again and gave our little group an update. I also worked out that by adding a post(or two or three) the other thread would come back to the top. Joanne and I both had our Dfsp in the same place under our left breast, and we have similar concerns about reoccurrence as it so near vital organs. You can see from her post to you that she has done some serious research. Which makes me feel better because I was starting to think maybe I was overreacting to my situation. People around me tend to think / say "well you had it cut out ...no further treatment needed ...so get over it." My first check up is nxt mth. I'm pretty happy with the scar, I have a.substantial dent as the cancer had gone into my fat tissue,so I kinda have skin over muscle without any padding ,but being where it is it doesn't bother me. To who ever may drop in for a read, I hope you are well Cheers for Australia. Natalie

    16&1/2yrs dfsp free
    Hi everyone, just thought Id let you know there is a post in one of the other DFSP threads from a person that had quite a nit of her foot removed due to DFSP and has had no problem since.
    Worth a read.
    Bye for now
    Natalie
  • t123
    t123 Member Posts: 24
    just dx with angiosarcoma
    Looking for others like myself. Starting chemo this week, then surgery and radiation treatment.
  • natmcg
    natmcg Member Posts: 134 Member
    t123 said:

    just dx with angiosarcoma
    Looking for others like myself. Starting chemo this week, then surgery and radiation treatment.

    angiosarcoma
    t123
    Sorry to hear you have had this dx,
    DFSP is a very different cancer so I can't help you with any info.,but if you scroll down a nit from where you found the heading sarcoma you will find the heading your looking for and maybe someone there can help you.
    Good luck
    Nat.
  • t123
    t123 Member Posts: 24
    natmcg said:

    angiosarcoma
    t123
    Sorry to hear you have had this dx,
    DFSP is a very different cancer so I can't help you with any info.,but if you scroll down a nit from where you found the heading sarcoma you will find the heading your looking for and maybe someone there can help you.
    Good luck
    Nat.

    thank you
    Thank you.. Just started chemo it's going well. Bone & whole body scan is clear. So far the cancer has not spread. Till in stage 3 and fighting :) My support & hope to all of you
  • Lone111
    Lone111 Member Posts: 32
    natmcg said:

    gayled627,airforcewifeky,cmguy777,giffer
    Hi DFSP survivors, I've posted this with the names of the most resent members so if you or a new DFSP person logs on our thread will still be near the top. But the other thread will always be somewhere further down the list, and will probably still be used as well. There is only a small group of us here who have recently delt with DFSP or still are dealing with this rear skin cancer. For those of you who are still waiting to finish your treatment I wish you well and a speedy recovery.

    I hope you all have a Happy and Safe Festive Season.
    Best wishes for the New Year

    Natalie.

    Hi i am new here

    Hi as I wrote in the header I 'm new. I was told yesterday that a biopsy showed DFSP in a tumor I had removed in January from my hip. I've had the lump on my hip for more that 4years always been told by my GT that is was a benign fat tissue. Nothing to see on the skin covering it. I've read somewhere that there are usually some sign on the skin when it is dfsp.

    anyways I'm going in for surgery on Tuesday 

    i'm 38 Married, mother of two. My son turns 4 today and my daughter is 5 y. And just started school last week. I live in Denmark. And for past 24 hours I have been crying trying to make any sense of this. Is there any?

  • natmcg
    natmcg Member Posts: 134 Member
    Lone111 said:

    Hi i am new here

    Hi as I wrote in the header I 'm new. I was told yesterday that a biopsy showed DFSP in a tumor I had removed in January from my hip. I've had the lump on my hip for more that 4years always been told by my GT that is was a benign fat tissue. Nothing to see on the skin covering it. I've read somewhere that there are usually some sign on the skin when it is dfsp.

    anyways I'm going in for surgery on Tuesday 

    i'm 38 Married, mother of two. My son turns 4 today and my daughter is 5 y. And just started school last week. I live in Denmark. And for past 24 hours I have been crying trying to make any sense of this. Is there any?

    Lone 111...Your not alone anymore
    Hi I'm Natalie from Australia

    It's not easy to make sence of getting a cancer diagnosed, and the first few days(even weeks) are the hardest
    I'm so glad you found this forum, there are a few of us here who have recently been through the same experience as you. Me being one of them. So welcome to our group( but sorry you had to join)
    Please don't worry too much DFSP is so very treatable. Try not to Google to much there is some scary stuff and its not going to relate to you. DFSP can look different on the skins surface on different people , once it is diagnosed it is always surgically removed by Mohs or wide excision. Mine started with a darkish patch of skin that seemed to change from an indent ,then over the yrs became a growth/tumor. I also was told it was fatty tissues probably irritated by my underwire NRA. It grow slowly and another small bump appeared. So last.yr in June Id had enough and asked a Dr to remove it(them). Fast forward to today.....DFSP all gone and life is good.

    Has your Dr.explained what type of surgery you will have? Does he/she have experience dealing with DFSP?
    I'm not gping to go into any details. But please ask any questions.you might have and I will help if I can. I'm sure my friend Jo from Canada will drop in and say hello very soon to.(we met here a few months ago we both had.our DFSP under our left breast) Jo has some very informative post here but you will need to go into the.other DFSP headings. If you feel compelled to read about our type of cancer and how people cope then the stories here are very interesting.
    Once again please don't worry ...your going to be fine.

    Happy birthday to your little boy and your daughter must be full of news everyday .
    My three boys are all grown up. 27,24.& 22. And I have a beautiful 4mth old granddaughter.

    I'll check tomorrow to see how your going.
    Positive thoughts,prays good vibes etc.etc. coming your way :-) :-)
    Bye for now Nat.
  • Lone111
    Lone111 Member Posts: 32
    natmcg said:

    Lone 111...Your not alone anymore
    Hi I'm Natalie from Australia

    It's not easy to make sence of getting a cancer diagnosed, and the first few days(even weeks) are the hardest
    I'm so glad you found this forum, there are a few of us here who have recently been through the same experience as you. Me being one of them. So welcome to our group( but sorry you had to join)
    Please don't worry too much DFSP is so very treatable. Try not to Google to much there is some scary stuff and its not going to relate to you. DFSP can look different on the skins surface on different people , once it is diagnosed it is always surgically removed by Mohs or wide excision. Mine started with a darkish patch of skin that seemed to change from an indent ,then over the yrs became a growth/tumor. I also was told it was fatty tissues probably irritated by my underwire NRA. It grow slowly and another small bump appeared. So last.yr in June Id had enough and asked a Dr to remove it(them). Fast forward to today.....DFSP all gone and life is good.

    Has your Dr.explained what type of surgery you will have? Does he/she have experience dealing with DFSP?
    I'm not gping to go into any details. But please ask any questions.you might have and I will help if I can. I'm sure my friend Jo from Canada will drop in and say hello very soon to.(we met here a few months ago we both had.our DFSP under our left breast) Jo has some very informative post here but you will need to go into the.other DFSP headings. If you feel compelled to read about our type of cancer and how people cope then the stories here are very interesting.
    Once again please don't worry ...your going to be fine.

    Happy birthday to your little boy and your daughter must be full of news everyday .
    My three boys are all grown up. 27,24.& 22. And I have a beautiful 4mth old granddaughter.

    I'll check tomorrow to see how your going.
    Positive thoughts,prays good vibes etc.etc. coming your way :-) :-)
    Bye for now Nat.

    Why?

    Any studies suggesting why this cancer develops? Does anyone in here know of any? Or are DFSP survivor more likely to develop any other types types of cancers? I guess any fat tissue tumor in the future should be removed immidiately if I develop any? 

     

  • Lone111
    Lone111 Member Posts: 32
    natmcg said:

    Lone 111...Your not alone anymore
    Hi I'm Natalie from Australia

    It's not easy to make sence of getting a cancer diagnosed, and the first few days(even weeks) are the hardest
    I'm so glad you found this forum, there are a few of us here who have recently been through the same experience as you. Me being one of them. So welcome to our group( but sorry you had to join)
    Please don't worry too much DFSP is so very treatable. Try not to Google to much there is some scary stuff and its not going to relate to you. DFSP can look different on the skins surface on different people , once it is diagnosed it is always surgically removed by Mohs or wide excision. Mine started with a darkish patch of skin that seemed to change from an indent ,then over the yrs became a growth/tumor. I also was told it was fatty tissues probably irritated by my underwire NRA. It grow slowly and another small bump appeared. So last.yr in June Id had enough and asked a Dr to remove it(them). Fast forward to today.....DFSP all gone and life is good.

    Has your Dr.explained what type of surgery you will have? Does he/she have experience dealing with DFSP?
    I'm not gping to go into any details. But please ask any questions.you might have and I will help if I can. I'm sure my friend Jo from Canada will drop in and say hello very soon to.(we met here a few months ago we both had.our DFSP under our left breast) Jo has some very informative post here but you will need to go into the.other DFSP headings. If you feel compelled to read about our type of cancer and how people cope then the stories here are very interesting.
    Once again please don't worry ...your going to be fine.

    Happy birthday to your little boy and your daughter must be full of news everyday .
    My three boys are all grown up. 27,24.& 22. And I have a beautiful 4mth old granddaughter.

    I'll check tomorrow to see how your going.
    Positive thoughts,prays good vibes etc.etc. coming your way :-) :-)
    Bye for now Nat.

    Thank you - it is so nice to hear

    Hi Nat (Nat means night in Danish:-) )

    My name btw is Lone and has nothing to do with feeling alone although I think I feel alone with diagnosis  - I'm glad to have found this forum.

    Nat: how long time pasted from you first found the lumps to last June when you Had them removed?

    i'll be going in for wide excision. 2 cm on either side of the original scar. I don't think my oncologist is experienced in DFSP since statistically there can only be about 2-3 cases a year in Denmark (5 mill inhabitants) but hopefully he knows something about soft tissue sarcomas which I can google this is. And he has had 15 years in oncology so I'm as good as be in that account.

    My hip has really started to hurt But that must be imagination right? I cannot truely feel the cancer spreading right? I have a too good imagination and it is striking that it only started hurting after my GP told me about the biopsy and it did not hurt for the first 7weeks after having the tumor removed.

    Great with grown-up kids. Do they live close? And a granddaughter - must be great. My kids were so tired to night:-) and tomorrow the family comes and will get the news of DFSP...

    thanks again for answering swiftly - it means the world right now

    bye

    lone

  • Ontario48
    Ontario48 Member Posts: 66 Member
    Lone111 said:

    Thank you - it is so nice to hear

    Hi Nat (Nat means night in Danish:-) )

    My name btw is Lone and has nothing to do with feeling alone although I think I feel alone with diagnosis  - I'm glad to have found this forum.

    Nat: how long time pasted from you first found the lumps to last June when you Had them removed?

    i'll be going in for wide excision. 2 cm on either side of the original scar. I don't think my oncologist is experienced in DFSP since statistically there can only be about 2-3 cases a year in Denmark (5 mill inhabitants) but hopefully he knows something about soft tissue sarcomas which I can google this is. And he has had 15 years in oncology so I'm as good as be in that account.

    My hip has really started to hurt But that must be imagination right? I cannot truely feel the cancer spreading right? I have a too good imagination and it is striking that it only started hurting after my GP told me about the biopsy and it did not hurt for the first 7weeks after having the tumor removed.

    Great with grown-up kids. Do they live close? And a granddaughter - must be great. My kids were so tired to night:-) and tomorrow the family comes and will get the news of DFSP...

    thanks again for answering swiftly - it means the world right now

    bye

    lone

    Hello Lone...All will be fine!

    Nat is completely right.  Even though this is a very rare cancer, and yes a lot of doctors haven't dealt with it, it is very treatable and cureable. Sounds like your treatment is moving along just fine.  It's the waiting around that I found most difficult.  And then when you are past it you will be thinking, what the heck was that all about! 

    This type of tumor can be un-noticed for years and misdiagnosed many times.  My first surgeon even said, its not cancer it's just a lump of fat.  Well hey, this IS a soft tissue sarcoma...which is in the FAT. Mine started pretty much the same as Nat's (ours are actually identical).  I noticed mine about 4 years ago starting with a skin plague, small smudge of darker skin.  And to answer your question, not all have the protuberans (stalky growths from the skin).  This cancer starts in the deeper layers and can grow up and out.  It also has projections...roots.  That's why the type of surgery.  They need to remove surrounding tissue to encompass all the roots.  So once you get what they call clear margins, you are good!!  Being on your hip provides a lot of area for your doctors to work which means easier recovery for you and better chance of getting it all.  I had Wide Local Excision like you will be having.  I was awake, I'd ask to be put to sleep if I had to do it over again.  There really is not need to be awake.  Nat had Moh's.  Lots of debate online on that one.  It' what you doctor feels is best for you and your situation.  My second surgeon was Moh's certified and I when to a Mohs clinic in Toronto and had WLE...go figure.  But he got it all in one shot and did a great job on the incision.

    Being told you have cancer is scary.  Be assured that if you have to have a cancer, this isn't one of the BAD ones.  Some have these tumors for 10-15 years with no lasting affects after they are removed.  Its a slow growing cancer and it's extremely rare for it to spread anywhere else.  I've done alot of reading on this.  The best and up-to-date articles I found online where at National Comprehensive Cancer Network.  They really summarize what a thousand other articles are saying and its current, straight forward and easy to understand.  Alot of what you will find online is from years ago.  As Nat mentioned, you can find the horror stories but if you think about it, its the procedures that are they talk about and its usually due to infection or something...everyone survived and are cancer free.  Keep to readings by the professionals to get the straight facts.

    You will be fine and Nat and I are here if you need to chat or have any questions. 

    Cheers for now, Joanne

  • natmcg
    natmcg Member Posts: 134 Member
    Lone111 said:

    Why?

    Any studies suggesting why this cancer develops? Does anyone in here know of any? Or are DFSP survivor more likely to develop any other types types of cancers? I guess any fat tissue tumor in the future should be removed immidiately if I develop any? 

     

    hello again

    Hi Lone, I had a play with you name because when I first joined this site I felt so alone I even started one of my posts with the heading " Aussie with DFSP and feel so alone." I think you may be right about your imagination getting thr better of you. Then again depending on how big/deep your biopsy was you may well be feeling sum pain in that area. I have never read of anyone feeling DFSP growing/ spreading. This is a very slow growing cancer. Which is lucky for me as I first noticed a discoloured patch of skin over 10yrs ago. I had an ultrasound about 5yrs ago as a small lump had grown,but I was told it was nothing. So it.grow and changed colour some more over the following 5 yrs and became quite sore at times especialy in the warmer weather. Finaly I had enough and during a skin check up wth a Dr who deals wth sun realated cancer(we have a lot of sun damaged skin cancers in Australia) I asked if he would remove my annoying lumps from under my left breast just over my rib. He said he would do a biopsy first and the rest is history. In regards to your other questions....I asked the specialist that did my surgery why did so many other drs over the yrs tell me it was nothing and he explained that because it is rare and can look different from one person to another it can go unchecked for mths/years. He also said that although they know DFSP starts in the dermis and tumors then grow upwards at the same time spreading spindle cell ( roots) in any direction they don't really know WHEN the mutation from normal and or fatty cells occurs. There is no indication that having DFSP makes us more likely to develop any other cancers. When I was diagnosed I said exactly the same as you that I would have any suspicious lump or bumps remover immediately. !! True to my word when I found a spot under my ear that I was sure had grow and must be DFSP I went to the specialist asap. He assured me it was a harmless mole and said it's good to ne.vigilant but please keep the paranoia under control. Also in almost all cases of reoccurrence it is in or around the scar. But in saying all that the rate of reoccurring DFSP is very low 1%.(I think) The most important thing is for the surgon to get ' clear margins " when removing the tumor and surrounding tissue. I had Mohs surgery which meant pathology tests where done before I was stitched up. When the Dr was confident that there were no cancer cells left he closed the wound and home I went. I won't say it was a picnic but 6mths on and.my scar is minimal and all I need to.do now is go back for my 6mthly checkup. I hope I have been of some help. I'm hoping Jo will check in soon as she is much more computer literate(an expert actually)and will put you on to some excellent DFSP info sites

    It sounds like your comfortable wth your Dr. And every thing will ho well.
    Keep smiling( easy for me to say I know)
    Nat.