DFSP Friends.

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.

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

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.

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 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

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 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 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 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.

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 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

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