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DFSP Friends.

natmcg
Posts: 119
Joined: Jun 2012

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.

natmcg
Posts: 119
Joined: Jun 2012

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.

Lone111
Posts: 32
Joined: Mar 2013

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
Posts: 119
Joined: Jun 2012

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
Posts: 32
Joined: Mar 2013

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
Posts: 55
Joined: Jan 2013

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

Tolga33
Posts: 2
Joined: Jan 2014

Hi Joanne,

 

I just learned yesterday that Ihave DFSP. I had a cyst looking thing on my lover back for 2 years, I actually had a birth defect there when I was born but no pain nothing than all of a sudden at age 37 that cyct looking thing poped out, it was perfectly round on a stalk it did grow very little in size in the past 2 yrs than last month when I was in the massage chair I got up all of a sudden and that lump stuck to a one of those round turning balls and ripped on the edges of the lump. So went to emergency cause bleeding badly they just put a protecting patch and told me to go to dermatology in the morning. At dermatology they schedule me for a removal of the lump within the next 2 days, result came yesterday that I have DFSP by the way hospital I went was Toronrto Western. Dr. told me nothing to be scared of but at the end it's the big "C" is always scarry he said, he will referred me to Princess Margeret.

It's been only a day, so far I had no call for appointment. My question is do you have any idea when they might respond and how long the procedure will take how fast was yours and do they do MOHS method in PM hospital...

 

Thank you in advance

 

Cheers!

Ontario48
Posts: 55
Joined: Jan 2013

Hello Tolga33,

Found your posts.  Sounds like a typical display of DFSP.  Many have some sort of scar, patch, bump, lump etc for a long time before they need to react to it.  For me, I had a spot or rather a smudge under my breast.  It just appeared one day.  Nothing of any worry.  I have more of an olive complextion and plus I was approaching 50 and you get stuff...LOL.  It became a bit firm and leathery (this is the plaque stage) so I asked my GP what it was and she said it nothing, don't worry about it.  It stayed like that for about 3 1/2 years and then suddenly it started to sprout, this is the protruberans stage.  It grew rapidly over two months to the point where it was uncomfortable to wear a bra.

My general surgeon removed it and he even said it's nothing...it's not cancer it's just a fat deposit.  That was November 1 2012.  Nov 12th pathology said DFSP and then on the 29th I went to Women's Colloge Moh's clinic to have the second surgery.  I thought I was getting Moh's but he did wide local excision.  No reason was given but have read if there is room to move WLE is best...Mohs better for tricky spots like face,neck, head.  I called WC a chop shop, in and out, bing bang and its over. 

That's when I reached out to Dr. Gladdy.  She is a sarcoma oncologist and genetic (translocation) researcher.  It's the way to go.  Princess Margaret has a good sarcoma unit (Dr. G's clinic is there) but Mount Sinia is the MECCA for sarcoma...better equipment etc. (had MRI there) Check them out and yes you can decide who you want to see.  Dr. G is a great lady, easy to talk to.

Keep me posted, do lots of reading.  Stick to medical reports/data.  National Comprehensive Cancer Network www.NCCN.org has lots of info and is used as a standard of treatment.  Everyone is different, your case is unique.  Write your questions and take to your appointment and make sure you get all the answers you need.

Cheers, Joanne

 

natmcg
Posts: 119
Joined: Jun 2012

Just wanted to let you know its very normal to be a bit scared when you are told you have a type of cancer. 

My DSFP story is  very similar to Jo's. Even the location is the same, also years of being told I had nothing to worry about.Hah!!I

Jo has given you some great info and I know from past conversations that she has great convidence in the places she mentioned. I on the other hand can only offer moral support as I live in Australia. So welcome to the  1 in a million club.  :) the club you didnt even know existed. Btw, I had mohs (after biopsy and small excision that didnt get clear margins). 2 yrs on and I have a well healed scar and no cancer.  Life is good. And yours will be too. Just takes time.

Good luck,Natalie. 

 

Tolga33
Posts: 2
Joined: Jan 2014

Sosorry Nat I totaly missed your post, I had my surgery today WLE doctor said he is hopeful that we clearthe marginsbut have to wait for Pathology report which is two weeks to come back for that report...

I am glad you are free from this trouble and enjoying your time in Australia

 

Take good care

Cheers!

Lone111
Posts: 32
Joined: Mar 2013

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? 

 

natmcg
Posts: 119
Joined: Jun 2012

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.

natmcg
Posts: 119
Joined: Jun 2012

Oh dear. Pushed send twice. Lol.

Ontario48
Posts: 55
Joined: Jan 2013

Hi Lone, Jo again...

All of what I have read points to a transition (re-organization) of a couple of chromasomes.  They detach and then hook up with the other one.  It then produces a mutation that is cancerous.  Nothing you can do about it, it just happens.  I have also read we  are no more suseptable to any other cancers (sarcoma, skin or otherwise).  Regrowth can occur if not all the cancer cells are removed.  Only 1% regrowth elsewhere, almost always in the same spot if it does.  Doesn't seem to be inherited either.  Any lump you should get should be looked at and I would expect that due to this diagnosis your caregivers will be more diligent.  You will have a "go to person" now that you have a surgeon that is familiar with your case and also you should hook up with a dermatologist.  You know your body best, you are your best advocate.

Hope that helps...Jo

Lone111
Posts: 32
Joined: Mar 2013

Thanks for your support. I've actually had an ok day today with only one breakdown. i told my husbands family today - very calm reactions. But ok I can see every one think "thank god it ist'n them"  The best reaction I have gotten so far was from an old friend who had breast cancer some years ago - so I expect she knows what best to say. She keept saing how sorry she was for me. i don't know why that was comforting but it was. Most others get silences or say good luck on tuesday... Anyways I don't why I was thinking of that it felt weird with thewhole fanily here today and talking about other things almost all of the time.

i'm sow scared for what will happen tuesday and i can't wait for the day to come fast enough. Did either of you have any help from a psycologist? I'm thinking if all goes well on tuesday it be like now you see it now you don't with the cancer. I will have had cancer for less than a week.... I don't know how to deal with that.

Lone111
Posts: 32
Joined: Mar 2013

Night has come and my family is sleeping and i'm worrying again. 

Do either of you remeber how long test results for the lump you had cut out were?  I read somewhere in here about a surgeon who accepted 1 cm clean cuts. I don' t remember if my oncologist said anything specific. But i rememberr my GP when he cut it out talking about the lump being deeper and larger that he expected. How deep can the sugeon go? the lump my GP cut out was no more than 1x2cm so it wasn't A big lump.  But maybe it was deep. Two days more and then wait for the results.

Ontario48
Posts: 55
Joined: Jan 2013

Hi Lone...my first biopsy took 1 week.  When I went for the WLE it took a month.  This was because the specimen was larger and there was more to test.  It does take time.  Don't worry about that, they need to do what they need to do.  Remember there are others who are waiting too.  I figure better they take the time and do it right.  My doc took 1cm all round.  I was concerned initially as I had read 2-5 depending on the size.  But most Moh's surgery ends up with an average of 1cm clear margines.  So because my doc was a Moh's surgeon and only took the 1cm I figured he was going by his experience and statistics.  Makes for a better recovery.  The wound isnt so large.  Mine was clear.  My tumor was deep rather than wide.  They took the fascia (connective tissue) to make sure.  Its rare for it to go past the fascia...it kind of acts as a sheild. 

Where yours is gives them room to work.  Even if it ends up being a big incision it's not like they are taking away anthing you would miss (if you think of face/head/neck) situation.  I know this is stressful.  The not knowing what you will end up with as far as a wound.  I stressed about that to.  It's amazing what the body can do to heal its self.  I just kept thinking, I will give what I need to give to get it out.  And now that I am on the other side I think, I survived, it could have been worse (like my friend with breast cancer).  Who would ever think you'd compare cancers and say wow, I was actually quite lucky.

I was telling Nat yesterday I experiences two weeks of major anxiety recently.  I didn't cry through the whole ordeal.  I broke down afterwards when the doc said it was all clear.  I cried for a day straight and think I had a delayed reaction.  Everyone handles this differently.   But you will get through it because you have to.  It's the quiet times that your mind races.  This will settle with time.

Stay strong...check in and we are here for you.  Best thoughts for you for your surgery.

Jo

Ontario48
Posts: 55
Joined: Jan 2013

Hi Lone,

Unfortunately most people dont' know what to say.  The ones you think that will step up and be there may not be and the ones you don't expect are 100% support to you.  Don't take offense.  Some of my friends didn't even call or visit.  The "C" word freaks everyone out.  It's so prevelant these days everyone is like you say, whew, thanks goodness it's not me.  That shows you how much people actually think about it.  And yes it's very bizzare...you know you have cancer for such a short time and then they remove it and you don't have it any longer.  But remember you've had it for some time.  It just wasn't diagnosed until now.  Focus on the fact that it can be removed and life will go on.  It WILL take some time to adjust and dont let anyone blow it off.  It's a lot to digest, take your time with it and you will find your own way to work through it.  AND we are here to help you along the way!!

For me, I re-read everything I learned.  I learned even more and it also helped me put it in perspective.  I have a good friend who  was diagnosed with breast cancer at the same time I found out I had DFSP.  I am well on my way to recovery but she has a year of chemo to do.  I felt very bad, didn't know how I should feel about what I was going through.  You make comparisons.  The good thing is I can talk and she can talk openly about cancer.  This is very helpful for both of us.  Your friend has been there. She gets it.  Know one can truely understand until they are standing in your shoes.

I didn't see anyone but I did take some medication for the anxiety.  Unfortunately I had side affects and stopped.  With me once I had the surgery a big weight lifted.  I was able to cope better.

Tuesday is a big day.  Make a list of questions, have someone with you for support...you will get through it.

Jo

natmcg
Posts: 119
Joined: Jun 2012

I'd just like to say I agree wth every thing Jo has said. And add a little about my experience. I also have a good friend who has survived breast cancer, she had a double mastectomy endured cemo for many mths and finaly had breast reconstruction...she was and still is very supportive,and often asks am I keeping an eye on my scar for any changes. She also has a great sense of humour and when I was stressing about not knowing how much will need to be removed she said, " well at least you get to keep your nipples." My family were supportive in there own way but they didn't really want to talk about the subject. So finding this forum was great for me I read every ( and I mean EVERY) DFSP story or comment that had been posted hear in the last five yrs. And even had a few replies to my early posts alll of which when I read now sound a bit desperate. But I like you now, needed to express my fears and connect with people that understood. Jo is right Lone,like hers and mine your DFSP is located where there is plenty of stretch on the flesh and no one need ever see your scar. As you know I had Mohs surgery, which meant sitting around with pading on an open wound the size of a.mobile phone,for over three hrs while they did the pathology. But at least my surgon told me.he was 99.9% sure he got it all before I went home. And then at my checkup three wks later he confirmed that clear margins were achieved. We knew from the biopsy that it had gone down to the fat tissue so he removed everything down to the muscle. This did make the area very tender for the first few mths but it's ok now. My Dr actually offered me a valium before surgery because although I thought looked calm but my high blood pressure told them different, he needed me to stay awake and I was glad I said yes to the valium. I was always awear of what was going on but thanks to the valium I stayed relaxed. Also don't be afraid to ask for some strong pain killers. I found they realy helped and I was never too uncomfortable. I'll check on again soon.
Take care
Nat.p>

Lone111
Posts: 32
Joined: Mar 2013

Hi i pressed reply on the latest post from Nat but this time my post went to bottom of the thread - maybe it is were it belongs, but this site sure works in wonderous ways.

gayled627
Posts: 6
Joined: Jul 2011

I haven't been on this site for a couple years, but I recall how hard it was to communicate in any orderly fashion.  I've been part of a group on Facebook called "dfsp - dermatofibrosarcoma protuberans".  There are over 650 members from all over the world.  It's a great place for support, information or just an ear to listen.  Please feel free to put in a request to join this group.  It a much more active place than is discussion board.  It saved me while I went thru all 3 of my surgeries.  I am what we call a "headcase".   My tumor was on  my forehead and I'm only a bit over one year post-op.  dfsp is found in 1-3 per million people so this FB group is amazing to have so many in our situations.  WELCOME ONE AND ALL!!!   Posted: 06.29.14

gayled627
Posts: 6
Joined: Jul 2011

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
Posts: 119
Joined: Jun 2012

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
Posts: 119
Joined: Jun 2012

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
Posts: 55
Joined: Jan 2013

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
Posts: 55
Joined: Jan 2013

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

Ontario48
Posts: 55
Joined: Jan 2013

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

Rangegirl
Posts: 3
Joined: May 2012

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
Posts: 55
Joined: Jan 2013

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
Posts: 119
Joined: Jun 2012

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
Posts: 119
Joined: Jun 2012

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
Posts: 25
Joined: Feb 2013

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

natmcg
Posts: 119
Joined: Jun 2012

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
Posts: 25
Joined: Feb 2013

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
Posts: 32
Joined: Mar 2013

Thank you for being here and checking in every day. I have been feeling strong today - like a survivor  :-) and i have had the time to read all the older posts (the first day i signed i in i had not seen that one of the dfsp threads were 5 pages long) but it made me realise some things - first my case seems very small and i propably shouldn't worry (i probably will worry some anyways) second how lucky i am that you both checked in here and has been holding my hand these past couple of days when i really felt so scared and so alone. I cry while reading your posts but i end up feeling stronger And comforted.

nat how is your brother doing?

and i found the questions i need to ask my oncologist tuesday. I need to know which size clear margins he'll accept. I think I will try to persuede him to go with larger clear margins. I had a Caesarean with my first child only an inch from he'll be cutting so it not a worry.

I guess if the chest x-ray come back clear, i'll survive.

natmcg
Posts: 119
Joined: Jun 2012

Hello Lone,
Glad your feeling a bit stronger and more informed as your surgery day gets closer.
This forum is great but every now and then things get mixed up. When they did an upgrade a while ago I lost a lot of stuff like friends list,and emails. But you get used to navigateing around in here after a while. Now that you have read some of the other DFSP post you are able to look at your situation in a new perspective. I know I did.
Thanks for asking about my brother,he is.doing as well ad.can be expected. Radiation not only kills the cancer but because it was.conentated around his throat he now has very little taste,no saliva(dry mouth) which makes it very hard to swallow and the list of other side effects keeps going. But he had a very caring wife and grown up children and he has set a goal to be well/strong by Oct.as that is when jis youngest daughter is planing to marry.
He and I were supposed to go back to Ukraine earlier this yr and meet some family from my fathers side. But I was diagnosed with my cancer and then him. Sometimes I feel terrible he has had to endure so much....I had one operation and my cancer is gone. Doesn't seem fair.

You mentioed a chest x ray. Do has your Dr already arranged that to happen.
My specialist hasnt mentioned any test to me at all. But I will be asking him of I should have an MRI(I can't have x rays any more due to a benign brain tumor). Jo hasn't had any other test done either as far as I know. It still seems strange to that checking the chest/.lungs isn't a routine thing for DFSP patients to have done.
I'll sign off now as its getting. late you will be in my thoughts and prayers today.
Natalie.

Ontario48
Posts: 55
Joined: Jan 2013

Hey Nat, hope you are finding some back relief to get some sleep in.

It's pouring here, half the snow is gone...soooo happy!!  I have decided that once I get hooked up with the dermo guy I will insist on a chest scan.  The more I read about this part the more I think it's the opinion of the doc.  And when you consider that there really aren't too many experts out there on the subject, what would it hurt to just do it for piece of mind.  Even though most are done with the FS variant or after recurrance, there is still a small percentage that have positive results.  The decision is based on a thorough history which my surgeon didn't do as I only saw him for 8 min, LOL (his interns did the great work). 

We are a small percentage anyway and we got it.  Sarcoma is very rare, even rarer in adults and DFSP even still rarer than that.  SO even though they say a 1-5% chance of spread elsewhere...we made it into the 1% of all sarcomas, and then the 1% of those that are DFSP.  For me, I can do the wait, if reoccurence is in the cards it is what it is...can't control that.  If a chest screen gives me comfort, to rule out that possibility, then it should be done.  If the dermo wont' to it, I am confident my GP will.  All in all, even those who have a "spread" the possibility of treatment and successful removal is still very high.  It's a very, very small pool that do not survive this type of cancer and most have left it way too long (in obscure parts of the world...I am sure you've seen the pictures) or there were other health complications as well.

Anyhow, will keep you posted on that bit.  They boy is on the hills of Jay Peak in Vermont and mommy is missing him terribly.  Happy March break to those who get one this week.

Cheers, Jo

sayanti
Posts: 5
Joined: Aug 2014

Hi Ontario,

I asked my GP about the chest scans. What he mentioned was that CT scans have radiation as well and its like taking around 200 Xrays. So unless they really suspect the spread of DFSP, they do not suggest to do any of those scans. What he mentioned was " we give people cancer by doing these scans"

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone,

I just checked the time and your day is almost over.  Our happy thoughts will be with you for a successful surgery tomorrow. Be restful for a few days and take your time to heal.  Check in when you can and let us know how it went.  We are happy to wait for results with you :)

Jo

Lone111
Posts: 32
Joined: Mar 2013

Yes definitely get you're chest checked out to make sure it hasn't spread there.

I'm out of surgery and feel like the worst it over. It was actually a very nice a had while they operated:-) my chest x-ray was fine and the surgeon cut a large piece out of my hip/groin area all the way down to the bone. I have a lot of painkillers for the next couple of days.

1-2 weeks he get the pathology - he told me that he would accept 8 mm clear margins which i think sound good.

Nat: I'm so glad to hear that your brother is still alive and hope that the bad side effects of the treadment will get better. I totally understand how you feel a bit bad about what you're brother has been trough compared to us getting of with one surgery. My brother-in-law is dying from cancer in the connective tissue. Like me he had a fat tissue lump removed - his came back with a far worse cancer. And they have been so supportive of me. Yes I also feel bad about that.

Jo and Nat if you are in Europa I'll fly in and buy you dinner :-)

natmcg
Posts: 119
Joined: Jun 2012

Lone your on the road to recovery :) And you sound great no slurring of words from the painkillets lol. Did your biopsy show that the cancer had gone past tbe fat and muscle layers or was the Dr.just being very thorough? Rest as much as you can. I hope you have someone to help with the children. I realized when I was re- reading some of theposts that I didn't answer your question about my boys. The eldest is married to a school teacher and they have the baby girl, they live only 15mins away and we see them a at least once a wk if not more. The other two still live at home and we recently had my middle sons American girlfriend come to live with him/us for 12mths. Luckily they have their own bathroom,kitchen ,bedroom and living space down stairs but they eat with us most nights. I sent an email to csn asking if there is any way they can group all the DFSP threads under one heading. That way all the information written by all the different people would be easier to access. They haven't got back to me yet. . Oh and I might just hold you to that dinner offer. My husband and I are planning to visit Europe again sometime nxt yr. Just waiting to see how long it will take for my brother to be well enough to travel as the original plan was for us to meet up in Ukraine for a while then go separate ways again. Im sorry about your brother in law. I have never heard of connective tissues cancer, but it sounds painful. Take care Lone. Hey Jo. Do ya want me to swing past and pick you up.....Lones invited is to dinner!! We can compare scars.lol.

You gotta laugh girls our crying days are done. See ya Nat.

Ontario48
Posts: 55
Joined: Jan 2013

Wow, Lone look at you keeping us posted the minute you get out of surgery.  You truely are a trooper.  Here's to a good pathology report!!  As Nat says just chill and relax, let the family help you.  YOu want to take the time to heal.  We pray for clear margins.  And of course Nat, swing by and grab me and then we head to Lone's for dinner. We may have to cook it though, she has a sore hip.

One thing we didn't mention Lone, Nat and I, will all our similarities, have the same ethnic background.  My dad's family came from the Ukraine.  Can you believe it.  I have never jumped on any other cancer site and right away I meet Nat, she's our DFSP site hostess...she had hers in the same spot as me.  Havent' read about anyone else having it where we had it so it was nice to chat with Nat.  Glad you connected with us too.

Happy thoughts and will chat soon...Jo

 

Lone111
Posts: 32
Joined: Mar 2013

Nat: I get an error when trying to view your friend request - I'll try to write to the csn support.

That is a great coinsidence that your families both come from Ukraine - how far back did your families move? My family is from Denmark.

My kids have been spending the past few days at my in-laws and they will be back to night - I'm so looking forward to seing them again :-)

In regards to your question Nat, as I remember the tumor I had removed at my GP was only about 0,5 x 1,5 cm but as my surgeon said he could not know the position it had inside my hip, so I think he was just being thorough when cutting all the way to the bone. I think he cut out a piece as large as 4x5x5 cm.

I have been trying to find anything about DFSP being most likely to spread to the lungs but no luck, but my surgeon was sure that it had to be checked out.  

Ontario48
Posts: 55
Joined: Jan 2013

Good morning (here) Lone.  Glad to hear you are doing so well.  Enjoy the kiddies and rest today.  Not sure if who sent me a friend request but I too got a system error.

Have a great day, Joanne

Ontario48
Posts: 55
Joined: Jan 2013

I seem to be missing some new posts, appologies if I've not responded to something...send an email if you like.

JO

Lone111
Posts: 32
Joined: Mar 2013

Hi I hope you can help with some question i have been thinking about. Can the immune system kill cancer cells or are cancer cells to much like you r own cells or is it because they multiply to fast for the immune system to be able to defeat them? I'm offcourse wandering about that because i will never know if all the cancer cells are removed.

Another question. I've read on eg wiki that dfsp metastasize in 2-5% cases but i have not read anything about anyone in here or on other sites where it has happened or where it metastasizes to. I guess if my patology comes back with clear margins I have to believe that it has not spread anywhere else?

 

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone...I put a few  posts on the other thread Dermofibrosarcoma Protuberans (DFSP), I had a hard time finding some of the threads there so I first searched it in "content" and then linked from there and was able to see all the pages...go to page five (Nat our DFSP hostess helped me with that ").

I haven't read much about the immune system and cancer.  I do know in general that a strong immune system helps in the fight against cancer and many other diseases.  There was a recent study a friend found that scientists had found receptors that pin point how cancer cells speak to normal cells and infiltrate them.  The idea is to come up with something that changes the messaging to promote healthy cells to remain healthy.  Pretty cool.

In regards to mets, I've only found a couple reports of those who had mets.  The most common spot is in the lungs, this is true for most sarcomas.  Some doctors do a chest CT or MRI to screen for this.  Some to do not.  Even though the numbers are very low most of those who have mets to the lungs have the FS-DFSP variant, a higher grade malignancy.  Standard DFSP mets to the lungs is even rarer.  Looks like a lot of patients in the USA have an MRI or CT as standard routine.  My doc didn't do it (skin cancer specialist-dermatologist).  He said only for recurrence or FS variant.  I will be seeing a sarcoma specialist for my follow up and management (I rant about that on the other thread).  I will discuss this with her and get her opinion. For piece of mind I would like a chest screen as part of my baseline moving forward.  Adult soft tissue sarcomas represent 1% of all adult cancers.  DFSP is a smaller precentage within that and of those 2-5 percent get mets to the lungs.  So if they don't test them how do they know.  The cases I read they got it later in life (5 - 15 years later).  No regrowths just distal cancer in the lungs, confirmed to be DFSP.  So for me it would be nice to know if I get a clear chest screen so if something should happen down the road we have a benchmark.

Push for it, cry if you have to LOL!

Take care...Jo

Lone111
Posts: 32
Joined: Mar 2013

Hi Jo thanks for your answer and thanks for clearing some things for me. 

My surgeon told that giving me an MRI would present a greater danger to my health than the DFSP would have for spreading. He did have x-rays of my lungs and they came back clear. In Denmark the checkup program for all cancers is 5 years, after that you're on your own. Maybe I should demand a new x-rays of the lungs in 5 years time, just to make sure.

I trying to keep busy reading about how to strengthen my immune system and what to in general to minimize the risk of ever getting cancer again. Don't know what else to do.

Btw it was me who send you a freind request nd I got one from Nat that i too get errors reviewing.

 

take care too.

lone

Ontario48
Posts: 55
Joined: Jan 2013

Hi Lone, this system is a bit quirky for sure.

Glad you had the chest cleared.  I am not sure, from what I've been reading about his type of cancer, if your immune system would have made a difference.  I know some cancers they can show a direct correalation.  Soft tissue sarcomas come from "translocation" of genes and this occurs after birth so not hereditery.  Obvisoulsy the healthier you are the better your immune system is.  I know there is a lot of focus on keeping the immune system healthy while you are going through treatments (radiation/chemo etc) and there are foods/supplements that you can take that contribute to that.

Most people ask the question, why me, what could I have done to avoid this, how did I get it.  I don't think there is a clear cut answer for this.  Obvisously if you live a certain kind of life style (drugs/alcohol/chemical exposure etc) that would contribute to getting some cancers.  I read somewhere that most people who have cancer fear it's recurrence for about a year and then it starts to fade and it's not prevalent in their lives any longer.

That old saying...time heals everything!  Or we get old and forget :) , lol!!  My saying is..."it is what it is".  Life throws us meany things.  It doesn't matter how much I think I know about DFSP, it doesn't matter how much the experts say, it doesn't matter if I do all the right thinks, if it comes back...it comes back and I deal with it.  No matter what, we keep on going.  It's our human spirit. So enjoy your life to the fullest.  I had a friend die in our early 20's.  She was one of the healthiest people I knew.  It was cancer, it was sudden and she went quickly.  At that point I made a decision that I would always tell those around me how much I loved them.  A quick "love ya" at the end of phone call, love you and a kiss as they left from a visit, end a letter or email with "XO Love you". 

You just never know what life with bring you.  But you deal with it and it makes your stronger.

Hope the hip is healing well...Jo

 

natmcg
Posts: 119
Joined: Jun 2012

Hi lone, Isn't our.friend Joanne doing a.great job wth all the.new info she is posting. Firstly lone I don't understand how you Dr can say MRI can increase cancer recurrence and no t xrays. Before all my DFSP issues (3yrs ago). I found out I have a brain tumor, its inoperable due to its location but luckily it's benign. But the neurosurgeon told me never to have xrays of my head only MRIs as xrays mess with your cells and increase the risk of cancer( that's why the radiology staff run and hide before they push the button). A few xrays over.many yrs obviously don't seem to make any difference but if there was need in the future for repeated testing any where on.my body I will be requesting MRIs. But in saying that let's not borrow trouble from the future. As Jo says, " it is what it is" and we can only deal with what is in the here and now. Sure we can try and keep are selves as healthy as possible, but sometimes we just don't have control over what happens. My Dr also said what Jo wrote that there is no predicting DFSP its not hereditary and there was mo way I could have been tested or prevented its occurence as they now can do with so many other conditions not just cancers. In regards to the immune issue, I personally like to eat lots of fresh green and red fruits and veggies as they are the highest in antioxidants and have been proven to reduse the chance of certain cancers. And I take vitamin supplements to cover the times Im to busy for th the real food. So you must be almost ready to have your stitches out. That should make things feel better, well at least until the itching starts lol. But you're through it now please don't dwell on the "what ifs" .. We have all done our home work on this subject . But except for watching our scars(for changes) having our regular checkups( Jo I promise I make that appointment today) there really isn't anything we can do. Take care ladies Ps. Get those hugs and.kisses while you can specialy from your children, unfortunately my boys all did the "mum stop it Im not a.little boy anymore" but now I have a cuddly little granddaughter so that makes up for it. :-)

Ontario48
Posts: 55
Joined: Jan 2013

Grab them and hug them and kiss them.  They love it!!!  They are just being coolieo's.  Mine is in the prime of I'm too cool for mom.  But tonight, when hes' tired, his leg hurts because he bailed on a jump and he's just done!, I grab him and squeeze and he totally gives in for just that one moment.  Mom's know what that feels like...you know you rock in there world.  No words exchanged.  He's too cool.

Mom's rule the world!!!

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