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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.

Lone111
Posts: 32
Joined: Mar 2013

Hi Carole - great the surgery went well and you did not have to have skin graft. 

Jo has earlier wrote that DFSP rarely spreads throught lymph nodes. Lymph modes and lymph glans are according to wiki the same thing and appently my doctor/oncologist or surgeon don't think DFSP can spread through them at all. Maybe it is one of these cases where there is no consensus world wide.

I wish I was going to Florida this summer - I would love to come and stay at your B&B :-)

best wishes

Lone

caroleinnkeeper
Posts: 8
Joined: Apr 2013

Doing better every day and this is the first morning I wasn't dying to take a pain pill. That is good because B&B guests checking in later, 4pm or after. I have my post-op appointment next week so we'll see what the doctor says. I think I am doing great. The 7" cut is in an difficult area though, high up on the outside of my thigh. I can lay down and stand fine, it is sitting that is tricky as it pulls the area. This too shall pass!Wink

natmcg
Posts: 119
Joined: Jun 2012

Hi ladies,
Sounds like every one is coming along nicely. Once your stitches are out carol you will probably feel more comfortable. Then the healing/itching starts.lol Jo and I both had our DFSP removed from under our left breast. So our problem was trying put to ware bras. Even now six months after surgery I find myself folding one of my husbands hankies(long ways) and placing it between my scar and the bra for a bit more comfort. Funny thing is, thats what I use to do for years to try and ease the iritation my bra caused on and around the tumor.

I'm going on a crusie for about 2wks then visiting some friends interstate. So may not be checking in or posting for a while. Ihave been in contact recently with a lady in Italy,her 7yr old son had DFSP and she is waiting to find out if he has had a reoccurance. I found her1st post when I was browsing through old threads on here named DFSP. I explained to her that this thread is where more recently diagnosed people are and she said she would like to join in. She has some serious conserns becasue the Drs.dont have experience with DFSP andif her sons results are positive for DFSP they have said they will need to remove a large part of his foot.
I did ask if she could find a STS specialist (Soft tissue sarcoma) in Italy or at least get a second opinion but as yet she hasnt emailed me back.I know you will all make her welcome if she does post here.

Stay safe
Natalie

PS lone I hope your other appointment went well and you are feeling more relaxed.:-)

Ontario48
Posts: 55
Joined: Jan 2013

Hello Ladies,

Back from a very relaxing week in the hot sun of Cuba.   Nothing to think about or do for a week.  It was lovely and the weather was perfect.  Just catching up on your chats this morning with my coffee (which I had to make myself :).  Nice incision Carole, 7" and no graft.  Glad you didn't have to have that, makes recovering longer and more painful.  Glad all is going well.  Depending on how deep your doc went will determine your heal time.  They took my fascia so my doc says about a year for full heal.  As Nat says, after the stitches come out the incision will feel way better and time helps the skin stretch.  I was hunched over for about a week as it felt like my boob was stuck to my bellybutton, LOL.  I also put polysporin on it until the stitches came out, helped with it drying up and getting tighter.

Lone, I too am confused as to why your doc says this doesn't go to the lymph nodes. He is right that it spreads via the bloodvessels which is the most common way if it does but it can go via the LN.  I was also a bit confused, you had the DFSP in two sites??  Are your nodes still swollen.  If they continue to be I wouldn't wait until July, you may need a second opinion or go back and show your oncologist some articles on LN spread and insist on a biopsy.  You'd hate to think back and say "crap" I should have done something back then.  Multiple sites is also extremely rare. 

Jessie was telling me that her doc said "its not a real cancer".  What the hell does that mean?!.  Just goes to show you how rare this is and due to that the docs don't put it high on the priority list.  I know I keep saying this but find an STS (Soft Tissue Sarcoma) specialist.  They understand this type of cancer.  I think skin docs tend to treat it the same way as a carcinoma which is totally different.

Other than feeling totally relaxed from my holidays I have nothing to report.  Seeing the specialist in a week.  That will mark just over 5 months since my surgery. Like Nat I hate wearing a bra as the incision site is tender, can't wait till that goes away.

It's slowly warming up here in Ontario.  Going to start cleaning up the gardens today...I love that, very theraputic.

Cheers for now, Jo

PS Nat, if you havent' left yet have a BLAST on your holidays!!

natmcg
Posts: 119
Joined: Jun 2012

What a stupid thing for a so called Dr.to say. Obviously hasnt read the stories here(and elsewhere on the net) about people having to have whole parts of their body reconstructed because the DFSP had spread so much..and radiation...and cancer drugs to try and slow it down..
That just shows how ignorant some Dr.s are.
Thank god Jess was smart enough go elsewhere.

Now I have that off my chest. Hello.:-)

Yes, Im still here, but not for long, we sail out of Sydney harbour tomorrow evening(Sunday).

Take care everyone
Nat. B-)

www987
Posts: 5
Joined: Apr 2013

Hi everyone.  I wish I'd known about the Mayo Clinic and Dr. Attia before we started treatment. :(  I tried to research DFSP specialists but his name never came up at the time.

I'm the husband of a DFSP patient.  She's had it on her upper arm and shoulder for at least a decade, which I guess is why none of her doctors seemed very concerned by it.  It only started growing noticeably in the last couple of years, probably due to pregnancy.  Anyway, after finally getting a biopsy done I took her recently to a world-renowned cancer hospital and have had somehwat of a mixed experience.  The doctors we've seen don't sound especially knowledgeable about DFSP and we've been given some contradictory information.  The doctors seemed more concerned with cosmetics than getting rid of the actual cancer (as someone above put it, they seem not to consider it a 'real cancer') and so the surgery was, I felt very conservative.  This resulted (as I expected) in positive margins all the way around.  While they're willing to go back and do it differently this time (cutting away tissue and assessing margins in real time until negative margins are achieved), they seem to prefer simply treating it with radiation and observing it without any further surgery.  My wife also prefers this route because she's terrified of having to do a flap.  It is of course, her decision and not mine, but I think she's entitled to know the risks of this approach.  My feeling is that it's easier to prevent a recurrence now (through more definitive surgery plus radiation) then to have to deal with one later and also deal with the risk of metastasis, which becomes more likely the more you cut through the tumour.  Although radiation has had encouraging results, the data set is very small and so I'm just nervous about relying solely on radiation when we know the margins are entirely positive.

Has anyone gone through a similar situation (i.e. relying only on radiation to deal with positive margins)?  I feel like we're at a crossroads and I'm terrified of making the wrong decisison.

Ontario48
Posts: 55
Joined: Jan 2013

Yes hard decision to make and your wife is leading it with fear which doesn't always allows us to think clearly.  Everything I have read is that RAD is used if they cannot produce clear margins with surgery.  Best results in stats I have read say surgery is the best approach (total removal) of this cancer.  They radiate if they are not able to do surgery due to inable to reconstruct or it would leave a major defect or if its too deep (or in the bones).  Radiation is tricky as some do more harm.  I would read as much as possible on that as you can and ask the doc about it.  There are lots of articles if you dig online that speak to radiation and also patient stories. 

The National Comprehensive Cancer Network has some good recent articles on DFSP.  I have also been preaching see a STS (Soft Tissue Sarcoma) Specialist.  Sarcoma is different from carcinomas.  You want a doc with that expertise.  Even the pathology findings are challenging to someone not versed in STS.  Adult sarcomas represent 1% of all adult cancers and DFSP is even rarer within this group.  I would also insist on an MRI as this cancer shows up on those.  Alot of docs won't do them which, the more I read, I cannot believe wouldn't be standard practice to map where it is pre-surgery.  The second procedure you describe is Moh's micro surgery.  It's contraversal which approach is better, Moh's or WLE (wide local excision).  The key as you know are clear margins.  Another consideration is the measurement to clear margins.  Some docs leave it too close which results in a higher rate of recurrence.

It's not a fast spreading cancer so maybe if you give it a bit of time your wife can get used to the idea of another surgery.  Radiation produces side affects as well so I'd read up on that too.  I didn't read too much on the subject as that was not a part of my treatment.  Whatever you decide I wish the best for your wife and your family.

Cheers, Jo

Lone111
Posts: 32
Joined: Mar 2013

Hi - sorry for the misundestanding - no I only had DFSP in the hip. When the surgeon called me with the pathology report i just misunderstood him and thought no DFSP was found in the flesh cut out of my hip  and therefore I started to worry that maybe the biopsy had been switched with the lump I had removed at the same time in my neck/throad. But DFSP was found in the flesh removed from my hip but with clear margins. My lymph nodes in neck and cheek are back to normal size.

However I do not understand why my surgeon said that DFSP do not spread through lymph node when that is not the case.

Glad to hear you've had a great holiday in Cuba Jo and I hope Nat has a great  crusie :-) - End of May and I'm of to Cypress for some sun and warmt.

www987: I've google DFSP and radiation and it seem that radiation is the course of treatment when surgery is not possible for what ever reason, but as Jo writes there are other side affects to radiation and surgery, if possible, is the recommended way to go. There is also a protein inhibitor called imatinib or Gleevec wish is used for treating DFSP - perhabs you should read up and that too before your next talk with the docs? I wish you and your wife the best and hope you can find the info to make the best decision for you both.

Best wishes

Lone 

www987
Posts: 5
Joined: Apr 2013

Thank you both for your kind replies.

She is actually being treated at a very famous sarcoma center in the US, which is why I was puzzled by their reluctance to do even a wide excision.  The second surgery (if it happens) would not be Mohs, although I agree that it sounds awfully similar.  The surgeon has very strong feelings against Mohs.  When I asked him about it in the first appointment he said it was "stupid" because "you're cutting through the tumour", but isn't that what he's done now already?

I could tell that the surgeon was surprised after the surgery by the extent of the infiltration.  He went deep into the muscle and still got positive margins.  Also the top of her surgical scar is only a few centimeters away from her clavicle and so there isn't a lot of tissue to work with there.  Perhaps that's why the doctors think they should radiate first before doing another surgery.    I'm now concerned that it's infiltrated the bone.  What happens when DFSP gets into the bone?  I haven't been able to find any info online about that.

Is a skin graft/flap always necessary for a wide excision on her upper arm/shoulder?  She says she can live with a divot or depression there as long as they can close up the wound.  I also think that it would be easier to detect a recurrence that way.

Lone111
Posts: 32
Joined: Mar 2013

Hi www987 - i don't know anything about what happens when/if dfsp grows into the bones. Perhabs Jo has read anything? 

And no a wide exsision does not always include a skin graft if they can possibly pull the skin together I'm sure the doctors would prefer that - but is an area with not a lot of extra skin and therefore they might have to use skin graft is they have to remove more of the top skin

best wishes

lone

Ontario48
Posts: 55
Joined: Jan 2013

Hey there,  I haven't read a lot about spread to the bone for DFSP.  Again the literature says "extremely rare".  I know there is a type of sarcoma that goes to the bone.  You may want to read up on that as well as it's in the same family. 

Have they ever done a MRI, this will show up on them and will indicate where it is.

Below link for article DFSP spread to the bone.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792083/

Try the National Comprehensive Cancer Network as well and search there NCCN. 

Good Luck!!

 

Ontario48
Posts: 55
Joined: Jan 2013

Hey there,  I haven't read a lot about spread to the bone for DFSP.  Again the literature says "extremely rare".  I know there is a type of sarcoma that goes to the bone.  You may want to read up on that as well as it's in the same family. 

Have they ever done a MRI, this will show up on them and will indicate where it is.

Below link for article DFSP spread to the bone.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2792083/

Try the National Comprehensive Cancer Network as well and search there NCCN. 

Good Luck!!

 

caroleinnkeeper
Posts: 8
Joined: Apr 2013

Just had a great post op appointment. She was thrilled at how good I was doing and thought the wound was healing great. She prefers to not take off the butterfly stitches, but have me get them wet now. Then they will fall off as they are ready to. She got great clear margins all around, and nothing new showed in all that they took out. My swelling has gone down a lot. I will always have an indentation on my leg from this 7" long gash, but that's OK.

I told her about this forum and she is thrilled it is here for us. She was amazed that a doctor would say this isn't a real cancer! She stressed again how there is a very high reoccurance rate, but to have regular dermatologist appointments should keep on top of it all. I am still quite sore, but of course healing hurts! It has only been a week and a day.

Ontario48
Posts: 55
Joined: Jan 2013

Hi Carole, good to hear all is well.  The surgery seems to be the worst part of this cancer.  We all have dents so don't feel bad LOL!!  Better to have a divot then a cancer right!?  You could make  up a adventorous story like you got attached by a shark and you fought him off, or a school of paraonas nipped you and you ate them all for dinner.

You know your body and when it changes you will take steps to figure it out.  You have a team now so whenever you see a change they will support you.

All the best...Jo

 

 

caroleinnkeeper
Posts: 8
Joined: Apr 2013

I like the shark story, and I do live in Florida...lol! More than 1/2 the butterfly stitches are off now, so things should start stretching and rearranging so it won't look so bad. It is high up on my thigh anyway! TX again!Smile This is certainly quite a journey that none of us imagined going on.

Lauraamc
Posts: 1
Joined: May 2013

Hi there, any recommendations for a good doctor in toronto to treat dfsp?  my husband is newly diagnosed and having trouble finding good care.  Thanks for any help you can provide!

Lone111
Posts: 32
Joined: Mar 2013

Hi laura - Jo who is also helpfull in here has been treated in Toronto- I'm sure she will check in soon to give recommandations.

great to hear Carole. I'm so glad you are recovering quickly when being self imployed it isn't easy to be unable to work. 

 

/lone

Ontario48
Posts: 55
Joined: Jan 2013

Hello Lone,

Laura reached out yesterday via email to get some info on Dr. Gladdy.  I saw Gladdy today and am very pleased with her.  She is a great lady, easy to talk to and referred to the Mount Sinai Sacroma Unit in Toronto as the "mecca" for sarcoma.  Wow!!  She has lots of experience with DFSP, usually with recurrence or second surgeries.  She agreed that a sarcoma doc is the way to go as they are so versed in this type of cancer.  She reviewed my pathology and is happy with outcomes to date.  She is sending me for an MRI to ensure all of its gone and then after that if all is clear she will manage me with yearly physicals.  I feel I am in good hands.

Hope all is well with you!!

Jo

natmcg
Posts: 119
Joined: Jun 2012

Wow, what a holiday,! 3 wks off from cooking and cleaning.:-) :-) Im not one for lying in the sun but the deck chairs in a quiet corner of the ship were great for relaxing with a drink and a book. Your turn next Lone, are you taking the kids? My son has been to Cypris, said it was great,lovely people always happy. Carole sounds like your truly on your way to a full recovery. My husband is planing a trip for us to the USA later this year. Watch out I might come a knock'n. Lol. Did some one ask about dfsp spreading to bones.? Well yes it does. I read a post by a young lady when i first joined csn. It was an old post and from memory it wasnt under a dfsp thread. I was poking around reading stuff all over the place( as you do when first told you have a very rare skin cancer). Anyways her dfsp was on her chest and had past through all the soft tissue layers,muscle and into a rib. The rib was remover and I suppose that gave her the all clear. Iv read so many stories from dfsp survivors over the last 7mths its hard to remember the details. But i also remember reading that if a bone that is really needed has to be removed Dr.s can take bones from other areas of our body and use them to keep things structually sound. So Joanne, whats going on in Canada. Are you getting discount for evey new customer you refer to Dr.Gladdy lol.....;-) Seriously its great you did some digging and found her and now not only you but others can benefit from her experience with dfsp. Talk again soon Nat.btw Jo my dermstoligist/surgon said all his dfsp patients have been refered for second surgery (mohs) and recurence and thats why he  is continuing to try and make other dermos and GPs more aware of dfsp. He is strongly commited to educating them on early detection of dfsp.

 

Ontario48
Posts: 55
Joined: Jan 2013

LOL, hey Nat...glad you had a great time on holidays, well deserved!!!

I see Dr. G (as we all call her now ; )  on June 11th for the results of my MRI (which I actually don't have a date for yet but they did leave a message today) and I was going to say "cut me a percentage" on the DFSP patients.  I was saying to Laura, I am sure she is wondering why she is getting a flood of them.  I just find it so bizzard (happily) that there are a few of us who connected on here from the Toronto area.  Jonny, her husband, goes in for surgery with Dr G this Friday.  We wish him the best and know he will be well taken care of.

Jo

www987
Posts: 5
Joined: Apr 2013

Thanks, natmcg.  I wonder how they figured out that it was in her rib.  My wife's doctor says he doesn't think it's inflitrated the bone, but if we want to be honest about it, he has no way of knowing this.

Ontario48
Posts: 55
Joined: Jan 2013

I have read much on the spread.  If it does decide to travel it goes via lymph nodes or blood vessels, hence can park in the bones.  PDGF, Platelet Drivin Growth Factor.  Soft tissue sarcoma is connective tissue, bones, fat and muscle.  All cancer mutations have a growth factor (this contributes to the determination of metastasis-agressiveness). 

Do remember though that DFSP is considered low grade metastic - 4-6% of yearly cases spread.  Our numbers our small from the get go (1% of all adult cancers)...this is within that group.  Carcinomas are more the "norm" for cancers (and where the $$ is). Do be diligent in getting all testing completed.  I started with General Surgeon (who was excellent as I had a diagnosis immediately...thank the big guy!)  and a Skin Cancer specialist but have now connected with a Soft Tissue Sarcoma specialist.  It is the way to go.  Sarcoma is different from all cancers.  It's rare in itself. 

Anyhow...if you ever have one of those ...hmmm, I'm just not feeling comfortable with that...ask questions, get second opinions.

Cheers

natmcg
Posts: 119
Joined: Jun 2012

Hi www987, 

Now Im no Dr. So Im only going by what I have heard and read(and Iv done so much reading in the last 10mth I may be confusing facts from hearsay). Anyway my "guess" is that if dfsp has found its way through all soft tissue to wear it conects with bone then they would have to test the bone for cancer as well. Due to another heath issue of mine 3 yrs ago(brain tumor) I went for mulitple test....one being bone scan. They injected a dye waited for about two hrs...to allow the dye to spread though bone tissue then did scan (whole body)Thankfully the only abnormality in my bones was arthritis. Btw my tumor turned out to be benign and doesnt give me any problems.

Best wishes to your wife and you. 

Nat

PS. I just read Joannes post and boy doesnt she do a great job when it comes to finding the info, she really has been a great help to all of us here both with info and support. I have to admit i have turned to her as the " go to" person on more than 1 occasion since we made contact(and became friends)on this board.

AnthonyBrose7
Posts: 3
Joined: May 2013

Hello everyone

There is a facebook group dedicated to people with DFSP

https://www.facebook.com/groups/dfspsupport/

natmcg
Posts: 119
Joined: Jun 2012

Hi again Anthony,

Thanks for the tip about facebook I think most of us here realised the would be people with dsfp reaching out for support and info on facebook. I have acctualy heard there are a couple of dfsp groups their.
So why havent we checked them out.? Well I can only speak for myself, ..... Iv never been very interested in the internet and am relatively new to this stuff, my husband and three sons seem to have their heads constantly facing a screen of some sort( ph. Laptop etc) and that kind of put me off. If I hadnt found out I had a very rare cancer i probably wouldnt have even found this csn.
Wanting to do some reseasrch on dfsp is what lead me to this site.
So Im happy with the contacts I have made here and although I am a little curious about the facebook groups at this point I dont feel its the type of forum for me ...(muchto the disapointment of some of my extended family who keep telling me to get with the times) But hey Im on skype so what more do the want,,!!! Lol.

Regards and thanks
Natalie.

caroleinnkeeper
Posts: 8
Joined: Apr 2013

Anthony, thanks so much for the FB link! I am very active on there with my business, and also a bit personal stuff so immediately joined the group. It is very interesting and seeing some of the photos is unreal! All on there seem very committed to being supportive for all of us with this rare cancer...thanks again! Knowledge is power...Wink 

Ontario48
Posts: 55
Joined: Jan 2013

Thanks Anthony for the link.  I joined up a while back but found the whole FB thing overwhelming.  I am tech savy but like Nat feels it can consume a lot of your time and energy.  Now saying that its great that people have this forum for this type of cancer.  I will try and look you up there and say hello.

Jo

natmcg
Posts: 119
Joined: Jun 2012

Hi everyone, Curiosity got the better of me and I somehow managed to log in and have a look at the link tony provided above. Wow Tony thst is quite s big wound you have but it seems to be healing well. After looking at some of the pictures I reslize even more that what we see on the outside of our skins surface is not at all an indicator of what is lerking below. My pink/red raised mark was no where near as big as some of the before op pictures on FB but the dfsp had gone deep and wide under that spot. Thanks Tony for sharing your story and photos(on fb). They seem like a supportive crowd and the information is very interesting. Not sure if i will post anything there (havent worked that part out yet) Im feeling like Im at the other end of my dfsp but will always want to support any newbees to this one in a million club. Natalie.

Ontario48
Posts: 55
Joined: Jan 2013

Hey Nat, I set up FB to monitor the boy but find I get all sorts of stuff in email that I am not interested in.  Would be better if there were more controls (or maybe I don't know how to use them) I said hello to Anthony there and he replied...great connecting with you Anthony.  His surgeon really did a great job!! 

Anyway Nat, I have my MRI booked for Friday, follow up appointment is booked for June 11th.  This is the last dot, the last T crossed and then I am into DFSP maintenance mode.  Looking forward to that.  The weather is crazy here, hot with t-storms and tornados.  We even felt a tremor from a mild earthquake in Ottawa (that's where Tony lives).  Going to get a bit cold this weekend and then back to summer temps. 

Looking to golf!

Jo

natmcg
Posts: 119
Joined: Jun 2012

Hi Jo,, no I didnt post on FB managed to get in there and read a bit, even added a "like" for those lovely girls whoes dad is in the military. And then I got all mixed up with what I was doing so got out of it. I could ask one of my boys to help me out(or hubby) but I dont realy feel the need to grt involved on FB at this point.
So MRI in 2days, then results, and another chapter of your dfsp is over. Then...like you said its into maitinance and monitoring.
I just realized the other morning when i was getting dressed that I havent noticed any of the little pains(small sharp stabs or uncomfortable feeling ) for some time under my scar. So maybe all my soft tissues and nerves have reconected and repared.
I was thinking the other day that even though my Dr. said at my check up that I dont need MRI or x ray. Maybe when I go for my regular brain tumor checkup(MRI every 1-2yrs) I could arrange to have my dfsp site done as well,. Not sure if they would do it but I'll ask ,cause hey Im gunna be lying there in the tunnel anyway so why not stay and listen to all those wonderful noises for a bit longer.lol
Its raining here and probably will keep raining for the next few days. We are well into our winter weather but its mild compeared to what you go through .
Kind regards to all
Nat.

www987
Posts: 5
Joined: Apr 2013

Thanks, both.

She is being treated by surgical oncologist at a top US sarcoma center, but when your doctor says "this tumour never ever metastsizes" even though a simple google search will show that that is absolutely false, that really does not inspire a lot of confidence.  I guess that if he goes all the way down the bone and still gets positive margins then that will mean that it has reached the bone.  I just wonder what the treatment would be in that case (amputation?!?).

Ontario48
Posts: 55
Joined: Jan 2013

Sounds like you need to see another specialist for a second opinion.  That statement is absolutely untrue!!  I've read many articles on different mets to lungs, bone, brain/CNS, pancreous, liver, testicles even the uvala (dangly at the back of your throat).  I would expect that if there are still positive margins down to the bone he would do an MRI.  This will show if its in the bone. 

Lots of what I have read as well indicates with mets there is tumor "progression" whether it be changing to another variant, FS-DFSP, or the cells have started to proliferate faster, myxoid changes.  I have also read that if the tumor is cut this could increase the rate of proliferation (not sure how many surgeries your wife has had, I havent seen all your posts).  The cases I have read where it's in the bone they do radiation therapy but in some cases they end up removing the affected bone (if possible).  Where is hers located?

Jo

 

 

 

 

www987
Posts: 5
Joined: Apr 2013

It's on her upper arm and shoulder and she's had it for a very long time (at least 10 years). I think she was unlucky in that the overlying skin looked completely normal and so none of her doctors took it seriously.  She's had two surgeries so far: the first was a "biopsy" she did back home (in reality he took out much more than necessary for a biopsy, which made me really mad).  The second surgery was done a few months later at this sarcoma center in the US where the gross tumour was taken out but the margins came out positive.  I still don't understand the point of this second surgery but the recommendation after that was to do radiation followed by a wide excision.  The surgeon has promised not to close the wound until negative margins are achieved but I wish he'd tried to do that from the beginning!

I'm kind of hesitant to seek a second opinion at this stage.  The fact that it has the potential to metastasize doesn't really change anything in how it is treated, right?  If we  do go for a second opinion, what would be the best way to go about it without alienating her current doctor?

Ontario48
Posts: 55
Joined: Jan 2013

I always go by my guts.  If it doesn't feel right then you need to do something.  Good mechanic, bad mechanic.  They both get the job done but you visit the bad machanic more frequently.  Alot of people get second opinions when they have cancer.  You don't want to look back on the experience and say hey, I wish I had...

It sounds like it may be in a tricky place or it's too big for total excision.  Everything I've read with radiation prior to surgery is to shrink it to something more managable.  The key is acceptable clear margins.  My original surgeon who biopsied said "removal is the cure, it's challenging if they cannot get clear margins".  This will contribute to recurrence.  Most get more aggressive as they recur, hence why they say it has more metastic potiential. 

My General Surgeon referred me to a Moh's centre.  This was at the best skin cancer centre in Canada.  They did the surgery and I really wasn't impressed with the work up (or lack of) and they seemed quite flippent about the whole thing so I searched and found a sarcoma specialist.  I explained my situation and she is now my gal...my comfort level completely changed.

If your doc alienates her for being dudiligent then he isn't doc you want.  My two cents.

Good Luck!! 

natmcg
Posts: 119
Joined: Jun 2012

Hello again,www987, Have to say.... I agree with Jo. Whats more important your wifes best outcome or upsetting the Dr.?. You dont sound like you have full confidence in whoever is treating her now so why are you hesitating. Do some research...Go find a specialist who has experience with DFSP. Ring a few if you have to and see who is willing to look at her reports and consult with her / you. If your current Dr.gets upset ..then he/she is probably not the type of person you will need want dealing  with this situation. You need to find someone you are totaly comfortable with,someone who will answer all your questions and in a way you can understand. My first Dr.who did my biopsy and first excision (didnt get clear margins)recomended my mohs surgon/sarcoma specialist and I have total confidence in both of them. It was my choice to have the first excision,hoping that would be enough,but ended up having mohs anyway. As your wife's dfsp is not a recurance I'm wondering why radiation is being talked about. Did an MRI confirm the size of the affected ? You mentioned the area being not right for 10yrs. Thank goodness this is a very slow growing cancer. I noticed the first changes in my dfsp area well over ten years ago( first sign for me was small indent and discoloration on skin) then when a pink spot/ lump stared to grow I brought it to the attention of many different a Dr. untill finaly I got sick of what was suppose to be a harmless fatty growth (misdiagnosis is very,very commom with this rare cancer it so often looks like a number of other skin conditions )and insisted I wanted it gone, The rest is history. I'm at the other end of my ordeal. And in time your wife will be though this rough patch and on the mend.

Good luck Natalie.

PS If you were in Australia Id recomend my Dr. with out any hesitation.

Grace4
Posts: 2
Joined: Feb 2014

I first want to say thank you to everyone who has posted here and took the time to share their story and give advice. As I am trying to gather more information about this type of cancer it is nice to know I am not alone even though I keep reading how rare it is. I found out yesterday that I have DFSP. It is on my lower left breast and has been there for about 2 years. Like many of you, I was told this was nothing. I went to three different doctors (2 internist and 1 dermatologist) and they all told me it was just fatty tissue. Finally I said I want to see a breast surgeon. He thought it was nothing too but he said lets be safe and do a biopsy. I had surgery, the surgeon did an excisional biopsy. It took two weeks to receive the results and now I am going back to surgery so the doctor can get clean margins. 

I have read there is a possibility of reccurance. My question is has anyone heard of DFSP happening in a new location of the body or does it only recur where you have had it?

 

~Grace

natmcg
Posts: 119
Joined: Jun 2012

Hi Grace,

Im so glad this dicussion board has been of some help to you. But im sorry you found yourself in the position of needing to look for info on DFSP.  

I wish I could help you more with the matter of reccuramce, but there doesnt seem  to be a clear cut answer availiable, only a small % of people with DFSP  reccurance situation and ,mostly it will occure  in or around the scar area probably due to clear margins not being acheived. To be honest I have read lots about it over the last two yrs, but my ability to recall imformation exactly is pretty poor. But I do know some one who can point you in the right direction for more onfo. . You have probably read some of her posts -Ontario48 Jo. Hopefully she will have time to drop in and help out.

Its sounds like  you have a strong will and have made  the right choice in pushing to see a specialist.

Best wishes and Iwill check in again to see how your doing.

Nat.

 

Grace4
Posts: 2
Joined: Feb 2014

Thanks Nat for responding! I just had surgery this week and got the pathology report back today. My doctor said they were able to get negative margins so I pray that reduces the chances of reccurance.  I'll just stay positive :)

 

Grace

Ontario48
Posts: 55
Joined: Jan 2013

Hello Grace,

 

I am glad you received good news on your pathology. The key to this cancer is to get it out with substantial clear margins.  I have read and was told by my doctor that there is a 1% change of a recurrence elsewhere.  Rare, Rare, Rare...they all say that...sick of hearing it.  You know what to look for now so be diligent.  Most recurrences are in the same primary site and usually occur within about 31/2 years.  You will always need to monitor your skin for the rest of your life.  Some have recurrences many years down the road.  Even so know this isn't one of the "deadly" cancers like breast, bowel etc.  Prognosis is good even if you get a regrowth.  Just stay on top of it.

Cheers, Jo

ryan and family
Posts: 15
Joined: Jan 2012

Hello, I am checking in again.  Just a note on what we gathered on recurrance from Canada (TO area) - our son has had two WM surgeries 2 years ago and many biopsies...first surgery (2-3cm wm) had postive test (was not closed even though I asked for 4 cm WM given medical report recommendations) and second 5 cm surgery 6-8 weeks later had negative test thankfully.  We were informed that recurrance is high with this and good to wait...we were informed that recurrance typically happens (majority) in same spot and has much lower chance of relocation.  We were told to try to minimize CT scans for children if possible that may start recurrance...We have been monitoring for 2 years now without any signs of recurrance (we meet with dermatolgists and surgeons to review every 4 months now) and so far, we will wait a few more years before reconstructive surgery if still negative.  We were informed to wait at least 2 years (greatest likely hood for recurrance and best to wait a few more years) for best results (to address 5cm WM skin grafting on head).  Our son is amazingly reslient, and with this, he looks forward with reconstruction down the road which is amazing at 4 yrs age now.  Thank you for sharing to all - ryan and family. 

Jessie5
Posts: 4
Joined: Mar 2013

Hey members,

Just wondering how is every one doing? Thanks to all of you and Joe who helped me and guided me to right person. I am clear now and my Dr. is following up with me every year instead of 6 months which is a great news! Hope you all are doing good. I have been in touch wih Joe since my first post until today finally figured out how to post on main forum. Talk to you all later.

 

Jessie <3

book_nerd13
Posts: 1
Joined: May 2014

Hi everyone,

I'm 23 years old and I was diagnosed with DFSP almost 2 years ago. I had MOHS surgery and they removed about 5 inches from my calf. Lately I have been having excruciating pain in the same area. There are no bumps that can be felt. I'm waiting for an appointment with the specialist that originally diagnosed me to evaluate for bone mets. Has anyone else had mets to the bone with dfsp that can share their experience? Thank you

natmcg
Posts: 119
Joined: Jun 2012

Hi, I havent had any problems since my DFSP was removed ( from under my breast) so am just wtittong to hive uoi some moral support. its been a while since your post, so hopfully you have some answers by now. 

 

Kindregards  Nstalie

 

Sylviajo37
Posts: 2
Joined: Aug 2014

I was diagnosed with dfsp in September 2013 and had three surgerys to get clear margins. I know it is a rare type of cancer but I guess it is even more rare to get it in ur breast. My onocologist feels that they got enough clear margins but I know the more they get the better. My onocologist scheduled to see me in a year but it seems like other people r being seen earlier than that and having other tests done. I am thinking of getting a second opinion from an oncologist that specializes in sarcomas. Has anyone else had these issues??

natmcg
Posts: 119
Joined: Jun 2012

Hi Sylviajo37, 

I had myDFSP just under my left breast. Clear margins after two surgeries. ( the second surgery was mohs)  My dr was (is) a sarcoma specialist.He recomended 6monthly checkups. Then after a year, 12mth checkups for five yrs  because most recurrences seem to happen in the first 5yrs after removal of DFSP.  I did not see an oncologist at all. My Dr has had previous experience with DFSP so I have not seen any one else and so fsr have not needed any other treatments. Its totaly up to you  , but if you can see a sarcoma specialist, or even discuss it with your oncologist again again, and it will put your mind at rest then why not. Better to be safe.

I hope all continues to go well.

Kind regards

Nstalir.

 

Sylviajo37
Posts: 2
Joined: Aug 2014

Nstalir

 

Thank you for ur response. I am still waiting for a second opinion but I'm glad to know uve had good luck it gives me a positive outlook.

 

Sylvia

sayanti
Posts: 5
Joined: Aug 2014

Hi Nat,

How did you come to know of the sarcoma specialist. Did your GP refer to him or you researched him out?

sayanti
Posts: 5
Joined: Aug 2014

I am in dire need of some advice and help. I had a small tumour on the front part of my scalp which was there for the past 15 years. Suddenly it started to grow in the past few months. My GP removed it thinking it was a cyst. After an initial biopsy, it was inconclusively stated that its a low grade fibrosarcome arising in DFSP.

After that I went to a surgical oncologist who suggested me a 2 cm margin surgery with radiation therapy.

I read up a lot about Mohs surgery and understood that since its a deep tissue cancer, just a skin excision might not be the right approach. I then was referred to a Mohs surgeon, who told me some completely differnt treatment called delayed repair which means that they will excise part of the tumour and test. Then excise more if needed.She does not do Mohs surgery on DFSP and said that supposedly noone in Australia does not.

I have never had any MRI done on the tumour, neither any body scans etc to test if the cancer has spread elsewhere.

Can someone please suggest a Mohs surgeon in Australia who does Mohs surgery on DFSP. All the people I have met are inexperience and just want to go into surgery w/o doing any proper testing.

My path report was very inconclusive and the pathologist said that its recommended that you remove 1 cm around the tumour to be safe. Now things have gone to Radiation therapy of my head which will make me lose hair and can lead to further complications.

I am based out of a small little town of Adelaide and I doubt I am getting the right tests/advice for this matter.

Please suggest me a doctor and hospital in Australia who has dealt with this.

Also if someone knows a doctor in US/UK who have expertise in this, I am open for that as well

natmcg
Posts: 119
Joined: Jun 2012

Hi sayanti,

Wow what a worring situation you have found yourself in.

I strongly suggest you do nothing untill you talk to someone who is familiar with DFSP. From what you have written I am very concerned these Doctors your dealing with do not know much (if anything ) about DFSP. 

Its not unusual for DFSP to me misdiagnosed when just looked at, because it can present its self so differently in size & colour on the surface of ones skin. 

But what is most worring in your situation for me are two things in particular.

1.DFSP can be misread by pathologist who are not farmiliar with it, or have not been asked to do the correct testing (cant remember the name of the test just now).

2. The suggestion of part removal then more if needed without clear margins as the goal....oh no...that sounds so wrong. This person is not familiar with sarcomas and or DFSP.  The whole point of mohs surgery (or any surgery) on DFSP is to achieve CLEAR margins!!!

In my case my mohs surgon got clear margins after the first excision, but suggested he take a bit more tissue away all around before closing my wound and I agreed. Better to be safe, and it didnt make much difference to the scare size.

I feel a second opinion from a Sarcoma/DFSP specialist is what you need before you do anything. (Just my opinion of course, Im not a profesional just a DFSP survivor).

I wont go on and on I think you already know you need to make more enquiries. I have sent you a personal message with details about my Dr. Hope this bit of info has helped in some way. Dont worry your on the right track to getting a good result. One thing we all had(and you have) in our favour is that DFSP is a very slow growing cancer (compared to others) and you  are aware of it now. You can get the help you need.

Take care, keep in touch

Natalie.

 

sayanti
Posts: 5
Joined: Aug 2014

Hi Nat,

Yes I got your private message yesterday and I will be contacting your doctor today. Thanks for that and you are a lifesaver.

Well to start with I live in Adelaide. There is hardly any expertise on much diseases here, specially on these rare cases.

I had the most lazy GP ever who did not research on DFSP for even 1 min. He send me to a surgeon who directly said I needed 4 cm margin excision and radiotherapy. I was shocked as I have read much worse cases of DFSP who have not done RT.

My tumour was a real small one, and was there for 15 years before it actually became bigger and noticable. The pathologist who ran the test was not even conclusive and said at max its a low grade fibrosarcome arising in DFSP. My GP said that the pathologist said that its a very low grade tumour and removing around 1 CM around it will solve the issue.

I then started to do a lot of research as its on a very visible part of my scalp. I got hold of a document from National Health Service in London which describes MOHS as the only treatment for DFSP which can lead to long term non recurrance. Then I contacted my GP again and said I want to do Mohs on this one as its the best treatment and will also lead to tissue preservation(its on my scalp and a 4 cm perimeter circle is so difficult to hide).

In Adelaide, there are only 2 surgeons who do Mohs. He sent me to one of them. By that time, I had given him documentation on best treatment for DFSP as I am 100% certain he did not do any research yet.

He then sent me to a dermatologist here. She said that she does not do Mohs on DFSP, she can only do a delayed repair removal which basically is a local excision done in 2-3 stages. Its painful and delayed for no reason and not even in any recommended treatments. The worst part is that my GP forgot to send my path reports to her, so all her analysis was basically given within 2 mins of actually reading the report in front of me.

She has actually given a treatment which is used for some other type of skin cancer which spreads through the lymph glands. That was even written in her documentation. She made me sign a consent form saying that I should do the surgery next week as she is not available for a few weeks after that due to appointments. She is no more than a salesperson who is trying to hardsell a product you basically don't need.

I have had the worst experience of getting this treated in Adelaide.On the hindsight, I think I should have not even tried to treat it by a person who has no experience with DFSP/sarcomas and going bookish about it.

Thanks to you I will contact your doctor who has experience in dealing with such cases and the expertise to do a Mohs surgery.

Thanks so much for your fast replies. I thought I was the only one is Australia who has this problem. Was almost ready to go to UK for treating it in Birmingham hospital

 

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