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Dermatofibrosarcoma protuberans (DFSP)

DeaVan
Posts: 2
Joined: Jan 2007

Has anyone had or no someone that has/had this type of sarcoma? I know it is very rare, but I am having a very hard time understanding what to do. I was diagnosed in November and immediately scheduled for surgery to remove this from my arm. The surgeon only spent about 10 minutes with me prior - and just kept telling me how rare it was and it had to be removed. Since then, I was told they did not get it all and I would have to have more surgery and also additional biopsies(sp) for two other possible areas. I refused to have the surgery until speaking with at least an oncologist. The oncologist sent me back to my primary care physician to have the biopsis, wants to do the surgery with a plastic surgeon for required skin grafts, but also has stated he isn't positive the pathologist was correct in the original diagnosis and wants someone else to evaluate it because it is so rare. My primary care physician scheduled me for the biopsis, but changed her mind that day and now won't do the biopsis since I have an oncologist. I've now (since I can spell it) done the homework and am more confused than ever on why I'm being told surgery is the only option and no one seems to be in charge of this or willing to really work with me and explain what is going on. Sorry for the long winded message, but I am really scared, confused and looking to be proactive in making sure I am fully informed and going in the right direction.

mykidisthebest
Posts: 1
Joined: Mar 2013

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

 

 

 

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

 

 

natmcg
Posts: 125
Joined: Jun 2012

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

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

Hi there,

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

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

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

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

Cheers...Joanne

Mrdeli
Posts: 2
Joined: May 2013

Hi everyoone, 

Had a WLE surgery. 

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

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

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

 

M

 

 

natmcg
Posts: 125
Joined: Jun 2012

Hi, M.

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

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

Try not to worry between now and getting your results.

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

Natalie.

Mrdeli
Posts: 2
Joined: May 2013

Hey Natalie

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

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

natmcg
Posts: 125
Joined: Jun 2012

Hi M,

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

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

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

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

Keep Us Posted

Nat.

 

marshal g
Posts: 1
Joined: Oct 2013

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

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

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

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

Marshal

Cuda340
Posts: 4
Joined: Feb 2014

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

periwinkle1979
Posts: 1
Joined: Jan 2014

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

natmcg
Posts: 125
Joined: Jun 2012

Im sorry you have had such a run around before getting the right diagnoses. I dont understand why the first Dr didnt get the first lumps he removed tested. but that cant be changed so you just have to move on. My story is very similar to yours,even the location is the same. I had discoloration on a small indent under my left breast which I noticed when I was in my 30's. The spot would become sore and itchy, and yes like you my bra made it worse. When a reddish lump started to form I showed  my GP . Even had an ultrasound done, and was told it was just a fatty tissue cyst, nothing to worry about. Two years ago I decided id had enough of the itchiness  and while having a full body skin cancer check I asked the Dr if he could remove these anoying lumps ( I had two by this time). He said a biopsy should be done first. And you guessed it!!  Inocent fatty cysts are cancer......DFSP.   After pursuading the same Dr that I was happy for him to remove the offending lumps asap (as I was due to go on holidays). I ended up having to go to a specialist because to patholagy showed there was more to be removed. Clear margins were not achived ( I should have listened to him and waited for the sarcoma specialist to do mohs.). So finaly mohs was done and two yrs on I have a 6inch scar under my left boob but no DFSP. 

So here are my suggestions to you(no advise im not a qualified person ) Find a sarcoma specialist that has experience with DFSP.. Travel if needs be to see such a person if you can. Its worth the effort, time and money if you do. Hopefully ,mohs will still be an option.

Gleevec is  not something i know about,  except for what iv read in posts here. And I have read that it does seem to inhibit the growth of tumors in cases where surgery is  no longer an option. 

You havent , mentioned where you live.  Im guessing  you are in the USA or Canada.

Im in Australia so its probably no use me recomending any medical people here.

Stay positive, this is going to take some time to work through but its doable.

Sending you best wishes

Natalie..

Cuda340
Posts: 4
Joined: Feb 2014

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

natmcg
Posts: 125
Joined: Jun 2012

Hi sorry to hear about your dfsp. My tumors were not on my head so I cant help you with that.  What I can say is dont worry about having to wait for surgery. This is a slow growing form of cancer. The most important issuse (from my point of view) is to have a Dr.who knows what he/she is dealing with, and can offer you answer 5o all your questions. 

There are a few  old posts on this board from people who have had dfsp  on and around  their face and head. From what I remember reading the removal of dfsp is  the same anywhere on the body.they keep going untill they get it all. There could be a a need for skin grafts/ transplants depending on the amount of tissue removal. I was lucky even after having a peice af flesh the size of a small mobile ph removed there was still enough strech in my stomach to pull it all together and stitch it up. 

If you havent already doneit, I suggest you tap on the heading Discussion Boards and have a read of the other posts about dfsp.  I will check in again in a day or two to see if you have been back.

 Bestwishes 

Natalie.

 

Cuda340
Posts: 4
Joined: Feb 2014

Hi Natalie, What you said was good info. I had the Mohs surgery last year and it was a big one. The area removed was about 3.5 inches in an oval shape on the top of my head. They even scraped my skull all while I was awake. It took some skin graphs and pulling skin together by the plastic surgeon to finish it all. I ended up with a bald spot on my head and I have to get checked every 6 months now. I wish I why these occur. Is it the from the sun or what. Frank

 

 

natmcg
Posts: 125
Joined: Jun 2012

Hi Frank

 

I hope your recovery is going well. Six monthly checkups are the normal way to go  after mohs. I have past the 2yr make since my mohs surgery and am on yearly checkups. I still experience pain in and around my scar from time to time, but the Dr.says that can keep occuring for around 5yrs and it is related to nerves recovery.  In rregards to why this skin cancer happenes.  Well they dont know for sure.  But it is known  that it is NOT a sun related skin cancer. Its  spindle sarcoma and starts under  the top layers of skin in the dermas, hense the name. Lucky for us its not a sun related cancer because that can be much harder to treat if not caught early. 

 

 

Hope things are going well,

 

 

Kind regards

 

 

Natalie

Cuda340
Posts: 4
Joined: Feb 2014

Hi Natalie,

Thanks for the info and kind words. My DFSP hasnt returned as far as the docs can see but I get extreem headaches in the scalp area. Im not sure if it was from the surgery and them having to pull back my scalp and pull it together to try and close as much of the large spot they removed or not but its no fun. My wife really helped me through these tough times but shortly after my surgery her breast cancer returned and she passed away. I took care of her myself until the end and havent really felt well since. Life can be really difficult sometimes. I wish we were alerted when someone was repsonding to our messages on here because I dont know for sure. Frank

Gaittolife
Posts: 1
Joined: Apr 2016

Hey Deavan,

Your post is almost exactly the same as what I am going through just now, and wondering what you ended up doing and what your experiences are?

mark

Karaokejani
Posts: 1
Joined: Jul 2016

Hi,

I am wondering how to prepare for my consult with oncology surgeon on Monday. I went to dermatologist June 22, 2016 to have scar/bump removed from my leg. Only because I thought it was ugly. I had been told it was nothing years before so never worried about it. Dermatologist said it did look odd, but otherwise seemed nonchalant and said he could remove it. I didn’t even think to take a "before" picture.  Then I got the call on July 5th to come in and discuss it being a rare form of cancer. Everything doctors said kinda went in one ear and out the other.  So now that it has sunk in, I want to be prepared for next appointment. Any suggestions would be appreciated. Thank you all for sharing your stories!

natmcg
Posts: 125
Joined: Jun 2012

Hi, sorry you have had to join this elite group, but welcome anyway.

I hope your next Drs visit wasn't to stressful. It seems that in the four yrs since I had my dfsp diagnosed not much had changed. Most GPs just have no idea about dfsp or that it can present itself looking like something else. 

I was lucky to finally see a dr who suspected dfsp and got a biopsy before trying to remove it with clear margins. Which didn't happen & I ended up going to a sarcoma specialist for mohs surgery.

Now I think I have it again but this time on my face. I'm trying not to over react untill my appointment on Thursday, but it's hard not to fear the worst.

I suppose by now you have had the clear margin issue explained and if this wasn't achieved when you dr removed the lump from your leg, you may well be in for some more surgery. 

Anyway if you feel like chatting some more or asking some questions I'll be checking in each night for a while to see how your going. Good luck. PS if you want to read my story or some others, we use to have another thread called dfsp friends here on this site.

Bye for now

Natalie.(Nat Mcg)

 

Flysloan
Posts: 1
Joined: Jan 2017

I'm new and would really rather not be here....however I'm sure that applies to all of us. I found out last week that a "cyst" removed from back turned out to be some random and rare cancer (dfsp). My general surgeon referred me to a plastics specialist and I see her next week.  The general surgeon mentioned reconstruction and skin grafting as the reason for the plastic surgeon.  I have a lot of questions, mostly has it spread?  I had the lump for years before getting it out.    This thread goes back quite aways and I wondered, are all of the posters still around (If that's not too morbid to ask.) I was also curious, because it is such a rare cancer, should I be looking for a doctor with experience with this or does the surgical technique (mohs I am guessing) not really require special knowledge of the cancer and more so the technique?  I live in Canada but will travel! This is not my first cancer but the first time for this type and I'm a little aprehensive.

Also, if you have any tips/thoughts/helpful suggestions/adviceIwould super appreciate it.  Thanks!

ibelieveinthat
Posts: 1
Joined: Feb 2017

Hi. I am in a simlar boat, and have many of the same questions as you, which I hope to shed more light on next week. I received my diagnois Jan. 30 and can tell you that up to now I've had 3 doctors use the word 'cure' 'cured' or 'very curable' when they weighed in on my cancer and I think that's pretty big given that you don't hear those 2 'C' words (cancer and cure) together very often. I am in the United States, Maryland, and would be happy to stay in touch to share information as I learn it. XX

jaxdavishka's picture
jaxdavishka
Posts: 1
Joined: Mar 2017

I had a lump on my back.  I went to my dermatologist and he did the biopsy and it came back as DFSP.  He removed it with large margins and I didn't have to have any skin grafts or anything.  My margins were clear so I was all good.  My followup:  I had to go to yearly skin checks for 3 years then 3 years after, he also sent me for a lung xray because of the location and prox to my lungs.  

I haven't had a recurrance but I am always on the look out.  I hope you have a similar experience with your DFSP.

Vansh04
Posts: 1
Joined: Mar 2017

Hi Flysloan,

I"m also up in Canada and just discovered that I have dfsp too. I've had this "mole" on my back for about 3-4 years all it's never been a concern. I had the mole removed 2 weeks ago and the report came back that another procedure is required as all the edges were not clear. The plastic surgeon who conducted the surgery is confident he can do it, however I have requested a referral to the moh's clinic in Toronto as I do not want to take any chances. I'm hoping they will see me as it appears this surgery has better results. I would rather be seen by a specialist in such a scenario. Where abouts are you in Canada? 

 

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

Hello to the new members.

I've not been on here in quite some time.  Vansh04 reached out to me yesterday so I thought I'd jump on and poke around abit.  I can see my friend Nat has visited as well...hey you!

Looks like more and more Canadians are on here as well.  My advise to those near Toronto is to get in touch with the skin cancer clinic at Mount Sinai Hospital.  They are considered the "mecca" for soft tissue sarcomas (STS). Get hooked up with a specialist there.  They will screen and monitor you accordingly. Dermos typically don't unless they are well versed in this type of cancer.  Not too many are and even less on the general surgeon side. The other advantage is if you need further treatment or procedures the whole team is there.  Plastic surgeons play a huge part, as you have probably read by now, due to the local agressiveness of the cancer.  There are tentacles/finger like roots that can grow varying distances from the primary tumor.  This is the challenging part and will dictate the size of your wound and whether you require grafting.  Moh's is preferred as it tries to save as much "good tissue" as possible.  Wide excision is based on statistics and the experience of your surgeon.  I was to have Moh's, then they decided WLE and the surgeon took less than the guidelines to which he gave no explanation (Womens College). Not being satisfied with this I reached out to Mount Sinai.

I started with 3 mon visits, then 6 six mon visits.  I will hit the 5 year mark this November and will go yearly.  I also see my dermatologist yearly to have the overall skin check. I would also advise that you ask for a copy of all your pathology reports.  There is lots of info in them and if you show an understanding of them you will get your questions answered in much more detail. Again for me, peace of mind.

Do know that there is a very very low death rate with this cancer.  Just stay on top of your health.  You know when things aren't right. Be your own advocate. 

Best of luck...Jo

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

I forgot to ask.  Has anyone also had lipomas popping up.  These are benign tumors of the soft tissue.  I've had two removed in the last couple of years and have recently found one in my calf which is deeper so a little trickier to remove.  I had an MRI on this one at Mount Sinai and the experts say lipoma (can be confused with liposarcoma, hence the worry).

I've found only one article that speaks to DFSP and lipomas.

Let me know...Jo

 

AK83's picture
AK83
Posts: 7
Joined: Apr 2017

Hi. I am from Denmark, Scandinavia. I was diagnosed with Dermatofibrosarcoma Protuberans in the upper abdominal area in 2005. I just underwent surgery in the same area for the second time, because the cancer had returned after all these years. They removed a large area of skin tissue and the upper part of the muscle too like last time at the hospital under full anesthesia. They did not call it the Mohs procedure, but "just" surgery, but they did check the removed tissue under microscope afterwards informing me that all the cancer is gone (like last time; "clear margins") - for now, and that they will do follow-ups every 6 months for the next five years. And that's it. I am finding it hard to consider myself cancerfree, since they told me I was cancerfree back in 2005 after surgey, and now again in 2017, they tell me the same thing even though it came back. And I can tell from your comments in here, that since this cancer has a high recurrence rate, I should consider myself "lucky", that so many years went by before it recurred. Though this cancer recurred in the same area, I am starting to see "shadows" in completely different areas on my skin and I am having them checked at a Dermatologist and will ask to have biopsies made of anything suspicious-looking. Does anybody know if this type of cancer can recur in completely different places than the first time(s)? Hope someone can answer. I thought it would be helpful to share in this community, since this type of cancer is so rare. It is hard to find people in the same boat, and similarly hard to find Doctors who are familiar with this type of cancer. 

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

Good Morning AK83...

Recurrence is very common.  Not sure what you have read but this type of cancer is "locally" aggressive.  The reason for this is that the primary tumor  produces tentacles or finger like projections that can travel some distance away from the tumor.  Consider how small these cell are and how difficult is would be to "get" them all.  You just need one to begin the growth again.  Some people have had regrowths 15 or 20 years later.  Its a slow growing cancer.

Generally the regrowth is contained to the same site.  I have read a couple of medical articles where a patient has multiple sites, but this is extremely rare.  Always be diligent and as you said if something look suspicious see your doctor.

I would highly suggest you get in touch with a sarcoma specialist to manager this cancer rather an a dermotologist.  Your tumor, like mine, is deep seated with muscle involvement.  Thats more serious, has a high rate of recurrence and needs to be managed properly. I've said it over and over on here.  This cancer is a soft tissue sarcoma of the skin.  Very different that a typical sun related skin cancer.  I encourage you to find a specialist. Dermos are the front line of diagnosing this as we see a bump on our skin and we get sent to them.  DFSP needs to be managed by a soft tissue sarcoma specialist.

Try googling STS doctors or centres in your area.

Best of Luck 

AK83's picture
AK83
Posts: 7
Joined: Apr 2017

Dear Ontario48. Thank you for your thorough reply and thank you for the link. I will definitely get in touch with the Scandinavian section of the Sarcoma community there. You have given me more information than the doctors I have been consulting. The Danish health care system is very different from yours, since it is public and exclusively financed via taxes (though - if you have the money - you have the option of getting healthcare from the private sector as well, and sometimes if your doctor directly sends you to a private specialist). Though Denmark is rumoured to have a great Healthcare system in our huge public sector, I must say I have experienced Doctor expertise, advice and thoroughness of a much higher quality in the private sector. I will try to get in touch with the Scandinavian sarcoma group from your link for further advice. The surgeon who removed the sarcoma this time just told me that I should consider myself well again, and that this cancer probably won't recur, but this, of course, clashes with the high recurrence rate it has, and I obviously do not feel at ease with his words to me. Thank you again, I really appreciate it. 

All best, Anne.

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

PS...I would contact these people for information on finding a doctor.  You will also find more information on cancers of connective tissues.

http://www.ssg-org.net/

Cheers...

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

You are most welcome.  I had a hard time with the lack of information I was getting from my doctors so I did a lot of research and reading on my own.  Mostly medical articles.  A recurrence does put you in another bracket in my opinion.  Did you have any other screening...MRI/chest scan.  This type of cancer typically goes to the lungs if its going to spread.  I would insist on a chest scan since you've had a recurrence and you have muscle involvement.  This is considered deep seated and needs to be monitored. 

No doctor can guarantee that there will not be a recurrence.  They can only predict based their surgical plan and resulting pathology reports. This is why you need to be screened closely for the next five years and then annually after that.

We are very lucky in Canada as we have access to specialist through our public health care system.  Mount Sinai and Princess Margaret hospitals in Toronto are the best in Canada.  PMH is dedicated to cancer treatment and MS is the "mecca" for sarcoma.  Sarcoma is very tricky and very rare. 1% of all cancers and DFSP is 1% of that group. DFSP has a very low metastic rate and lower death rate so we are lucky for that.

Its important you find a doctor that you feel 100% confident in.  Once you have that, the stress level will go down.  You can also ask for your pathology reports.  I found that helpful for me, the more information I had in hand the stronger I felt.

Keep me posted Anne...Joanne

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AK83
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Dear Joanne. Thank you so much once again. I will not hesitate forwarding your expertise and experience to the doctors, I will be consulting in the future, if that is ok? I must try to be clearer when I formulate myself (not a native speaker of English so some misformulations are bound to happen, but, hopefully, I make good sense). As far as I understood, the cancer had not spread to the muscle. They "simply" removed the upper part of the muscle in order to make absolutely sure they got it all; wide excision. But since it had 2 cm clear margins, that must mean that the "tentacles" of the sarcoma did not yet have the chance to spread to the muscle. I have an appointment at the Doctor on 24 April and I will insist on a thorough examination and biopsies of every single area I find suspicious looking. 

I have NEVER been screened. Yes, I had a breast screening years back and everything was clear but that's it. No MRIs or chest scans this time; Only wide excision and microscopic examination of the removed flesh/skin with a 2 cm clear margin. Thank you once again, you are so kind for sharing and being so informative. It is very helpful to share and learn through people in the same boat:) All best and take care, Anne.

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Ontario48
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Joined: Jan 2013

Hello Anne,

My heritage is Ukraine.  My auntie speaks broken english so I can translate the "misformulations" just fine...LOL.  The screening part is the problem.  Since this cancer is so rare and has a low metastic rate most doctors will not do all the screening.  Unless of course you use a private practice and they sign you up for everything to make the $$.  Public wants to save $$.  You must insist and its your right to do so.

I would absolutely insist on a chest CT Scan to ensure nothing is there.  Do know if it has gone there its still very cureable.  I don't want you to be afraid of it.  From what I have read most doctors do nothing except remove the first go round.  If you have a recurrence or the more agressive type DFSP-FS (Fibroscarmotas), then they tend to do full screening. That being said, I have read a few medical articles where the site was small, no FS component and no recurrence but spread to the lungs.  Its about your piece of mind.

When I say musle involement it doesn't have to be diseased muscle.  Most grow parallel to the skin surface...horizontal.  Ours grows into the core, verical.  I had a six inch incision but it when down to the muscle.  Three layers of removal, 3 layers of stitches.

Have I asked...is your doctor a sarcoma specialist?

Follow your instinct.  You know your body better than anyone.

Cheers for now, Joanne

2-3 cm is the recommended margin so thats good they did that.

 

 

etc.  When this occurs they tend toward WLE. 

In any account its

AK83's picture
AK83
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For now, thank you soso much, Joanne. 

No, my doctor is not a sarcoma specialist at all, so will insist on one who is from now on. I have found the name of a sarcoma specialist in my city (Aarhus, Denmark) - that is VERY fortunate. Will see if I can get a reference to him. 

I have a LOT of work to do in order to get the right treatment it seems. I cannot thank you enough for your help and your advice and I will not hesitate to tak action ASAP. All best and take care, Anne.

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Ontario48
Posts: 66
Joined: Jan 2013

and keep me posted.  If you email  me from here I will get a notification in my in box. I am not on here much.

You are on the right road!  All will be fine...cheers for now, Joanne

AK83's picture
AK83
Posts: 7
Joined: Apr 2017

Thank you!! Yes, will stay positive. Will do:) Cheers, Anne

Ontario48's picture
Ontario48
Posts: 66
Joined: Jan 2013

https://www.ncbi.nlm.nih.gov/pubmed/20467403

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4310211/

NCBI had lots of infor as well as the NCI   https://www.nih.gov/about-nih/what-we-do/nih-almanac/national-cancer-institute-nci

 

AK83's picture
AK83
Posts: 7
Joined: Apr 2017

Thank you so so much for the links:) 

alpainter's picture
alpainter
Posts: 1
Joined: Sep 2017

Good morning,

 

I'm not at all worried but glad I stumbled upon this site.  I had a cyst that was boil like thing 3 or 4 years ago.  My nurse practitioner tried to lance it, and it wouldn't.  She sent me to the doc who looked at it and thought it was scar tissue and left up to me to have it removed.  I opted not to  In the last 3 or 4 months the thing got huge and looked like a jellyfish caulitflowerish gross growth.  Pathology came back after I had it removed 2 weeks ago and it is DSFP.  Wow, that was completely unexpected.  I have an appointment with an oncologist in 2 days to discuss next steps since apprently the pathology did not see clear margins on all that was removed.

 

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