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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.

natmcg
Posts: 119
Joined: Jun 2012

Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.

Best wished to everyone.
From Australian with DFSP

gayled627
Posts: 6
Joined: Jul 2011

I'm now to this chat room and read your posting. I was wondering how you're doing and how your surgery went. Reading all these DFSP postings is truly educational and I feel blessed to have found this. For 3 years I've been using Gleevec which has kept my main larger tumor (on my forehead) from growing (it actually shrunk for while) but now it's lost its' affect and my tumor is growing. I'm facing some tests and consultations in the next couple weeks and my team will let me know what they recommend for me. It all feels so scary now that it's taken on a life of its' own. I feel like I'm going to start rambling while not following any one train of thought so I'm signing off now to go to bed. Thanks for all of you out there educating me with your stories....I appreciate it!

natmcg
Posts: 119
Joined: Jun 2012

Hi, my name is Natalie and Im sorry to hear you're DFSP is not responding to the medication. But firstly thanks for asking and Im doing fine I had Mohs surgery in Aug to remove 2 small tumors under my left breast and didn't need a graft as there was enough stretch in my skin to just pull it all together a and stitch it up.(I did post some updates that are further down on this list) I going back to my specialist nxt wk as Im concerned about a lump just under my left ear that seems to have changed shape. Im hoping he will remove it on the day.
Now...Im a bit confused(which isn't unusual for me lol) you said your new here but you joined in July 2011?
Also Im curious as to why your tumor/tumors weren't removed with Mohs surgery? From what I read in the other posts(most of the people don't write anymore) Gleevec is used for DFSP that has reocurred. You mentioned a team so Im guessing you have been dealing with the same Dr.s for some time.
Stay positive when ever you can,and if you feel scared or lonely just log on and write it here that's what I did more than once and it.made me feel better just getting it off my chest. No one is going to judge you..your going through a lot and need support. I hope you got a good sleep.
I'm going to try and start a new thread called"DFSP Friends" because as much as I have appreciated reading all the stories and info from DFSP survivors I would like to just get on and chat without having to scroll through all the posts.
Anyway look.whos rambling on now.
If you want you can always contact me with a personal message through this site.
Take care. Nat

gayled627
Posts: 6
Joined: Jul 2011

Thanks for your words! I had first joined this site last year (I forgot about it) but didn't feel I had much to say.

My tumor was reacting well to Gleevec and I felt I was sailing along. I did get Gleevec because the first removal of my largest of 3 tumors (in 2008) was not complete and it grew back again in about 5-6 months. I didn't know about MOHS when I first had the 3 tumors removed and biopsied. Once it grew back again I was told that MOHS would be difficult in my case because of how spread out the roots could be. The surgeon said there could be a 70% recurrence rate with MOHS and a very messed up forehead. So I started Gleevec which did shrink it and keep it that way for 3 years. Now Gleevec is no longer working so I'm faced with the challenge of a new course of treatment. I don't expect to see my oncologist until mid Dec, which is when I'm finished with a CT scan and consults with both a radiologist and the dermatology surgeon/MOHS specialist. When I get the plan they recommend, I'm sure I'll be back for input.

Right now I'm curious to know if radiation helped anyone out there. I'm not quite sure how it fits into the scheme of things. Is it done after surgery or before? Why can't radiation alone work? Will it harm anything deeper than my scalp? etc, etc, etc. In the meantime, I just love this site. It's soooo full of info!!! I've been reading personal stories by others for hours now. That's it in a nutshell.

If you make a new thread (which sounds like a great idea) will I be able to find it by using a search? Right now I don't mind scrolling thru the stories to get to mine, but it will get old fast. Not sure how this site works yet. Maybe I should look around b4 I ask.

Take care Nat,
Gayle

natmcg
Posts: 119
Joined: Jun 2012

Can I start with my happy news...cause I can!! My 1st. Grandchild was born today a beautiful girl. I have three sons so a granddaughter is going to be such fun.
Now about your last post, thanks so much for sharing you medical history. Like you are doing,..I to read all the past DFSP entries when I first joined. And some where back in those stories are some of the answers your looking for. I remember reading about others that have had DFSP on the face and head.
Although those people don't write anymore you could try sending a personal message(which is an email) Im sure they would be happy to answer any questions.
Maybe the facebook group can help you with info(one of these days I'll make the effort to work out how to join that group).
I have never been very into computer stuff,but my new phone(and the fact I had DFSP) has helped me do some valuable research.

I use to have trouble navigating my way around in here, but now I find the easiest way is tap.discussion board,,then Sarcoma, then DFSP.
I did start a new heading but I will keep coming here until you or someone else continues on the other one.

My eyes are refusing to stay.open so Id better sign off.

Will write again soon
Nat.

natmcg
Posts: 119
Joined: Jun 2012

Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.

Best wished to everyone.
From Australian with DFSP

ryan and family
Posts: 15
Joined: Jan 2012

Hello Natmcg, we are moving on as well and I touch base periodically. This is very new to us too and this is a good forum given how rare dfsp is. Our son is two and a half and was diagnosed in January 2012. So far, he has had two wide margin surgeries followed by a skin graft three months ago. The graft was only complete once the specialists felt that the margins were clear confirmed with additional biopsies but we continue monitor very closely. This seemed to be the most important question (ensuring that oncology, with others, were satisfied, and to know more about the longer term reconstruction down the road which is less important). We are having periodic check ups and taking it day by day for now. As parents, we talk about this daily and focus our energy on our son who is managing well. Our closest friends, as well as, colleagues and community, has been an incredible source of support and many people have reached out unexpectantly. We now feel more connected and have a better understanding as time goes on. Wishing you and family the very best and that others do stay connected. Ryan and family.

zing77s
Posts: 6
Joined: Dec 2011

I still visit the site from time to time. I'm a DFSP survivor now for about 6 months. I can still remember my pre-surgery concerns and can relate to how you are feeling. Are the doctor's answering all your questions about expectations (for surgery and recovery)? Are you having a skin graft?

My story is that for 5+years, doctors told me that lumps in my left shoulder/upper chest area were just cysts. When one of them grew to the size of a golf ball, my doctor said it was infected and needed to come out. It was at the follow-up to that surgery when I got the DFSP diagnosis. 3 weeks later and I had wide excision surgery and a skin graft. I had a lot of recovery time and it was a slow process. Taught me a LOT of patience! But, Praise God--6 months later, I am cancer free and have 90%+ of my mobility in my arm!

I will check back every couple days--feel free to post any questions or thoughts you have that you'd like share and I'll do my best to reply! (That goes for anyone reading this forum!)

God Bless!

Jason

kameshs.tata
Posts: 1
Joined: Sep 2012

Hi,

I developed extra growth on my right shoulder.I got it verified by my family doctor and he adviced biopsy test. I got the test done and it was confirmed that it is DFSP;post confirmation i was adviced to meet a surgical oncologist.Post checking and confirmation I got surgery done with wide excision which included grafting.The support that i got from my family at that stage was enormous and that had kept me strong and brave.

The entire process is not painful when compared with other forms of cancer.DFSP is mainly non-malignant and low grade.Have the courage to face it and everything will be fine.

Wish you a speedy recovery.

Just don't worry.

airforcewifeky
Posts: 2
Joined: Nov 2012

Hello, I felt so alone when I was diagnosed last week.I am 40 years old and saw my DSFP about 3 years ago.At least that is the first time I noticed it.It was on the middle of my lower back and so I thought it was a scar from a epideral. Anyways, I had a mole on my side bothering me and I went to have it looked at.While there I asked if they would take a look at my back since it did look different and had another spot beside it. well, it came back DSFP.I was the first case in that office and now I am waiting on a referral to a surgeon. I found a support group for this on face book! There are a litte over 300 people on there. I hope all goes well and please keep in touch. Sandy

natmcg
Posts: 119
Joined: Jun 2012

Hi Sandy, how have things turned out? Have you seem a surgeon yet? I hope your able to have Mohs done. My scar is healing really well and I don't go back for another checkup till April nxt yr.
There have been a few new comers to this group but not many post more than once. Maybe they find the Facebook group easier to access.As for me I like this site antd still log in regularly. Not only to keep in touch wth DFSP people but because I can find out lots of.stuff about throat cancer which another family member is dealing with.
Please know your not alone and 90% of us here had our DFSP over looked and/or misdiagnosed for many yrs. ( in my case over 10yrs of Dr.s saying my lumps were fatty tissue-nothing to worry about)

So you should be able to get clear margins with a bit of surgery and after some rest and recoup you'll be fine
My only advise would be ask lots of questions,and ho with a Dr.that has delt with DFSP before,so many still have no knowledge on this.type of cancer.
Best of luck
Nat Mcg.

natmcg
Posts: 119
Joined: Jun 2012

Oops

natmcg
Posts: 119
Joined: Jun 2012

Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.

Best wished to everyone.
From Australian with DFSP

natmcg
Posts: 119
Joined: Jun 2012

Thankyou to both of you for your replies to my last post. Ryan I am so happy to hear that you precious little boy is recovering and coping with what he has been through. You must be very proud of him. I have never experienced cancer with any of my three sons,but did have to be there when two of them(at different times) were recovering from surgery so I have a bit of understanding of what you have been through. Good luck for the future.

Zing77s (Jason) Your previous input on this forum(along with others) and my research has enabled me to approach my Dr.with confidence and ask questions if I needed to. I am very lucky to be in the hands of one of the most experienced DFSP surgeons in Australia.He has delt with 12other people with this cancer and studied MOHs in your beautiful country(my son had been there three times and I hope to see the sights one day too.) I'm not expecting to need a graft as the area involved is on my left upper stomach and scaring is not an issue. I chose to have the tumor removed 5wks ago by my skin cancer Dr.even though he gave in the option of being referred for MOHs.(I was this Dr.s second DFSP patient.)I was hoping that as my tumor was relatively small 2-3cm( 1in) that one excision would be enough but clear margins were not achieved and I now know that it has spread to fatty tissue. In hindsight I suppose had I opted to wait for the specialist to do MOHs I may now have been at the other end of this ordeal. Anyway thanks again for all the info and suggestions you have put forward over the last few mths and it's great to hear your cancer free and have such good movement back in your shoulder and arm. My surgery is in two weeks so untill then I am going to count my blessings of which I have many and get on with things.
Best wishes to all
Nat.

ryan and family
Posts: 15
Joined: Jan 2012

Hello Natmcg. Also, "zings" comments for us were very helpful particularly related to reconstruction longer term. We have focused on short term, and it was very helpful to understand longer term expectations during the short term. At this point, key questions for us included:

-how long should we wait until free? At leat 2-3 years seems to be a benchmark if not longer.
-is mohs or wide margin the best procedure? After long talks, mohs was elected not to be the best for small toddlers given duration of surgery. This made sense with the informtation and consultation provided for circumstance with a very wide margin.
-what is the best procedure for surgery and reconstruction. Please provide examples.
-What does reconstruction look like (what ever it is)? Please provide examples.
-how are you going to do check ups and how to monitor this? We would like a team to do this. Who is the medical team and who is the lead? May we come back with questions?

And, very carefully, what sources of information are you using to do this? Very recently, we elected to do a post-surgery bioposy to make absolutely sure that dfsp has not come back in such a short time. Our son's hair texture changed and our medical team was supportive to check this with a negative result today (given that there is very little information available and we wanted to make sure). With this, we will now enjoy this summer. Wishing you the very best over next several weeks and months, and also, to Zing77s too. ryan and family.

natmcg
Posts: 119
Joined: Jun 2012

Just though I let you know my MOHS went we'll. Clear margins after the first excision on the day .Surgeon recomended taking a bit more all the way round and down to the muscle(cancer was already in fatty tissue) I agreed . 35 stitches later with my prescription for painkillers in hand my husband and I headed for home. So now Im on the road to recovery. The Dr. hasn't mentioned checkups yet. I suppose we will talk about it when I get my stitches out in 10days. So I couldn't ask for a better result.

Ryan how is you son ? I pray he is now completely DFSP free and you are all enjoying good health.

Zing 77 , hope your recovery is still progressing well.

Take care
Nat.

tenkireport
Posts: 1
Joined: Jul 2012

Hi, I am from Taiwan in Asian and glad to know this forum discussing DSFP. My girl friend was diagnosed "DFSP" 2.5 months ago in Taiwan and had surgery in May 2012. This is also very rare here in Taiwan but luckily the doctor had done the surgery to 1 person before. Since the tumor was on her stomach so plastic surgery is no needed. She had wide excision combined with MOHS (this is what I heard) and recovering very well now. Although she still feels tired sometime but I believe she is getting better.

When we first know this DFSP we were so scared and checked many info from website.
Now I am concerning with the high occurrence rate of DFSP and maybe people from here can give me some advice.

Since the high recurrence for this type of cancer, does anyone have recurrence after 3 years of operation? and does it appears close to the previous surgery or it can be far away from it? also what is the symptom of recurrence?

I would like to know more info so I can take care of her well.. thanks. Pray for all people here healthy and recovery well.

natmcg
Posts: 119
Joined: Jun 2012

Hi, my name is Natalie, I had DFSP on my stomach also. It's only 10 days since my MOHS surgery. I don't know how much research you have done, but every thing I have found out leads me to believe that there is always a small chance that cancer will reoccure,and if it does it will most likely be on or around the existing scar.

But personally I will be requesting a biopsy if I find any lump or unusual skin disorder anywhere on my body. That may sound a bit paranoid. But the area of skin where my tumor grew was discolour and strange looking for many years and even when a lump did grow I was told by more than 1 doctor that it was harmless. So in that respect I suppose I was lucky ,that it was slow growing in my case and had only gone as far ad the fatty tissue

I have also read that people have biopsies done at their regular checkups (the time between checkup seems to vary from one person to another)

If I find out any new information I will post it here. I am still new to all of this. If you haven't read through the other stories on this forum you should try and go through them some have some really interesting information.
Kind regards to you and your girlfriend.
Bye for now
Natmcg.

natmcg
Posts: 119
Joined: Jun 2012

Well how are you all, fine I hope.
My final checkup after Mohs surgery was three wks ago. I was Lucky that my Dr.took a bit more out before he sewed new up, as the stained biopsy showed that there was still a very small spot of cancer on the edge of the initial excision. My scar is healing much better than I expected,and I can do most everything I did before the op with little or no pain. My nxt checkup is in Feb.13.
Best wishes &take care.
Nat.

giffer
Posts: 1
Joined: Oct 2012

My apologies if I haven't posted this correctly; I had trouble figuring out how to post here and I hope I'm not just responding to one person.

A familiar story, it seems. I had a lump on my lower back, on the beltline, when I was in my early to mid 20s (I'm now almost 43) and was always told it was a cyst or even a boil. One doctor diagnosed it as a boil from across the room. Finally one doctor looked at it and said it was no boil and sent me to a surgeon to have it removed. He excised it, thinking it was a cyst, I believe, and a few weeks later I was called in for a consultation and found out it was DFSP. They were surprised as it's so rare, but I was told it was nothing to worry about, though it had to be removed or it would continue to grow. The surgeon said he sees about four cases a year in a city of 3.5 million. They excised the wider area--the size of a woman's fist, he said--and I was told that they got it all. I didn't have further problem with the DFSP but the area where I had the surgery became infected and I was hospitalized and then was stuck at home for almost three months with daily visits from nurses to pack the wound, not an experience I'd like to do again.

Seventeen years later and all seems fine. I was never told to get it checked again. I didn't even realize it was a form of cancer until I visited this board. I plan to visit a dermatologist as soon as I can for a check-up. I have many moles and a family history of cancer, so that would seem the prudent thing to do.

Thanks,

Jim

natmcg
Posts: 119
Joined: Jun 2012

Hi Jim,
I'm not sure how you came across this site but if it led you to getting a checkup its a good thing. DFSP is always easier to treat if found early. Wow I can't believe you weren't told to get regular check ups.
I had trouble working out how to post here as well.(you may have noticed a few of us.have double up on entries because we can't work out how to delete the extras). You have probably realized by now that your post is added to the list of entries and anyone can read it. People here have been a bit quiet lately, I'm sure that's a good thing. As far as cancers go DFSP once removed (wound repaired & healed) is quick to get over. I still log on regularly to check the head&neck cancer posts as well as here. My brother has recently been diagnosed with throat cancer and I wanted to find out as much as I could about what he is in for. They are a very brave group of people in Head & neck section .
Good luck with the check up
Nat.

ryan and family
Posts: 15
Joined: Jan 2012

Hello Nat, so very glad to hear, and and sorry for prolonged follow up... 

Our son is healing well to date after numerous surgeries. Our 'check ups' after the last surgery was every 2 weeks for period of time, then transitioned to once a month, then 2-3 month check up.  We are now (very recently) on a 3-5 month check up schedule. Our approach (as a family), is to process on visit-by-visit basis (block) for a 2-3 year period following each surgery/update.  So far, we have a very good update process involving several specialties which has been very helpful.  ith this, we are vigilent with daily care for graft healing which may lead to reconstructive surgery down-the-line.  Very are glad to hear about your progress, and will continue to touch base.   

Ryan and family.

ryan and family
Posts: 15
Joined: Jan 2012

Hello Nat, so very glad to hear, and and sorry for prolonged follow up... 

Our son is healing well to date after numerous surgeries. Our 'check ups' after the last surgery was every 2 weeks for period of time, then transitioned to once a month, then 2-3 month check up.  We are now (very recently) on a 3-5 month check up schedule. Our approach (as a family), is to process on visit-by-visit basis (block) for a 2-3 year period following each surgery/update.  So far, we have a very good update process involving several specialties which has been very helpful.  ith this, we are vigilent with daily care for graft healing which may lead to reconstructive surgery down-the-line.  Very are glad to hear about your progress, and will continue to touch base.   

Ryan and family.

natmcg
Posts: 119
Joined: Jun 2012

Hello again, it was good of you to check in and give an up date on how your son is coping. And even better to hear that things are going well. I'm 6mths post op and due for a check up. I'm pretty sure I will get a good report.
This site has slowed down quite a bit( which I hope is a good thing) but every now and then someone adds a post.
Once again nice to heat from you.
Best wishes for more good news
Nat Mc.

cmguy777
Posts: 2
Joined: Nov 2012

I am not a medical doctor and can not give any medical advice. Each case of DFSP is apparently different. I was diagnosed with DFSP in my upper left calf in September, 2012. The lesion was approximately 2-3 cm wide. After consultation and research I went to a Mohs micrographic surgeon who performed MM surgery in November, 2012. I was given local anesthesia and after three excisions clear margins were obtained. I was sutured by the Mohs micrographic surgeon. I believe the earlier cancer stage one can get to the DFSP tumor, the better. My tumor was in the lower fatty area of the dermis, however, did not extend into the muscle region, thankfully. I was impressed how Mohs micrographic slides and mapping by the MM surgeon tracked the tumor cells aiding the MM surgeon to take the least amount of healthy tissue out. I hope your case with DFSP has been resolved. Thanks.

natmcg
Posts: 119
Joined: Jun 2012

Hi, happy to hear your surgery went well. My Mohs surgery was in August and I was impressed with the procedure as well. I hope our stories help other people with DFSP who look at these posts realize that this cancer can be removed fully if caught early. My brother has just started treatment for throat cancer. My operation was a walk in the park compared to what he is in for.
Anyway I wish you all the best

Nat Mcg.

cmguy777
Posts: 2
Joined: Nov 2012

Thanks Nat Mcg. I am still recuperating from surgery. Sutures healing well. This discussion has helped knowing others are going through relatively similar situations. I am glad your Mohs procedure went well and I hope your brother will have a successful treatment for his throat cancer.
cmguy777

natmcg
Posts: 119
Joined: Jun 2012

Just making sure this thread stays near the top.

natmcg
Posts: 119
Joined: Jun 2012

Just making sure this thread stays near the top.

natmcg
Posts: 119
Joined: Jun 2012

Oops

natmcg
Posts: 119
Joined: Jun 2012

Oops again

radtechbb
Posts: 3
Joined: Jan 2013

Hi Natalie,

I found the thread and thought I would put my story on this one.  I was diagnosed with DFSP 16 1/2 years ago.  I had a "knot" on my toe and that had been there for 2 1/2 years before I did anything about it.  I had three rounds of surgery to get clear margins and I have been cancer free since.  I did not have radiation, the diagnostic scans I had was a MRI (after the 2nd surgery) and a CT Chest (just for my peace of mind).   I was 22 when first diagnosed and was only the 2nd person in the state ever diagnosed with this type of cancer.  It looks as though the information I am seeing here is what I was told over 16 years ago: (1) that <5% of the cases will spread and if so usually in the lungs and (2) the most effective treatment is surgery.  I have not had any reoccurance since my last surgery in 1996 (knock on wood).  I just wanted to let the newly diagnosed know that there are some oldies out here that have been doing fine since treatment.

Becky

hairoom
Posts: 1
Joined: Feb 2013

I was diagnosed with scalp dfsp in Aug 2012  went to a specialist at University of Michigan hospital  dr Bradford   she is a head and neck oncologist otorynologist plastic surgeon  she is the best    my follow up is in March  she knows a ton about this cancer and has done many surgeries  they consult with atumor board and many doctors team up for this  good luck 

natmcg
Posts: 119
Joined: Jun 2012

Hi, just noticed that you have added a post here.sorry that you have had a DFSP diagnosis. But it sounds like you have been fortunate enough to get some really knowledgable Dr.s straight up.

Not every one diagnosed with DFSP has been that lucky.
If you would like to keep posting and be in touch with the few of us who still drop in from time to time we have been posting under the heading DFSP (recurrence) .we don't all have recurring DFSP but somehow that's where all the most recent posts ended up.
My DFSP was under my left breast and was removed by Mohs last August. I haven't been for my checkup yet . But will
be soon. I live in Australia as do some of the others who have posted. There is also a Canadian lady (Jo) how's cancer site was identical to mine and we have been chatting regularly for a few months.
I'm a bit curious about how you first disscovered the cancer. Did you feel a lump/growth.? Was it itchy or painful? Lots of us where misdiagnosed for several mths or even years( I was).
I hope you do decide to post on the other thread and share you experience. I know the others would welcome your input.
Best of luck
Natalie.

Ontario48
Posts: 55
Joined: Jan 2013

Thanks Hairoom.

I really do think that having an oncoligst in the mangement of this (or any) cancer is key.  A regular dermo isn't an oncologist.  I see them as the GP of the skin world.  I've been reading alot about soft tissues sarcomas recently and comparing it to the skin cancer angle.  It's so different.  Some patients see an oncologist and some don't, do not know why this is.  But you have reaffrimed the importance.  They know cancer...period. I have read about the tumor board as well and there is one specific to STS.  Very cool.  I am going to the Mount Sinai Sarcoma Clinic in Toronto for follow up...really looking forward to that discussion.

Hope all is going well for you!

Joanne

Jessie5
Posts: 4
Joined: Mar 2013

I was diagnosed with dfsp in 2010. It was a small lump which was removed and it was negative. 2 years later it came back in late 2012 and my surgeon removed it again under local anesthesia. Lab report came with positive margins. I had wide excision done in jan 2013 leaving me with a 6 inch scar on my back, this time report came with negative margins but less then 1cm. My surgeon told me i have to go for another surgery and this time she will be working with a plastic surgeon as there will be involvement with skin graft as margins needs to be at least 2cm or more, otherwise it has higher chance of coming back again. My question is should i do more reserch before i get this surgery done. Did my surgeon do the right thing. I was also told that i am not a candidate for MOHS procedure as my scar is too big for it. Some one please help me, i am worried alot. Frown 

 

Lone111
Posts: 32
Joined: Mar 2013

Hi Jessie

i'm sorry to hear that the dfsp came back. I think most surgeons are satisfied with a clear margin of 1 cm. i had my dfsp removed march 12 and i'm waiting on the pathology and i was told that my surgeon would accept a 0,8 cm clear margin. But given your history i think it is good thing that your surgeon is going for a clear margin of at least 2 cm.

I don't know anything about MOH's surgery but i'm sure others will write here too.

good luck with your decision, and your surgery.

Lone

natmcg
Posts: 119
Joined: Jun 2012

Wellcome Jessie to our little group( but sorry you had the need to do so.). I'm a little confused as to why you say the first lump was negative but diagnosed as DFSP. You haven't mentioned.where you live or where your previous surgeries were performed. You definitely should do some research or be more informed by your team of Dr.s about how they are dealing with your reoccurrence.
But try not to worry yourself to much. I have read in other posts that plastic surgons have.been called in bit they do mot always have to get involved. Have you had or are they planning for you to have any scans/xrays before surgery to try and determine how much more needs to be excised?.
At tihis point Im not going to try and.influence you in any way, ( Im not informed enough myself)but if time allows maybe you should seek a second opinion.

We.have a fellow DFSP saviour called Joanne who is very good at sifting through the mass of information on the internet and finding the information that relates to this type of cancer. And Im sure she will be able.to help you somewhat.. so please.keep.check**** in and.we.will all.do our best to support you through this stressful time as best we can.
Please know you are not alone. And things will eventually be ok.

Take care
Natalie.

Ontario48
Posts: 55
Joined: Jan 2013

Hey Jessie, Nat had told me about your post and for some reason I had a heck of time finding it.  Anyhow, I assume from your 2010 excision you got a negative pathology report.  Do you know how much the clearance was on that removal.  That may be an indicator for your recurrence...something I'd find very interesting to know (and others) as we all have the "recurrence cloud" hanging over our heads.  There is much debate on what to remove to achieve clear margins.  The "acceptable" measurement from existing cancer cells to clear margins ranges in the reports I've been reading.  There aren't many articles that speak to this and I couldn't find a rule of thumb measurement.

Is your surgeon a dermatologist or general surgeon? Here's what I experienced.  I had a general surgeon do my first excision, he took the whole thing off 1x3" incision (was thinking it was cancerous).  Mine was on my chest just below my left breast, it was about the size of a nickel.   It came back DFSP, the cancer was on the underside (so deep side) and a bit on the edge.  The GS sent me to a Mohs clinic thinking I'd get that procedure.  That doc did a WLE like yours instead, he just felt for me it was the way to go (size of incision was a factor).  I think it was due to the location as well (but then Nat got Moh's & hers was in the same spot)

Everything I had read said 2-5cm all round for excision.  But he only did 1cm which concerned me.  He did take the fascia as mine was deep.  He said he was confident we'd get clear margins. We did.  So I read more and found out that statistics say Mohs saves more healthy tissue and the average clearance came within 1cm removal.  I suspect that's why my doc (who has is a Moh's fellowship) went with the smaller excision as in his experience it produced clear margins. 

But I am still a little muddy on where the cancer was in relation to the clear margin.  This will be something I will ask my next doctor.  I was told to get a dermatologist for follow up.  I decided to go with a sarcoma specialist.  I've read in a number of articles that if  you have a sarcoma you should see a sarcoma specialist.  Sarcomas are very rare (1% of all adult cancers) and DFSP is rare within that group.  So I googled and found a sarcoma clinic and a doc that specializes in STS (soft tissue sarcoma) and sent her an email.  She wrote back that she will take me on and review all my reports.

SO, after all that I would suggest if you can, find yourself a STS specialist if you feel you want another opinion.  Sounds like your surgeon is being very cautious allowing wide margins, which is good as it's better to be on the safer side.  All that being said, this is a tricky kind of cancer and because of the root like projections its extremely hard to get it all hence why recurrence is commom.  Will your doc do  a chest screen...I've read this is prudent with regrowths (and the Moh's doc said that too).  This cancer, if it spreads goes to the lungs.   There is a good up-to-date article at the National Comprehensive Cancer Network.  You will need to read it twice I am sure LOL, I did. There is also a good section on sarcomas on the American Cancer Society (or Association).

I hope this helps and once I see the STS specialist I will hopefully have more info to share from that angle.  If you are unsure about this next surgery, take your time and get all the questions answered that you have.  A second opinion won't hurt.  You have time as they've got it all out as it stands.

Cheers, Joanne

Ontario48
Posts: 55
Joined: Jan 2013

Hi Lone,

I read some yesterday on measurements to clear margins (this is the pathology findings not the actual excision clearence) as this is something I will discuss with my doctor.  There isn't much as far as statistics that I could find.  I googled DFSP recurrences.  I found a recent report that speaks to conditions that would promote recurrence based on a case study of 158 patients from the same medical centre. 

Now take all this with a grain of salt as this is my understanding of what I read, this is to just give you some possible questions to review with your doc should you choose to.  I  by no means am an expert, just trying to understand all this myself ")

The study referenced the clearance margins... less than 1mm is favorable for recurrence, more than 1mm is less favorable (really splitting hairs).  I found a few interesting facts for what they call "Event Free Survival" (EFS), meaning no recurrence of primary,  regional or distant (mets) disease.

- mm to clear margin

- age, 50 and over higher recurrences

- site, limbs, head and neck higher recurrences

- variant, FS-DFSP (Fibrosarcomatous) higher recurrence & possible mets, where DFSP is considered a low-grade malignancey FS-DFSP is considered high-grade

- histology, lower expression of CD34 & Apol-D (these are protiens) , higher mitolic index and increased cellularity (I think these speak to how the cells grow within the tumor) higher recurrence.  They noted lots of debate on these factors as to whether they truely make a difference.

- macroscopic surgical margins vs. microscopic (I believe this speaks to clearing every edge of the margins as in Moh's, I know my pathology wasn't as thorough as that used for Moh's, so I suspect WLE uses Macro as the specimen is so big.  BUT I would expect that depends on the pathologist doing the testing)

All of what I have read states successful removal of all of the tumor returns the best prognosis regardless of all of the other factors and regardless of whether you had Moh's or WLE.  In your case I'd be interested to know how the above faired out in your original pathology reports and how it compares to now. 

I will be reviewing this with the STS doc and will share what I learn with all after my appointment.

Cheers, Jo

Lone111
Posts: 32
Joined: Mar 2013

Thanks Jo - I think tht leaves me in group of no reorcurrence if it follow the statistics. Event Free Survival :-) how nice

I hope my surgeon calls soon to say the margin are at least 1.5 :-)

thanks, 

lone

natmcg
Posts: 119
Joined: Jun 2012

Hey has anyone had any contact with Jessie she seems to have fallen off the radar.

Hope everything is going ok

Nat.

Ontario48
Posts: 55
Joined: Jan 2013

Hey Nat, left a note on the other stream.  She may not be seeing some of the posts...I had that problem too until figure out to refresh my favorites.

Jessie lives in Toronto and she too made contact with Dr. Gladdy.  She is going to look at her case, wahooo.  So happy for Jessie.  I'm sure Dr. G's like, where are all these DFSP's coming from ")

Chow for now...Jo

Jessie5
Posts: 4
Joined: Mar 2013

Hi Guys, i am new on this website not sure how to use it yet. I have been in contact with jo. She Helped me alot. I read all the comments and they were very helpful. I am not going to make  decision until i speak to sarcoma specialist. So, far i have all different answers from different doctors as my plastic surgeon spoke to them. Some say my margins are good and some says in order to be on safe side it better to go above 2cm. I am waiting for my general surgeon to come back and once i get my all reports from her , i will be able to see sarcoma specialist. Again , thanks everyone for help and i am sorry again for not checking my posts. Have a nice day :)

Jessie

natmcg
Posts: 119
Joined: Jun 2012

Hi Jessie,
Don't apologize its me who gets a .bit nosey and pushy.
It's just Im a bit of a mother hen, and I get concerned thinking that someone is out there dealing with this rare cancer on their own and maybe feeling a bit lonely or scared. So glad Jo has been able to help you with the names and places you can now look into. She really does an amazing job researching DFSP. Sounds like your on your way to getting the best results possible. It's not easy to make sense of it all specialy when the.Dr.s have different ideas.These things take.time to organize and some times all we can do is " hurry up and wait ".lol.

Good luck
Nat.

Jessie5
Posts: 4
Joined: Mar 2013

Hi Nat,

I don't mind if you are nosey and pushy. I know everyone is here to help each other. I found out jo will be seeing dr gladdy soon and we are planning to get appointments on same day so we can meet up. I am still waiting for the paper work. Will update once get an appointment.

Thanks for help!

Jessie  

Ontario48
Posts: 55
Joined: Jan 2013

Hello Everyone,

I recieved an email from "ymrssandra70".  I reads like one of those scams for you to open a bank account and you get a millions of dollars, some lady is stating she has 3 months to live and wants to give me all her fortunes.  Sounds like a money laundering propostion.  So beware...I have notified the site with this info.  Pretty sad preying of people with cancer.

Jo

natmcg
Posts: 119
Joined: Jun 2012

Thanks for the waning Jo. There have been a few different intruders here from time to time. Some post multiple sale adds, some aren't even translated into English(not very clever scrum.) Quite rude of these people to try and take advantage of others who might be a bit vulnerable due to their cancer situation. Hey Jo did you flag her ??(inside joke of mine & Jo's) Hope everyone is progressing well in what ever stage their at. I'm still in the wait for checkup stage. About 10days to go. But Im pretty optimist that all will be well. Nat.

Saywhaat
Posts: 1
Joined: Mar 2013

I had a lump appear no less than 5 years ago on my left buttock. It started out relatively small when i first noticed it, and it itched. I scratched. Over the years it grew in size but stopped itching and never hurt and as a result, i quit paying attention. I wondered fleetingly what it was, but didnt really care all that much. Cancer certainly never crossed my mind.

Fast forward to 2012. I started to notice it again, it was huuuge. It was so big you could see the indention through jeans.  But the only reason i began to pay attention again was because my husband was starting to notice it and he would ask me about it. So finally in 2013, I got sick of the third buttcheek attempting to grow and went to my pcm(military clinic) to get it looked at. I was immediately referred to general surgery to get it further evaluated and removed. By all accounts, everyone suspected and assured me this was nothing more than either a lipoma or cyst, benign. I was never worried. Didn't care what it was.  I really just wanted it gone. So the general surgeon removed it in his office under local anesthesia. 30 mins later and im stitched up and on my way home with my husband. Again, i am assured i wont have to come back, this is it, have a good life. Dissolvable sutures, you're free. So imagine my surprise when the nurse calls me a week and a half later and tells me i have an appt scheduled with Dr. Palmer in a few days. I was like, whaaa? But asked no questions, said yes ma'am and showed up. He enters the office and offers pleasantries, which we return of course, takes his chair and asks how I'm doing. Fine, i say. Healing good. He asks what I've been taking for pain. I say nothing. (not a big pill person). He then gets down to brass tax. You can tell he feels really bad about what he's about to say. "So it's not what we thought it was. It's actually a low-grade cancer called Dermatosdksabnkdfn." I tuned out to an extent. I was like, well of course it is. He was explaining everything. I'm sure my husband was listening, because i was laughing. He asks if I'm okay, i said yes, and i really was. i was just marveling at how those shoes just drop one after the other. Horrible way to start off a year. He had never heard of this, it being so rare, so he contacted an oncologist friend of his and they both researched it and talked back and forth, kicked ideas around, really got on top of this. For me. In any case, the wide excision surgery, which he had discussed with the oncologist friend, was scheduled for 2 weeks. Great. I had never been under general anesthesia.  Of course my husband and I did our own research, and agreed with his course of action in my case.

Fast forward to last week, the 2oth of march. Had the surgery at a local surgery center, a 4 inch scar on my butt, hopped up on pain meds, and finally go home. My follow-up was on the 28th. Clear margins. Lucky me, he actually got it all the first time in his office! i knew i trusted this Dr. He just has a passion about his work and  he seems to genuinely care. I'm lucky and cancer free hopefully. I have a ct scan next week to check the rest of my body. i'm pretty pessimistic about it but i'm not worried at all. i truly believe it is what it is and we'll deal with the outcome. I will be getting out from under the military doctors after all this and getting a referral to an oncologist so i can be monitored in the coming years.

 

For those of us who this happens to, worry is never your friend. Worrying will do nothing but stress you out and give you worry lines. Don't make it more than it is, and deal with it as it comes. You can't change that it's there, but you can control your approach to the news. It's cliche, but i now believe all things happen for a reason. I hate the dr. I never went. there had to be a significant annoying change on me for me to go. But i'm glad i did and it may have saved me lots of agony down the road.

natmcg
Posts: 119
Joined: Jun 2012

Hi there,(saywhaat) sounds like you have got your DFSP all undercontrol. Your right in saying we just have to deal with what comes along as it comes. So pleased you have got clear margins and your forward planning is done. Not all if us handle the DFSP news the same and this discussion board has been a wealth of knowledge and support to many people. Me being one of.them. Your story( thanks for sharing ) is just sooooo common. We go to the docs cause we are.sick of an annoying lump (mine was under my breast and always being rubbed by my underwire bra) and want it gone . Then a week or so later oh by the way that harmless growth it a rare skin cancer. So welcome to the 1 in a million club. Wishing you all the best.
Nat.

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