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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.

bstar
Posts: 22
Joined: Nov 2009

Here are two links,Pip on Facebook has been helpful in trying to locate Surgeons in certain geographic areas, this is new but check it out.

http://dfspsupport.squarespace.com/discusion-page/post/1092475

http://www.facebook.com/?tid=1278219317168&sk=messages#!/group.php?gid=91657360264&v=wall

The first site is a new site for DFSP
The second site is the Facebook group which many belong too and info is shared.

Bstar

BrendansMom
Posts: 4
Joined: Sep 2010

My son had a nickle sized bump on the top of his foot for only about 2 months when we had it removed (took me that long to get him an appointment). They determined it was dfsp, and admitted him 3 days later to do a wide local resection. They removed the skin and tissue on the entire top of his foot, from the bottom of his ankle to the top of his toes, and all the way deep down to the muscle and tendons. He had a wound vac on for 5 days, and then they did a skin graft off this thigh. Surgeon was confident that he got it all.

We went yesterday for our first quarterly re-check with his Oncologist at Childrens Healthcare of Atlanta's AFLAC Cancer Center. Chest ct scan was clear, and his MRI looked good, Dr said. He had originally told us after the surgery, that all the margins looked clear, but then told us yesterday that he may have 'missed' a report that shows the depth margin was not totally clear. They went all the way down to his tendons, so they really had no other way to go any deeper. As it is, my poor kiddo now has a severly indented foot, where the very thin skin graft did not fill in all the tissue they removed from the top of his foot. Dr is suggesting we meet with the pediatric radiology Oncologist to discuss our options. Has anyone else done radiation with much success? My thought is, why do radiation before we even know for sure that has re-occured? I know all about the high reoccurance rates, but I feel like it's a double edged sword here. If we do radiation now, the dfsp may not come back, BUT he may develop another kind of sarcoma years from now. A more serious sarcoma possibly. If we don't do it, the dfsp may come back, and then we may have to do radiation then, or possibly another surgery. Oncologist seems to think they can't go any deeper though, and the next step would be amputation. We want to try EVERYTHING possible before we get to that point! I feel like we should just watch it, and continue scans and mri's every 4 months, and if it returns, THEN we can look at radiating.

We talked about the Gleevac pill, and Dr didnt seem too confident in it. He said some dfsp's will become resistant to it, and he would need to take the pill the rest of his life. He is only 9 years old, I could handle him taking a pill the rest of his life if it keeps this cancer away! Also, who knows what kind of advancements in medicine they will discover over the next 50, 60 years?

How is everyone else doing that has had surgery? We are 4 months out, and healing fairly well....Brendan was able to wear his first pair of Nikes when school started last month :)

Melissa

Keri Roo's picture
Keri Roo
Posts: 3
Joined: Dec 2009

Well its almost been a year since I was first diagnosed with DFSP. Again, I appologize for not responding in months.

My MOHS surgery was very succesful. He took a small area around my scar (from the biopsy) and had completely removed the cancer in the first go. He also removed the small bump I had on my belly which was not DFSP! I did have internal and external stitches that have healed very well. My scar is about 4 inches long. I have also seen my new Dermatologist that I will be seeing once a year for the next 10 years. I did not end up getting the CT Scan.

I felt that after my surgery a big weight was lifted off of my shoulders. The recovery was a little hard since I couldn't pick up my babies and co-sleeping was uncomfortable but manageable. My family was a big help and support duing this whole process.

I am happy to say that I am now married! Steffen and I were married on Aug. 22. 2010 in the front yard of my parents house in Hubbards, NS. They live right on the ocean so it was a beautiful ceremony. My make-up artist tried to cover my scar the best she could. I was so worried that everyone would be looking at my scar on my back and not at me. This was NOT the case :)

Thank you for all of your encouragement and thoughtful words. It is very much appreciated. Especially to BStar and JC.

I have just found another small bump on my right back/shoulder (my DFSP was on my left shoulder/back), that is red in color and very round. My husband says it does look odd. I made an apt. with my Dermotogist today and will see what she says. I know that JC said that you can have DFSP in more than one location but I can't seem to find any more information on this. I wonder now that maybe if I would have had the CT Scan it could have told me that it hadn't spread or that there was only the one spot?

Good luck to everyone and it is true, this too shall pass!

JC (not verified)

Hi Keri Roo,

Congratulations on your marriage! I am glad to hear that your surgery was successful and that you are moving forward. I hope that your upcoming visits will show that you do not have DFSP and that the new bump is something benign. I know I have several bumps on my body and am always wondering if it is DFSP.

I will recheck my info that the DFSP can be in more than one location; I am sorry I haven't been on lately, but work was very busy and I had bronchitis for the past month.

I was in NS in May (after not having been there since the mid-80s) and fell in love with it again!

All my best; I will try to check back soon.

JC

Moemcn
Posts: 5
Joined: Aug 2011

Hi Bstar

I was just diagnosed. What worries me is that this bump under my skin has been there for at least 20 years. My doctors have always dismissed it as some sort of trauma that occurred that I just didn't remember. I had it biopsied in June because it got a little bigger and sore to the touch. In would like to know what I should do the dermatologist that I was referred to will ot call me. My diagnosis was basically done by phone by one of her staff that could not even pronounce it. I want to get referred to the MOHs clinic in Toronto. She won't call me back and is basically insisting that I see a general surgeon and have it removed and have MOHs of it comes back or the pathology indicates they didn't get it all. I have been reding a lot about scar tissue and multiple surgeries. How do I get her to refer me to the clinic. Also are there any other tests I can get my family doctor to send me for in preparation? My concern is that because this lump has been around for a long time, there is more to it than what can be seen on the surface. Is this a legitimate concern. Also I am worried about the level of care I am receiving in my city. It took almost two months to hear from her office after the biopsy. My family doctor called me about three weeks before the dermatologist and told me that I must follow up with the dermatologist. She had the results for a number of weeks before calling. I am very frustrated and worried and could really use some advice.

I am very happy that I found this site.

Foggy1997
Posts: 1
Joined: Sep 2011

All I can say is follow your gut and seek a specialist. Make sure they know you want it and now. If one doctor isn't cutting it, find one that does. I turned my doctor loose and found a specialist that saw me in less than one week and got it cut out that day!! I am going back in tomorrow to see if they got it all, hope so, but even if they didn't, I trust him to make the right next move. Please get really strong, this is your life, and get a second, third, fourth opinion if necessary!! Take care!!

Moemcn
Posts: 5
Joined: Aug 2011

Hi Bstar

I was just diagnosed. What worries me is that this bump under my skin has been there for at least 20 years. My doctors have always dismissed it as some sort of trauma that occurred that I just didn't remember. I had it biopsied in June because it got a little bigger and sore to the touch. In would like to know what I should do the dermatologist that I was referred to will ot call me. My diagnosis was basically done by phone by one of her staff that could not even pronounce it. I want to get referred to the MOHs clinic in Toronto. She won't call me back and is basically insisting that I see a general surgeon and have it removed and have MOHs of it comes back or the pathology indicates they didn't get it all. I have been reding a lot about scar tissue and multiple surgeries. How do I get her to refer me to the clinic. Also are there any other tests I can get my family doctor to send me for in preparation? My concern is that because this lump has been around for a long time, there is more to it than what can be seen on the surface. Is this a legitimate concern. Also I am worried about the level of care I am receiving in my city. It took almost two months to hear from her office after the biopsy. My family doctor called me about three weeks before the dermatologist and told me that I must follow up with the dermatologist. She had the results for a number of weeks before calling. I am very frustrated and worried and could really use some advice.

I am very happy that I found this site.

VanessaK's picture
VanessaK
Posts: 1
Joined: Apr 2011

In June of 2005 I took it upon myself to see a surgeon to have a growth in my upper left arm removed. For more than a year I felt a growth in my arm- I went to my GP and was told that it was a fibroma- a fatty tissue growth and not to worry. It didn't bother me but I felt that it was growing-a year later I started having tingling sensations running down my arm and stabbing sensations so I decided to get a second opinion. I was 27 years old. I had the initial visit with the surgeon and was told that it was one of 3 things- 1 of which he did not suspect-but had only treated 3 times in his 25 year career- a sarcoma. I didn't think twice and had no idea that I would get the call that it was in fact cancer. I went in to have the mass removed on 6/25/05- a few days later I was told that pathology came back confirming it was a dermatofibrosarcoma protuberans and that I needed another surgery for a wide excision because the margins were not clear. I found this e-mail that I sent to my boss that week:
I had to have a CT scan done on Monday, when I arrived for that they told me that my doctor also requested a bone scan; with that test I had to have a radioactive material injected in me and then come back for the scan.I had to return on Tuesday with an empty stomach, I arrived on Tuesday at 11 am and had the radioactive isotope injected and I had to return 3 hours later to have the scans done. Following the procedure i was radioactive for the next 48 hours and was advised by the technician to try and seclude myself from people, especially small children and pregnant women. On Thursday I had the surgery, the doctor told me that they would be taking an inch on each side plus 1 inch deep. They gave me general anesthsia and I woke up an hour later in a lot of pain and a very large bandage. It turns out that they cut me about 8 inches long and they removed the fatty tissue all the way down to the muscle. My bandage was getting pretty saturated so I changed it on Saturday. When I saw what they did to me (even though the most important thing is that it's all gone) I was shocked and upset. I have 29 staples from the middle of my upper arm to the crease on my underarm. It is really painful on both ends because it got so swollen and the staples are being pulled by the swelling. The painkillers help but they make me really sleepy.
I went annually for the past 5 years to have a chest CT to ensure that it had not spread and 6 years later I am sarcoma free- fingers crossed that I will not have to deal with this issue again. Love and positive vibes to anyone going through this now.

BednarsGirl
Posts: 1
Joined: May 2011

I was diagnosed with Bednar's Tumor, a subgroup of DFSP, indicated by a blue tint. It's usually subcutaneous, and mine was close to the facsia. My surgeon did a wide excision on my left deltoid. The tumor looked to be pea size and like a broken bluish blood vessel. After the wide excision, my dermatologist oncologist didn't get a good enough margin, .2mm. They had me do radiation at a high dose for 30 days. I finished in the end of February. My surgery was done in November, but due to a bad infection, they had me wait until the end of December to begin radiation. I was not to thrilled with my Dr, so I went to MD Anderson for my follow-up visit. That was in the end of March. He wanted me to wait a month before getting a MRI to check to see if it was gone. This week I noticed a blue mark exactly the same as the original tumor, in the same location. Apparently, the radiation did not work as planned. I live in Utah, and have lost much confidence in the Dr's here, thus the trip to MD Anderson. I am very small to begin with, and since they took out over 15" of skin, I'm not sure how surgery will work, assuming they will excise it again, this time, I'm assuming with the MOHS procedure. Could anyone advise me on what to ask my Dr's concerning CT or PET scans. I'm so worried that I've had a recurrence after 6 months, that I want to check for any other parts it ma have affected. I'm young (32) and in very good health(I own a Pilates studio). I want to be much more proactive this time, since the first round I just did what I was told even though the Dr's seemed to be inexperienced with this rarity. Also for those who have experienced recurrence, how many? I'm hesitant to take Gleevec. I'm thinking that it may be a reality though. Since my tumor is not large in size, where some DFSP patients have such large tumors that the meds help shrink it, so that doesnt apply to me. Any thoughts, similar experiences or advice would help! Also, I read in a Japanese study, that the recurring cancer is more aggressive, and because of that, it puts your statistics higher for metastasis. Does anyone know of the statistics for recurring patients? I'm so glad I found this forum!

bklee
Posts: 2
Joined: Jun 2011

Hi! Well, hopefully by now everything has been taken care of and you are on the road to recovery. I had a somewhat similar experience to yours. I am also young (28yrs old, was 27 at the time of diagnosis). The first time, I had two surgeries with wide excision which have, unfortunately, led to some pretty severe scarring of my left shoulder. When I went back for one of my checkups this year, my dermatologist (who is FANTASTIC) and my oncologist suspected I may have a recurrence (almost exactly one year to the day of my diagnosis.) I was never treated with radiation though it was said to be a possibility with confirmed recurrence. As for Gleevec, I am actually going to begin treatment with that in about 2-3 weeks. From what I have researched, and from what I can gather from speaking to my doctors, this is a highly-effective treatment and very well tolerated. Since it targets specific proteins/cells, there is minimal damage to healthy cells. Though there are side-effects as with any cancer drug, I hear they are very manageable compared to other forms of chemo or other treatments. Additionally, since this cancer has a high recurrence rate, though Gleevec is, admittedly, not the preferred choice of treatment, as you mentioned with your small size (I am also a small female), anything we can do to limit the number of surgeries/excisions we have is probably a good idea in order to avoid longterm damage to that area. Anyhow, I hope this was helpful, and if you have not decided or taken Gleevec as of yet I can give you some updates on what I think about it or how it affects me. Best of luck!

Brandi

Moemcn
Posts: 5
Joined: Aug 2011

I was just diagnosed and you are right there isn't much info available. However, what I have found is that moh's microscopic surgery is THE BEST treatment. I have also read that wide excision has a higher rate of recurrence than MOHs. MOHs surgery has a 99 per cent cure rate. Google this surgery and do your research. It is easy to be railroaded into other treatments but stick to your guns. I wish you all the best. I too am having the same issue with the doctor that diagnosed me. I have seen her for all of 10 minutes and she won't even make time to speak with me. I only get to speak to her nurse or secretarial staff. It is seriously frustrating because I can only get a referral for a MOHs surgeon through her. I am considering going to another dermatologist in another city that will actually speak to me and answer my questions. I too was told to have the wide excision surgery and then have it sent to a pathologist and if there was still cancer then I would get the MOHs surgery. But why go through more than one surgery if you don't have to. as the surgeon removes the tumor and tissue they check it under a microscope and look for cancer cells. If there are still cancer cells then they continue to cut until they have removed it all.

kyoungs
Posts: 3
Joined: Sep 2011

I was just diagnosed with DFSP. Tumor removal was 9/14/11. It was located on my forehead above my left eyebrow near the hairline. Doctor called me 9/20 with results. Cleveland Clinic contacted me 9/21 to schedule the first consultation for 10/3/11. I have been reading as much information as I can. I was told that I would need reconstructive surgery. I believe MOHs surgery is the best solution, however, based on the location and additional unknowns, I have to be prepared for other alternatives. Please keep all information coming!

Krzysztof
Posts: 1
Joined: Oct 2011

Hi all. I am a father of 15 year old girl who has this stranger on the right shoulder. Best oncologist in Poland it is cut with a small margin. He thought it was a mild variant. But it turned out that this DFSP. Biopsy was not done in the oncology center. Oncologist told to each take a section of the hospital oncology in the Polish capital for re-examination. Even though you will need to send back to belgium for molecular studies. Please tell me if anyone of you is close to the age of 15 years and has a DFSP .. whether this can be to live long? how long? you know what there in the world with this disease. Tell me honestly. Those who have it. On Monday I will have a new study re - examination.

my English is just google sorry for mistakes

Krzysztof

Buffkins
Posts: 4
Joined: Oct 2011

I am a 52 yr old female who had DFSP in the left breast 12 years ago. There was never any lesion visible on my skin - just a pea-sized lump in my breast that I had for years. Doctor after doctor told me it was nothing to worry about. Finally, after having 2 friends stricken with serious forms of breast cancer, I insisted on having the lump removed, and it turned out to be DFSP. After the initial surgery, I had two more surgeries to get clean margins, no chemo or radiation, and all follow-up exams including mammography and ultrasounds and clinical exams have been fine. In August of 2011 my dermatologist felt a thickening along the scar line from my previous DFSP surgery. An ultrasound showed a 5mm lesion in the same area as the previous surgery, did not show up on subsequent mammogram. I had an excisional needle-guided breast biopsy yesterday and I am so scared that DFSP is back again. The breast surgeon removed a piece of tissue the size of his thumb, obviously larger than 5mm. He is quite concerned, I am sick with worry. I should get the pathology results on Thursday. I am so glad I found this discussion board. Thanks for listening, Buffkins

Buffkins
Posts: 4
Joined: Oct 2011

Hello, I'm happy to report that my pathology report from last week's biopsy came back negative for any DFSP cells - I am so happy.

Keeping everyone facing this disease in my thoughts and prayers.....Buffkins

naye
Posts: 2
Joined: Jun 2002

HI I had to write to you. We are about the same age and I also had DFSP in my breast area about 14 years ago. I haven't been on these sites in along time and I am so surprised at the amount of cases there are now. I had three surgeries and am left with an 8 inch scar on my chest. I now have a small pea size colorless bump on my arm and I was wondering if I should start to worry again. They say it is unusual to come back after 10 years. I hope you get good news. Once you have any time of cancer it is hard not to go to that place again. Try and be positive and hope for the best. Best wishes! R

naye
Posts: 2
Joined: Jun 2002

HI I had to write to you. We are about the same age and I also had DFSP in my breast area about 14 years ago. I haven't been on these sites in along time and I am so surprised at the amount of cases there are now. I had three surgeries and am left with an 8 inch scar on my chest. I now have a small pea size colorless bump on my arm and I was wondering if I should start to worry again. They say it is unusual to come back after 10 years. I hope you get good news. Once you have any time of cancer it is hard not to go to that place again. Try and be positive and hope for the best. Best wishes! R

Franny1908
Posts: 1
Joined: Nov 2011

Hi,
I'm a mother of a 14 year old who had the same. It was a little lump for years until she said she wanted it gone. She needed a large removal of tissue, which is very painful as a parent to see. She also had a small margin near one part, but it was clear. She is fine though, and will have reconstructive surgery when she is 18 or 19 to make it look better. As long as they clear the DFSP. She's positive, I'm positive. It is true they come back, but lots of people don't have them re-occur also.
Good luck and stay positive.

lynda44
Posts: 1
Joined: Nov 2011

hi i had what i thought was a cyst in the middle of my chest between my breasts for years after it changed colour and looked like a third nipple i decided to have it removed {purely for cosmetic reasons} two weeks later i recieved the phone call informing me i had DFSP which was a huge shock,i had wide excision of the area leaving a 5" scar, on going back for my results i was told that ideally there needs to be a 3mm clearance and i only had 1mm, i am now booked in for 2nd op on 1st of dec i will also be having a woolf graft, would be interested if anyone else has had this type of graft.

Buffkins
Posts: 4
Joined: Oct 2011

Hello DFSP friends,

After my recent recurrence scare (biopsy was negative), my doctor has hooked me up with a sarcoma specialist at Duke University Medical Center who is recommending annual lifetime checkups. My first appointment is tomorrow (Weds). The specialist called me on the phone to set up the appointment, and emphasized how sneaky DFSP can be, and also that patients need to be followed for the purpose of tracking and research into survival rates based on types of treatments, locations of tumors, etc to help others in the future. I'm all for that ! Happy Holidays to everyone, prayers headed your way for a healthy future! Buffkins

gayled627
Posts: 6
Joined: Jul 2011

Hey Kyoungs.....I don't know if you look on the board any longer but I was curious about how your treatment went. I too have a tumor on my forehead but I think it's closer to my left eyebrow than what you seem to have. My treatment may go up to my scalp line so I would love to know how your surgery and recovery went. How is the scar doing? Does it stop hair from growing in the scalp? I'll wait to see if you reply to this before I go on with other info and questions. In any case, I hope all went well with you.

shamarie
Posts: 1
Joined: Dec 2011

Hi, my daughter was diagnosed with this cancer, We first noticed it on her back when she was about 7 years old, the Dr. said it was probably a cyst formed from a mosquito byte, no big deal. This "cyst" kept getting bigger and bigger, over the years, it would take on diffrent shades of purple,and reddish, it was getting tall and widening, it didn't really bother her too much and since it was on her back we didn't see it much xcept for when she would go swimming etc. I took her to a dermatologist, she thought it was a hematoma, and said all she had to do was draing it, she proceeded to stick a needle in the middle of it and my daughter cried out in pain, it started bleeding quite a bit, the dermatologist had an odd look on her face and said she would'nt mess with it anymore, it will probably go away after a few years. My daughter was about 12 years then. So we went on our merry way and every time I took my daughter in for a cold or allergies, I would always ask the dr. to look at it, they all said no big deal, it's just kinda ugly, but it'l go away. It kept growing and eventually started hurting her, I took her to a diffrent dermatologist. He did a biopsy, and he is the one that told us what it was, he said it was very rare, especially in people my daughter's age, he took pics. to submit into some medical journal, and sent us to a Moh's surgeon. This was probably the scariest time of our lives, he didn't know how far he would have to dig, great Dr. he allowed my husband and I to stay in there with my daughter the whole time he did the surgery, we were there all day from 6 a.m. till 9pm she was under local anisthetic. he had to take small slivers from her back, let them freeze and look under a microscope. by the time he was done he had reached the muscle in her back, the trapezoids. She had to undergo alot of plastic surgury and healing,this is going on year number 3 with no reocurrences, but recently she has been complaining of her back hurting when she lays down, and at times paralyzation, I don't know who to take her to for that, nobody said anything about an oncologist or anything like that.But like I said so far its still gone. The Moh's surgury has a really good success rate. I'm glad we did it, and I think she is too.

Buffkins
Posts: 4
Joined: Oct 2011

See my comment above about lifetime follow-up checkups. If you live close to a major medical center, you need to find an oncologist who specializes in sarcomas. My original diagnosis was 10+ years ago - I am healthy but need to be on guard - I will remember your daughter in my prayers. Buffkins

zing77s
Posts: 6
Joined: Dec 2011

I was just diagnosed last week with DFSP. I had several cysts (or that's what I thought) in my upper chest near my left shoulder that I discovered about 5 years ago. 2 different doctors over the years have said they were cysts and not to be concerned unless they grew. Well, over the summer, one of them grew to about the size of a golf ball. My primary doctor diagnosed it as an infected cyst and sent me to a general surgeon to have it removed. I had to have surgery to have it removed and while in recovery, he told me that it was NOT a cyst and that fully pathology was ordered. During my follow up on the first surgery, I found out I have DFSP. Since this is such a rare form of cancer, he has only seen this a few times. He didn't mention Mohs as an option (which I plan to ask him about)--but for now is planning a wide removal (about the size of a mango) and testing of margins. I meet with Plastics next week to find out that part of the process. My chest scan came back clear, so he's confident it hasn't metastasized. He mentioned that after treatment, I will have to have lifetime checkups and will be referring me to an dermatologist. Through it all, I'm very thankful for family and friends who have come along side me--and trusting in God through all of this. With such a rare cancer, it's been hard to find good reliable information--so thanks to all of you for sharing! I hope my experiences can help others too.

ryan and family
Posts: 15
Joined: Jan 2012

Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

"what are the best questions to ask these professionals"

We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.

ryan and family
Posts: 15
Joined: Jan 2012

Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

"what are the best questions to ask these professionals"

We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.

ryan and family
Posts: 15
Joined: Jan 2012

Dear Zings77s (just Diagnosed), as a second follow up to this forum, and as a new arriver today with a toddler having dspf, I am very touched by your, and everyone's story. I am the father of a young toddler recently diagnosed with dfsp through biopsy after an 8 month wait (previously diagnoised with several different opinions including a cyst. We know after three referrals and through a biopsy, that we are dealing with dfsp).

I am glad to hear your experience as it is relates; a 1cm raised reddish bump and seems localized pending additional results. We have some big decisions to make over the next few days with plastics, oncology and others, regarding the type of surgery and reconstruction (grafting is only available given location on head area). This will also be about a mango size area. We will receive margin recommendations shortly.

We have access to very experienced health care specialists (we are located in canada near a major city in a large hospital) and my question is:

"what are the best questions to ask these professionals"

We have prepared a laundry list of questions but feel like a fish out of water. I am hoping for some additional insight if you or anyone is able to offer (seems like our child is at the same stage). We were not offered mohs, but this is being investigated (rare for a toddler but we asked and very specialized treatment usually for adults). Any perspectives on this would be greatly appreciated as we meet very soon. We were told to attempt to removal any existing dfsp with wide margins. Wishing you the best zing77s. We also asked for studies and research. Agreed, hard to find but hopeful. Many thanks, very touched, and a privilege to be here. Ryan and Family.

zing77s
Posts: 6
Joined: Dec 2011

My prayers for you and you little one for the journey that lies ahead.

I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.

to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.

i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.

so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."

When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...

feel free to post any other questions and I'll be happy to offer my thoughts...

God Bless!

ryan and family
Posts: 15
Joined: Jan 2012

Zing77s, thank you very much for sharing.

Kudichan
Posts: 1
Joined: Feb 2012

I am also interested in any one who has DFSP with myxofibrosarcomatous transformation.I was diagnosed with this 6/2010 which started growing in may and had the tumor removed. It was on the inside crease of my right leg. The Dr. told me a month later he did not get it all and we would have to do surgery again when it came back. So I was wait and see mode next. He did tell me he would have to take my leg off next time.. which had me concerned. I thought it was back in May 2011 had an MRI and he said just scar tissue. So I thought he did not know what he was doing so I found another Dr that is handling it in a group approach.I was supposed to have surgery Nov 2011 but he decided he wanted me to try Gleevec to shrink it. My first one grew to 8 x 10 mm and the second one from june to November was 4x6 mm. So I am still on that and it has shrunk the tumor completely on top of my skin, but the one under neath is still there. I will be having surgery the end of Feb. My question for you is on skin grafts. I know they are going to do the MOHS surgery and skin grafts to rebuild my private area. I dont know what to expect, should I be concerned? The last Dr. sewed my labia to my leg that I could not walk well so I had reconstructive surgery to slice my leg open so I could walk.It helped and my new Dr. knows my concerns.I am a fairly active 55 year old..I am just afraid I will never have my old mobility back. I know you can never go back.. kudichan

zing77s
Posts: 6
Joined: Dec 2011

Hi Kudichan. Sorry to hear of your troubles with your previous surgery. It sounds like you made a good decision in changing doctors. Is your new doctor experienced in plastic surgery? In my case, I had 2 doctors--one who removed the cancer, and a plastic surgeon who did my skin graft. I would ask a lot of questions about what to expect with the graft and if your new doctor doesn't have a lot of experience with plastic surgery, consider talking to a different doctor too. I had my surgery in December on my left shoulder area and the graft in is an area that normally has a lot of movement, so I can relate to the concerns (although not nearly the same as the privates area, I know). My plastics doctor says I am healing as expected, but I have very limited mobility in that area right now (almost 6 weeks later). The truth is that grafts take a lot of time to heal and you will need to be patient with the process. Also, doctors can't really say how well your mobility will be until you completely heal--and even then, physical therapy may be needed to help. My plastic surgeon tells me in my case to expect 80% use of my arm at best. 2 other doctors are telling me that I should have no limitations at all... so I've decided that none of them know for sure and I will have to be patient and wait to see how it all heals up. Hopefully you have a good support system in place and that will encourage you and help you on this journey! I'll be praying for you--that you have clarity before the surgery and that your procedure goes well! God Bless!

ryan and family
Posts: 15
Joined: Jan 2012
ryan and family
Posts: 15
Joined: Jan 2012

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ryan and family
Posts: 15
Joined: Jan 2012

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ryan and family
Posts: 15
Joined: Jan 2012

Zing77s, your advise and experience has been very helpful with reconstruction. Our Son was diagnosed in December, and with 3 surgeries including a split skin graft to cover a 5cm margin, is healing very well. We will take our time with 3 month follow ups and will consider additional reconstruction down the road. Your comments were greatly appreciated and we were prepared to ask the right questions. Best, Ryan and family.

Fedeyks
Posts: 6
Joined: Feb 2012

I was diagnosed with DFSP on January 13, 2012 .... Since then I have tried to find out information on this rare skin cancer. It is rare. I live in Edmonton, Alberta, Canada. I do have a Dermatologist that does MOHS surgery but there is trouble finding a surgeon to do the 'repair/skin graft' surgery. My tumor is 2.5cm x 2cm in size and has been on my mid-back close to the spin for 25 years. I have been ignored by doctors. This is my second cancer diagnosis (breast cancer in 2006) so I don't want to wait to deal with this. I have had a hard enough time with the breast cancer and am finished my five years of Tamoxifen on April 16 of this year, so would really like this cancer done sooner than later as well.

I have found the Mayo Clinic in Rochester, Minnesota to be specialized in this cancer and have contacted them, does anyone have any experience with them?

I have tried alternative treatment in the meantime as I have nothing to lose .... Castor Oil, Cannabis Oil and TCM Acunpuncture, which I can tell you has started to change the color and size of the tumor/area.

I understand it can reoccur and I have no control over that. It seems like the recovery is the hardest part.

I would love to hear from anyone (especially Canada).

bdahl71
Posts: 1
Joined: Mar 2012

Hello Fedeyks,

My name is Brenda and I was also recently diagnosed with DFSP too.
For the past 18 years I have had this mark on my shoulder and have been told by doctors that it was broken blood vessels caused by a softball injury. I had a biopsy done about 12 years ago and was told that it tested negative for cancer and once again it was probably broken blood vessels or varacose veins. The week before Christmas I went to see about having a cyst removed that had developed at the top of this mark, my doctor who has had experience with DFSP knew the mark on my shoulder was more then just broken blood vessels. He sent me to a Dermatologist who also knew something about this type of cancer, he took five biopsy's and all five came back positive for DFSP. I have been told that once it is removed I will be ok, it still scared the crap out of me. Mainly because of how long it went misdiagnosed. Two weeks ago I went through surgery, my doctor did a wide margin excision the size of a softball (I am sure there is some irony there). Because the DFSP had reached my muscle, he had to remove the top layer. The plastic surgeon who did my skin graft, did an excellent job. The graft was done immediately after surgery, he did sew a sponge on top of the graft which stayed in place for a week. Last week, he removed the sponge and the graft has taken 100%. My regular doctor has also informed me that the margins he took during surgery came back clean meaning all of the DFSP was removed. I am still a long way from full recovery and have been referred to an Oncologist for future followup. I am confident that my future is just as bright as it was before the DFSP. I am just glad I was finally diagnosed correctly. There is a youtube video I found that was made by a doctor at the Mayo Clinic, it really helped me understand this type of cancer as well as calm some of my fears. http://www.youtube.com/watch?v=FGMhW8IyrzY
I wish you all the success in the world and may you too have a very bright future a head of you.

Rangegirl
Posts: 3
Joined: May 2012

My name is Kim and I'm so thankful to have found this group. Like you know, finding any really good info other than the medical definition is sort of hard to come by. I have had more of my questions answered here than anywhere else.

I was diagnosed on May 1st of this year. First started with my regular doctor. Showed her this itching bump at my waistline about three inches from my spine. She biopsied and immediately referred me to a dermatologist. After he spent a good hour with me (calming my nerves) he told me he I had two options. I live in northern MN so he said either the Mayo Clinic or the University of Minnesota in Minneapolis because they were the best in dealing with DFSP.

This is for you, Fedeyks. He set me up with the head of dermatology at the U. The doctor's name is Dr. Peter Lee, and a doctor who has extensive knowlege of the Moh's precedure. In fact, my dermatologist said that if it were him, he would go to the U over Mayo Clinic.

bdahl71: I also found the youtube video from the Mayo. It helped me understand this disease but finding this small group has done wonders for me.

My surgery is set for June 7th. I'm nervouse because being 56 years old, makes me wonder how long the 'beast' has been growing.

Reading through all the posts have helped me stay positive. I know the recovery is most likely going to be the worst part. My problem now is waiting for the 7th to roll around so I can get on with this and know where I'm going as far as recovery.

Hugs to all of you!

Jeen's picture
Jeen
Posts: 24
Joined: Mar 2012

My story is probably the same as so many of you. I noticed a small lump on my trunk, about 13 months ago. Since I had breast cancer 5 years ago, I went to my breast surgeon and oncologist, and both said multiple times that I was being over anxious. Over the course of the year, I went to my dermatologist twice, who also said it was nothing. Finally I convinved a surgeon to remove it, as it had grown to the size of a pea.

Fast forward...a diagnosis of DFSB on the first lump. I had a Moh's with good 3cm margins. The night before the surgery I found a small second lump, and I am waiting on the biopsy results for that.....

It's nice to hear other experiences, because I have been so mad that I told 5 doctors, after already having had cancer, and they ignored me.

Fedeyks
Posts: 6
Joined: Feb 2012

As well, does anyone have a list of questions to ask prior to seeking treatment?

zing77s
Posts: 6
Joined: Dec 2011

I had DFSP surgery in December 2011 on my left shoulder area with a skin graft to reconstruct. My surgeon used the wide excision method (not MOHS) and the closest margin came back at 2.5cm. I'm still in the healing process with my skin graft, but am well on my way to full recovery. Mine was completed locally here in central Ohio, so I can't speak to the Mayo Clinic. I do know that there is a doctor from Mayo who posted a video on YouTube with lots of info about DFSP that helped me... http://www.youtube.com/watch?v=FGMhW8IyrzY

Given that your tumor has been with you for 25 years, I would make sure your doctor send you for a CT scan. I was given one for my diagnosis (because I had my tumor for 5 years). Even though this cancer rarely spreads, it can, so it's important to know before surgery what treatments you truly need.

As I said in another post here, the most dramatic part of this process will most likely be the reconstruction. Once you and your doctor decide how to remove the cancer, and you have the surgery, it's gone... however, the reconstruction choice will be with you for the rest of your life! So lots or discussion needs to be had on that part of the process! With your cancer being on your back, it might be a lot more straight forward than it was for me (since shoulders move different than backs).

Hope things go well for you! Feel free to post any other questions as I still check in here from time to time to offer any support I can give to those going through this. God Bless!

frangipani8
Posts: 1
Joined: May 2012

Firstly i'd like to say sorry for hijacking an american board but haven't been able to find any other group on my side of the world and when i happened upon this group, i felt much relief ;o)

Zing77s - I am so thankful for your posts back in Feb as from the sounds of it your DFSP and surgery seems very similar to my own experience and what i am about to embark on. My surgery is scheduled for next Tues 29th May.

I was diagnosed with DFSP just 2 weeks ago after electing to have a small (15mm x 10mm) lesion removed from my upper R chest that had previously been biopsied and diagnosed as a benign dermatofibroma. As far as i can remember, i'd had for up to 2 years and am very glad that i opted to have it out anyway!

From that initial cosmetic surgery, i have a 7cm scar which of course did not get the whole tumor. I've been referred to a plastic surgeon who interestingly said MOH's surgery wasn't an option given this type of cancer, and has elected to remove it using a wide and deep excision (3-5cm around the entire wound) down to the muscle layer. Which begs me to ask those that have had similar surgery, do they remove the fascia layer as well?
They will also need to repair the "dent" with a split skin graft from my thigh. My own internet research has indicated MOH's surgery as the best or most widely used option so i am relieved to read of your experience Zing77s and am interested to know how you are going 3 months on since your last post? With your wounds and movement?

I'm not looking forward to the skin graft as i've heard it tends to be the most painful part and am concerned about the thinness of skin that will cover my wound, and restricted movement. My surgeon really didn't give me much info on that and certainly didn't mention a wound vac? My graft will be done at the same time as my surgery and i'll be home by late arvo of the very same day.

My hope is that they will get it all first (well, second really) time round (don't we all?) and i will likewise be trusting in my saviour through all of this. ;O)

Will let you know how i go ...

natmcg
Posts: 119
Joined: Jun 2012

Hi, I have also turned to this information and case history board. I haven't stopped reading and rereading everyones input since I found out I have DFSP last week.(29th June). Your right there doesnt seem to be anything helpful on the Aussie cancer sites. I'm having problems with my wound care(op was done day after results of biopsy) the area is irritated by any kind of adhesive tape even the type made for sensitive skin. Does any one have any suggestions on what I can do,as I will be having more surgery as clear margins have not been established and the issue of recovery is really worrying me. But some how I'l have to manage as so many already have.

I hope your doing ok since your op and have a good result.
Where did you have your surgery done? Im in NSW not far from Sydney.
All the best
Nat.

zing77s
Posts: 6
Joined: Dec 2011

I should add that my doctors said MOHS wasn't absolutely the only way to effectively remove the cancer. MOHS is more important in areas where you want to keep as much original skin as possible (ie, face, scalp, etc.) Wide excision is effective too, but more a few more cm are usually lost during the surgery. Ultimately, each person and doctor will be different, just thought I'd throw my 2 cents in on that...

manish.abz
Posts: 1
Joined: Mar 2012

I have detected small cyst on scalp on Nov 2011. I have shown to a doctor and as per him its due to Oil gland Blockage.
After that I have taken Homeopathic medicines for two months but no results shown
It has grown to a size nearly 2X3 cm by Feb 2012.
I have got it operated on 2nd March 2012
Biopsy reports of tumour shows Spindle Cell tumour with intermediate morpholic features but recommends IHC 6 Markers test for further analysis.
IHC 6 marker reports opinion is Dermatofibrosarcoma Protuberans (DFSP)
I have consulted Sr. Oncologists and all of them advised for MRI Brain Contrast and wide-area excision.

I have got the MRI, wide area excision followed by plastic surgery done on 16th March 2012.

Thanks for this blog, it gives me confidence of recovery. If anyone need more details can contact me @ manish.abz11@gmail.com

Mikey77
Posts: 2
Joined: Apr 2012

I was diagnosed with DFSP on January 13th 2012, it started with three small bumps on my forehead. Went to a dermatologist here in northern wisconsin and they biopsied them. Test came back positive for DFSP so the next step they sent me to UW Madison under the care of DR. Steven Snow this man work under the founder of MOHS surgery DR. Fredrick Mohs for people who do not know what MOHS stands for. Anyway they did a wide area excision on my for head about 5.6" wide by 7" long. The wound starts about 1/2 inch above my brow line and goes to the middle of my head. All tissue and muscle was removed to skull and after 8 surgerys all margins were finally clear. Two weeks later I was sent to a plastic surgeon who installed a graft on my skull with a graft jacket to get live tissue growing again so they can place the final skin graft on top of it. The first layer was a donor skin. After the graft they installed a wound vac which helped tremendously over the next couple of weeks. I am looking at having my final graft before may 1 2012 and hopefully on the road back to normal. Great site and good luck to all!!!!

Mikey77
Posts: 2
Joined: Apr 2012

I recived my final skin graft the last week of april, they took the graft from my right leg. The doctors are very pleased with the way it looks but to me the wound is still pretty big. I know exactly what your going through and I feel for you because of the location of the cancer. Having a tumor like i and yourself removed from the forehead is horrible trying to conceal it as best as possible when you need to go out in public. Looks like we drew the short staws and I hope and pray your road to recovery is quick.

gayled627
Posts: 6
Joined: Jul 2011

I'm just reading this DFSP board and see your situation is similar to mine. I was first diagnosed back in '08' and had surgery to remvove 3 tumors. Went on Gleevec in '09' and now 3 years later the Gleevec isn't keeping the growth at bay. Just saw my doc yesterday and MRI shows it's larger and now I need to consult with a MOHS Dr., a radiologist and have my first CT scan (on my neck). I've had regular MRIs to monitor my forehead. I'm very concerned with how much the tumors have spread as it started above the center of my left eyebrow and has spread down to the same level of my eyebrow almost in between my eyes. Reading your story this location scares me because it's so close to my eye now.

My doctor told me I may need radiation after another surgery but I have yet to get all the tests done so my medical team can discuss my case. I feel in good hands with the drs. I'm working with. He told me I may lose all or part of my eyebrow and maybe a small part of hair at my scalp line if I need radiation treatment. Just sharing all this is freaking me out and I'm losing my focus right now. I'm glad I found this chat room and hope I can find folks to share and support with.

If anyone out there has had radiation treatment where there is hair, can you tell me if it grew back? I'm already dealing with a scarred and lumpy section of forehead and now am possibly facing more mutilation and scarring. Reading postings here is reassuring but also scary because this type cancer is so pervasive and hard to contain. Everyone has a different story which is educating me immensely and I thank all of you for that.

Thanks,
Gayle

sarahtim
Posts: 1
Joined: Apr 2012

hi im just recovering from my op to remove my tumor which was on my scalp,it took place 21st march 2012.how are you recovering ? dont know anybody whos had this sort of thing !i had plastic surgery to,donor area was from my leg ! god it was painfull !!!!! so now im waiting for my results,have you had yours ?

natmcg
Posts: 119
Joined: Jun 2012

Hi I'm an Australian with DFSP, this site is the best and most informative one that I have come across since I found out I had DFSP 2wks ago I have already had one op.but will be seeing another Dr.about Mohs nxt week as margins are not clear. I'm very lucky to have wonderful support from my GP & Skin cancer clinic. I've been worried about the eventual size of my wound and scar,(under my breast.) But after reading your posts(& others on this site) I realize Im being silly. No one will see my scar. I am still concerned about the size my wound will reach as my tumor started over 10yrs ago, then was misdiagnosed as fatty nodule by ultrasound in 2004. Thankfuly things have moved along quite quickly in the last 2wks.

Wishing you all the best in your recovery.

Nat.

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