Cancer Survivors Network

NT

I saw that your dfsp was located on your left leg. Just over a month ago I had 2 back to back mohs surgeries to remove dfsp from my left lower leg and a skin graft a few days later to close the incision. The doctor who removed the sarcoma, a dermatologist, told me that it is highly unlikely for this type of cancer to reoccur and didn't recommend any follow ups. Since your dfsp was in a similar area as mine, I was wondering what your doctors told you about recurrence rates and follow up treatments as I am debating whether I should seek a second opinion. Any advice you can give me would be greatly appreciated.

Please get the follow ups. This cancer has a high reoccurence rate. My son has been dealing with this for of cancer for over 5yrs now and is currently taking Gleevac. It is also recommended that you see a oncologist that specializes in Sarcoma cancers as this is a rare cancer most physicians are not that familiar with it.

Hi,

My 8 year old niece was diagnosed last week and has it on her right leg, they took x rays on friday and we are afraid it is in her lungs although they haven\t confirmed cause its the weekend, they did leave a message stating her surgery would be Tuesday.

Is this a cancer that can be fought off long term or should be even more worried ???

my 14 year old nephew has cancer for 10 years but not this kind so i am wondering if you know cause i am not finding much i understand. i live in Canada.

Any info, good or bad but honest would be helpful.

\thank \you

I'm a recent survivor of DFSP. I was diagnosed just about a year ago to the day. I had a "nodule" on my abdomen and my PCP sent me to a plastic surgeon to have it removed. I had the option of having it biopsied first but given it was bleeding at that point I just wanted it removed. The tumor was not terribly big but I had about a 5 inch scar. the pathology report showed it was DFSP but I didn't have clear margins. I had another surgery - a wide excision which took even more tissue. I now have a 13 inch scar across my abdomen. A plastic surgeon performed this surgery with a pathologist in the OR. I also consulted with oncologists prior to surgery. My surgery was successful, I did need one more reconstructive surgery about 3 months after the wide excision. The recovery was extremely difficult as I could not sit up on my own after two major surgeries. I was hospitalized for a bit less than 3 days.

My long term care has been with a sarcoma clinic with regular physical exams and tests and I'm in remission almost a year now.

My best advice for anyone with DFSP with its high recurrence rate is to work with a plastic surgeon or a dermatologic surgeon to remove the tumor and do reconstructive work. But it's just as important if not more so to seek out a cancer/oncology facility that has a sarcoma clinic for your ongoing care during remission. Be proactive, don't wait.

I am a 2 year survivor. I didn't have the MOHS surgery which is highly recommended but so far so good. I was diagnosed January 31, 2007 which was on my back. I get check ups on it every year.

i was diagnosed last august and had the mohs procedure to excise it. i just found out yesterday its back and i just read about gleevec. i read about it on emedicine.com, and also have the same qeustions as you. i have a 7cm scar on my neck from the first excision and probably will have another scar the same size and do not want to have to keep going through this every year. if you get any good info on the drug therapy please let me know

I opted for the more radical surgery, CCPDMA. It stands for "complete circumferential and peripheral deep-margin assessment." I had clear pathologic margins after this procedure that was done on September 2, 2008. I will be having a body scan later in the month. At this time I will not need radiation or Imatinib mesylate therapy. Access www.nccn.org for DFSP. It discusses clinical practical guidelines for our cancer.

Good luck,
Rancho

Rancho,

I've seen the CCPDMA procedure in the NCCN guidelines. You're the first individual that I've heard of that had this procedure. Where and who did the surgery?

It seems hard to get a good recommendation on a procedure. If you go to an oncology surgeon they recommend wide excision, if you go to a dermatologist they recommend Mohs.

Thanks,

Greg

Hi! I'd like to know if you have used the gleevec for your dfsp since you posted your message last year. I am about to start it soon (May 2009) as a first line of treatment to avoid mutilating half of my face with a surgery. I do know the stats about the possible responses of the tumor (57% complete and 83% total, including partial resp.). I'd like to know if you have experienced similar results and what side effects please...Thanks

Hi Steve,

I am curious about the two patients where the DFSP had spread. Do you know where the primary lesion was located? Into which organs did it migrate? How was the one treated that had spreading and is still alive? Sorry for all the questions. The medical center where I was treated, has seen very few cases of DFSP. Luckily, my surgeon is a personal friend with whom I work and I knew going into the procedure what a great dissectionist he is. My incision was quite large also (about 10 inches) and was in my groin. My wife also noticed how different the tumor it looked; it was like your description. I minimized the whole thing but she insisted I had someone look at it as I work at a med center. Since surgery, my walking has been a little labored and I will be off work until Oct. 6. I am a runner and plan to work hard to be able to run at least one half marathon before the new year.

I will fire a few prayers your way on the 23rd. I plan to check out the rare cancers website.

Craig

Craig,
I hope you are back to full speed real soon. It sounds like we both need to thank our wives for pushing us as I too tried to dismiss it as nothing. I didn't think it was any big deal. I almost didn't have it removed as the doctor said it was mostly a cosmetic issue and I didn't want to be tied up in the summer.

As far as the two people who had it spread, it was tough for me to hear the story. The one fatality was a guy my age. It started in his shoulder and it was removed. When it returned, he said it traveled pretty far which is unusual for DFSP. I think he said it ended up in his lungs but I'm not 100% sure. He definitely said one of the favorite place for soft tissue sarcomas to travel is to the lungs which is why he sent me for the CT scan but I don't know if that was the case with the guy who died. I don't recall what he said about the other person. I'll ask him again on Tuesday when I see him.

Thanks for the prayers. Tuesday is a little more intimidating for me after my consultation with the plastic surgeon. Given the location on my back and the fact that this is my third surgery so there is not much excess skin remaining, he is going to make multiple crescent shaped incisions down my back to rotate skin around after Dr. Watson removes the additional tissue. He will leave in multiple drains too which doesn't sound fun. It sounds like I'll be laid up for a few weeks too. As soon as I feel up to it, I'll put up a post after my surgery to let you know what I find out.

If there is any other info I can provide, let me know. Feel free to ask me anything as I’m happy to help. Given the rarity of this thing, it’s helpful for me to chat with other people in similar situations. I'm rooting for you to hit your marathon goal. Hopefully this will be a distant memory for both of us by next year.
-Steve-

Steve,

My incision will show definite scaring but because he was able to fold and pull the skin, plastic surgery was not needed. My surgeon had to do some creative overlapping but opted not to place a drain. The way he sutured it, it drained by itself anyway for the first week. At time the sutures were removed 15 days after surgery, I had a serotoma (fluid in the wound) which needed further draining (about 10cc).

I was also told that the lungs were a target for spreading. I'm looking ahead to my body scan and I feel pretty confident. I have been walking 1/2 mile a day with just a little pain. I ordered some new running shoes, Cubs cap and wind shirt but had to promise my wife I would not do any running till at least mid October. ( Although I have been on the west coast a long time, I am from Chicago and have always liked the Cubs).

I will pass on any new info I acquire. I am a clinical scientist, so if I can help you with information let me know. Try to enjoy the rest. I know plenty of work will be there when I get back but that's O.K. Although my colleagues have missed me, they have been very supportive and want me to take my time. I plan on it.

It is nice to have a person to talk to and for sure this will be behind us as we continue to be cancer survivors.

Craig

My son also has his lump on his back. I posted on the DFSP part of this board. He already had the tumor removed a couple of weeks ago and the pathology report came back as DFSP. He goes back for more extensive surgery next week. His tumor was the size of a golf ball so I am terrified they are going to take a huge amount from his back?? The tumor had been growing for 10 years. They had diagnosed it as a cyst and he even had it drained 5 years ago. I pray it hasn't spread. This site is so informative and helpful. I just wish people came back an updated their postings. My son may have a spot on his hip also that he hasn't even shown to the dr. yet. I am worried after reading postings that it may be too late to perform the MOHS since his tumor has already been removed and that it was so large. If anyone has any knowledge of this it would be helpful.

Thanks,

A worried Mom

Steve,

I'm glad to hear your surgery went well. Antibiotics sound like a good idea. The last thing you want is an infection. Thank you for the info about the two patients. Lymph node involvement is the scary thing about our cancer. I seems like for both of us, it will not be a problem.

The radiology department took about 300 raw images of my torso. Collating the images and having them read by a radiologist will take about four days. I see my surgeon again on October 1 and will get the results of the scan at that time. I'll let you know the results. I may be going back to work on October 6. We'll see.

One challenge I've noticed is stamina. My body is used to more exercise and it isn't getting enough. I'm working on it and know it will improve. My wife has been wise and so supportive. Usually I'm the problem solver and "go to" person.

Heal well and avoid any backslapping friends!

Craig

Steve,

Thanks for letting me know about this forum. I looked several years ago when I was diagnosed and I'm pretty sure there wasn't one for DFSP at that time.

Just to let everyone know a little about me I'm a 48 year old female with a mixed up diagnosis for DFSP. When I finally found out on my own by reading my pathology report that was three and a half years old. I had been told that it was benign by a surgeon that couldn't read. I had MOH's surgery to my right hip one day (3 times to surgery) and then followed up with more surgery and reconstruction the very next day. Total seven inches across and down to the muscle. I am fortunate to have good dr's now but wasn't so lucky back in 2002.

I'm doing well now (2 1/2 years) after surgery.

ttyl

Hi Steve, Are you going to have to have radiation now that the surgery is over with?
Congrats on getting the stitches out next week!
Best wishes,
DaisysMom

Steve et al.,

Steve, I am pleased about your good news. Keep healing! My scan came back with a spot on my liver. Lungs, spleen, pericardial and pleural areas, viewable lymph nodes, pancreas, gall bladder and adrenals were all clear. I have an MRI for my liver this Saturday (Oct. 4) and will have results later next week. I feel healthy and plan to start running mid October. Hopefully, the spot is nothing but I am glad to be having more confirmatory testing. I will let you know about my results. I am going back to work on Oct. 6.

Take care,
Craig

Steve,

Thanks for the information. I am feeling really good and sense that my spot is similar to yours. Mine is 2cm by 3cm in size and I'm hoping it is a hemangioma, which is a dense cluster of small veins and arteries. I will let you know my results when they come back. Hope you're feeling better.

Craig

I just posted this at the www.sarcomaalliance.org site as well. Here is a good link to a very comprehensive article about DFSP/FS-DFSP and Glivec (Gleevac, Gleevec).

http://www.glivec.com/pdfs/G0039%20monograph.pdf

Hope you find it helpful.

Gail
FS-DFSP 2 years NERD
left pelvic area of trunk
surgery to remove primary tumor, followed by resection, followed by 7 weeks radiation

Hi Steve,

I had my last consult with my surgeon today (Oct. 21). My liver spots are complex cysts. My next check-up is in one year. I am back to work and my stamina is good. Hope all is well with you. Take care and thanks for walking the path with me.

Craig

Craig,
I hope everythng is still going well for you. I just had my second post surgery check up and so far so good.

I just wanted to let folks know there are two groups on facebook where people are talking about their DFSP experience. Some folks have posted pictures there too. There are 2 groups:

Dermatofibrosarcoma Protuberans - has ~ 40 members.
DFSP - DERMATOFIBROSARCOMA PROTUBERANS - has ~25 members.

You may want to check it out.
I hope everyone is doing well.

Hi WillemwithaV
I hope you are still well & optimistic. I had neither MOHS nor wide excision; my surgeon didn't recognize my lump (on my back, at age 26) as DFSP so he left 0.5 mm margins, no testing. That was 14 years ago and so my fingers are crossed that a lump in my leg isn't a new site. Could you tell me who your doctor was? I live in Boston too and am hoping he is still around.

Thanks for your post and for your optimism. Stay healthy.

Hello, I've never posted so I don't know if this goes to one person or a messege board. I'm Rachel and I'll be 27 in a couple of days. I was diagnosed in 2006 and have had clean scans since my surgery (mass excision from my hip), leaving a scar that goes from my spine and wraps around my left hip. My oncologist determined radiation was not necessary.

There have been no problems since then, but now I have another lump on my leg. This feels the same, but it drains. The DFSP on my hip did not. Its been there for several months now and I'm not sure whether it needs to be biopsied. Has anyone else experienced drainage (just a little oil) with their DFSP? I'm working on my PhD and trying to get through the semester. I don't want to go through this again if I don't need to. Any advice would be appreciated! Thank you, Rachel

Hi Rachel,

I did not have drainage with my growth but had pain. I hope you have had it checked by now.

Sheila

Hi Everyone,

It is good to read other people's experiences with DFSP. Apparently I am the first case in my medical town of having DFSP on the face. I was DX in April 2009 after having a mass removed from under my right eye. I was sent to a plastic surgeon and they removed a area alittle smaller than a tennis ball from my right cheek and lower eyelid area. My surgery was on 4/29/09 and I am continuing to heal. I went to an oncologist this week and they will do a MRI at the end of July to make sure nothing has come back. We will go from there. The oncologist told me they might have to send me to another city or state? because this is rare especially on the face. Has anyone else experienced this on the face?

Hi cdodgin,

Mine is on my upper left shoulder and about one inch across. My growth was there for a little over 9 years. The first biopsy in 2000 showed dermafibroma. I do not know when mine turned to sarcoma. They removed my growth with the expectation it was still a dermafibroma and had no clear margins in either direction. I go back 06/02 for moh's surgery. How big was your growth before they did your surgery? I am new to this as well and never heard of it until this month.

I had DFSP on my back, i m 27 yr old,i had it removed when i was 14 which it was not sarcomas one, then 9 years later it started to grown again i wait for 5 years to get it removed cause everytime i went to the doctor, they said you can love with it, it's nothing. until it brothering me and i got it removed. i did wide excision the size 2 by 2 inches by i have 15 cm scar. I want to ask what are the procedure the doctor do to you when you go for follow up. I have to follow up every 3 months for 2 years. Hope you are all stay healthy !!

You are not alone! I was diagnosed with DFSP last June after notice a small lump running just above my left eyebrow to just below my hairline. My primary dr thought it was a cyst and referred me to a plastic surgeon to have it removed. The plastic surgeon did not agree with the cyst diagnosis, but did not think it was anything serious, so it was removed in his office without a biopsy. After it was removed, he knew that it was indeed serious and sent the tumor off for a pathology report. I received the diagnosis a week later. Since then I have had two surgeries to remove additional tissue, and finally received the wonderful news of a clean margin this past January. In between surgeries, I tried a round of chemo - Gleevec - which had shown promise in others with DFSP, however, my body was unable to tolerate the drug and I had to stop after just 3 weeks of a scheduled 12 week treatment plan. I truly feel for you. Most people with DFSP are able to "hide" the scars and no one is the wiser, but when it is on your face, it's a little harder to do. I've changed the way I wear my hair and can cover up most of the scars, but not all of them (they start above the middle of my left eye and run across my forehead to just above my left ear, and from the front of my scalp all the way back to the crown of my head - the surgeon quit counting after 50 staples).

Best of luck with your recovery!

Cheryl

Hi everybody,

just to add my story as well. I am 34 and I was diagnosed with DFSP on the right upper chest about five months ago. I had the tumor for ten years. I had it checked regularly because I could see it was growing, slowly, but stedily. It was always wrongly diagnosed for a bening cyst, or for a scar. I have to say that luckily at some point, the tumor became painful, which pushed me to go to the doctor more and more frequently. Usually I would just get antibiotics, because doctors thought it was a cyst that would get inflamated. I was lucky enough one day to meet a different doctor that adviced me to get a biopsy done on it. The biopsy clearly showed it was a DFSP and had to be removed. I had Mohs done, at St. Thomas's hospital, London, uk. They took out the tumor mass and an additional 1cm all around it. THe 1cm rim was then analysed to check for tumor roots and found to be free from it. This left me with a 13 cm long 6 cm wide hole on my chest, no skin, no fat, down to the muscle. It was patched up by a plastic surgeon using a skin flap from the side of my chest. I have to say the skin flap looks really bad. THe shape of the area is different than my healthy side and I wonder wheather it will ever go back to a more symmetric and normal state. Of course I shall be glad the tumor has been taken all out. I will have regular check up for the next five years to check for recurrence. I did not have to do any radio or chemo therapy. Throughout the procedure I had minimal pain, eventhough I was given very strong paikillers (including morphine). I hope things will soon get back to normal and I can get back with to my every day life.

Hi Codyredd
I hope you're doing well. This is my first post, and your message (of all these helpful messages) is the most similar to my experience.

When I was 26 I noticed a small lump on my back and was told by my doctor that it was a harmless cyst. Within weeks it had grown a lot, and clearly was anchoring itself in place, I could no longer wiggle it around. I was really alarmed because my mom died of breast cancer quite young. I had it excised a few weeks later by a surgeon who patronized me with a lot of talk about wanting to avoid scars. Even without knowing about DFSP, I knew I wanted a very conservative approach - I asked him to please take as much tissue as he needed to get it all; I didn't care about a scar. The tumor by then had grown through the fat and into my muscle. Sadly, I learned a few weeks ago that he left only a 0.5mm margin. The doctor who made the diagnosis of that tumor in 1995 mistook it for a dermatofibroma, and told me it was harmless. I sort of forgot about it for years.

Now I am 41 and have had no re-occurrence on my back. But I recently started to worry about a similar lump on my left leg that has been there for 6 years. Again, at first I was dismissed by my doctor and told that it's just a cyst. I have insisted that it be removed, and it will come off in Sept. I am really frustrated by the lack of "homework" by doctors; the dermatologist I saw this month for my leg lump had never heard of DFSP. Now I know I was very, very lucky to have no return on my back, despite a very small margin. I'm trying to get someone to look at my first pathology report. I am wishing I had done radiation back when that first lump, on my back, was removed. My fingers are crossed that the lump in my leg tests negative.

I don't feel I deserve to call myself a cancer survivor, because I only just found out that I had it back in '94. But I thank all on this forum who have posted your comments. My prayers are with you. If anyone has had lumps appear in another limb, can you describe if the second looked just like the first? Or if you found a good doctor near Boston, Massachusetts, please reply.
Thank you.

Hi beabaker,

Oh I just wish I would have checked this discussion board sooner! I checked it for a few weeks after my post and then just kinda forgot about it. But I have to be honest, when I saw your response it just about brought me to tears! First off, I DO feel that you deserve to call yourself a cancer survivor...BECAUSE YOU ARE!! But I can totally relate to that feeling. Sometimes I feel like since I tried to make as little a fuss as possible about my situation and that I never had chemo, that I don't deserve to be in that category either. I hope and pray that the lump removed on your leg came back clean! Please let me know! I will be praying for you. Did it feel and/or look like your first lump? I can't tell you how much I have been hoping to find someone that could relate to my frustration with these docs. I mean they are great and all, but I am still having issues with mine...
I had my first round of scans done in late July. WHile they saw nothing but scar tissue on my back, they had a nurse call me and tell me they saw "something" in my lower bowels! I was referred to a G.I. specialist for some more tests and am still not really sure what the results are. They seem to have no knowledge of my cancer either and sort of acted like I was very low on their priority list.
I know that there are so many more people who are in FAR worse shape than me and I pray for them every day, but this **** (pardon my French) is just so frustrating sometimes. The one year anniversary of my diagnosis is coming up and I am finding myself being alot more emotional about it than I thought I would be.
beabaker, I hope this message finds you in good health AND good spirits! Thank you so much for responding to my post and for addressing me directly. It means alot.
God bless you all

Hi, This is my first post to this board. I have had a lump on my upper center chest for about 20 years. I went to various doctors, none of whom wanted to do anything since they thought a biopsy could disrupt the tumor. Well, the tumor got bigger and developed into a mass that I guess I always thought was manageable, until my diagnosis with dfsp a few weeks ago. The physician did three biopsies and it seems I have a few new lumps now, which I had feared. Surgery (wide excision) is scheduled for July along with reconstruction of the area immediately following. They did a CT scan and PET scan and it showed my body to be free from dfsp elsewhere; but I am now afraid it will spread elsewhere, especially lower in my breast, given my new lumps.

The surgeon had not heard of this disease; but the reconstructive surgeon had and he said he had a patient several years ago who had it. I have considered going to Hershey, where some dermatologists have done the Mohs surgery technique; but how they will reconstruct is unknown until they are doing the surgery, and I would like to have more control and say in what occurs upfront.

By the way, my mass, including the lump that cannot be seen, is 7cm large; huge.....

I am soon to be 56 and have three biological children. I am a full-time professional who is very active; and while I might be a little overweight, I am in relatively good shape and eat well--I have been a lacto-ovo vegetarian for about 30 years.

I wish all of you well; it is hard to think that this could spread for any of us and not be treated. I have read that hypertherapy, the use of high temperatures, can increase cellular health; so I have been going to a sauna for thirty minutes a couple of times a week and am planning on buying my own to assure I can detox.

I will keep you all in my thoughts and prayers.

JC

JC,
I hope everything goes well for you. The good news is that DFSP rarely spreads and hopefully that will be the case for you. I check in once in a while on a few sites and facebook to see how folks are doing. The site below has some recent folks with similiar experiences. In addition, if you are on facebook, there are a couple of sites with a folks dealing with DFSP with a wide variety of exeperiences if you want to check it out.

http://www.rarercancers.org.uk/forum/view_topic?topic_id=291

Good luck with surgery.
-Steve-

Hi, Thanks very much for your response. I am really trying to get into a clinic to be assessed for possible MOHS surgery; but I can't get in until September!! I don't want to wait that long.

JC

My first post on this site which I joined today.I am a survivor of dfsp to my left cheek.
I would like to say after much research of the different procedures Mohs is by far the best for dfsp simply because it is done at the Microscopic level and less apt to miss a tiny area.
I lost my parotid Gland,my facial nerve,muscles and a lot of facial skin tissue to my left cheek the size of a hardball. A large flap of donar skin tissue was taken from my upper left
leg to do the reconstructive surgery.There is no covering up this skin graft its large and
was light in colour compared to my tanned face.Since the healing process has now finished
my reconstructive surgeon gave me the ok to use self tanner to darken the area but it is still very obvious.The pathology report was well above 95% succesful approaching 100%

JC keep pushing to get the Mohs Micrographic surgery,the after surgery records speak for themselves,very high success rate after many years. There is much more to my story but these
comments about Mohs are what I want to strongly recommend.I'm a strong healthy 65 which
most can't beleive I'm retired. My dfsp was a classic case,a small hard spot on my cheek for
probably 15 to 20 years,my family physician mistook for scar tissue and dismissed it. In
March 2009 an agressive Tumor grew over 5 weeks to a golf ball size which was surgicly removed,thats when the biopsy reveiled dfsp. A final comment,the physical scars we receive are one thing but who helps us with the emotional scars we carry inside.I'm glad I have family
to support and encourage me,I'm just trying to overcome how selfconscious I am of my "New Normal Look" I see the little children whisper, "Mommy look at that mans face", I love kids and have Three grandchildren,this part of rising above our infermity is not easy.

Hi JC

I too had a tumor (on my left shoulder). It was removed last summer with Mohs procedure by a doctor who was familiar with the tumor and the procedure. I urge you to find a surgeon who is familiar and has performed this surgery before. I feel confident that my Dr. not only knew what he was doing/dealing with, but also that he removed all of it. As low grade as this cancer is, we are fortunate that this is the "cancer" we have - if we must have cancer. But why not have the best take care of it from the beginning? YOU are worth it. Travel far if need be and have it done with the utmost confidence that you can live life with no worries. But do make your follow-up appointments for the next 3-5 years. I wish you the best.

Sincerely.

Hi, I appreciate your reply. I want have the MOHS procedure, but I am finding it difficult to get into a physician to have it done soon. I really don't want to wait unti Septembr. I am willing to travel. It is so hard to find information about physicians who do this type of surgery. How did you find yours?

JC

JC

I live in OR and went to the website of the cutting edge hospital in our state (OHSU) and looked up dermatologists' at this teaching hospital and found my Dr.. There were others on the site but i chose him by talking to his staff and my local dermatologist who supported me and forwarded my case to him. He called me back personally, and 1.5 months later i drove 3 hours (w/ my husband) had it removed and drove home the same night. I returned for follow up to procedure 2 more times and now will continue follow up check-ups with local dermatologist.

Good luck.
All the best.

Hi, I found a surgeon who specializes in MOHS but I can't get in to see him until the end of August. My wide-margin surgery is scheduled for mid-July. I am very confused as I have read that the MOHS has a better outcome and brings a better prognosis. So, I don't know whether to go with the wide-margin or the MOHS. How much recovery time was there with the MOHS? Did you have extensive reconstruction? My lump is about 7cm, including the underlying mass. If I go with the wide-margin, they said there would be a softball size hole they would cover and reconstruct. I am leaning towards the MOHS, but I hate to wait another month. Any thoughts based on your experience as to which is preferable and why? Thanks. JC

Hi
That's great news. I am not qualified to compare the 2 different procedures. But from what I have read and discussed with my Dr.'s - Moh's was the route for me. My cut was a little over 10 cm wide and stitched with no graphing. I was home bound with little to no movement for my upper body for 1 1/2 weeks. Virtually no pain and healed great with best possible outcome. The size and location of your tumor sounds like a totally different case. Unless time is of the essence in your case, I would wait for the Moh's surgeon appointment. I'm surprised his/her staff didn't find an opening sooner for first consult. Are you on a list in case there is a cancellation? Maybe an earlier date will surface. Here's hoping.
steenie

Hi,

Thanks fo rthe info. I know that I will have flap reconstruction immediately following the surgery if I go with the wide-excision. The reconstructive surgeon is not going to graft, and I am glad of that; but since the surgeon has not done this type of surgery for this condition before, she has asked her superior to be there, too, and I am afraid she will take more than she has to.

Yes, I thought I could get in to a Mohs surgeon sooner, but one person at Hershey isn't available until September and the one at Geisinger isn't available until late August. I am on the cancellation call list, and I do hope I can get in sooner; but then I wonder if they will even do it. So, I play the waiting game and also have to make a hard decision within the next 10 days.

The reconstructive surgeon says I need to get this out now; I believe that, but I do think that most surgeons would have that view. Let's hope the Mohs surgeon is available soon!

Thanks for your good thoughts.

JC

I have been reading a lot about DFSP. Surgery no doupt is the first option. Mohs is more favorable than wide excission. But there is another pre operation option which is gleevec( IMATINIB). The majority try to use it to shrink the tumor size to be manegeably resected later in operation. Gleevec dose for DFSP is higher than for other tumors. There are side effects and depending on the individuals health. Maybe you can qualify for it . Problem is finding an ongologist for me. A genetic test is needed to find the fusion of chromosome 17 with 22.%90 of DFSP show this tralocation t(17,22). Which causes an over production of PDGFB a growth factor that DFSP uses to survive and grow,which Gleevec inhibits. %80 of DFSP cases respond to it,shrinking the tumor size, and up to total remission. Again An operation is needed at the end, and you will live with the scar outcome. I have a depression in my left upper jaw area 6cm by 5cm by 2cm deep dew to wide excission. That scar did not affect much my life only cosmeticly. I guess your worries are about the best ways to reduce the operations outcome cosmetically and functionally.
Till now I have not desided which way I will go for me. I will see my surgeon on the 15 july to schedule my operation . maybe I will take gleevec before it, I need to investigate.My tumor is in a critical parotid gland site, where the facial nerve passes and other muscles are located.
Best hopes for you to get the best treatment available.
My thoughts and prayers with you

Hi Sen,

Thanks for your reply. I will check into the Gleevec and will also try to see if I am get into the Mohs surgeon sooner than already scheduled.

I hope that your surgery goes well and I will keep you in my prayers.

JC

Hello Sen,

How did it go today? Did you schedule your operation?

JC

Hi,

When I met with my physician, I asked about taking Gleevec. He said that it could shrink the tumors such that the smaller spindles could break off and it would be harder to get all of the cancer; so, I am assuming that it is effective with some tumors more than others. I just wanted to let everyone know what I was told in the hope that we can continue to ask these important questions of our physicians.

Take care.
JC

Hi all --

I was intrigued by the comment about Gleevec causing spindle cells to break off, since a doctor that I met with said something similar.

So, today, when I met with an oncologist, I asked him specifically about it. Here is his answer (as close to verbatim as I can remember): Any tumor has the possibility of cells breaking off and travelling through the body, this is how cancers metasticize. With Gleevec, given the way it works, the drug neutralizes the cells, so that they are no longer cancerous. It works that way no matter where they are in the body.

We had additional discussion about it; the bottom line is that Gleevec does not make it any more likely that cells will break off from tumors, and is likely to help get rid of any that have done so on their own.

I hope this is helpful.

(My DFSP is on my right temple, I was meeting with the oncologist to enroll in a clinical trial; I will take Gleevec for two weeks before my surgery next month).

Carrie

Hello JC
The surgery will be on the 28 next tuesday. It will be by wide
Excission. But suspected margins will checked by microscope
During the operation( semi MOH)M Skin flap will cover the scar,
Which will cut from my upper back and rolled up under the skin
This way will stay attached to its veins. - consulted 2 oncologist
And both prefer operation then treatmentm Unless the site is not operable
.
There was jase75 here, well it is so hard to metastize from the left
Shoulder to. The right. Usually to the lungs.
Well take care JC .
You are in my thoughts and preyors
Hosain719@hotmail.com feel free to MSN .

Hi Steenie,

I see that you were treated for DFSP at OHSU. My 14 year old daughter was just diagnosed after a surgery to remove a lump on the back of her hand that we have been told for 10 years is a gangleon cyst. At this point we have not been referred to a new doctor as I was told there are very few who know anything about this. It has been almost a week and my Ortho surgeon has not had any responses from the 2 docs he is trying to reach at OHSU. Apparently they are at a convention this week. From all that I have read, it is hard to find someone who is experienced with DFSP. It sounds like you have had a good experience at OHSU which is encouraging to me. Can you please share your docs name and anything else that you would recommend for us? I am in my initial freak out stage and with it being my young daughter I am terrified of not doing the exact right things from the very beginning.

Thanks

idnar

Hi Jase75,

I am sorry this has happened to you; and I hope that you can find a way to go to have it checked. Actually, I have found that health care facilities are reducing costs of care for people who are unemployed, so perhaps you could find someone to do a check up for free or low cost. Some physicians might also do it pro bono, although I know that doesn't happen often; but perhaps there is a way for you to get the help and not worry about the payment. Some facilities are better than others in this regard.

I do know that the American Cancer Society does provide some financial support for people going through treatment for cancer, although the payment is based on income; however, if you call them you can tell them about your situation and ask for someone to see you given your situation. Also, they have lists of organizations in particular communities that provide assistance for people who have cancer, or are cancer survivors like yourself.

Since this is my first (after having a tumor for 20 years) experience with DFSP, I cannot answer your question about spreading; but it can reoccur, so I pray that you will get a check up soon.

Please keep us posted. I will keep you in my thoughts and prayers.

JC

Hello all :
My surgery is scheduled on the 28 next tuesday. It will be a wide Excission with Skin flap from my back. The flap will be rolled under
My upper chest ,the neck to cover my left jaw face area with all its arteries
And veins attached.
Well the oncologist suggested surgery then imatinib as adjuvant.
Yes I am too worried if I took the best decision. My surgeon
Said semi moh will be performed, only examinning suspected
Margins during surgery.
Jase75 It is a very long distance to metastize from the left shoulder
To the right. Usually it will go to the lungs or local. I think it is
Something else.
JC I will try to stay in touch on MSN
hosain719@hotmail.com
Best luck all and God bless

Hi Sen,

Thanks very much for the update. I will be emailing you to check in. I will keep you in my prayers.

JC

Dear JC:
On the 28 the operation was done. Thamk God it was a sucess
THe dfsp was taken from the superior left parotid gavity. Then a whole skin flap with muscle was cut then rolled up from my under arm lower ripcage with veins and arterier attached then tunneled from arm bit to lower neck then tunneled to jawbone earlope area. THen patched the old and the new operations site. A graft was taken from my right thigh to cover for the flap for the ripcage. 11 hours total surgory. Also facial nerve grafting was done. I stayed 16 hours in intensive care untill all signs were normal including a well irrigation to the flap. Anyway now 7 days into the the operation I feel fine with %70 strength. I will need therapy for my face and regular check_ups for the tumor site. Thank God that the bigest part of excising the tumor is over.
Hope the best for you and the rest in this forum. I remembered you in my prayers in intensive care and later days.
hosain

Dear sen0760,
I am happy to hear everything went well. Good luck in you recovery.
I am 38 yrs old & have had a reoccurence of DFSP. I first discovered a small pea size growth on the vulvar area 17 years ago. I asked my OBGYN about it & he said if it doesn't bother you don't worry about it. 10 yrs later I got pregnant with my first child & lucky for me I had to change doctors. Thank God! My new doctor immediately asked me about it & said as soon as I give birth he wanted me to have it biopsied. Due to the pregnancy the pea size growth became a plum size growth. My OBGYN took a small sample after I gave birth & it first came back as Dermatofibroma. He sent me to an Oncologist to make sure he was not missing anything. My oncologist scheduled me for an excision & the biopsy showed Dermatofibrosarcoma. 3 more surgeries to get clean margins & a skin graft later that year I was cancer free. It was 5 years & I found another growth in the same area late last year with the preganacy of my 3rd child. I had a wide excision on June 4th of this year & margins were not clean. I then had MOH's surgery July 29th of this year with a skin flap the next day. The doctors were able to get it all out. I am still healing with an open wound in a very uncomfortable area but happy to be cancer free.
To anyone questioning follow-up DFSP has a high re-occurrence rate so please go for your follow ups. Finding it early means any easier removal for you. I wish all of you the best.

Hello Hosain,

I am sorry that I haven't replied sooner; I am working full-time until my own surgery takes place, which will be on November 16.

I am so glad that you are getting your strength back. I can only imagine how fragile the procedure was and am glad that the biggest part is over for you. I am glad that they kept watch over you in the IC and gave you time to recuperate from the long surgery.

When will you have your next appointment?

With my best wishes and prayers,
JC

With DFSP yesterday, via phone call from my dermatologist. YAY! Can I say that was a joyous phone call! She said she tried to get me into University of Michigan but they don't take my insurance. She sounded nervous but at the same time was trying to be nonchalant. Since getting me into U of M didn't work out she set up an appointment with a surgical oncologist for next week. I'm petrified! My mom just passed away on May 3rd of this year from lung cancer and I was there taking care of her.

Initially I was told the growth was a cyst. It's been there for more than 5 years. It has been injected twice with steroids. I'm concerned as to what effect this will have it. It's located on my upper chest, close to my shoulder. It's been painful for three or four years.

I'm in Grand Rapids, MI and am wondering if it would be better for me to go to a University or maybe head back to the Bay Area of California where I'm from for treatment. Any ideas from people that have been through this?

Hello to all especially to JC, terminator and Rebecca:
Well it is almost 7 weeks after my surgery. I feel fine my scars are fading away.
I only have facial muscle exercises as therapy. My doctor said that my facial nerve should be growing half an inch each month,so total recovery is expected in 6 month.I lead a relaxed kind of life now till October. I have negative margins, so basicly i will do my MRI every 6 month for the next 5 to ten years. My oncologit might consider Imatinib as adjuvant therapy but we need further Invetigation.
JC, thankyou for the info. It is a releif that you are on the right path. I am always mentioning you in my prayers. Meanwhile keep a strong body by staying worry free from whatever source and Maintaining regular sleeping hours will strengthen your immune system and mental ability. Be positive at all times.
Terminator, i wish you the best . Your experience is inspiering to us,to fight this tumor and keep our lives full of achievements .
Rebecca, well stay stong and calm. If you read thru this forum you will get most of your questions answeared!!!. Moh surgery is needed . Maybe you might take imatinib to reduce the tumor size before it. Steroids are usually taken to reduce inflamation and thus pain, thats it.Do not let anybody pass anythings thru the tumor site . U.of M As far as I read have a leading center to treat dermatofibrosarcoma.Usually imatinib then Moh surgery. Get your best prognosis from them since you are close.They might indicate someone who takes your insurace or have your inurance change their policy to conform U.Of M.
I am always connected to MSN live at hosain719@hotmail.com. To all, Feel free to contact me.
JC I kep you in my prayers as well as the others. Wishh all the best.

I went and saw the oncologist today and he was so arrogant and seemed to brush off this type of cancer like it was nothing to worry about. He explained to me that he just wanted to do a wide excision with an approximately 6 inch long incision, hoping to get a 1-3 cm margin. He told me that all he needed was a chest x-ray to make sure it hasn't traveled to my lungs. When I told him I was going to get a second opinion at a cancer hospital he told me that I was wasting my time and that if he had a sister he wouldn't even recommend a second opinion. OMG! Really?? I shouldn't get a second opinion?? He just made it seem like it was a routine procedure and there was nothing to worry about. Ummm...this is a type of cancer, isn't it? Is it too much to ask to get good, compassionate care??

Rebecca, Please, please, please see another doctor. Yes it is a form of cancer. This is not a progressive cancer & normally does not spread but it has a high regrowth percentage. Your best bet is Moh's surgery. That means you will need to find a dermatologist that performs this surgery. Preferably one that has dealt with DFSP before. I have had both wide excisions as well as the Moh's. The wide excision they need to get larger clean margins & it may take several surgeries to get them. With the Moh's they do the biopsy right there & although it may be a long procedure you could walk out with clean margins that day. Depending on the extent & depth of the wound you may also need a plastic surgeon involved. I know it sounds scary but the relief of hearing that the cancer is gone is the reward. Find an oncologist that has delat with DFSP & cares about you as the patient. Having the right doctor makes all of the difference. Good Luck & keep me posted.

Thanks for the advice! I was just appalled at his attitude. I'm in Michigan and I'm going to California to the City of Hope for a second opinion. So far dealing with them has been a positive experience. It's only an option because my cousin lives 3 miles from the hospital. This may be routine for that oncologist I saw but it's definitely NOT routine for me. So off to California for a second opinion. :)

Suh, I have also been for radiology consult prior to my last surgery. They just want radiology involved to make sure it is not needed. If they got all of the cancer & margins are clean then he should not need radiation. If he did need radiation it is localized to the area so there should not be any unnecessary damage. DFSP has a high chance of regrowth to the same area so it is important that they got it all out. Don't sweat the radiation consult it is good that they are covering all bases. Make sure your dad goes for all of his follow-ups & he monitors the area were the growth was. If he sees anything that is suspicious he should contact his oncologist right away. Getting this early is the key to an easier removal procedure. Hope some of this info helps.

Hi terminator,
These are definitely helpful. My dad is having his first follow up in 3 months so we are hoping that all the results will come back clear. He had the DFSP for around 7-8 years, it's just that none of the doctor could recognize that it's cancer instead of a cyst. We are just grateful that after all these year with it growing to the size of an egg that the surgery was successful and well. I wish the best for you. Thanks! (:

Hi suh,

Just saw your post about radiation and thought I would just let ya know how my experience with it was. My DFSP was also on my back (left ribcage area) about the waist. I had two surgeries to remove my DFSP. After the second, I found out that they had gotten a clean margin, but had only gotten about 3 milimeters passed the cancerous tissue. I had a radiation consult and the radiologist told me that those margins were "completely inadequate" and that I should talk to my surgeon about going back in for another surgery. My surgeon then informed me that if he did so, he would possibly permanently impare my function of that arm. SO I went back to the radiologist and he decided that 33 treatments of localized radiation would be the way to go. It was not fun, but could have been way worse. My skin broke and I got sick with a bad infection during the last week or so, but that was the worst of it. I hope the best for your father and hope maybe this info was helpful.

Hi Suh,

I'm from Australia and my dad originally had DFSB back in 2002 (i think, I was only 13 or so then) on the area between his neck and shoulder (trapezoid muscle). He had a skin graft as the area cut was larger than the rim of a mug (the scar shrunk a little). He was advised to avoid exposing that area to the sun (Aussie sun is very harsh)or to use it excessively for work. My Dad being a tradesman one of those "won't happen to me" guys continued to use his shoulder for carrying wood on and work. Follow up checks all came back clear for the 5 years after.

Then earlier this year a lump appeared under the skin graft and turned out to be recurrent DFSB, by the time they did biopsies and referrals etc, it had grown to the size of a small egg. CTs, XRays and MRIs showed that it was even larger than before. In May he had radiotherapy to reduce the tumor (to my knowledge it worked), then major surgery (not sure if mohs or not). He lost 3/4 of his trapezius muscle, needed about 5 drains and a skin graft. The area cut out was from his shoulder, up his neck about 10cm and halfway down his back (total area about the size of A4 paper). The surgery was complicated as he also has VonWille Brands Disease which is similar to haemophilia.

Today we got back the results of his 3 month follow up MRI and it is clear (though I can't help but stress out)! So here it hoping we have finally beaten it. Just hang in there, ask questions and I URGE all of you with DFSB to continue having follow up checks, even after 5 years as my Dads returned 7 years later. And if you notice another lump of any sort (just look at google images - DFSB doesn't always look the same) get it checked immediately.

Take care.

Hi all,

I was diagnosed and treated for DFSP in 2005/2006. The growth had been in there since the mid-90s (bruising developing into a scar/keloid since 94 when I was 19 y.o.). The GP suspected cancer and sent me to a hospital centre for a needle biopsy in 1999 that diagnosed it as dermatofibroma and no follow up. Over the years, I could feel a couple more lumps, but was always too busy with life. By the time the tumour caught up with me in 2005 (signalled by massive pain in the chest area and sudden swelling to the size of a small chicken's egg), the doctors sent me for extensive re-evaluation. This time around, the X-rays and blood tests still showed nothing, but they sent me to a plastic surgeon for another biopsy since the bruise was on the left chest immediately below the collar bone. The plastic surgeon was probably good at her area of specialty, but did not really care for nor have much experience with diagnosing cancer - she pronounced it to be an infected gland / cyst, and nonchalantly suggested removing it. But she must have suspected something because she sent the tissue for a lab test. However, in my last meeting with her, she mentioned that I may have this XXX - which we all know to be the long latin name of DFSP, just that none of us, least of all myself, recognised it as cancer at that point.

It took a savvy 50 year old school alum who heard the story to ask me to call the plastic surgeon to clarify the situation, and my concerned primary physician asked around before packing me off to the city's public hospitals a couple of months later.

Well, the tumour had "jumped physiological barriers" and the hospital surgeons were discussing removing my collar bone and ribcage on New Year's Eve, and talking about giving me porcelain bones. So now, you know that this supposed sarcoma - cancer of the soft tissue - can eat away at the bones. It's not only the skin and fat, and maybe the muscle - as some would put it.

Because I could not really choose the hospital at that time, my only choice was wide excision, MOHs surgery was not an option at that hospital that would take an uninsured foreigner who was on probation at her new job and would end up being removed for reasons that were illegal, not that she knew any better.

To cut the story short, I went for multiple surgeries and was in hospital for 4 months because the area removed was so huge (size of my palm, and scrapping my bones) and in a spot where the skin's not that elastic. Gleevic was not available at that time and radiotherapy was a no-no because it was just on top of my heart, and I was still young enough (at 30) to develop more troublesome treatment-induced secondary tumours 15 years post-treatment. The radiotherapists sat me down and explained the percentage probabilities.

So, I am currently a 3.5 year survivor going to get my 1/2 yearly medical report tomorrow. Nothing really serious from the follow-ups todate, just some scares with liver spots and a brown spot next to the site.

Apologies for the long and convoluted story, but yes, this is really a journey for the long term. And it does not only attack the skin, fat and connective tissues, and occasionally the muscle,lymph nodes and lungs. Given enough time (11+years since the first appearance of the bruise), it was eating into my bones. But by letting the doctors remove whatever they wanted, I have not had any recurrence. Of course, the doctors were less concerned at first, until they realised that my bone lining was being eaten up, after which they were very aggressive in removing all surrounding tissue - it's probably a 3cm or wider margin in my case, because the main lump was probably about 2 cm from what I could see, with a few more nodules I could feel. And my palm sized scar is 18.5 cm across the upper chest, and 10 cm from top to bottom.

Hi Kite,

It's interesting about your story because my DFSP is directly below my collarbone as well. It's been there since about 2003 and finally went and got a biopsy. Long story short I saw a surgical oncologist that was incredibly nonchalant and rude so I went to City of Hope in Southern California for a second opinion. They see about 15-20 cases of DFSP a year and the whole hospital is incredible! They treat their patients with dignity and respect and provide compassionate care. My surgery is scheduled for the 27th of this month. It's funny that you say they were worried about it on your bones. I'm experiencing an increased amount of pain on my collarbone lately and it's really scaring me. Before I read your post I was wondering if it was even possible for it to get to the bone. The initial biopsy area was pretty small at approximately 2 cm. As you said this area is difficult to excise because of the lack of elasticity. It will be interesting to see how much they end up having to take. I'm still having a considerable amount of pain and am just anxious to get this over with. It's the unknown factor that's scary in all of this. The doctor doesn't know how much he's going to have to take and have no idea what I'm going to wake up with. :-\ Thanks so much for sharing your story!

-R

Hi everyone! I'm 28 years old and I was diagnosed this year (July 2009) with DFSP, and had my surgery in August..
I had Mohs done. They took out the tumor mass and an additional 1cm all around it. This left me with a circle of 6 cm in my scalp. Large defects of scalp are difficult for reconstruction because of lacking of local tissues so, during the surgery a Tissue expander was inserted and then inflated. 72 days later the expander was removed (28/10/2009) and the expanded flap rotated advanced into the defect.
I opted against the Mohs procedure to avoid any further surgeries and I was right because the results came back with negative margins.
Since this week I no longer needed to wear a hairpiece or head scarf to go out !!!

Sil

Hello! I thas been a while since I have posted, but I did want to let you know that I had my 7cm tumor removed with Mohs last Monday; the defect ended up being 7 by 12; I saw a photo of it today and I am amazed that they were able to put me back together without a skin graft. Right below the throat, and spreading into the left upper chest and leaning on a muscle, the physicians were not sure what they would find; but they did a phenomenal job and I am glad I followed my heart and mind and found physicians who would do the Mohs surgery, which I think was best for me; but we each must choose what is best for ourselves based on the particular medical indications at the time. We need to advocate for accurate information so we can make the best choices for ourselves.

I had a follow-up today and will have another in three weeks. I will return to work then.

I wish all of you the best in finding the right physicians and in getting the right info on this disease. As I had mentioned, this tumor was growing for about 20 years and I had doctors laugh at me, disregard me, or simply seem puzzled.

Sil, I am happy that the expander worked well for you and glad that your margins are clear! As many of you have said, getting the right diagnosis and the right physicians makes a big difference in the experience and outcome.

Thanks to everyone for sharing their experiences. I have found this to be beneficial and also hope that my experience can benefit others.

Take care. Happy Holidays.

JC

JC I'm pleased to hear you were able to get your Mohs surgery and the surgeons were able to
as you say: "put you back together without a skin graft".That in itself saves you from some procedures which are more invasive and can add complications to the surgery.My story is
written above entitled simply "Mohs" 10 Nov 2009 I wish you well and all others here who have experienced a similar traumatic experience of this nature.

I know first hand what its like to take that first deep breath and sigh of relief after the surgery is completed,you return home,you've come through it,you're now a survivor.

Best Regards and likewise "Happy Holidays"
bstar

Hi bstar!

Thanks for your comments and good wishes. And, yes, it is good to be on the other side and a 'survivor'.

It is surely hard to live with the physical and emotional scars. I think we are blessed to be living in a time when we can have this cancer treated with or without grafts. It is important to have whatever treatment we need and to be able to find physicians who can do the best to implement that treatment. Like the rest of you, I will be screened for many (10) years and will continually work towards helping to further research and understanding of rare cancers such as DFSP. We also need to work toward getting it diagnosed much earlier, which would make it more manageable physically and mentally. I am a 56 year old grandmother and I interact with thousands of people each day at work. It can be tough.

In terms of physical scars, not only are they painful, but you are right that others do not know how to respond to them. My husband of nearly 25 years and my 23 year old daughter tell me that the huge tumor was worse so I should be happy to have this scar and not the other deformity, which was cancerous. My friend said that I should wear the scars as a badge of courage. They are correct, of course; as hard as it is (and I realize that my scars are in the neck, upperchest and breast area, and not on my face) I won't be wearing my swimsuit like I used to. Frankly, I used to get very strange looks from people when they saw the lump on my chest; it was visible if I wore any type of v-neck shirt, etc. It is hard and I am very sorry that people are so rude. I keep joking that my bikini days are over anyway; but it is hard. (My 22 year old and 17 year old did not want to see the picture of the 12 x 7 defect; I respected that. The physician did not show me the detailed photos of the reconstruction; and I am going to wait a bit until I ask to see them.)

As a professional philosopher whose area of specialization is ethics in health care, I have often studied patient abandonment in illness, both physical and emotional; frankly, I have often felt abandoned after the many years of searching for an accurate diagnosis of this illness. No one ever mentioned cancer to me. The first physician who diagnosed me as having DFSP this year first misdiagnosed me; when the correct diagnosis was found, she said she was unfamiliar with this cancer. Something in me told me to do some research on it, and I did. That led me to the physicians who did the surgery recently. I called my GP, friends in health care and anyone I could think of who might be able to make a recommendation to me.

Illness in general, and cancer in particular, makes one vulnerable. I don't know how I am going to do it, exactly, but I hope to make the rarer cancers come to the forefront of discussions on cancer. We need to know more and understand more; and we need to find, and lend, support to others who 'fall through the cracks' as we have. Earlier detection and earlier treatment means better results of all sorts, including physical, emotional, and financial.

I am happy to have found this discussion board this year and hope I can be of assistance and support as a member.

Take care.

JC

Hi everyone. I was just diagnosed two days ago with DFSP. I had a small bump on the back of my left shoulder for probably 2.5 years and went to see my family Dr. to refer me to a Dermatologist and she said that she wouldn't because they wouldn't remove it. I have since switched family doctors because I wasn't impressed with her. My new doctor refered me right away to a general surgeon. The surgeon didn't think it was anything to worry about but said he would remove it if I was anxious about it. Two weeks later when I went back to get my stitches removed he kinda hit me with this big long name (DFSP) and said that he was getting a second opinion. He didn't say 'Cancer' right away, just that it was pretty serious. When I went back (2 days ago) for the second opinion he said it was a rare type of skin cancer and he needed to go back and remove the rest of it with wide exertion, and then it would be gone and I wouldn't need to have check-ups or anything. He also said that he wouldn't see another case for 10 years. After going home and researching it myself his information doesn't seem acurate. I went back yesterday to see my family dr. to refer me to an Oncologist and to get a CT Scan to see if it has spread. I feel like I have more knowledge from a google search then both my surgeon and family doctor. They also don't have a sense of urgency with it - but maybe I do because I'm a little freaked out, and confused. I have a scheduled appt. with the surgeon for Jan. 14 but asked him to refer me to a MOHS specialist which is out of province (so I don't know how long that will take!). Thank you for all of your stories and information. It helps.

Keri Roo:
Coinsidence or ? I have'nt checked this site for quite awhile but this afternoon as its snowing here in NW B.C.and a quiet day something promped me to check in.I've been through
it and will share what I know with you. Read my posts above,I posted a few times and you can
glean some info. I had my Mohs done in Vancouver Aug 31 09 and the reconstruction Sept.1 09
Mohs is the best procedure,it leaves less to chance,research it on the net,look at the followup reports afterwards and it won't take too long for you to realize this is the way to go for DFSP. My DFSP "WAS" on my left cheek and like you diagnosis took awhile because
of it being rare. I endured a lot but it was worth it,I'm a survivor and I've resumed my
life as I knew it dispite a large Flap skin graft on my left cheek.Take courage you and the doctors can beat this. You mentioned "out of Province" so obviously you are in Canada. I can give you names and phone numbers in Vancouver if that is helpful to you. There are some very fine Surgeons doing Mohs every day of the week at VGH its their specialty.Also,my reconstructive surgeon is at the top of his game and a very well respected surgeon on the west coast.My case may be more extreme than yours but never the less getting the right Surgeons in place is important ones that are familiar with DFSP.Your case sounds typical of so many I've read, a lump,had it for years,maybe a Cyst,surgicly removed,Biopsy in the Lab showed DFSP, Doctors not familiar with it and sometimes don't know what to say.This is why websites like this one were created.
Good news for you, it rarely Matastizes and is usually localized to the known area...But you
do need to get the right procedure done and remove it with Mohs because if not removed properly it can return,its noted for that,in other words do the surgery once but do it right.
I had my 3 month after surgery Dr. Visit and he was very pleased,the pathology report was
a complete success (sigh of relief).
Keep in touch okay.

Keri Roo: I beleive I need to comment on the normal procedure with Mohs Micrographic surgery.
In most cases it is performed in the Surgeons own office. The area involved is marked out and
he begins his procedure of making a grid pattern. A local anestetic is given and basiclly Biopsy samples are taken and analized in real time in his own Lab. which is in his office by his technicians and himself.
Biopsy's are taken and analized until the all clear margin is established. The Biopsy sessions
can be as few as one or two maybe three depending on the area involved.After this the area is sutured closed and you can go home again. Normally it is not a long drawn out procedure just the wait time between Biopsy Lab. session while the testing is done make it longer. I thought this might help you to understand Mohs Micrographic Surgery. This procedure is done on the Microscopic level which is far better than just wide excising with a standard safety margin. This insures only the necessary soft tissue involved to taken and nothing else.
In my case it took four sessions because of the size of the area involved and being on my face
it required reconstructive surgery to close up the area using a skin graft.This involved
a team of doctors specialized in plastic surgery and I was admitted to the Hospital directly
after completing the Mohs Surgery. This was all preplanned,these Doctors are Specialists and
know exactly what is coming next.
I hope this helps you.What I went through was the exception rather than the rule,most patients
I saw and talked to while having Mohs done were in and out within a few hours and that was that. Take Care,and all the best with this okay.

Hi Keri Roo and bstar,

My MOHS was performed in a surgery room with the reconstructive surgeon present due to the size of the visible tumor -- 7 cm. This meant that I was asleep throughout the entire process, and most of my recovery time, which was fine. So, I didn't know when they were 'testing'. I did see a photo of the defect, which was 7 x 12, after the surgery and before reconstruction. I also stayed in the hospital for one night.

You are correct that Mohs is usually done in the office. I had hoped for that, but my tumor was too large. My surgery lasted 5 hours and I had 6 in recovery. So, the Mohs surgeons are best able to determine when and where it should be done.

I am grateful for Mohs and hope that you will find it to be as good a procedure as I did.

Best regards,
JC

I'm not sure how to post on this site so I'm making this a reply to Keri. Hope nobody minds.

My head is still spinning since I came home from the doctor today. I didn't even realize that this was a form of cancer until I started doing some web research. Guess it was the word "sarcoma" that tipped me off.

So I've had this "thing" on my stomach for more than 20 years. It kept growing slowly, but didn't really bother me (except cosmetically). While I was pregnant it would sometimes sting and itch. I tried to have it removed once, in my early twenties, when it was still only about an inch across. The doctor said it was harmless, a fibroma with some discoloration. But it immediately grew back again (this was explained as "overactive healing", leading to keloid scar tissue). So I decided not to touch it again. The last summer I went to a dermatologist to have a weird-looking birthmark checked out. She spotted this lumpy, discolored patch (11 x 7 cm) and took a biopsy. Then she sent me to a larger hospital, where they made a larger biopsy. Then the results were sent as far as the UK to figure out what this was. (I live in Sweden.)

Now my surgery is scheduled for Feb. 15. I'm a bit freaked out about it. They're going to cut all the way across from hipbone to hipbone, and hopefully there will be enough loose skin that a skin graft won't be necessary. (Hey, a free tummy tuck!) They'll throw in a new navel too, and I'll only have to stay one night in the hospital. Shouldn' be too bad should it?!

I just needed to get this off my chest. Just reading all the stories posted here has been incredibly helpful. Thanks to all of you for listening and for sharing.

It seems scary but there are lots of good outcomes. I had this 6 years ago. Like lots of other people, I was told by my family doctor that the little lump on my upper leg was nothing to worry about. After 7 years it grew to about 1.5 cm slightly raised reddish bump. I thought it was kind of unsightly so went to a dermatologist to have it removed. When the lab results came back they found it was dfsp. I read about Moh's but my plastic surgeon said that was only worth having if the lump was on your face or hand where you wouldn't want a lot cut out. He said it was safer to excise with wide 3cm margins. He closed it with two flaps which he said makes a neater job than a skin graft. It was day surgery.

To be honest, it didn't look like a neat job right after it was done but it all healed up and flattened out. I now have a giant s-shaped scar that goes all the way from my knee to the top of my leg. After a year it was whitish and flat and not that bad looking, and there has never been a regrowth of the cancer. Most of the time I pretty much forget I ever had it. I keep an eye on the general area, but really the chances of regrowth and metastasis are tiny.

I live in Halifax (Canada) which is a small city, but everything was dealt with professionally and promptly. I wondered about flying somewhere bigger to have specialists, but I think that those thoughts were fueled by the big panic I felt when first diagnosed.

Your chances are good of making a straightforward recovery and just putting it behind you.

Thanks for posting! It was very reassuring to read about your experience. It is one thing to read the statistics, which all indicate I shouldn't be worried, but it makes a world of difference to hear from a real person who has been through this and come out on the other side.
Right now I'm just waiting to get my surgery done, the surgeon had to postpone it for a week. Guess I'd better try to keep busy and not think too much about it.
Again, my heartfelt thanks to you for sharing your story!

Thank you Teef. 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 now recognizing that this is rare, and required a biopsy to confirm at a larger hospital to confirm).

I am glad to hear your experience as it is relates; a 1cm raised reddish bump. We have some big decisions to make over the next few days regarding the type of surgery and reconstruction (grafting is only avaible given location on head area).

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. Any perspectives on this would be greatly appreciated as we meet very soon (this has all happened within a very short time and with some urgency given the nature of growth).

Many thanks, very touched and a privilege to be here. Ryan and Family.

It was reassuring to read your post,it was the first one I've received and was very welcomed.
Your points and comments were well taken,there definetly needs to be more info put out there
in general for these rare cancers such as DFSP. A good example is the post I just responded to today Dec 16 to a person who was diagnoed just 2 days ago and is looking for answers in which direction to proceed because often family Physicians are as unfamiliar with DFSP as we the patience are. On a personal note I am well and have taken my life back...anyone who
has gone through the Trauma of Cancer knows exactly what I mean by taking your life back.
The physical scars are seen but the emotional ones go deep and a support group like this to
"Just Talk" and vent is very helpful because we tend to keep a lot inside and we know that
only someone who's experienced the same thing has any idea what it feels like,the dark days,
the dispair.I'm happy to say the sky is blue and the grass is green for me again :)
Take Care, I appreciated your words

bstar

I appreciate reading all of these replies regarding DFSP. I was diagnosed last month after constantly complaining about what had started out as a small bump on my lower back against my spine for yrs. My doc was insistant that it was nothing more than a fatty cyst and refused to refer me to a dermatologist. That was off and on for over 10 yrs. Well, 2 yrs ago, the lump went crazy and doubled in size and then turned into 2 lumps. I went back to my doc and he said the same thing. Two fatty cysts. Then after the birth of my 4th son the area got bigger and suddenly there were multiple small rice crispy like lumps spreading away from the two larger lumps and it changed color, looking like a big bruise. I went back to my doc in Oct of this yr and he STILL insisted it had to be fatty cysts that I'd bruised. That was the last straw. How could I not know if I bruised my back that bad? The area in question has a visible bruise like 3 inches wide and about 1 to 1 and a half inches long. I think I'd notice if I'd hurt myself that bad! I demanded to see a dermatologist after my doc finally confessed he had no idea what the bruise was.

The derm. immediately did a biopsy and when they got the results, they turned around and sent it off to another lab in UCSF (I'm in TN) for confirmation. 2 wks later I was told it was DFSP.

I'm scheduled for Mohs surgery on Jan 27th and I'm also scheduled for plastic/reconstructive surgery the same day, after the procedure. I'm trying hard not to freak out over this. I have no idea what to expect when they go in. I'm worried because not only is the visible area at least 3 inches wide meaning who knows how big the deficit will be, but it's against my spine and I worry about the chances of it invading spinal tissue. With my visible affected area being about 3 inches wide/1+ inch long, what are my chances that they will have to do a skin graft?

Zooki: Your story was well worth sharing. It seems to be common for physicians to misdiagnose DFSP and they most likely have never heard of it.What is so sad and aggravating is they should be refering their patients to a dermatologists when they don't know what it is they are looking at and they are failing us in that way.A Dermatologist is specialized in the field and knows often just by appearance what is involved and will do the necessary tests.

You are now in the right hands,Mohs surgeons and reconstructive surgeons and thats where you need to be, not back there worrying and being shrugged off.How many times I've heard someone
say they went with their instincts and they were right,but we also tend to trust a doctors opinion,they are the doctors and suppose to know,right, but with rare things like DFSP not so.

About skin grafts, you don't know yet if this will be required,there are several technics that
are used to close the area.Never the less with plastic surgery these days skin grafts are
used but very succesfully. I did'nt have one suture in my face or left upper leg (Donar area)
and everything healed up nicely for me,thats the beauty of plastic surgery.

I wish you well my friend,keep in touch,I will be thinking of you and also Kerri Roo, and JC
who I've posted comments with as well.We can benefit each other through experience,knowledge,
and our comments,who better to speak out from a laymans point of view than someone whose been there already.

-bstar-

We are hoping all is well for you after your MOHS at the end of January.Let us know
if you are able as a follow up to your previous post, okay.

-bstar-

Hi Zooki,

It tends to be the case that it takes over 10 years to identify DFSP; and my physicians told me that even if surgery had been done prior to now, it most likely would have been ineffective if the surgeon didn't know the tumorous mass was DFSP.

It is always good to get second and third opinions, and I am glad you found someone who will do the Mohs. I have found that Mohs is a more precise surgery and that the surgeons are experts in this type of cancer, as bstar said. I didn't know what to expect, either, but I can tell you that they did a phenomenal job and took only what they needed to take; that is the great thing about Mohs.

Given the nature of DFSP, it is hard to know whether or not a skin graft is needed until they do the surgery. It will depend on how far they can stretch the skin. I, too, was worried and finally had to 'surrender' to the surgeons and God and also ask as many questions as I could. Empowering myself in any way I could helped me to get through the process.

I will keep you in my prayers and look forward to 'talking' with you again.

Sincerely,
JC

Hi bstar,

Thanks for your response. I know exactly what you mean by 'take back my life' and, as I have told my family and friends, I feel I have more spunk than ever!

I am glad that you are doing better; I look forward to our continued discussion.

Hoping you have a wonderful new year!

JC

Hi JC,

You mentioned a 3 week follow up visit. What have you been told in addition to this for future follow up? I'm comparing notes with you now because we are both fairly close in
time frame. My surgery was Sept/1/09 and first follow up Oct/8/09 (5 week later).
I was told to have my next follow up after 6 months which will be approx. April 2010

bstar

I was diagnosed with dfsp in my upper left breast area in 2004. I had to surgeries with 2cm clear margins and 33 radiation treatments. After having annual scans and being in the clear, it has now reappeared. The doctors seems scared about this because it is so rare to come back with clear margins and radiation. I am now facing a double masctectomy and Gleevac and I'm not even 30 years old yet! Now that I'm a mommy, I have to worry about my baby growing up watching me sick, not to mention, someone to take care of her while I recover. In 2006 my appendix was about to rupture so they removed in as an emergency surgery. From pathology, they found there was a carcinoid tumor in it. Has anyone else had DFSP with reoccurance after clear margins and radiation? Has anyone had DFSP and other unrelated cancers?

Nov 28, 2009 I had DFSP removed by Mohs from my left breast. I had it for about 3 years before removed. It looked like brownish purple spot smaller than a dime. The surgeon said to follow up with derm every 3 months for 3 years. My question what does it look like when and if it comes back and does it come back in the same location? Did you have yours removed by Mohs? I have been reading others have had body scans....is that something I too should request? and why are some on Gleevac and others have radiation. I want to be sure I am doing all the right things.

Thanks!

I am not on Gleevac or radiation; nor did I have chemo. Each treatment depends on the specific extent of the cancer, where it occurs, and also, I think, the physician.

I always think it is good to get more than one opinion; that is what led me to the surgeons who were familiar with DFSP and MOHS and who had treated several cases of it before; they had also written an article about it.

My MOHS surgeon didn't use Gleevac on me prior to the surgery since he said it might cause the spindles to break off. I actually didn't realize that it was prescribed after surgery.

In any case, I appreciate the despair that each of you has; it is truly traumatic to go through this. I am glad to 'talk' and share what I 'know'.

JC

Hi,

Have you had a second or third opinion? If you are located in the northeast, I would check Dr. Victor Marks at Geisinger. If not, it would be worth having another opinion about the cancer.

I had MOHS; my cancer wasn't in my breast, but they had to move its tissue and rearrange my left breast since the cancer was in the chest near the breast, and I suppose it had spread to the upper left one.

JC

Hi,

Have you had a second or third opinion? If you are located in the northeast, I would check Dr. Victor Marks at Geisinger. If not, it would be worth having another opinion about the cancer.

I had MOHS; my cancer wasn't in my breast, but they had to move its tissue and rearrange my left breast since the cancer was in the chest near the breast, and I suppose it had spread to the upper left one.

JC

Hi bstar,

I am so sorry that I haven't been on for a while.

I had a visit a week after surgery, then another a month after surgery. I have another at the end of this month, which will 2.5 months after the surgery. Each of these were with the reconstructive surgeon. The DFSP surgeon wants to see me in a month or so, and he will follow me for 10 years.

Do you know how long you will be followed? The literature suggests that 10-15 years is not uncommon, despite the rare reoccurence after MOHS.

How are you doing?

JC

Hi JC,

Sounds like your doctors are taking care of business for you which is very good to hear.So far my reconstructive surgeon said to see him in 6 months after the first followup. Its a 1700 mile round trip each time to see him so I try to do Lab tests locally if I can and have the results Faxed to my 2 Doctors where they practice,it saves time.
There is no substitute for an office visit though and the doctors involved in my case are quite particular that I see them even though there are qualified Doctors closer. I understand it,they know exactly what has been done and can judge my case more accuratly.

I've been monitoring these posts quite regularly JC and there have been a couple of women
here with questions, they have been dealing with DFSP to the Breast area.I'm glad you came on
and posted a comment. Being a man, even though I'm a 65 year old Grandpa with a good family and seen it all I'm still being sensitive to a womens needs and feel another women would be
better to address questions of this nature. I respect people and from the old school,etiquit
and being a gentleman still means a lot in my world so I stayed silent even though I wanted so much to encourage and make comment.

Hi bstar,

It is good to hear from you.

You have a 1700 mile trip to the doctor? Wow. I can see why you don't want to travel for tests! You said you went to Van Couver. Do you live in Canada? (No need to answer, if you don't want to; I just wonder how the Canadian system is with this. I have spent lots of time in Canada and do lots of research there, including on health care.)

I live in a rural area, but the medical center at which I did my treatment is only about 65 miles away; but many others I considered were about 200 miles away. I see from other posts on this site that it is often the case that people have to travel a day for care. That reconfirms the rarity of finding physicians who actually treat this type of cancer. A hospital closer to me (and many others, for 20 years)misdiagnosed me and hadn't heard of Mohs, which scares me.

After reading the other recent posts, I wonder how many physicians don't do Mohs (not all are trained) and thus opt out for wide margin. Wide margin does not have the success rate Mohs does. Of course, sometimes wide margin is the best option given the particular problem. I am wondering if that was the case for some others who have the cancer in the breast area. There are a couple of other women who discussed this in another venue on this CAN site.

I have learned that we have to be our own advocates and that can be hard in the health care system. We are all so vulnerable. And you are correct that the physical scars bring forth certain emotions. I imagine that none of us is the same given the cancer and the surgeries, which makes it more difficult for people to relate to us, and vice versa. Perhaps it can make us strong, though. It is 'funny', but I have always been rather feisty, and I think people thought the cancer would make me less so; but it has made me more so!

Take care, Bstar. I will be in touch.

JC

Canada has a fairly good Medical system.The magnitude of the surgerys and care I received would have cost a fortune I'm sure.It cost me virtually nothing,I pay a premium of $160 a year and the BC Carecard picks up the tab.My employer who I'm now retired from pays the balance of the yearly premiums.I live in Northern British Columbia.In our City we have a good medical center,Cat scan equipment,ultra sound, a good Medical lab and many family physicians and several surgeons. With something like DFSP though we have to travel to where the specialists are which is Vancouver. I have flown a few times but that gets quite expensive, fairs are based on numbers of passengers and that is reflected in the cost per ticket.There is a bus once a week for medical purposes which travels from this northwest BC
area to Vancouver and back, I may consider this as an option in April.I've been seeing news
feeds on TV about President Obama's efforts to impove the medical care in the US and We feel fortunate here in Canada to receive the health care we do,its still not perfect
but at lease "ALL" people receive good health care rich or poor,young or old because medical problems like Cancer etc.make no distinction who it hits,thats a given.

Take care,thanks for the quick reply
bstar

Hi bstar,

Thanks. Yes, I knew that the system covered 'all', unlike ours, but I wasn't sure about payment. My personal insurance premium is over $100 per month for a family plan and my employer, at present, pays the rest; but we have to do certain things to get them to make the insurance co-pay. I have to pay for a deductible each visit. My bill for the day in the hospital was over $38,000, although more than half was covered by my insurance; I hope the hospital will accept what has been paid since I have met my deductible this year; however, I have over $1000 in bills from the preliminary physicians and labs and there is no 'grace' for that if one is employed, which I am. I have 4 dependents in addition to myself, however, and not even the ACS will count all of them when considering coverage or financial support. Let's just say it has been a rough year in every way! My husband works seasonally for a company as a portrait photographer and also is trying to get his own business off the ground, so it isn't easy. (He has some great photos from a trip to BC, by the way! You must also have some good ones given your interest in fishing and your location! BC is beautiful!)

My husband and one of my daughters are in Canada now for a short trip. We love it there. Had it not been for my recuperation, I would have gone myself!

Take care. Thanks for the info! I will continue to spread the word about Candian health care!

JC

Hope all is well JC and your life is back on track. I say that knowing full well that during those hard days we went through itslike we've been derailed for a time until our
life is back on the track we were on. Mothers/wives are very busy people and I'm sure there were days you just had a good cry trying to juggle work,family,children,home,appointments,doctors and so forth,the pressures can be overwhelming.I salute all the Moms/wives out there who have dealt with or are dealing with
any kind of Cancer and still keep on keeping on in the midst of it all for their families.
Maybe someone out there will read this and take heart that we don't have to suffer alone,
there are people that care because they know what it feels like,we've been through the storms of life. I've been through many storms in my 65 years,but I'm still here,still loving life.still thankful to God to wake up every morning and try to bless at least one person each day. :)

bstar

Hi bstar,

Anyone who has cancer knows what is it like to have to juggle all that they do along with appointments, etc., and families must also make adjustments as they, too, change. Like you, I am thankful that I am alive and loving life!

I had my two and a half month check up yesterday, and other than a small hole that is still healing, things look pretty good. I see the reconstructive surgeon again in three months and the MOHS surgeon around then, too.

Community support is very important and I have found these discussions to be valuable, and hope others will too!

It must be rather cold where you are, now. It is in the 20s (F) here and it was in the single digits a couple of weeks ago. It even snowed today, decorating the landscape with dots of white as the mountains faintly emerge in the distance.

Take care.
JC

Hi,

I do not know of any, but perhaps you are aware of The Rarer Cancers Forum, which originates in the UK. Here is their link.

http://www.rarercancers.org.uk/forum/view_topic?topic_id=291&scode=0#add_comment

Take care.
JC

Hello, everyone. I am new on this board and hope someone can help with suggestions for doctors (dermatologist, oncologist, etc) in the Denver area. My eleven-year old granddaughter in Colorado Springs had a lump removed from her shoulder recently with no prior biopsy. It turned out to be DFSP.

I am in New Mexico, but our family is mobilizing to get all the information and suggestions together possible so that further treatment is done properly. We know from our research on the Web that she needs MOHS surgery but since the tumor has already been removed also realize it may be more difficult locating the margins. Is there anyone on the board in Colorado who has had a good experience with a doctor or hospital treating DFSP? If not DFSP a good experience treating some other Sarcoma? If so I would very much appreciate your recommendations.

Thanks so much.

David

Hello,

I read your entry and appreciate the information you shared with those on the network about your experience with DFSP. It sounds like from your experience you had testing done before your surgery and the surgeon was prepared for removing the involved areas. Would you mind helping me by reading my situation and answering a few questions?

I am new to this network as a very concerned mom of a 12 year old son with an unknown mass in his back. We have had multiple imaging tests over the past months and the doctors don't know what it is, but are saying it is probably nothing. There is an MRI report says there is a contrast indicated "focal thickening of skin" that is about 3 cm in size. The lumpy area feels hard and wasn't there 1 year ago. The skin over the lump doesn't have any observable difference in color from normal.

Did your DFSP occur with changes on top the skin? You said you thought yours was scar tissue so that is what triggered my question. Thank you so much for considering my question.

HS

Hi HS,

I was told many, many times that it was scar tissue. The lump started out small over 20 years ago and it was only a small, tiny ball under the skin. Then it grew bigger, popping out from the skin, strethcing it, and then stretching out into many small spindles. My skin color didn't change until a few years ago, however; that is when I also noticed the spindles growing in number and my skin changing color. As I understand it, the skin changes color, in part, due to its being stretched by the tumor. DFSP starts in the tissue but grows into the second layer of the skin, so I guess that when it gets to that level, and increases in size, it creates problems with blood flow, etc., and discolors the skin, along with the stretching of it.

The best advice I can give is to have any lump anyone has biopsied. No one would do that for me until this past year. The biopy, finally, was sent for three opinions, which I found to be helpful and the physicians also found to be helpful.

One thing I have learned from my experience is that any lump in the body indicates an abnormality. That abnormality can likely be cancerous, or can become so. If someone is unfamiliar with DFSP, they tend to dismiss it as 'scar tissue' or as 'nothing'.

I wish I had been referred to a dermatologist years ago. While it is not a skin cancer, DFSP has been identified mostly by dermatologists, so that is what I would recommend to anyone who is told a lump on the skin is nothing. Also, I would go for as many opinions as I could as it seems clear to me, based on the experiences described by the members of this discussion board,that it can take a while to find a physician who recognizes, and can describe/diagnose accurately, DFSP.

I hope this helps.

JC

Hello again. First I want to appologize for not replying right away. I do appreciate the reply BStar and all the info you share, along with JC. I think I needed my mind to "settle" as much as it can and not think too much about DFSP.

Since Dec, I have seen an Oncologist in Halifax, NS. I was not impressed at all. He and the nurse basically called DFSP "cancer-light" and that I really had nothing to worry about. I realize that the chance of reoccurance and death is low but it is still a lot to deal with - physically, mentally and emotionally. He said that a CT scan was not necessary, also that it didn't matter how it was removed (MOHS or wide excision) as long as it gets removed. He said that you I shouldn't think of DFSP as a 'Sarcoma'. He said that there would be no need to see him again. I asked if he knew of anyone in the area that has DFSP who I could talk with and he said that he has seen other patients that have DFSP in NS but none that would want to talk to me. I left feeling defeated and not trusting a word he said.

I'm scheduled for my MOHS procedure on Feb. 24th in NB. I am starting to get nervous about the surgery. I also have a CT scan booked for March 1st. I thought it would be a good idea to still go ahead with the CT scan just to be safe.

I also found a lump in my breast and just had an ultrasound done two days ago. My family dr. says its probably benign but thinks that my general surgon will want to remove it to be safe. I find out the results on Feb. 23 - the day I leave for my MOHS procedure.

I do have a question: I also have a small spot on my belly. It seems similar to the DFSP spot on my back, just smaller. It is slightly raised and colored. (The Oncologist didn't believe me when I said I thought that they were similar in appearance!) What are the odds of having DFSP in two locations? I think the MOHS surgeon will be removing it as well.

JC: I too am a mom. I have two beautiful baby girls and have to be a mom everyday. I feel like sometimes I wish time would stop so I could breath and deal with this, and at the same time, I'm glad it doesn't since it keeps my mind focused on them. I am still nursing and co-sleeping. Its funny, as a mom what you worry about. I worry about not being able to nurse and sleep with my baby after my procedure. How was the recovery time for you? Were you out of commission for a while, so to speak? My mother is coming to stay with us for a week to help us out.

I find this whole experience very hard mentally. I don't feel sick, yet I have cancer on my back. Its hard to wrap my head around this.

Hope to speak to you both again soon. I will keep you updated.

Keri I was shocked when I read your latest post this evening.The Dr. had no right to basiclly dismiss DFSP like he did, was he trying to mislead you and soften his diagnosis,my
goodness,and to say a CT Scan was'nt necessary was utterly foolish,that is so necessary to allow the doctors to acually see the size and depth they are dealing with before performing Mohs Micrographic Surgery. I first had an ultra sound then a C T Scan.

Let me encourage you Keri, you are on track getting a CT Scan and Mohs. The Dr. doing
the Mohs will know exactly what to look for and examine you as well,speak to him of your other concerns too, he'll be a better judge of what is needed.

Today I had a long phone conversation with a representitive of the Canadian Cancer Society,they would like me to be a contact person in Canada for DFSP because it is rare
and to have someone who has first hand knowledge of DFSP is very benificial to them.
I mentioned I was helping in whatever way I can already on this website and I stressed
how I've seen so many doctors misdiagnosing DFSP time and time again,its actually scary
to see this happening.
I am well,strong,active,walk 40 mins. a day every day,only missed 3 days walking since October because of bad winter weather. Just booked my 6 month followup appointment in Vancouver for April 13 with my reconstructive surgeon.

Yes I hear you that it takes its toll on you mentally, like I said to JC after it was all
over and I healed,it was like I took my life back again and in that time I was going through it were some dark clouds of anguish,anger,frustration and the doctors can't
help us with the emotions and the scars it can cause.We need others for encouragement,
to listen to our story, to give us direction,to go through some of these things with us,
ones like myself,JC and others would have walked that road already and have a heart to
listen. God bless you Keri, you'll be okay,you're walking the right direction with this.
Tell your children Mommy will be ok that you might have to go through a few things but you will be okay,kids need to hear that from us,they don't understand why but they worry too.
I'm a Grandpa many times over, I know kids,there liitle lives are fragile,they need reassuring.

bstar

Hi bstar!

I am so glad you will represent the CCS! I am going to contact the ACS to see what role I might play; I am thinking of trying to do a conference so all of us who have had this and get together and talk about it. Maybe we can do something......so much needs to be done!

I agree with your comments to Keri and I think you are doing a wonderful service to all of us who have DFSP.

If anyone would like to talk at any time, I also have an email: theessenceofpuregoodness@gmail.com

In addition, to assure you I am not a nut, if you email me I can provide my full name, and a link to my professional website. Then, if you googled me, you would find out more about my professional and personal work and get a better sense of who I am.

Take care! I will check in again soon!

JC

P.S. bstar, did you get to the Olympics?

Hi,

I am sorry it has been a week since I have been on.

First of all, I am glad you will have surgery on the 24th. I actually had a CT scan and an MRI before my surgery as they wanted to see if it had spread; it is possible for it to be in more than one place. I would recommend that you 'go with you gut'; if you don't trust the physician, then find one you do. I know that sounds easy, but that is what got me to my physicians and I feel so good about them, I am convinced that we know our bodies more than anyone else and that many physicians would rather say something isn't a problem if they aren't familiar with the problem (cancer). I think that doctors who really don't understand DFSP are the ones who say 'don't worry'; if I had a dollar for every physician who told me that .....

My physician had to move a 7x12 mass of nerves and tissue. Luckily, there was enough breast tissue to take and do that. They stiched two layers below the surface but they used permabond, a glue, on the surface, which was great since I didn't have to have stitches removed. I could not lift anything for 4 weeks. I rested a good deal for another month. I still find it hard to lift things sometimes, feeling a strain underneath; and I was exhausted for the first three weeks I went back to work; but this week was a good one.

When they did the Mohs, they tested during the procedure; so they knew they got all of the cancer before I left the room. Of course, I will have follow up, before they reconstructed me, the Mohs physician called my husband and told me 'they got it all'.

Overall, I, too, was afraid; but I had to surrender to the process since I knew that I couldn't live with the cancer any longer.

It is good you have family to help. We have no family here, although one of my daughters, who graduated from college last May, stayed here to go to grad school in case she had to help. They didn't know if they would have to take muscle (which they only had to shave) and so it could have been a longer recovery. My son came home from university for a week during his break; and my high schooler was here in case there was a problem. Of course, my husband was invaluable!

I will keep you in my prayers and will be happy to talk with you via this site or even call you if that would help. Let me know.

All the best to you,
JC

Its good you responded just now JC before Keri goes for her Mohs and receives her result the day before on the 23rd. You said some things that were benefitial,I learned something too, I did'nt know what the super glue (ha ha) was called until you gave
it a name Permabond. I did'nt have stitches either, that would have left more marks on my face and I already have enough going on there without stitch marks.

Keri,we will be thinking of you tomorrow and the next day while you hear your results and
also go for your Mohs,this too shall pass. One of my daughters said something so simple to
me while I was going through the procedures and feeling kinda low,"Dad", she said "take it a day at a time, and sometimes take it just an hour at a time" in other words don't worry about tomorrow for tomorrow will worry about itself,each day has enough trouble of its own.What you are doing Keri is so important so just relax a bit,take a deep breath and walk on,these trials in life are hard and we ask ourselves "Why Me" but through these trials we become a stronger person in many ways when we rise to the challenge and keep going. Please let us know how you're doing when you're ready okay.

bstar

It has likely been an emotional and busy time for you this last week Keri and our thoughts and Prayers are with you. I must give you a short note which you may find interesting. I was stationed in Cornwallis in 1961 as a young 17 yr. old teenager still wet behind the ears doing my bootcamp training with the Canadian Navy so I have a heart for your area, Annapolis Valley where the apples grow,Digby with its extremely high and Low tides and of coarse Halifax where our Ships are docked,its a beautiful place Nova Scotia,I felt very much at home there.
So there's a bit of personal history which by the way dates me Ha Ha, I'm a proud Canadian
having done my duty for our country as a young Lad and my roots go deep from coast to coast.

bstar

My husband was diagnosed with DFSP in December 2004. His case was on the left cheek and the treatment was Gleevac and surgery. At that time, Gleevec was an experimental drug. At that time, I could not find ANY cases or support networks for DFSP. Needless to say it was a long, emotional and painful 5 years but last April he did reach 5 years without any reoccurance. The ONLY reason I researched DFSP is because my son (15 years) is now interested in doing a school research project on the cancer his dad struggled with for so long. It is AMAZING and ENCOURAGING how far medicine has come in just 6 years. I wasn't the recipient of this cancer but I was a spouse. My thoughts and prayers go out to all of you... Keri especially. Please let me know if I can help in any way.
EKurila

So... I'm the husband.

And I was the first patient to be experimentally treated with Gleevec for the onset of a cancer. Gleevec had been used successfully for the re-occurance of cancer... at that time. Remember that DFSP is easily treatable with surgery (if caught quickly)... grows slowly... generally does not matastisize... and is not life-threatening. In my case, an idiot skin doctor missed diagnosed me and the turmor grew to unusual size resulting in them cutting off the right side of my face (along with muscle and nerves) below the eye. For those that are old enough to remember that old TV program "The Six Million Dollar Man" with Lee Major... I'm the $600,000 Man. It was an incredible reconstructive surgery with donor parts from various areas of my body.

In my case, Gleevec shrunk my tumor by about 25% to the surprise of everyone involved. However, due to the fact that cancer leaves microscopic "footprints"... they ended up cutting about the same amount had they not used the Gleevec. However, they learned alot and it gave me the time I needed to prepare for a 12 hour surgery that I might not have survived... or might not have survived well. Know too that Gleevec has side effects that are tolerable, but not pleasant.

The key to picking a great surgeon is finding someone with extensive experience cutting in the area of your cancer. Essential to a good outcome is absolute intimate knowledge of the nerves, muscles and tissues surrounding the sarcoma. As this is a rare cancer, there are few "experts". One of a small handful of such experts is Dr. Bruce Haughey at the Siteman Cancer Clinic. Siteman is a premere instituion and Bruce is the best. He is a thoughtful and reflective surgeon that is collaborative in his practice. His collaboration with the radiologists and drug therapist at Siteman was key to the recommendation to try the Gleevec experiment... avoiding radiation therapy. And, his skills are so good that we did not need a plastic surgeon on the team. I have had plastic surgeons review the results and the best of them are simply amazed at the outcome and Bruce's skill.

Get the best surgeon you can. Bruce's staff are kind, incredible helpful and will make a recommendation for a skilled surgeon near you. If you can, use Dr. Bruce Haughey. Call them:

Siteman Cancer Center
www.siteman.wustl.edu
660 South Euclid Avenue
St Louis, MO 63110-1010
(314) 362-5654

MMINDLIN: I beleive you and I have some things in common which I'd like to discuss with you
if you're willing.First I'm a very active and healthy 65,I walk 40 minutes a day every day.
If you have read some of my posts you would know it was my left cheek where the DFSP showed
up. The left main facial nerve and parotid gland are gone along with muscle tissue.
The area is fairly large approaching the size of a hardball baseball.My reconstructive surgery was also like yours 12 hrs.under general anestetic and 5 hours the previous day for the Mohs procedure.The donar area was my left leg from knee to thigh,nerves,muscle,and the skin tissue, as well as a vein from my left foot.The surgeons implanted a sling of muscle taken from my leg so my jaw won't sag over time and they did a nice job,the contour is good. When all is said and done I am very healthy now,my leg is as strong as ever,(I ride a Goldwing Touring Motorcycle),and the post Lab report and follow visit was excellent, I go for my 6 month in April.My only struggle is with the colour of the flap, it is white compared to skin tissue on my face and I've been using some makeup to try to blend it in and look more natural which is not so easy. I've tried self tanners which help some and have tried to find the right cosmetic product to match,they all seem brown and my natural skin is pink with a reddish tinge.

Tell me about your experience with this post surgery problem and the effects of skin tones,scar lines and so forth this is something that we deal with every day but not much is mentioned. The majority of individuals can hide their scars or flaps etc. but you and I are faced(no pun intended) with a very visible situation and we need to talk about it.

I welcome your thoughts,ideas,and soforth. For a man especially an outdoors X Navy guy and
sort of matcho as well using makeup was like a blow to my pride and ego it was'nt manly,I'm being honest here, so I'm interested to hear what you a survivor like myself has to say about this and how you've dealt with skin tones or if you even have the same problem,I suspect you do by reading through your post carefully.

bstar

So... as all my good friends said to me after the surgery... " you're just a little more ugly".

I have the same white flap from my fore arm. Doctor said he could dye it to better match the rest of my skin, but I was not keen on taking in dyes. Intuitively believe it ain't healthy and there will never be a "match". I am reminded every day that I am disfigured... I have constant discomfort... and I lack some functionality. But, I'm alive and I will not let this get me down, completely... although I do have my "days" when I just want to give up and go away. Nor, do I want to be a "survivor" forever defined by one event in my lifetime. And, I do not want a "survivor's" mentality. It's a constant struggle that I will never "win"... but I can move on... and I would hope you can as well.

I also had the forearm flap surgery to fix the hole in my face, although mine was on the right side. This is my second go-around with DFSP. I was originally diagnosed back in 1999, after having a nickel-sized patch of thickened skin on my cheek for about 20 years. My original cancer was removed using MOHS surgery, and although it's supposed to have a 95% success rate, I was one of the unlucky few that make up that 5%. After 9+ years, I noticed a raised spot along my scar and immediately knew it was back. This time has been more of an ordeal, as the doctors claim MOHS doesn't work well for recurrances, as it's hard to differentiate between scar tissue and DFSP cells. After 9 doctors and 6 surgeries, I hopefully have most of this behind me now, although I'm still having trouble closing my right eye. Did any of you with facial DFSP have nerve damage affecting eye function?

My main Facial nerve (the large one) which is integral with the parotid Gland (Saliva gland) is now non existant,therefore no feeling in the left cheek and no muscle control
on that side of my face for smiling etc, however I can still control opening and closing
my eye as normal,or wink.My Flap was from my left upper leg because they needed a fairly large donar area to work with approx. 2 1/2"x 3 1/2" around.I have new muscle tissue in
my face taken from my leg,its to keep facial contour and semetry but I can't
control it,I'm trying to reprogram my brain how to control muscle function there and
this is out of the Doctors hands. I should be satisfied that they did a good job
of facial semetry albeit very noticeable facial reconstruction,however I always try for
more,its just me and how I think.Try excercising your facial muscles,thats what I keep doing every time I think about it,who knows,the body is a wonderful thing,it can often repair itself and reroute tasks that were'nt thought possible,if we have at least a will to try.Good luck,take care,and keep on keepin on :)

My flap is about 3 1/4"x 3 1/2", but didn't include muscle tissue. This obviously left me with a gaping hole in my arm, which was closed with a partial thickness graft from my thigh. I believe the surgeons did a good job, as most days I'm more self-conscious about my arm than my face. And I am trying to keep an optimistic outlook. I'm currently six months post-op, and in the past couple weeks I've started to regain feeling in my earlobe, and am now starting to get some feeling in my facial graft. So it does appear my body is slowly healing, including some of the nerves.

Consider this,you have facial muscle tissue,you are accepting the statis quo now like me,you are regaining feeling in your earlobe,and gaining some feeling in your facial graft.
Consider the alternative,you are fortunate,more than I but I consider myself blessed to
come back from this even though I've lost more than you.I just returned from my post-op
checkup yesterday,it was an ironic event that the elevator quit just then as I left the
doctors office and I had to walk down 5 floors,I counted my blessings as I counted each floor that I was strong and able to carry on.I will undergo Liposuction on my cheek when I
am ready (45 mins and go home)the donar area being my upper thigh has more fat tissue and
they will remove that,again I feel blessed to live in such a time as this that the doctors are able to do such procedures.

Bstar,

Not sure if my reply was helpful... and I don't discount your concerns. I can't keep up with all the various blogs sites... so feel free to email me directly at michael4864@gmail.com if you wish more (private) conversation.

mmindlin

Hi-
My name is Stu and I'm a 46 year old male in Denver CO. I've just had a recurrence of DFSP on my left temple after eight years, and am quite worried as I've already had reconstructive surgery after the first Mohs procedeure. I would love to hear any info you have about gleevec...
Thanks,
Stu Page
stupage1@gmail.com

I have been so busy at work, much too busy, that I haven't posted for a few weeks. I hope that Keri is doing well and I hope that your check up will go well, too, bstar. How have you been feeling? The permabond certainly helped me, too, although it still is an adjustment, to say the least. The internal stiches and tissue feel heavy from time to time, but I am moving about fairly well. I am still getting tired more quickly than I think I should, but I am probably doing much too much!

Let me know how things go for you.

JC

Thanks for your latest post JC I've been concerned about Keri too,she has'nt posted since her MOHS etc. Hope all went well for her. I'm doing fine and carrying on with my usual very active life of outdoor activities. There was that period of apprehension that lasted
for about 4 or 5 months but it seems to have subsided now. Waking up every morning I feel
the same as the day before,nothing physically changes so I'm more relaxed and at peace
now,I can live with this. There has always been a bit of tightness around my skin graft
when I move facial muscles but thats understandable.The facial muscles move in different ways than before because they are different muscles grafted in so I've been trying to
teach my brain how to control these new muscles,its like learning to walk again.With
a radical change in muscles and facial nerves I don't think even the doctors can predict
what the final outcome will be so I take it upon myself to experiment with muscle control,maybe some of the things I can do they did'nt think possible,the human body is
a fasinating thing and how the mind can adapt to change if allowed to learn new ways.
I'm riding my charished 1985 Goldwing Limited Edition Touring Motorcycle again if that is an indicator of my progress. Take care,it was good to hear from you again.

bstar

Hi bstar,

I am glad to hear you are back on the bike! (I had one many years ago, and still have a license, but am awaiting retirement before I buy another, when I hopefully will have time to ride more.)

There is a lot of tightness in my chest and I am told it will be another two years before I get all nerves 'activated' again. The scar tissue isn't healing as well as they'd like, and I am trying some silicone treatment for it, but I am certainly living an active life --although still getting tired a bit when I 'overexert', of course.

How is your work with the CCS going?

Best wishes,
JC

ALIZA: First I would say follow your instincts with this,we've seen misdiagnosis,we've seen doctors passing it off as nothing, we've seen doctors who did'nt know anything about DFSP and were likely too proud to admit they did'nt know. I have the utmost respect for the doctors and the medical profession, and if it was'nt for them I just may not have survived,however we need to be intelligent and not willing to sit back if things don't seem correct.Its your right to seek a second opinion and have peace of mind.

Myself,I am going for the 6 month checkup in April. I asked the Doctor (my reconstructive surgeon)if I should get a CT Scan or an Ultrasound prior to the visit so we can see what
the area looks like now, he said no it was'nt necessary, the physical inspection and his
verbal consultation will tell him what he needs to know, I trust him,he's the one who knows
exactly what was done,how the area was repaired,every muscle,every fiber,vein,tissue.
He knows exactly what it should look and feel like after 6 months,he's done hundreds of these cases so I trust his intelligence and wisdom. If I had pain I would be insisting
on more comprehensive testing for my own peace of mind.

There were no answers given here but I hope what I've stated will give you some idea how
you should approach your peronal concerns and make a judgement call for your own particular
surgery and follow up exam.Please feel free to comment and keep in touch through this medium.

bstar

My diagnosis of DFSP was accidental. I had a hard 3cm nodule in the middle of my forehead, and a smaller one closer to my hairline. My dermatologist said it could be a cyst or lipoma, but because of the size and location, she wanted me to see a plastic surgeon. He took one look, said "osteoma", a benign bone tumor, and scheduled an endoscopic removal on 4/21. His plan was to make an incision in the hairline and go in under the skin to remove the "osteoma". However, when he went in, there was no bony growth, but what he thought was a thickening of the periosteum. Thank goodness he took a biopsy.
He gave me the results of the biopsy on my follow up appointment on 4/30. Like many the stories I have read from many people on this site, I was thunderstruck. The plastic surgeon said I was the 3rd case of his career, so his knowledge and experience is not vast. I went back yesterday, 5/14 to receive the results of the immunostaining (CD34). I have been doing my homework, and asked about the Moh's procedure. He feels that he cannot do it because since he went in and "released the periosteum, and disturbed the tissue plane", so he has no idea where the margins would be. He says he could end up taking a huge chunk out of my forehead.
He mentioned radiation therapy, but says that could be difficult on the forehead. He is willing to refer me to a radiation oncologist or any other specialist. I live about 100 miles from Philadelphia, and he says UPenn has people who have seen more than a handful of cases.
His final feeling, though, was that we should just adopt a "wait and see" approach. I said yes to this at the appointment yesterday, but 24 hours later, I am more confused than ever about what to do. Like I have read on several posts, people are reassured that DFSP is slow growing and rarely metastasizes, but why should anyone with this diagnosis gamble on that?
bstar and JC seem to have lots of advice, and I sure could use some!

I replied on the 16th the day after your post but for some reason it did'nt get onto the site so I'm sorry about that. Seek out a Mohs surgeon who has extensive knowledge and experience with DFSP. The area affected often determines the surgical procedure he takes.
Here is an example: I traveled 800 miles as the crow flies to see the surgeon who would
perform Mohs Micrographic surgery for me. I full well anticipated having it done then an there and in most cases would have.
As a background,my surgeon does literally hundreds of Mohs surgeries a year and he is so experienced with this he can tell almost exactly what is likely to happen and how to proceed after 20 minutes of examining.As it turned out he said "NO" I won't be doing Mohs for you today it is too involved and we need a team of doctors for the follow up reconstruction. On the surface it was'nt that noticable but he knew it was going to be involved.

Bottom line 3 months later I had Mohs surgery with that surgeon which took 4 sessions over 5 hours and was then admitted to the Hospital and the next morning at 7am
a team of doctors did the reconstruction over a 12 hour period.
The reason I'm sharing this is to show you this well experience Mohs surgeon knew what was coming next after he started his surgery. That is the kind of surgeons are needed with DFSP. Gleevec is being used more and more as pre-op treatment to shrink the tumour before
surgery in some cases to lessen the invasiveness of the the actual Mohs, and also as a post-op treatment to lessen the likelyhood of anything missed. I personally was'nt perscibed Gleevec by the surgeons, I asked about it in passing but they were very confident in there surgical procedures to the point they said 99% or more success.

I hope these comments have helped you for your own peace of mind. Get your proper rest,
its important to healing and being strong.I was'nt sleeping very well after diagnosis because of worry. For the first time in my life I took a sleeping pill each night before bed,it helped a lot. After surgery about a week later I stopped taking a sleeping pill each night and haven't since,that was 9 months ago.

Bstar

Bstar
Thanks for your reply. The last two weeks for me seemed to last for 2 years! I've been researching DFSP extensively. I heard about the Facebook group, and checked that out, and it was there that I found some names of experienced doctors near me (about 100 miles away - a stone's throw compared to your 800).

Since then I have had appointments with a Moh's surgeon, a facial reconstructive plastic surgeon, and a surgeon who does microvascular skin grafts. All these doctors are associated with John's Hopkins in Baltimore, where they see about 2 cases of DFSP a month - that's a lot for something this rare! At my appointment with the Moh's surgeon, he biopsied the smaller nodule near my hairline to rule out whether it too was DFSP. When those results come back, probably in the next day or two, they will schedule the Moh's.

The bad news is that will not be the end of it. Since they know the periosteum is already involved, they will need to cut out a portion of the bone and do a graft of skin taken from my forearm. I can't describe how I felt when they told me this, but then I don't need to describe it to you, bstar, because you have already walked this walk.

Thank you again for letting me know that I'm not the only one out there that has to deal with this. I've read your posts and you are incredibly strong and upbeat. I'm trying to do the same.

I had a smallish pimple like deal on my upper, middle back (very near my spine) for about 10 years that grew to almost the size of a golf ball back during early June. Before June is was a non-issue, and it was only painful if I touched it a certain way. I think I originally injured myself with a barbell or dumbbell in that area but I don't remember. Assuming it was a lipoma or sebaceous cyst I waiting until Dec. 1st to have it removed by a plastic surgeon and what should have been a 15 minute procedure lasted nearly an hour. The tumor itself was an ugly looking thing loosely resembling a squid, about 8 cm. The pathology came back saying it was DFSP, even though it was only stained for CD34 and not CD10 or factor 13a (to absolutely distinguish it from variants of dermatofriboma, a benign condition). The plastic surgeon I went to mentioned the wide excision and not Mohs. The oncologist he sent me to also mentioned the wide excision and scoffed at the idea of Mohs saying that it involves a lot of scraping (um yeah!; that's the procedure). She also mentioned doing the surgery and some radiation.

What's odd is just like many of you have mentioned both drs. say they've seen it about 3 times in 30 years (is this the standard answer?) and neither were high on the Mohs procedure (one didn't even mention it), even though Mohs has the lowest recurrence rate (1% - 5% vs. 30% - 50%). Needless to say when/if I actually have surgery I won't be using either of them because it seems as if they were more concerned with what procedures they can do instead of what is the best procedure for me was. I'm already done with the plastic surgeon and once I have the MRI and take a look at it I'm done with this oncologist.

Further, since it rarely metastasizes and is only an issue to me if it grows back and hurts, I'm not sure I want to subject myself to another surgery and the complications that could be associated with it, as it is near my spine. I'll also take a wait and see approach but I will visit the Mohs surgeon in the meantime. If the wound can be stitched up I might go ahead and have the Mohs surgery. I'm not concerned about the dying aspect of this form of cancer; I'm more concerned with surgical mishaps and loss of mobility or functionality as a result. It may take years before it grows back to the point it was in early June and within that time a better form of treatment have have been developed or even a cure for cancer (http://news.health.ufl.edu/2010/9267/colleges/college-of-medicine/uf-researchers-find-cancer-fighting-properties-in-papaya-tea/). We'll see what happens.

Hey Rock,

I don't think anyone can tell you how to feel. I know that I've run the whole range of emotions concerning this crazy diagnosis. You have a double, triple, and quadruple whammy with the Crohn's, puppies, and work situation. I was also so tired of hearing how not serious this cancer is. How can cancer not be serious??? It's infuriating. I have a really close friend that has Crohn's disease as well and is struggling with it so I know how hard it can be. I think I've finally come to a place where I am positive in my resolution to beat this thing. I had my DFSP removed near my collarbone in October 2009 and have a 5 inch long scar and they had to remove a piece of my of my pectoral muscle. I go back and see my oncologist next week because I believe it's come back because there is a pink dot in the middle of my incision scar right where the initial tumor was. I'm not angry anymore, just resigned and hyper vigilant. Hang in there! And after you have to shave your head get a rocking wig! :) I find that reading other people's stories helps. There are also a couple of groups on FB that are dedicated to DFSP that is really supportive.

Thanks Rebecca! I am bald now and actually loving it. lol I'd love to say that I might never grow my hair out again as a choice. Except I just found a few days ago that because the tumor extends from my scalp to my skull, they're recommending radiation after surgery. That lessens the chance that I can have any sort of plastic surgery that will avoid a quarter of my head being bald. Either way for now, with my new (and only) tattoo, I feel like a rockstar. lol I had my last day of work on Friday and I am apprehensive about my income but I am doped up on prozac and anti-anxiety meds as well as becoming very adept at filling out financial assistance applications. I've become very lonely since my closest "friends" have accused me of only talking about cancer. Apparently I've become the cancery cancer obsessed b!+c#. :-( First Surgery on Thursday. Let the games begin.
What happened with your followup visit. Has your DFSP returned?

I was injured at work in march, and when I had a hematoma removed from the right side of my skull and found the remnants of a pesky tumor i'd had for awhile. I'd had tumors in my neck before and didn't think much about having another one. when my surgeon sent the tissue to be examined, the results came back as dfsp. again, i'm seeing a recurrin comment about how rare this is. i just had an apt with a dr that i feel just wasn't very helpful. i'm at a point that between the workers comp and the cancer diagnosis that i'm ready to say forget having yet another surgery on my temple. where do u go to find a surgeon that actually knows what this is?

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

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

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!

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

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.

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!!

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.

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!

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

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!

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

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

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

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

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

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.

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.

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

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

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.

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.

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.

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!

Zing77s, thank you very much for sharing.

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

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!