Dermatofibrosarcoma protuberans (DFSP)

beabaker

WillemwithaV said:

MOHS vs Wide excision
I am curious. How many of you received MOHS as opposed to wide margin surgery the first time you had it excised?

I was diagnosed earlier this year, and had my surgery in April. I'm 25 years old, so I guess age doesn't play such a big role, compared to other cancers.

The site was on my abdomen, right on my belt line, which is probably a good thing as it made me go in for a checkup earlier than i may have otherwise. The tumor was 2, maybe 3 cm across although perhaps bigger under the skin surface.

I am lucky enough to be in the Boston area, and was referred to an dermatological oncologist, who had seen numerous cases of DFSP. He determined that he would use MOHS despite the relatively small size and uncomplicated position of the tumor. As it turns out, I am very fortunate that he had the insight. Despite the immediate testing of MOHS, the doctor sent the tissue off for a second opinion at another lab, and they found that there was a microscopically small root structure that went outside of the excised area and needed to be addressed. So one week later, I was back in for another round of MOHS, and the results came back with negative margins for both the on site and secondary double check.

I did some reading and it seems like MOHS seems to have a significant statistical advantage of curbing recurrence over standard surgeries if used as the primary procedure, perhaps due to the very fact that it can catch tiny cancerous fragments that might otherwise be missed. I believe the stats show that the recurrence rate is cut from something like 25-40% in standard vs 2% for MOHS.

I am not sure if insurance will cover it for everyone, but it seems significant enough to me to push for if indeed it makes that much of a difference.


I am 6 months clear now, staying humble but optimistic that i've put it behind me. Best of luck to you all, and stay healthy.

MOHS in Boston, MA
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.

sen0760

unknown said:

Thanks and Best Wishes
Hi Sen,

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

JC

operation done and sucessful
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

terminator

sen0760 said:

operation done and sucessful
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

DFSP
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.

Unknown

sen0760 said:

operation done and sucessful
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

Glad to hear you are doing well
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

RebeccaSchuster

unknown said:

Glad to hear you are doing well
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

Just Diagnosed
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?

suh

Radiation Treatment
Hi all,
My dad had a surgery in May of this year to remove a DFSP growing on his back just above the waist line. The oncologist removed the tumor and 2-3 more layers of other stuff growing around the DFSP, which all came back negative for cancer. Oncologist said that although radiation is not a necessity(nor is my dad prescribed of any medication), he referred us for radiation consultation anyway just as an option. I've read through all the posts but rarely see discussion on radiation. Did anyone had experience with radiation or knows the pros and cons about it? I've tried looking it up online but without success. Thank you.

sen0760

RebeccaSchuster said:

Just Diagnosed
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.

RebeccaSchuster

RebeccaSchuster said:

Just Diagnosed
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?

Frustrated
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??

terminator

RebeccaSchuster said:

Frustrated
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??

Get a second opinion
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.

terminator

suh said:

Radiation Treatment
Hi all,
My dad had a surgery in May of this year to remove a DFSP growing on his back just above the waist line. The oncologist removed the tumor and 2-3 more layers of other stuff growing around the DFSP, which all came back negative for cancer. Oncologist said that although radiation is not a necessity(nor is my dad prescribed of any medication), he referred us for radiation consultation anyway just as an option. I've read through all the posts but rarely see discussion on radiation. Did anyone had experience with radiation or knows the pros and cons about it? I've tried looking it up online but without success. Thank you.

Suh, I have also been for
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.

RebeccaSchuster

terminator said:

Get a second opinion
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.

Second Opinion
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

terminator said:

Suh, I have also been for
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
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! (:

codyredd421

beabaker said:

Share your frustration
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
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

codyredd421

suh said:

Radiation Treatment
Hi all,
My dad had a surgery in May of this year to remove a DFSP growing on his back just above the waist line. The oncologist removed the tumor and 2-3 more layers of other stuff growing around the DFSP, which all came back negative for cancer. Oncologist said that although radiation is not a necessity(nor is my dad prescribed of any medication), he referred us for radiation consultation anyway just as an option. I've read through all the posts but rarely see discussion on radiation. Did anyone had experience with radiation or knows the pros and cons about it? I've tried looking it up online but without success. Thank you.

Hi suh,
Just saw your post
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.

idnar

steenie said:

Hi
That's great news. I am
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

OHSU
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

relbags

suh said:

Radiation Treatment
Hi all,
My dad had a surgery in May of this year to remove a DFSP growing on his back just above the waist line. The oncologist removed the tumor and 2-3 more layers of other stuff growing around the DFSP, which all came back negative for cancer. Oncologist said that although radiation is not a necessity(nor is my dad prescribed of any medication), he referred us for radiation consultation anyway just as an option. I've read through all the posts but rarely see discussion on radiation. Did anyone had experience with radiation or knows the pros and cons about it? I've tried looking it up online but without success. Thank you.

My Dad had DFSB too
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.

Kite

relbags said:

My Dad had DFSB too
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
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.

Unknown

This comment has been removed by the Moderator

RebeccaSchuster

Kite said:

Hi all, I was diagnosed and
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.

Surgery
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

bstar

unknown said:

Thanks
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

Mohs
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.