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Dermatofibrosarcoma protuberans (DFSP)

DeaVan
Posts: 2
Joined: Jan 2007

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

steenie
Posts: 3
Joined: Jul 2009

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.

JC (not verified)

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

steenie
Posts: 3
Joined: Jul 2009

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.

JC (not verified)

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

steenie
Posts: 3
Joined: Jul 2009

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

JC (not verified)

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

sen0760
Posts: 9
Joined: Jun 2009

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

JC (not verified)

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

JC (not verified)

Hello Sen,

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

JC

JC (not verified)

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

siege
Posts: 1
Joined: Jul 2009

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

sen0760
Posts: 9
Joined: Jun 2009

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 .

idnar
Posts: 1
Joined: Sep 2009

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

Jase75
Posts: 1
Joined: Jul 2009

I am 33 and I was diagnosed with DFSP in July 2007. I had a lump in my upper left shoulder for 10 years, it grew slowly and eventually started hurting and I just felt as if something were wrong with my body. I went to the doc and he sent me to a surgeon. No one did a biopsy, but they decided it had to come out after a CT scan and an MRI. I had the surgery July 2, 2007, two weeks later at my follow up, I found out it was DFSP. They said they thought they had clear enough margins but the surgeon said if I were his family he would tell me to have another surgery. I did not want another one! I did get another opinion and this doc said I would be ok. I went to my follow ups religiously! Then I got laid off in Nov. 2008 and lost my insurance...I have not been to any more follow ups. But for the past month I have had a dull pain under my right arm, its not there every day, but the majority of the time it is. In the past few days I have noticed a lump under my arm and its hurting a little worse...getting a bit worried. Anyone else here have their DFSP spread????

JC (not verified)

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

sen0760
Posts: 9
Joined: Jun 2009

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

JC (not verified)

Hi Sen,

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

JC

sen0760
Posts: 9
Joined: Jun 2009

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
Posts: 3
Joined: Sep 2009

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.

JC (not verified)

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
Posts: 5
Joined: Sep 2009

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?

sen0760
Posts: 9
Joined: Jun 2009

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
Posts: 5
Joined: Sep 2009

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
Posts: 3
Joined: Sep 2009

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.

RebeccaSchuster
Posts: 5
Joined: Sep 2009

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
Posts: 2
Joined: Sep 2009

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.

terminator
Posts: 3
Joined: Sep 2009

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.

suh
Posts: 2
Joined: Sep 2009

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's picture
codyredd421
Posts: 3
Joined: Mar 2009

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.

relbags
Posts: 1
Joined: Oct 2009

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
Posts: 1
Joined: Oct 2009

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.

RebeccaSchuster
Posts: 5
Joined: Sep 2009

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

silena
Posts: 1
Joined: Sep 2009

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

JC (not verified)

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

bstar
Posts: 22
Joined: Nov 2009

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

JC (not verified)

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

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

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.

bstar
Posts: 22
Joined: Nov 2009

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.

bstar
Posts: 22
Joined: Nov 2009

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.

JC (not verified)

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

anna_maria
Posts: 2
Joined: Jan 2010

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.

teef
Posts: 1
Joined: Feb 2010

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.

anna_maria
Posts: 2
Joined: Jan 2010

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!

ryan and family
Posts: 15
Joined: Jan 2012

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.

bstar
Posts: 22
Joined: Nov 2009

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

Zooki
Posts: 1
Joined: Dec 2009

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?

bstar
Posts: 22
Joined: Nov 2009

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-

bstar
Posts: 22
Joined: Nov 2009

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-

JC (not verified)

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

JC (not verified)

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

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