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Dermatofibrosarcoma protuberans (DFSP)

DeaVan
Posts: 2
Joined: Jan 2007

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

bstar
Posts: 22
Joined: Nov 2009

Hi JC,

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

bstar

sarahmendenhall
Posts: 2
Joined: Jan 2010

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

gaetanoarg
Posts: 1
Joined: Jan 2010

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

Thanks!

JC (not verified)

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

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

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

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

JC

JC (not verified)

Hi,

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

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

JC

JC (not verified)

Hi,

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

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

JC

JC (not verified)

Hi bstar,

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

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

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

How are you doing?

JC

bstar
Posts: 22
Joined: Nov 2009

Hi JC,

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

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

JC (not verified)

Hi bstar,

It is good to hear from you.

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

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

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

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

Take care, Bstar. I will be in touch.

JC

bstar
Posts: 22
Joined: Nov 2009

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

Take care,thanks for the quick reply
bstar

JC (not verified)

Hi bstar,

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

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

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

JC

bstar
Posts: 22
Joined: Nov 2009

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

bstar

JC (not verified)

Hi bstar,

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

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

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

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

Take care.
JC

Jan10
Posts: 1
Joined: Jan 2010

Hi

I just have been diagnosed, living in the UK, does anyone know a good specialist here in UK ?

THX

JC (not verified)

Hi,

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

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

Take care.
JC

davidW
Posts: 2
Joined: Jan 2009

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

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

Thanks so much.

David

Jared61
Posts: 1
Joined: Dec 2009

I had this same tumor removed from my arm ago. I had a similar situation but a dermatologist removed it from my arm without any markers not thinking it was anything but scar tissue from years of allergy shots. I found out 3 weeks later after the biopsy came back it was cancer. I had the surgery in NYC by a cancer surgeon and had most of the soft tissue from my shoulder to my elbow removed. My arm doesn't look pretty, but other than soreness from time to time, no return of the cancer. If you have any questions, don't hesitate to contact me.

HS
Posts: 1
Joined: Feb 2010

Hello,

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

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

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

HS

JC (not verified)

Hi HS,

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

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

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

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

I hope this helps.

JC

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

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

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

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

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

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

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

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

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

bstar
Posts: 22
Joined: Nov 2009

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

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

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

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

bstar

JC (not verified)

Hi bstar!

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

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

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

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

Take care! I will check in again soon!

JC

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

JC (not verified)

Hi,

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

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

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

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

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

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

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

All the best to you,
JC

bstar
Posts: 22
Joined: Nov 2009

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

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

bstar

bstar
Posts: 22
Joined: Nov 2009

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

bstar

ekurila
Posts: 1
Joined: Mar 2010

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

mmindlin
Posts: 4
Joined: Mar 2010

So... I'm the husband.

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

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

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

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

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

bstar
Posts: 22
Joined: Nov 2009

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

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

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

bstar

mmindlin
Posts: 4
Joined: Mar 2010

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

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

im_tall
Posts: 2
Joined: Apr 2010

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

bstar
Posts: 22
Joined: Nov 2009

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

im_tall
Posts: 2
Joined: Apr 2010

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

bstar
Posts: 22
Joined: Nov 2009

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

mmindlin
Posts: 4
Joined: Mar 2010

Bstar,

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

mmindlin

mmindlin
Posts: 4
Joined: Mar 2010
stupage1
Posts: 2
Joined: Apr 2010

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

JC (not verified)

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

Let me know how things go for you.

JC

bstar
Posts: 22
Joined: Nov 2009

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

bstar

JC (not verified)

Hi bstar,

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

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

How is your work with the CCS going?

Best wishes,
JC

aliza
Posts: 1
Joined: Mar 2010

I am 20 months post MOHS.

I was diagnosed by a local dermatologist who immediately did a excision with very small margins. Two weeks later he realized that he hadn't gotten it all and referred me to UCSF surgeons who recommended MOHS.

They took a 4 inch circle 3/4" deep out of my left shoulder and covered it with a skin flap.

After the immediate post surgery appointments follow up care was to be performed by my original dermatologist.

I have been twice. And both times he has simply looked at my back, poked it and told me to come back in 6 months. He obviously has never seen this before and I don't think he knows what he's looking for.

I am having quite a bit of pain still and no one seems to be able to tell me why, or seem concerned.

I want to see a different doctor and get some answers. I hear that a lot of you have received CAT and PET scans as part of your follow up care, do you know if that's normal?

bstar
Posts: 22
Joined: Nov 2009

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

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

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

bstar

nannylewis
Posts: 2
Joined: May 2010

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

bstar
Posts: 22
Joined: Nov 2009

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

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

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

Bstar

nannylewis
Posts: 2
Joined: May 2010

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

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

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

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

kendalldaniels
Posts: 1
Joined: Dec 2011

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

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

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

Rock_n_Remission's picture
Rock_n_Remission
Posts: 2
Joined: Apr 2010

I have DFSP on my scalp. Because I have normal African American curly hair, most doctors were convinced it was some sort of ingrown hair. For the past 10 years, I like so many others have been to doctor after doctor with my requests for treatment being ignored. I was finally able to change to a PCP (primary care physician) who referred me to a dermatologist who got me in the door at MD Anderson. My original biopsy was done on Feb 26. My surgery is scheduled for May 6th with a delayed closure scheduled for May 10th. I am in a strange position. The past 6 months of my life have not set me up well to handle this diagnosis. I also have crohn's disease which makes things all the more complicated. Like so many, I was laid off in Oct 2009. I have also managed to lose 3 puppies adopted on separate occasions from local shelters to canine distemper. I am currently working through a temporary agency and for the sake of my sanity, I am sitting out of school this semester. At 25 years old, I am so overwhelmed by this situation. I am tired of hearing how grateful you should be to have a "less aggressive" form of cancer. I AM grateful this rarely kills but I am not grateful how often it disfigures. I will in the next coming days face the reality of shaving my head. As any woman knows, our hair means so much to us. To face the reality that a sizeable portion of my head may be bald forever is overwhelming. I just want someone to tell me how to feel because I have run the gauntlet of emotions.

RebeccaSchuster
Posts: 5
Joined: Sep 2009

Hey Rock,

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

Rock_n_Remission's picture
Rock_n_Remission
Posts: 2
Joined: Apr 2010

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

sandoval_am
Posts: 1
Joined: May 2010

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

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