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Dermatofibrosarcoma protuberance (DFSP) Recurrence

Comforter
Posts: 1
Joined: Jul 2012

6 years after having DFSP removed surgically with wide excission, my dermotologist biopsied a spot on my scar and found it had returned. I went to the same surgeon and asked about Mohs. He said since the tumor was on my body (upper chest/shoulder) it wasn't necessary. He said Mohs is for areas where there isn't as much tissue to work with, like the face. Everything I had read told me I wanted to have Mohs surgery, but because I am a 'good patient' (wimp!) I went along with the good doctor. He performed another wide excision. The pathology report came back within the week. It showed I still had DFSP in one spot up on the skin. I also have it at the bottom of where he scooped out the tumor. The problem with wide excision is the sugeon is just cutting out a wide area, but they don't know if they got it all until the pathology report comes back. It's guess work. Mohs is really the way to go. Getting it all out on the spot makes more sense. The surgeon can't see with the naked eye how the DFSP may be reaching out in different directions. My regret that I didn't go with Mohs the first time 6 years ago, or go to a surgeon that does perform Mohs the 2nd time.

The sugeon is referring me on to a cancer center. I am scheduled to have an MRi and a CT scan. I hope they can get a clear view with the stitches from the recent surgery. I am hoping the DFSP is just narrowly missed and it hasn't spread much further. I am realy woried about it spreading to my lungs.
Two weeks ago I notice two of my fingernails curling downward at the end of my fingertips. I thought that was odd so I Googled what might cause it. Lung issues was a listed as a cause. Of course that has added to my worry.
Now it's a lot of wait and see.
I spend a lot of time reading and re-reading on-line anything I can find on DFSP. I want to have an understanding of it. I dont talk a lot about it with my family or friends, but it is almost always on my mind since the recurrence. I don't want my kids to be concerned about it. No need to worry about the unknown. I didn't worry too much about it initially since it's supposed to be so slow growing. Since the recurrence was discovered months ago, it has taken up a lot of mental energy.

natmcg
Posts: 119
Joined: Jun 2012

Hi, I noticed when I loged on that you listed me as a friend( not sure how that works) but I read your post and can relate to how you are feeling . Since I was diagnosed with DFSP in May of this yr I have been on the net almost every night reading every thing I could find. I even have my ph set up so on one in my family knows how much time I spend researching..I find it hard to believe that Dr.s who know about DFSP would even consider anything but MOHS(except where children are involved,waiting around with an open wound wouldnt suit them) I am lucky that in my case MOHS was always going to be the next step. It was my choice to have the first excision. My MOHS surgery was done on 20th July and my 5stitch scar is now going to be a 35 stitch scar . But at least I know it's all gone.(99.9% sure)
I hope next time you write it will be to say that your MRI and CT scan were clear and that you have had those fingernails looked at and investigated. Are you having X ray done on your lungs? ,
I know its not easy but try and be positive. Hopefully you will have some answers before to long.
Best wishes
Nat.

Osterbar
Posts: 1
Joined: Aug 2012

Hi, I'm new to this board, and am a 2-year survivor of synovial sarcoma, but I'm actually writing about DFSP. My wife is a 50+ year survivor of DFSP. She had it on her leg as a child in the late 1950s, and had several recurrences before they did a wide-area excision. She was fine until 1991, when she had a recurrence, treated at the time at Mass General Hospital with surgery followed by radiation (60 gray). She has had issues recently with site of a skin graft taken for her 1991 surgery, but has not had a recurrence of the tumor in more than 20 years/

I urge you to go, if you can, to a cancer center with expertise in sarcoma. I highly recommend Mass General not just because of our experience there (I was treated there myself, with an aggressive chemotherapy regimen that few other cancer centers use), but also because its reputation is well earned. I'm a medical journalist by profession, and write about oncology for a professional audience, and know from my professional (and personal) experience that some places are better than others, and that only a handful have seen enough sarcoma cases of any variety to be able to claim expertise.

DFSP can be treated successfully with a combination of careful surgery - not necessarily Mohs - and radiation. Recently, targeted cancer agents have been tried with some success in clinical trials.

Good luck, and let us know how things work out.

natmcg
Posts: 119
Joined: Jun 2012

Hi Thanks so much for your reply and information. Im in Australia so not all your recomendations suit me, but so far I am doing well.I hope "Comforter" checks in soon and sees that there are people here on this site that do care and that we all need a little help coping from time to time.
Best wishes to you and your wife.
Nat

Coffey
Posts: 6
Joined: Feb 2013

Hi Nat and others,

I too have had a wide insision for a DFSP and its good to know that others share this experience. I am Australian living in New South Wales and recently went for my first first annual CT and MRI and to date all is well except that the Surgeon left a metalic clip in my arm!!

I an open to any and all advice from all those who have experience with this disease both here and from overseas as not much is known about it even in the medical fraturnity. It seems I sent them all back to their medical journals

Good health to you all

Jeff

 

 

 

 

Nattyc
Posts: 1
Joined: Feb 2014

Hi , you sound like somebody i need to talk to. I feel so alone.when I was 5 I banged my chest on my bike which caused a bruise like scar. For many years consultants tried various treatments to shrink it but nothing worked. Once I had stoped growing I had an op to remove the scar, after which I first found out I had dfsp in my right breast also, I was 21 at the time but they removed. Then i had another op a few months later as they hadn't removed it all. Then I found another small lump which turn out again to be dfsp as they still hadn't removed it all. Four years ago I had to have breast reconstrucation :) finally felt like a women ish again. Then 3 years ago I was suffering server headaches, after an MRI they found a tumor in my pituitary gland (brain) called a prolactinoma which I take medication for and may do for the rest of my life. However after moving cities I spoke to a new consultant who said that prolactinoma is linked to the breast as they produce milk even tho Im not pregnant. So now I wonder are they related? As dfsp so rare and each case varies so much in difference how would my consultant really know? now this evening  ten years on, I have just found yet a another very supisous lump just above my scar on my breast. So trip to the doctors in the morning all I know is I had enough bad luck for my short 30 years, but if it is dfsp I'll battle it but it's yet another set back, athough again il win but as I'm finally at university studying law and criminology which I have waited all my life to do I need to know what options are out there. As I don't want to spend my 31st year as I did my 21st (worst year of my life to date) please any information you can provide for me to research would be greatly appreciated. 

Kind regards

nattyc

Ontario48
Posts: 55
Joined: Jan 2013

Hi Nattyc,

I would suggest you see a STS specialist as sarcoma is a tricky cancer.  I have read about spread to the pituitary gland.  Sounds like you've had quite the journey.  Keep on top of it and don't stop until you are satisifed.

Cheers

natmcg
Posts: 119
Joined: Jun 2012

Hi, I just wanted to say keep fighting. Sounds like you have alresdy been throuhh so much and have still managed to not loose sight of you goals. Im sure you will find a good specialist and get on top of this, and return to your studies.

Please stayin touch and let us know how your going.

Best wishes 

Natalie.

Grich5
Posts: 1
Joined: Aug 2012

Just wanted to see where you are with DFSP? I just joined CSN and saw this post. I was diagnosed with DFSP on my upper right chest this past April, and had mohs surgery 2 days ago and reconstruction. I am very happy that I had mohs! The surgery took all day because I had to have 2 rounds of mohs and repair, but my doc felt very sure that she got it all. She also explained to me that if she would have done a wide excision she probably would have missed the little bit that was found in my chest muscle. Good luck to you and I hope you are able to have mohs surgery.

natmcg
Posts: 119
Joined: Jun 2012

Glad to hear your surgery went well. I had Mohs done 5wks ago and did not need much in the way of reconstruction as the area was pulled together for stitching.The cancer was in the fat tissue but had not made it to the muscle. ( I now tell friends I had half of a tummy tuck,my scar runs from my left side to almost the middle of my upper stomach) Skin surface stitches were taken out on day 10,but have been told that internal stitching can take up to 6mths to dissolve. Which means I can feel small lumps under the scar. My surgeon is one of the most experienced DFSP doctors in Australia so I am confident things will keep going well.
Hope your recovery is progressing well.
Take care
Nat.

e79lewis
Posts: 3
Joined: Oct 2012

Hi Nat

I also live in Australia and was diagnosed with DFSP last year. I had my MOHs surgery in London however as I was living in the UK when I was diagnosed. Having just moved back to Sydney I am struggling to find a doctor to take on my case. Would you mind telling me who your DFSP specialist is ? I was operated on by a dermatological surgeon as the cancer was in the skin, next layers of tissue and muscle. I have found one DFSP specialist but he is an orthopaedic surgeon. 

Thanks for your help.

Emily

natmcg
Posts: 119
Joined: Jun 2012

Welcome to our little group,but sorry to hear you have needed to find us. I'm more than happy to recomend my Doctor to you he operated on me at the Skin & Cancer Foundation Hospital in Westmead.ph 02 8833 3000. His name is Dr Duncan Stanford,and he has a lovely caring nature. I originally saw him at jis office on the south coast (Kiama) because I live near there. And travelled to Westmead for the day surgery. But he may do consultations in Sydney as well. The Kiama ph.no.02 4232 2011. I'm sure they will be able to work something out. If you Google him there is some info on him there also. I did ask him how he got involved with DFSP and he told me he had done some research and presented the information at a conference and from then on his colleagues started to refer DFSP patients to him. There are other dermatologist in Sydney that I looked at as they did Mohs, but my GP recomend I see Dr Stantord as he new he had experienced with our rare cancer. And Im glad I took the advice. My DFSP was under my left breast in the fat tissue and skin luckily it hadn't got to the muscle. I'm due for my first 6mthly checkup in Feb. My scar has healed well and looks ok to me, but Ill feel a lot better when I get the all clear from Dr. Stanford. I'll check this space again soon so please let me know how you get on. If you don't mind me asking? Do you think you need more treatment or are you just looking for someone to do the checks incase of reoccurrence.? Either way good luck. If you do feel you want to talk about your cancer to others have had DFSP there are a couple of nice people Iv been keeping in contact with on the thread called DFSP friends. Bye for now. Natalie.

e79lewis
Posts: 3
Joined: Oct 2012

Hi Natalie

Thanks so much for that - its really helpful to find someone who has performed Mohs on DFSP here in Sydney.  I will give them a call.  I saw a dermatologist this week but he has no experience with either, and today I saw a DFSP specialist (orthopaedic surgeon & sarcoma specialist) at Royal Prince Alfred Hospital but they were very against Mohs and said wide excision was the only way to go. I didn't like their approach at all.  I just need a doctor for the ongoing monitoring now, as my surgery last year removed all the cancer. But I would like to find a doctor who agrees with the Mohs technique as I really think it was the right way to go.  It seems like its a war between the dermatologists and orthopaedic surgeons as to which is the right method to use ! My scar is 15cm long (from a 7.5cm lump) and I shudder to think what it would have been if I had wide excision instead.  In the UK they monitor every 3 months, and I had my first check up before I left which went fine. I am due for another checkup in April and then an MRI in September.

Thanks again, Emily

e79lewis
Posts: 3
Joined: Oct 2012

Hi Natalie

Thanks so much for that - its really helpful to find someone who has performed Mohs on DFSP here in Sydney.  I will give them a call.  I saw a dermatologist this week but he has no experience with either, and today I saw a DFSP specialist (orthopaedic surgeon & sarcoma specialist) at Royal Prince Alfred Hospital but they were very against Mohs and said wide excision was the only way to go. I didn't like their approach at all.  I just need a doctor for the ongoing monitoring now, as my surgery last year removed all the cancer. But I would like to find a doctor who agrees with the Mohs technique as I really think it was the right way to go.  It seems like its a war between the dermatologists and orthopaedic surgeons as to which is the right method to use ! My scar is 15cm long (from a 7.5cm lump) and I shudder to think what it would have been if I had wide excision instead.  In the UK they monitor every 3 months, and I had my first check up before I left which went fine. I am due for another checkup in April and then an MRI in September.

Thanks again, Emily

natmcg
Posts: 119
Joined: Jun 2012

Hi Emily,
I hope every thing goes well. I'm with you in the though "Mohs being the way to go when tackling DFSP" I can't understand why some Dr.s prefer wide excision. How can they possibly know how wide is wide enough??. Maybe it had something to do with them not wanting to wait around for the pathology to be done.
I asked the first Dr.( he is trained in detection and removal of skin cancers) to temove the tumor with the recomend margins, even though he recomended I wait and see Dr. Stanford. I think I just wanted it over asap. But clear margins were not achieved so then I went in for the Mohs. By that time my first scar was pretty much healed. So really if I had have heeded the advice of my skin Dr. I could have had it over with in one go.
Dr. Stanford is a dermatologist,surgon and a pathologist so it actually turned out cheaper for me to have him do it.
I am a little curious about the variation in follow up procedures some people like yourself talk about MRIs but that wasn't mentioned to me. And another lady I am in contact with is in tbe same situation.
It's something I intend to ask about when I go for my first (6mthly) check up nxt mth.

Kind regards
Natalie.

Ontario48
Posts: 55
Joined: Jan 2013

Well, as much welcome as someone would want having to deal with cancer in all.  Natalie has been a great chat over the months that I have been on here.  Our situations are almost identical except for procedure.  She had Moh's, I had WLE.  So it's really good to hear what she has experienced and to be able to share what each of our doctors are saying.  Glad you are able to get a personal recommendation for a care giver in your area.

I just had a good (meaning thorough) chat with my original surgeon.  I had my protuberan removed in whole at my first procedure with a doc in my town (3x1" incision).  General surgeon.  When it came back DFSP he referred me to Women's College in Toronto to deal with the rest of tumor as they have a large skin cancer centre there and Moh's specialists.  When I got there though they decided to do Wide Local Excision to my surprise.  There continues to be great debate on this part.  I've read probably everything posted online on the subject and there really is a divide.  I applaud your doc as due to the size of your tumor most would have chosen WLE (based on my laymens knowledge of course).  The tipper is usually the size of tumor and location.  Anything face, head and neck is alway Moh's, trunk and extremeties is usually WLE.  May I ask where yours was and how it got so large before you had it removed.

I guess for me I was lucky to have a Moh's surgeon to do the procedure.  He removed smaller margins than a typical WLE (1cm all round most recommend 2-5).  I think this was due to his experience with Moh's.  Moh's study shows clearance achieved in most situation within 1cm.  Another rule of thumb if its' deep (as mine was) is to take the fascia as well.  If he was wrong on the 1cm it would mean another surgery.  My pathology came back clear, so this is good.  But this is where things get a little mucky for me.  In speaking with my original surgeon he explained the pathology piece in great detail as I had done lots of reading on this and I wanted to understand what they did with my "deposit".  Moh's completely clears all edges of the margins, WLE does not.  The testing that is completed on WLE is as extensive as it can be but it is not as thorough as Moh's. This is due to the enormous size of most specimens for WLE (as he explained it), it would take forever in the lab.  So there is a higher margin of error.  Cancer cells can be missed in the procedure.  With Moh's, there could be something missed outside the test area, as in Natalie's case.  Her doc got clear margins but then said I'm going to take a little more to be sure.  He found more.  Either way, it's difficult to get all of those little cells floating around.

Good news is that is considered a low to med grade cancer which very rarely metastisizes, usually only with the FS variant (Fibrosarcoma).  Reoccurance is common and most doctors don't do any other screening (MRI, CT) here unless you have DFSP-FS or a recurrence. I suspect your screening is more thorough due to the size of your tumor.  It's locally agressive. MRI is the best test to detect any interior growths.  Geeze, it doesn't take long to fill up a page does it.

No matter what you can always demand to be referred to a Moh's surgeon if that is your preference.  So us three ladies are lucky as we have Moh's centres near us.  We all know the signs of this tumor if it should regrow.  It's a wait and see kind of thing unfortunately.  But I have been told by the Moh's surgeon, regrowth is almost alway in the original site, only 1% new growth elsewhere has been reported. So at this point we must manage our scars.  And don't be discouraged if you suspect something and you get the push off "it's nothing".  That's how all of this started for me.  Most doctors, specialist or otherwise, don't have a clue what to look for as it is so very rare.  I have had a "smudge" appear below my scar. The doc said "its nothing", ha, like I haven't heard that before LOL.  But at least I know to watch it and pay attention to any changes.

I'm watching the ladies golf this afternoon, Australian Open.

Cheers, Joanne

natmcg
Posts: 119
Joined: Jun 2012

Hey Joanne, I just read your post to Emily. I love the way you can explain our type of cancer in normal terms. You really HAVE done your homework. And its great that one day when someone new turns to this site they will be able to read your clear and concise information. As you know I googled quite abit in the beginning( and scared the hell out of myself). If I had have know you then I could have been saved a lot of trouble(and worry) .
Just to make it clear for anyone else reading these posts. When I had my Mohs.the original large peice removed on the day which took over 2hrs to be tested) came up clear margins. But when that slab as the Dr.called it was sent to the lab for the more intense testing (stained I think its called) they detected DFSP on one edge. But the extra doughnut shaped peice that be remover just to be double sure had clear margins all round on the inside edge. So because he did that on the day it saved me going back again. And that's the whole point of having Mohs.
He also explained, what you have read that it's a very hard cancer to detect as the spindels(roots) look so similar to normal cells and it takes a well trained eye to see them.

I'm glad someone appreciates our golfers....personally ...watching golf is like watching paint dry....not that I don't appreciate the skills involved...but all that walking makes me tied..and Im not even doing it...lol.

Nat.

Ontario48
Posts: 55
Joined: Jan 2013

LOL, Well Nat, you do know I watch paint dry as well (doing renos and all).  I would rather play it but sometimes, when its friggin cold here (-22C), and I don't feel like doing anything, it's my excuse to sit and do nothing.  I must also point out that I tend to have a wee nap during the round...our secret!! : )  Thanks so much for your kind words.  There are all kinds of "horror" stories online.  I focused on information that came from reputable sites, not speculation or opinion.

In regards to Emily's concerns about Moh's vs WLE, if I had to do it again, I would insist on Moh's.  BUT we all know how hard that is in the face of professionals.  My doc was a Moh's doc and he insisted on WLE (holy confusion).  I'd ask for drugs (happy, happy, happy) next time!! Didn't really give a reason but said in "his experience" it was the way to go.  We put all our faith in what they say.  At the end of the day if we are all clear and continue to be it's a mute point.  The key is that there is no re-growth.  And really we are talking about tiny minescule cells, anything can happen and we cant' blame the docs, the Moh's or the WLE.  It is what it is and will be what it will be.  We can all feel better knowing that this type of cancer has an extremely high cure rate regardless.  If you had to pick a cancer, this one is a good one to choose due to its mortality rate. 

Dont' get me wrong, it's a big deal to be told you have cancer. You will go through all kinds of emotions...don't rush yourself it truely is a journey that you must work through.  Time WILL heal you!  And it's nice to make new friends and have chats with those who know what you are going through.  IT HELPS!!

Cheers for now, Joanne

Coffey
Posts: 6
Joined: Feb 2013

Hi Joanne,

 

I am Jeff from New South wales, Australia and I  thank you" for your positive outlook. It maybe -22 where your are but I live in sub tropical Aust and even to move makes a sweet

I am new to DFSP but I plan not to let it define me. My first annaul MRI and CT were clear and I feel well. I retire on 1.3.13 "(this Friday) so you can imagine I still have 25% of my life to go. The dignosis came as a suprise but it has helped me to re evaluate my life. I was going to work longer but I will now persue volunteer work.

Trust all is well with you.

Best Wishes

 

Jeff

 

Coffey
Posts: 6
Joined: Feb 2013

Hi Joanne,

 

I am Jeff from New South wales, Australia and I  thank you" for your positive outlook. It maybe -22 where your are but I live in sub tropical Aust and even to move makes a sweet

I am new to DFSP but I plan not to let it define me. My first annaul MRI and CT were clear and I feel well. I retire on 1.3.13 "(this Friday) so you can imagine I still have 25% of my life to go. The dignosis came as a suprise but it has helped me to re evaluate my life. I was going to work longer but I will now persue volunteer work.

Trust all is well with you.

Best Wishes

 

Jeff

 

Ontario48
Posts: 55
Joined: Jan 2013

Hi Jeff, nice to have retirement so close.  Enjoy, Enjoy, Enjoy!  When did you notice a problem, how was it detected and what did you have to go through.  It`s amazing all my buddies on here are Auzzies...so cool. I would rather the heat than the cold.  I find its easier to cool off then warm up.  I suspect from your post that you have had your removal and all is good!!

Four sleeps to retirement...Wahoo...Cheers, Joanne 

natmcg
Posts: 119
Joined: Jun 2012

Hi Jeff, I'm glad you found us ,but sorry you had the reason to look us up. Your so write about the weather here...sun & rain.....means humidity..and like you said take two steps and your sweating. Poor Jo! Surrounded by sweaty Aussies while she freezes her butt off. Lol. Jeff. I'm down on the south coast of NSW and I was fortunate enough to be diagnosed by a skin cancer Dr who had seen DFSP once before. And he the referred me to Dr. D. Stanford who actually did know about DFSP as he had researched it and presented a talk about it a a skin specialists conference a few years ago and had since deal with 12 or so other cases. So I really was very lucky as he was in no doubt that Mohs was the procedure I needed. He operates at Westmead cancer hospital (Sydney)so that was only a one and a bit hour drive for me ( well not me my husband drove). Like Joanne I'm curious to know what lead to you being diagnosed. A lot of people seem to be misdiagnosed for yrs before biopsies are done. Which was the case with me (10 yrs being told by different GPs that I had a fatty nodule and not to worry. I even had an ultrasound done about five yrs ago that was clear. Of course it was clear.! Spindle cell cancers don't show up on ultrasounds. Why one of the GPs didn't suggest a biopsy is a mystery. Specialty when I had mentioned that the lump was slowly growing and getting sore oh well that's all in the past . It's been dealt with now.
. So it seems you Jeff and you Joanne have both had good results at your check ups. And that is really great news. :)

Bye for now
Natalie.

Coffey
Posts: 6
Joined: Feb 2013

Hi all,

 

You ask what lead me to being diagnosed, I was growing a lump on the rear of my left upper arm that was starting to protrude. It was like someones little finger was under the skin and pushing through. On the outside it was a clearly raised lump. I have had cysts before but I knew this was different. Off to the Skin Specialist who said I should not worry. Back to the GP who agreed to take it out. It was approx 4 weeks of having the sample remain a mystery until Healthscope sent in to a Russian pathologist in New Zealand who knew his craft.

I was lucky to have a GP who listened to me. The lump was growing and blind Freddie could see it was something to explore. He did and continued my absolute faith in Doctors of Egyptian heritage but that is another story. He is a fine caring GP who I owe a lot to.

 

Anyway I am now retired and to date am well in sunny Port Macquarie although it had experienced tropical rain for so long I was considering building an ARK. Hoping to follow my goals for retirement but at this time we are re building and refurbishing our 'new'home.

Keep the faith, remember to tell the doctors its your body and you are best placed to know the changes.

 

Regards to all

 

Jeff

 

Coffey
Posts: 6
Joined: Feb 2013

Greetings Joanne from Australia,

My short story is this;

I noticed an unusual lump on the rear of my left upper arm about 6 inches down from my shoulder. It was pertruding. I was referred to a Skin Specialist who said "don't worry its only a cyst!! OH YEAH.. Even I knew that was wrong.

Nevertheless, and back with my GP I persuaded him to excise it and after almost 4 weeks of pathology and after sending the sample away from Australia the DFSP decision came back. The remanents of the sarcoma lession by this time had come to the surface after the GP's cut and it was radiating red lines out from the 1 inch cut. No this was not an infection but the disease breathing and growing as I put it. Next followed quick surgury and a wide long insision with the doctor not really knowing why the cut was so big or had to be. I got the impression he read up on it that morning. After 6 months of wound infection on 14.9.12 the wound healed over exactly 6 months after the op. First C/T and MRI this month were clear except to find that a metalic clip had been left in my arm.

The value of any major health problem is that you get a chance to re evaluate the bigger questions of life and to adjust if you are given time. That is why I retire in two days time. Work is good but the best day in the Office does not count for much when you are dying (hopefully in twenty five years time). I want to remember the continuing great marriage I have the good I have done by volunteering, the fact that I have watched my grand children grow and have become part of their lives. This also means by default more quality time with my adult children. I could say that DFSP was good for me for these reasons but only if it does not re occur.

Enough of me. How are you??? What is your story and is your Countries health system more across this than mine?? Today the weather is fine after almost 3 weeks of rain and heavy winds. Welcome to global weather change!!!

Best wishes

 

Jeff

 

 

 

 

Ontario48
Posts: 55
Joined: Jan 2013

OMG, and to think that I refer to my place as the "chop shop".  They were like a conveyer belt on surgery day but at least they knew their stuff and did a good job.  The more stories I hear I must stay that I was pretty lucky with diagnosis.  I got the nothing twice in a three year period, before the outward growth started,  I wasn't too worried about it.  Even the first surgeon said " Jo it's not cancer".  But that lends to the rarity of it. 

Once it started to grow rapidly over this past summer my GP said it has to come off and the surgeon agreed.  He did an amazing job of removing the lesion and the specialist I saw after diagnosis said he did a great work up as it's very difficult to diagnose this type of cancer. Once we got to biopsy it was very clear what it was, no messing around and I was referred to Womens College in Toronto to the skin cancer and Moh's clinic.  The big surprise from there was that they did WLE (wide local exision) not Moh's.  Most of what I have read Jeff is that's due to the location, WLE is preferred.  Like you, I had room work.

I noticed my growth as a smudge of darker skin about 4 years ago now.  Mine was just under my breast.  It was extremely itching for along time.  then last summer I noticed a stalk growing.  We joked it was a third nipple.  It got to the point that it was uncomfortable and I decided something had to be done about it.  So in September I got the referral to a local surgeon who removed it, biopsy, DFSP, lots of reading, referral to WC, chop shop on Nov 29 (1x6" with removal of facia...ouch ), oh and wide awake...never again, waited a month and then clear margins.  It's all so sureal.  Through it I didnt shed a tear (I was on a mission), once I got the all clear I broke down...release.  Still working through the "what, I have cancer now I don't".  Very weird.  The whole ordeal was three months.

Health care is amazing here.  Nat and I chat and read about how lots of docs don't do MRI/CT's.  I didn't get either.  Not sure what makes some do and some don't.  I just got a referral to a dermatologist who I hope to see in the near future.  I think I will ask for a screening just to be sure.  My wound is healing but can be bothersome at times.  Doc says it will take up to a year to heal completely.  I do have a little "smudge" below the incision to which I've already got the "its nothing"...go figure.  I will watch it for now.

Well you have three more sleeps (my time) before you retire.  How exciting. I hope you have a big bash to celebrate!!  I'm getting ready for another big snow fall...30cm.  I'd switch countries in a heart beat!!  Keep well and keep in touch.  Reach out to Natalie, she is great to chat with.

Cheers for now...Joanne (or as my friends call me jo)

Ontario48
Posts: 55
Joined: Jan 2013

Hope you have  a wonderful party planned to celebrate such a wonderful milestone!!

Cheers, Joanne

Coffey
Posts: 6
Joined: Feb 2013

Thanks all for your good wishes.

Yes I am now över the hill" and retired but I have never worked sooo hard on our new place which was a poor house in a very good street and needed a reno. My first CT/MRI was clear and to date my left arm has not exploded as i feared if i put stress on it with heavy renovation work etc. That's good!! and life is good.

Cannot help my self.

I have been working since I was 9 years old starting in my Dads family businesses and yes I have started looking for work again!! despite being on superannuation. The government here (in Australia) wants you to work and the tax rate drops if you return to work. I hope for two days work and day or two of charity work then lawn bowls for three days with the mates as we can play all year round or I would like to try Chess which I want to learn to play.

I think the Canadian version of lawn bowls is on ice with kettles or something. I saw it on TV and it looked good with people sweeping the ice as the kettles drifted to their mark.

 Do not let the Doctors have their way without having your say!!!

Best Wishes

 

Jeff

 

 

 

natmcg
Posts: 119
Joined: Jun 2012

Hi Jeff, I suppose you were expecting.a reply from Jo(not from your neighbour down under) Well Iv spoken to her and she is having a problem finding you. Lol. So your tests are clear and your arm hasnt exploded, that's good news. Reading your post gave me.hope, Oh No... Im not talking about my.DFSP!! I'm talking about some day getting all.the half finished projects that my husband has around the house completed. I can't see him having ANY spare time for bowls when he retires. On a.more serious note I have decided to ask for a chest xray or maybe an MRI. As Jo says it gives us peace of mind and should anything go wrong again in the future at least they (the Drs ) will have something to compare any future test to. Keep enjoying your retirement or is.it semi retirement now.lol Nat.

Ontario48
Posts: 55
Joined: Jan 2013

Curling is what we Canucks call it.  AND we rocked at the Olympics baby!  There is a curling league where I live.  Heard they have lots of fun throwing the stone and drinking it up LOL.

Glad all is going well for you Jeff.  And Nat thanks for the directions...your suggestion worked.  Not sure why you can't see it from your favorites.  Again...system is messed (suppose it's $$$)

Anyhow, you all take care and Jeff keep having fun.

Jo

AnthonyBrose7
Posts: 3
Joined: May 2013

Hello all

I just wanted to tell all of you about my experience with DFSP

For a few years now, I have noticed a red lump growing on the side of my neck under my jaw line.at first i thought it was nothing and did noithing about it. They 2 years ago I told my dermatologist about it. He said it was nothing and gave me a prescription for cortisol cream.after a few months of nothing happening I went back to him last september and he took a biopsy of it. This is when I first found out that it was a tumor.

For the next couple of months I went to appointments and had an mri done to see how bad it was.

Finally last tuesday I had it removed. When I saw how much they took off I was in shock. they removed part of my cheek, up to where my hair line started, and down to my neck. Lets just say I have a big hole in my face now. They still have to open it up and dig deeper going into the deep tissuel; this is where the facial nerve is and if they screw up, my face will be even more disfigured.Once this is all done, I will be getting a prostesis to cover up the hole and I will have to wait another year for them to make it look nice. Because they want to make sure it doesn't come back.

My biggest advice for everyone is to go to your doctor if you see anything abnormal on your body like a red lump. It is not normal and you need to get it checked.

natmcg
Posts: 119
Joined: Jun 2012

Hello Anthony,
So sorry to hear that you have joined our "one in a million club" but welcome and thanks for taking the time to share your story. How right you are, we should never ignore changes in our body and we should never let Dr.s tell us its nothing to worry about untill they have done the appropriate tests. Im one of the lucky dfsp people mine "poped up" (all be it very slowly 10yrs +) under my left breast so scaring isnt a big issuse for me.(lots of skin, fatty tissue etc to spare).
How awfull it must have been not to be prepared for such a large excision. If you had an MRI shouldnt the surgon have been able to make an educated guess as to how much he was going to remove? And prepare you for the outcome. Still the most important thing is that they get clear margins because that means less chance of reocurence. You say that you need more surgery. Is this because clear margins have not been acheived? Im guessing you fidnt have MHOS.
Sounds like you still have a way to go before this is all behind you. But with the help of a good plastic surgon in time you will be as good as new.:-) I have read some other posts on this site in other dsfp threads by people who have had dfsp on and around the face and they have come through it just fine and so will you. I hope you will drop in agsin and let us know how your doing.

There are a few of us here that post and share information and support each other.

DFSP friends is where we mosty chat but you can be sure one of us will respont where ever you post. We' er a curious little bunch and seek out newcomers to dfsp where ever they are.
Good luck in the coming weeks
Natalie   

PS. btw Im in Australia, my dfsp friends are from canada,denmark,england,america,and italy.Where in the world are you..?

ryan and family
Posts: 15
Joined: Jan 2012

Hello AB7.  I visit a few times a year.  My son was diagnoised 2 years ago and had substantial WME on his head (5cm = about 1/3 surface area).  Over time he developed a red bump at a young age, and yes, he is part of the 1 million (10 million for children) club.  He has been amazing through this, and with frequent check ups in Canada, is doing well.  We take 4 month blocks at a time for check ups and look forward to future reconstruction which he now wishes for.  My thoughts are with you and know that this is very rare and unkown to most.  Our focus is in careful check ups with dermatologists, plastics and ongologists, as well as, biopsies.  We will wait another year (2 years free now) before moving forward. This was very overwhelming but this group has been very helpful for me.  Our surgeons have also been very helpful (even though decisions come quick).  Eventhough our son is young, children do ask.  We keep teachers and school friends aware and they are supportive. Agreed, get it checked out (it took us 9 months before we had a diagnosis).  Thanks for sharing, ryan and family.

 

natmcg
Posts: 119
Joined: Jun 2012

Hi Ryan,

Its wonderful to hear that your son is doing so well. . AB7 didnt write hear again. He found a  face book group and got his support through them. I am dsfp clear for almost 2yrs now and feel quite sure I am over the worst. 

Best wishes and happy new year to you andyour family

 

Nat. Mcg.

 

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