Dermatofibrosarcoma protuberance (DFSP) Recurrence

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Comments

  • Ontario48
    Ontario48 Member Posts: 66 Member
    Coffey said:

    Here goes

    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

     

     

     

     

    HAPPY RETIREMENT JEFF!!

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

    Cheers, Joanne

  • Coffey
    Coffey Member Posts: 6
    natmcg said:

    Welcome Jeff & Hello again Joanne.

    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.
    Listening to my body

    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
    Coffey Member Posts: 6
    Onwards

    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

     

     

     

  • Ontario48
    Ontario48 Member Posts: 66 Member
    Coffey said:

    Onwards

    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

     

     

     

    Curling...

    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

  • natmcg
    natmcg Member Posts: 134 Member
    Coffey said:

    Onwards

    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

     

     

     

    Hi Jeff

    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.

  • AnthonyBrose7
    AnthonyBrose7 Member Posts: 3 Member
    dfsp sucks

    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
    natmcg Member Posts: 134 Member

    dfsp sucks

    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.

    dsfp sucks

    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
    ryan and family Member Posts: 15

    dfsp sucks

    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.

    thank you for sharing

    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
    natmcg Member Posts: 134 Member

    thank you for sharing

    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.

     

    nice to hear from you

    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.

     

  • Nattyc
    Nattyc Member Posts: 1
    Osterbar said:

    DFSP experience
    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.

    Dfsp x3 then tumor in pituitary gland

    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
    Ontario48 Member Posts: 66 Member
    Nattyc said:

    Dfsp x3 then tumor in pituitary gland

    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

    See a Soft Tissue Sarcoma Specialist

    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
    natmcg Member Posts: 134 Member
    Ontario48 said:

    See a Soft Tissue Sarcoma Specialist

    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

    Adding support to Nattyc.

    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.

  • Sdubb
    Sdubb Member Posts: 1
    edited May 2016 #34

    I was diagnosed with dsfp about a year and a half ago. I've had mohs surgery(twice because they didn't get clean margins the first time) and I've gone to and oncologist and a dermatologist and neither of them have ever worked with this type of cancer. They both on separate occasions just looked at the scar where my surgery was and said everything looks fine and they don't even touch it. How are Drs supposed to determine if it came back or Not. When it reoccurse is it noticable to the naked eye or do the have to do an mri or ct scan to truly determine if it came back or not? I know with mohs surgery it's unlikely it will come back, but I don't want to take any chances and it worries me that the Drs are not doing any sort of test on the area. I feel like my scar is acting very similar to  the scar that I had that turned into the cancer and it has me worried but both Drs said everything looks fine. I know this thread is super old, but it's really hard to find information about this that is not just facts about what it is. i can not find anything about how they follow up or reoccurrence So I'm really hoping someone on here can help me understand.

  • AK83
    AK83 Member Posts: 7 Member
    edited May 2017 #35

    Hi everyone. In need of a little bit of advice. Just had a DFSP recurrence (upper abdomen) after 12 years and wide excision, like the first time in 2005. Clear margins again, which is good, but this time I asked for an MR-screening too in order to make sure that they'd got it all (fx. that it hadn't spread to the lungs). But they actually refuse a screening, and just tell me that I am cured. This clashes with all the information you have shared about the high recurrence rate this form of cancer has. Some of you even had radiation therapy. I "only" had wide excision - twice now - and I was hoping that the doctors would agree on a MR-screening now that I had a recurrence but they simply tell me I am cured now and that they see no need to do a screening considering the clear margins. Am I being too worried here, and should I rely more on their expertise than I do? Or should I insist once more on a screening?? And if so; exactly which well-documented medical arguments can I use in order to get a screening?

  • natmcg
    natmcg Member Posts: 134 Member
    edited August 2017 #36
    Hi, just wondering how people

    Hi, just wondering how people are getting on

     

  • natmcg
    natmcg Member Posts: 134 Member
    For the new comers

    Hi just pushing all the DFSP threads to the top incase anyone needs extra info on our type of cancer,

     

    Best wishes to All

    Have a great week end.

  • Trobe
    Trobe Member Posts: 1
    Radiation?

    Hi all,

    I had a decently sized tumor removed from abdomen Sept 2017 which I later found out to was DFSP.  After the biopsy came back,  I immediately went to see an oncologist about it.  I was told that the margins appeared to be clear and there was nothing more that needed to be done besides getting another MRI in 6 months and perhaps yearly after that.  Forward to today (about 9 months later),  I had to find a new oncologist as my previous doctor shut down the practice.  I went over everything with the new oncologist and she said similar this that the first did (chemotherapy won't be needed) but she stated that she would like to talk it over with a radiologist and go over with them as she is not familiar with DFSP and then let me know their decision on radiation at my next visit.  I went in and did the MRI.  The day after, I got a call from her office stating that she had put in a request for me to schedule an appointment with a radiologist directly.  I requested a copy of the MRI but as I am not a medical professional, I have no idea what I'm looking at.   Should I be worried that she wants me to meet with a radiologist instead of sticking with the original statement of "talking it over with the radiologist and following up with me on our next appointment"?  Has anyone else had to do radiation for DFSP?