Dermatofibrosarcoma protuberans (DFSP)
Comments
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FedeyksFedeyks said:DFSP
As well, does anyone have a list of questions to ask prior to seeking treatment?
I had DFSP surgery in December 2011 on my left shoulder area with a skin graft to reconstruct. My surgeon used the wide excision method (not MOHS) and the closest margin came back at 2.5cm. I'm still in the healing process with my skin graft, but am well on my way to full recovery. Mine was completed locally here in central Ohio, so I can't speak to the Mayo Clinic. I do know that there is a doctor from Mayo who posted a video on YouTube with lots of info about DFSP that helped me...
http://www.youtube.com/watch?v=FGMhW8IyrzY
Given that your tumor has been with you for 25 years, I would make sure your doctor send you for a CT scan. I was given one for my diagnosis (because I had my tumor for 5 years). Even though this cancer rarely spreads, it can, so it's important to know before surgery what treatments you truly need.
As I said in another post here, the most dramatic part of this process will most likely be the reconstruction. Once you and your doctor decide how to remove the cancer, and you have the surgery, it's gone... however, the reconstruction choice will be with you for the rest of your life! So lots or discussion needs to be had on that part of the process! With your cancer being on your back, it might be a lot more straight forward than it was for me (since shoulders move different than backs).
Hope things go well for you! Feel free to post any other questions as I still check in here from time to time to offer any support I can give to those going through this. God Bless!0 -
FedeyksFedeyks said:DFSP
As well, does anyone have a list of questions to ask prior to seeking treatment?
I should add that my doctors said MOHS wasn't absolutely the only way to effectively remove the cancer. MOHS is more important in areas where you want to keep as much original skin as possible (ie, face, scalp, etc.) Wide excision is effective too, but more a few more cm are usually lost during the surgery. Ultimately, each person and doctor will be different, just thought I'd throw my 2 cents in on that...0 -
I too was recently diagnosed with DFSPFedeyks said:DFSP Info Please
I was diagnosed with DFSP on January 13, 2012 .... Since then I have tried to find out information on this rare skin cancer. It is rare. I live in Edmonton, Alberta, Canada. I do have a Dermatologist that does MOHS surgery but there is trouble finding a surgeon to do the 'repair/skin graft' surgery. My tumor is 2.5cm x 2cm in size and has been on my mid-back close to the spin for 25 years. I have been ignored by doctors. This is my second cancer diagnosis (breast cancer in 2006) so I don't want to wait to deal with this. I have had a hard enough time with the breast cancer and am finished my five years of Tamoxifen on April 16 of this year, so would really like this cancer done sooner than later as well.
I have found the Mayo Clinic in Rochester, Minnesota to be specialized in this cancer and have contacted them, does anyone have any experience with them?
I have tried alternative treatment in the meantime as I have nothing to lose .... Castor Oil, Cannabis Oil and TCM Acunpuncture, which I can tell you has started to change the color and size of the tumor/area.
I understand it can reoccur and I have no control over that. It seems like the recovery is the hardest part.
I would love to hear from anyone (especially Canada).
Hello Fedeyks,
My name is Brenda and I was also recently diagnosed with DFSP too.
For the past 18 years I have had this mark on my shoulder and have been told by doctors that it was broken blood vessels caused by a softball injury. I had a biopsy done about 12 years ago and was told that it tested negative for cancer and once again it was probably broken blood vessels or varacose veins. The week before Christmas I went to see about having a cyst removed that had developed at the top of this mark, my doctor who has had experience with DFSP knew the mark on my shoulder was more then just broken blood vessels. He sent me to a Dermatologist who also knew something about this type of cancer, he took five biopsy's and all five came back positive for DFSP. I have been told that once it is removed I will be ok, it still scared the crap out of me. Mainly because of how long it went misdiagnosed. Two weeks ago I went through surgery, my doctor did a wide margin excision the size of a softball (I am sure there is some irony there). Because the DFSP had reached my muscle, he had to remove the top layer. The plastic surgeon who did my skin graft, did an excellent job. The graft was done immediately after surgery, he did sew a sponge on top of the graft which stayed in place for a week. Last week, he removed the sponge and the graft has taken 100%. My regular doctor has also informed me that the margins he took during surgery came back clean meaning all of the DFSP was removed. I am still a long way from full recovery and have been referred to an Oncologist for future followup. I am confident that my future is just as bright as it was before the DFSP. I am just glad I was finally diagnosed correctly. There is a youtube video I found that was made by a doctor at the Mayo Clinic, it really helped me understand this type of cancer as well as calm some of my fears.http://www.youtube.com/watch?v=FGMhW8IyrzY
I wish you all the success in the world and may you too have a very bright future a head of you.0 -
UGGH DFSBFedeyks said:DFSP Info Please
I was diagnosed with DFSP on January 13, 2012 .... Since then I have tried to find out information on this rare skin cancer. It is rare. I live in Edmonton, Alberta, Canada. I do have a Dermatologist that does MOHS surgery but there is trouble finding a surgeon to do the 'repair/skin graft' surgery. My tumor is 2.5cm x 2cm in size and has been on my mid-back close to the spin for 25 years. I have been ignored by doctors. This is my second cancer diagnosis (breast cancer in 2006) so I don't want to wait to deal with this. I have had a hard enough time with the breast cancer and am finished my five years of Tamoxifen on April 16 of this year, so would really like this cancer done sooner than later as well.
I have found the Mayo Clinic in Rochester, Minnesota to be specialized in this cancer and have contacted them, does anyone have any experience with them?
I have tried alternative treatment in the meantime as I have nothing to lose .... Castor Oil, Cannabis Oil and TCM Acunpuncture, which I can tell you has started to change the color and size of the tumor/area.
I understand it can reoccur and I have no control over that. It seems like the recovery is the hardest part.
I would love to hear from anyone (especially Canada).
My story is probably the same as so many of you. I noticed a small lump on my trunk, about 13 months ago. Since I had breast cancer 5 years ago, I went to my breast surgeon and oncologist, and both said multiple times that I was being over anxious. Over the course of the year, I went to my dermatologist twice, who also said it was nothing. Finally I convinved a surgeon to remove it, as it had grown to the size of a pea.
Fast forward...a diagnosis of DFSB on the first lump. I had a Moh's with good 3cm margins. The night before the surgery I found a small second lump, and I am waiting on the biopsy results for that.....
It's nice to hear other experiences, because I have been so mad that I told 5 doctors, after already having had cancer, and they ignored me.0 -
Dermatofibrosarcoma protuberans (DFSP)zing77s said:Fedeyks
I should add that my doctors said MOHS wasn't absolutely the only way to effectively remove the cancer. MOHS is more important in areas where you want to keep as much original skin as possible (ie, face, scalp, etc.) Wide excision is effective too, but more a few more cm are usually lost during the surgery. Ultimately, each person and doctor will be different, just thought I'd throw my 2 cents in on that...
I have detected small cyst on scalp on Nov 2011. I have shown to a doctor and as per him its due to Oil gland Blockage.
After that I have taken Homeopathic medicines for two months but no results shown
It has grown to a size nearly 2X3 cm by Feb 2012.
I have got it operated on 2nd March 2012
Biopsy reports of tumour shows Spindle Cell tumour with intermediate morpholic features but recommends IHC 6 Markers test for further analysis.
IHC 6 marker reports opinion is Dermatofibrosarcoma Protuberans (DFSP)
I have consulted Sr. Oncologists and all of them advised for MRI Brain Contrast and wide-area excision.
I have got the MRI, wide area excision followed by plastic surgery done on 16th March 2012.
Thanks for this blog, it gives me confidence of recovery. If anyone need more details can contact me @ manish.abz11@gmail.com0 -
Follow Upzing77s said:ryan and fam
My prayers for you and you little one for the journey that lies ahead.
I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.
to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.
i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.
so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."
When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...
feel free to post any other questions and I'll be happy to offer my thoughts...
God Bless!
Zing77s, your advise and experience has been very helpful with reconstruction. Our Son was diagnosed in December, and with 3 surgeries including a split skin graft to cover a 5cm margin, is healing very well. We will take our time with 3 month follow ups and will consider additional reconstruction down the road. Your comments were greatly appreciated and we were prepared to ask the right questions. Best, Ryan and family.0 -
zing77s said:
ryan and fam
My prayers for you and you little one for the journey that lies ahead.
I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.
to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.
i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.
so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."
When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...
feel free to post any other questions and I'll be happy to offer my thoughts...
God Bless!
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-zing77s said:ryan and fam
My prayers for you and you little one for the journey that lies ahead.
I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.
to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.
i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.
so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."
When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...
feel free to post any other questions and I'll be happy to offer my thoughts...
God Bless!
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.zing77s said:ryan and fam
My prayers for you and you little one for the journey that lies ahead.
I had my first surgery on December27--the margins came back clear. (about 3cm in most of it--2cm in some areas) my skin graft was done 2 days later. my doc put a wound vac over the area (which i still have on) to assist in healing.
to answer your question, if i could go back to the pre-surgery time period of asking questions, i would have asked much more questions about the reconstruction plans and expectations. the cancer removal was pretty straightforward--it's the recovery that seems to be the complex part.
i will say that my surgeon didnt recommend mohs for me because of the location on my upper chest. he said if my tumor was on my head or hands--he would have recommended it. Just food for thought--but I understand them not wanting to do mohs on a toddler.
so far for me, the recovery has been the biggest struggle (my doc isn't sure how much of the graft will "take"-so more surgery is a potential). so my biggest recommendation would be this--be patient with the process and accept that the answers during recovery won't always come as quickly as you would like. I'm sure that's not what you want to hear for your little one-but expect to hear your surgeon say "you need to wait and see how well the body heals--we'll look again next week and determine next steps."
When I first had the diagnosis, I spent most of my time researching the cancer. it was fruitful to know what i was dealing with. But once the cancer is removed, it's gone (unless if comes back-of course). However, for the rest of my life, I will have a graft. So I should have spent more time researching reconstruction...
feel free to post any other questions and I'll be happy to offer my thoughts...
God Bless!
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New to networkmanish.abz said:Dermatofibrosarcoma protuberans (DFSP)
I have detected small cyst on scalp on Nov 2011. I have shown to a doctor and as per him its due to Oil gland Blockage.
After that I have taken Homeopathic medicines for two months but no results shown
It has grown to a size nearly 2X3 cm by Feb 2012.
I have got it operated on 2nd March 2012
Biopsy reports of tumour shows Spindle Cell tumour with intermediate morpholic features but recommends IHC 6 Markers test for further analysis.
IHC 6 marker reports opinion is Dermatofibrosarcoma Protuberans (DFSP)
I have consulted Sr. Oncologists and all of them advised for MRI Brain Contrast and wide-area excision.
I have got the MRI, wide area excision followed by plastic surgery done on 16th March 2012.
Thanks for this blog, it gives me confidence of recovery. If anyone need more details can contact me @ manish.abz11@gmail.com
I was diagnosed with DFSP on January 13th 2012, it started with three small bumps on my forehead. Went to a dermatologist here in northern wisconsin and they biopsied them. Test came back positive for DFSP so the next step they sent me to UW Madison under the care of DR. Steven Snow this man work under the founder of MOHS surgery DR. Fredrick Mohs for people who do not know what MOHS stands for. Anyway they did a wide area excision on my for head about 5.6" wide by 7" long. The wound starts about 1/2 inch above my brow line and goes to the middle of my head. All tissue and muscle was removed to skull and after 8 surgerys all margins were finally clear. Two weeks later I was sent to a plastic surgeon who installed a graft on my skull with a graft jacket to get live tissue growing again so they can place the final skin graft on top of it. The first layer was a donor skin. After the graft they installed a wound vac which helped tremendously over the next couple of weeks. I am looking at having my final graft before may 1 2012 and hopefully on the road back to normal. Great site and good luck to all!!!!0 -
hi im just recovering frommanish.abz said:Dermatofibrosarcoma protuberans (DFSP)
I have detected small cyst on scalp on Nov 2011. I have shown to a doctor and as per him its due to Oil gland Blockage.
After that I have taken Homeopathic medicines for two months but no results shown
It has grown to a size nearly 2X3 cm by Feb 2012.
I have got it operated on 2nd March 2012
Biopsy reports of tumour shows Spindle Cell tumour with intermediate morpholic features but recommends IHC 6 Markers test for further analysis.
IHC 6 marker reports opinion is Dermatofibrosarcoma Protuberans (DFSP)
I have consulted Sr. Oncologists and all of them advised for MRI Brain Contrast and wide-area excision.
I have got the MRI, wide area excision followed by plastic surgery done on 16th March 2012.
Thanks for this blog, it gives me confidence of recovery. If anyone need more details can contact me @ manish.abz11@gmail.com
hi im just recovering from my op to remove my tumor which was on my scalp,it took place 21st march 2012.how are you recovering ? dont know anybody whos had this sort of thing !i had plastic surgery to,donor area was from my leg ! god it was painfull !!!!! so now im waiting for my results,have you had yours ?0 -
I recived my final skin graft the last week of april, they took the graft from my right leg. The doctors are very pleased with the way it looks but to me the wound is still pretty big. I know exactly what your going through and I feel for you because of the location of the cancer. Having a tumor like i and yourself removed from the forehead is horrible trying to conceal it as best as possible when you need to go out in public. Looks like we drew the short staws and I hope and pray your road to recovery is quick.Mikey77 said:New to network
I was diagnosed with DFSP on January 13th 2012, it started with three small bumps on my forehead. Went to a dermatologist here in northern wisconsin and they biopsied them. Test came back positive for DFSP so the next step they sent me to UW Madison under the care of DR. Steven Snow this man work under the founder of MOHS surgery DR. Fredrick Mohs for people who do not know what MOHS stands for. Anyway they did a wide area excision on my for head about 5.6" wide by 7" long. The wound starts about 1/2 inch above my brow line and goes to the middle of my head. All tissue and muscle was removed to skull and after 8 surgerys all margins were finally clear. Two weeks later I was sent to a plastic surgeon who installed a graft on my skull with a graft jacket to get live tissue growing again so they can place the final skin graft on top of it. The first layer was a donor skin. After the graft they installed a wound vac which helped tremendously over the next couple of weeks. I am looking at having my final graft before may 1 2012 and hopefully on the road back to normal. Great site and good luck to all!!!!0 -
DFSP Diagnosis in Australiazing77s said:Fedeyks
I had DFSP surgery in December 2011 on my left shoulder area with a skin graft to reconstruct. My surgeon used the wide excision method (not MOHS) and the closest margin came back at 2.5cm. I'm still in the healing process with my skin graft, but am well on my way to full recovery. Mine was completed locally here in central Ohio, so I can't speak to the Mayo Clinic. I do know that there is a doctor from Mayo who posted a video on YouTube with lots of info about DFSP that helped me...http://www.youtube.com/watch?v=FGMhW8IyrzY
Given that your tumor has been with you for 25 years, I would make sure your doctor send you for a CT scan. I was given one for my diagnosis (because I had my tumor for 5 years). Even though this cancer rarely spreads, it can, so it's important to know before surgery what treatments you truly need.
As I said in another post here, the most dramatic part of this process will most likely be the reconstruction. Once you and your doctor decide how to remove the cancer, and you have the surgery, it's gone... however, the reconstruction choice will be with you for the rest of your life! So lots or discussion needs to be had on that part of the process! With your cancer being on your back, it might be a lot more straight forward than it was for me (since shoulders move different than backs).
Hope things go well for you! Feel free to post any other questions as I still check in here from time to time to offer any support I can give to those going through this. God Bless!
Firstly i'd like to say sorry for hijacking an american board but haven't been able to find any other group on my side of the world and when i happened upon this group, i felt much relief ;o)
Zing77s - I am so thankful for your posts back in Feb as from the sounds of it your DFSP and surgery seems very similar to my own experience and what i am about to embark on. My surgery is scheduled for next Tues 29th May.
I was diagnosed with DFSP just 2 weeks ago after electing to have a small (15mm x 10mm) lesion removed from my upper R chest that had previously been biopsied and diagnosed as a benign dermatofibroma. As far as i can remember, i'd had for up to 2 years and am very glad that i opted to have it out anyway!
From that initial cosmetic surgery, i have a 7cm scar which of course did not get the whole tumor. I've been referred to a plastic surgeon who interestingly said MOH's surgery wasn't an option given this type of cancer, and has elected to remove it using a wide and deep excision (3-5cm around the entire wound) down to the muscle layer. Which begs me to ask those that have had similar surgery, do they remove the fascia layer as well?
They will also need to repair the "dent" with a split skin graft from my thigh. My own internet research has indicated MOH's surgery as the best or most widely used option so i am relieved to read of your experience Zing77s and am interested to know how you are going 3 months on since your last post? With your wounds and movement?
I'm not looking forward to the skin graft as i've heard it tends to be the most painful part and am concerned about the thinness of skin that will cover my wound, and restricted movement. My surgeon really didn't give me much info on that and certainly didn't mention a wound vac? My graft will be done at the same time as my surgery and i'll be home by late arvo of the very same day.
My hope is that they will get it all first (well, second really) time round (don't we all?) and i will likewise be trusting in my saviour through all of this. ;O)
Will let you know how i go ...0 -
My name is Kim and I'm so thankful to have found this group. Like you know, finding any really good info other than the medical definition is sort of hard to come by. I have had more of my questions answered here than anywhere else.bdahl71 said:I too was recently diagnosed with DFSP
Hello Fedeyks,
My name is Brenda and I was also recently diagnosed with DFSP too.
For the past 18 years I have had this mark on my shoulder and have been told by doctors that it was broken blood vessels caused by a softball injury. I had a biopsy done about 12 years ago and was told that it tested negative for cancer and once again it was probably broken blood vessels or varacose veins. The week before Christmas I went to see about having a cyst removed that had developed at the top of this mark, my doctor who has had experience with DFSP knew the mark on my shoulder was more then just broken blood vessels. He sent me to a Dermatologist who also knew something about this type of cancer, he took five biopsy's and all five came back positive for DFSP. I have been told that once it is removed I will be ok, it still scared the crap out of me. Mainly because of how long it went misdiagnosed. Two weeks ago I went through surgery, my doctor did a wide margin excision the size of a softball (I am sure there is some irony there). Because the DFSP had reached my muscle, he had to remove the top layer. The plastic surgeon who did my skin graft, did an excellent job. The graft was done immediately after surgery, he did sew a sponge on top of the graft which stayed in place for a week. Last week, he removed the sponge and the graft has taken 100%. My regular doctor has also informed me that the margins he took during surgery came back clean meaning all of the DFSP was removed. I am still a long way from full recovery and have been referred to an Oncologist for future followup. I am confident that my future is just as bright as it was before the DFSP. I am just glad I was finally diagnosed correctly. There is a youtube video I found that was made by a doctor at the Mayo Clinic, it really helped me understand this type of cancer as well as calm some of my fears.http://www.youtube.com/watch?v=FGMhW8IyrzY
I wish you all the success in the world and may you too have a very bright future a head of you.
I was diagnosed on May 1st of this year. First started with my regular doctor. Showed her this itching bump at my waistline about three inches from my spine. She biopsied and immediately referred me to a dermatologist. After he spent a good hour with me (calming my nerves) he told me he I had two options. I live in northern MN so he said either the Mayo Clinic or the University of Minnesota in Minneapolis because they were the best in dealing with DFSP.
This is for you, Fedeyks. He set me up with the head of dermatology at the U. The doctor's name is Dr. Peter Lee, and a doctor who has extensive knowlege of the Moh's precedure. In fact, my dermatologist said that if it were him, he would go to the U over Mayo Clinic.
bdahl71: I also found the youtube video from the Mayo. It helped me understand this disease but finding this small group has done wonders for me.
My surgery is set for June 7th. I'm nervouse because being 56 years old, makes me wonder how long the 'beast' has been growing.
Reading through all the posts have helped me stay positive. I know the recovery is most likely going to be the worst part. My problem now is waiting for the 7th to roll around so I can get on with this and know where I'm going as far as recovery.
Hugs to all of you!0 -
your not the only Aussiefrangipani8 said:DFSP Diagnosis in Australia
Firstly i'd like to say sorry for hijacking an american board but haven't been able to find any other group on my side of the world and when i happened upon this group, i felt much relief ;o)
Zing77s - I am so thankful for your posts back in Feb as from the sounds of it your DFSP and surgery seems very similar to my own experience and what i am about to embark on. My surgery is scheduled for next Tues 29th May.
I was diagnosed with DFSP just 2 weeks ago after electing to have a small (15mm x 10mm) lesion removed from my upper R chest that had previously been biopsied and diagnosed as a benign dermatofibroma. As far as i can remember, i'd had for up to 2 years and am very glad that i opted to have it out anyway!
From that initial cosmetic surgery, i have a 7cm scar which of course did not get the whole tumor. I've been referred to a plastic surgeon who interestingly said MOH's surgery wasn't an option given this type of cancer, and has elected to remove it using a wide and deep excision (3-5cm around the entire wound) down to the muscle layer. Which begs me to ask those that have had similar surgery, do they remove the fascia layer as well?
They will also need to repair the "dent" with a split skin graft from my thigh. My own internet research has indicated MOH's surgery as the best or most widely used option so i am relieved to read of your experience Zing77s and am interested to know how you are going 3 months on since your last post? With your wounds and movement?
I'm not looking forward to the skin graft as i've heard it tends to be the most painful part and am concerned about the thinness of skin that will cover my wound, and restricted movement. My surgeon really didn't give me much info on that and certainly didn't mention a wound vac? My graft will be done at the same time as my surgery and i'll be home by late arvo of the very same day.
My hope is that they will get it all first (well, second really) time round (don't we all?) and i will likewise be trusting in my saviour through all of this. ;O)
Will let you know how i go ...
Hi, I have also turned to this information and case history board. I haven't stopped reading and rereading everyones input since I found out I have DFSP last week.(29th June). Your right there doesnt seem to be anything helpful on the Aussie cancer sites. I'm having problems with my wound care(op was done day after results of biopsy) the area is irritated by any kind of adhesive tape even the type made for sensitive skin. Does any one have any suggestions on what I can do,as I will be having more surgery as clear margins have not been established and the issue of recovery is really worrying me. But some how I'l have to manage as so many already have.
I hope your doing ok since your op and have a good result.
Where did you have your surgery done? Im in NSW not far from Sydney.
All the best
Nat.0 -
sarahtim & mikey77sarahtim said:hi im just recovering from
hi im just recovering from my op to remove my tumor which was on my scalp,it took place 21st march 2012.how are you recovering ? dont know anybody whos had this sort of thing !i had plastic surgery to,donor area was from my leg ! god it was painfull !!!!! so now im waiting for my results,have you had yours ?
Hi I'm an Australian with DFSP, this site is the best and most informative one that I have come across since I found out I had DFSP 2wks ago I have already had one op.but will be seeing another Dr.about Mohs nxt week as margins are not clear. I'm very lucky to have wonderful support from my GP & Skin cancer clinic. I've been worried about the eventual size of my wound and scar,(under my breast.) But after reading your posts(& others on this site) I realize Im being silly. No one will see my scar. I am still concerned about the size my wound will reach as my tumor started over 10yrs ago, then was misdiagnosed as fatty nodule by ultrasound in 2004. Thankfuly things have moved along quite quickly in the last 2wks.
Wishing you all the best in your recovery.
Nat.0 -
I have DFSP and feel so alone,natmcg said:sarahtim & mikey77
Hi I'm an Australian with DFSP, this site is the best and most informative one that I have come across since I found out I had DFSP 2wks ago I have already had one op.but will be seeing another Dr.about Mohs nxt week as margins are not clear. I'm very lucky to have wonderful support from my GP & Skin cancer clinic. I've been worried about the eventual size of my wound and scar,(under my breast.) But after reading your posts(& others on this site) I realize Im being silly. No one will see my scar. I am still concerned about the size my wound will reach as my tumor started over 10yrs ago, then was misdiagnosed as fatty nodule by ultrasound in 2004. Thankfuly things have moved along quite quickly in the last 2wks.
Wishing you all the best in your recovery.
Nat.
Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.
Best wished to everyone.
From Australian with DFSP0 -
I have DFSP and feel so alone,natmcg said:sarahtim & mikey77
Hi I'm an Australian with DFSP, this site is the best and most informative one that I have come across since I found out I had DFSP 2wks ago I have already had one op.but will be seeing another Dr.about Mohs nxt week as margins are not clear. I'm very lucky to have wonderful support from my GP & Skin cancer clinic. I've been worried about the eventual size of my wound and scar,(under my breast.) But after reading your posts(& others on this site) I realize Im being silly. No one will see my scar. I am still concerned about the size my wound will reach as my tumor started over 10yrs ago, then was misdiagnosed as fatty nodule by ultrasound in 2004. Thankfuly things have moved along quite quickly in the last 2wks.
Wishing you all the best in your recovery.
Nat.
Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.
Best wished to everyone.
From Australian with DFSP0 -
I have DFSP and feel so alone,natmcg said:sarahtim & mikey77
Hi I'm an Australian with DFSP, this site is the best and most informative one that I have come across since I found out I had DFSP 2wks ago I have already had one op.but will be seeing another Dr.about Mohs nxt week as margins are not clear. I'm very lucky to have wonderful support from my GP & Skin cancer clinic. I've been worried about the eventual size of my wound and scar,(under my breast.) But after reading your posts(& others on this site) I realize Im being silly. No one will see my scar. I am still concerned about the size my wound will reach as my tumor started over 10yrs ago, then was misdiagnosed as fatty nodule by ultrasound in 2004. Thankfuly things have moved along quite quickly in the last 2wks.
Wishing you all the best in your recovery.
Nat.
Does anyone with DSFP still visit this discussion board?? Since finding out I have it I have posted a few times in different areas of this site and have been checking almost every night but no one has added anything for a long time. I feel so lonely, my husband and friends say not to worry but as my MOS surgery gets closer I do worry...I hope the reason no one writes here anymore is because you have all recovered from surgery and are getting on with your lives. Maybe once my surgery is done I won't feel that I need contact with other DFSP people either (not that I have managed to talk to any one with my type of cancer yet).
I know there are Facebook DFSP forums but I'm in my 50s and not familiar with facebook , Oh well 3 wks to go and then my worrying and wondering will be over. And I will be another cancer survivor.
Best wished to everyone.
From Australian with DFSP0
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