Dermatofibrosarcoma protuberans (DFSP)

Apah-2018

terminator said:

DFSP
Dear sen0760,
I am happy to hear everything went well. Good luck in you recovery.
I am 38 yrs old & have had a reoccurence of DFSP. I first discovered a small pea size growth on the vulvar area 17 years ago. I asked my OBGYN about it & he said if it doesn't bother you don't worry about it. 10 yrs later I got pregnant with my first child & lucky for me I had to change doctors. Thank God! My new doctor immediately asked me about it & said as soon as I give birth he wanted me to have it biopsied. Due to the pregnancy the pea size growth became a plum size growth. My OBGYN took a small sample after I gave birth & it first came back as Dermatofibroma. He sent me to an Oncologist to make sure he was not missing anything. My oncologist scheduled me for an excision & the biopsy showed Dermatofibrosarcoma. 3 more surgeries to get clean margins & a skin graft later that year I was cancer free. It was 5 years & I found another growth in the same area late last year with the preganacy of my 3rd child. I had a wide excision on June 4th of this year & margins were not clean. I then had MOH's surgery July 29th of this year with a skin flap the next day. The doctors were able to get it all out. I am still healing with an open wound in a very uncomfortable area but happy to be cancer free.
To anyone questioning follow-up DFSP has a high re-occurrence rate so please go for your follow ups. Finding it early means any easier removal for you. I wish all of you the best.

Hi terminator, I am so happy

Hi terminator, I am so happy i came across your post, given how rare DFSP is and especially in the vulva area... i have my second operation scheduled in two days, was diagnosed about 10 days ago. Similar story, had the “cyst” for about 17 years, currently 38 years old. everyone was telling me it’s a cyst and not to worry about it, after the birth of my second child it started bothering me more and more and finally scheduled an operation for jan 31st. I thought I was done with it, till the histological Report came back with dfsp. I am just wondering how you are doing and if you had any reoccurences since the one you describe back in 2009. Hope you are doing well and hope to hear from you.

all the best 

Apah

Neelanjana

Mohs for DFSP

Hi All,

My 12 year old daughter has been diagnosed with DFSP. She has been advised surgery and from what we have come to know Mohs micrographic surgery is the best option to reduce the risk of recurrence. We stay in Singapore. Can someone please give me some information on whether Mohs for DFSP isperformed anywhere in either Singapore or India. If not, does Australia have this facility? We are not covered by insurance so it would be really helpful if you can also share some information on the costs involved in this kind of surgery and the procedures

aaronw1970

Neelanjana said:

Mohs for DFSP

Hi All,

My 12 year old daughter has been diagnosed with DFSP. She has been advised surgery and from what we have come to know Mohs micrographic surgery is the best option to reduce the risk of recurrence. We stay in Singapore. Can someone please give me some information on whether Mohs for DFSP isperformed anywhere in either Singapore or India. If not, does Australia have this facility? We are not covered by insurance so it would be really helpful if you can also share some information on the costs involved in this kind of surgery and the procedures

I had mine treated by Dr.

I had mine treated by Dr. Avedian at Stanford Medical near San Francisco, CA. He has treated a number of people with it. In my case, he chose a wide excision instead of Mohs in part due to the two previous surgeries I had on that spot. Unfortunately, my guess would be that it would be quite expensive. I wish you the best of luck for your daughter.

aaronw1970

3 month follow-up negative

I had my three-month follow-up and everything came back negative. They're setting the next one for next year and if that comes back clean there won't be any more. My doctor said the margins were very wide in my case.

SLE45

Diagnosed Today 4.4.18

aaronw1970 thank you for your post. I was diagnosed today with DFSP.  I live in the SF Bay Area, have been going to the same Dermatologist in SF for 15+ years.  My Derma is calling UCSF to schedule next steps.  In your opinion, should I consider a second opinion from Dr. Avedian at Stanford?  

natmcg

Neelanjana said:

Mohs for DFSP

Hi All,

My 12 year old daughter has been diagnosed with DFSP. She has been advised surgery and from what we have come to know Mohs micrographic surgery is the best option to reduce the risk of recurrence. We stay in Singapore. Can someone please give me some information on whether Mohs for DFSP isperformed anywhere in either Singapore or India. If not, does Australia have this facility? We are not covered by insurance so it would be really helpful if you can also share some information on the costs involved in this kind of surgery and the procedures

Mohs

Hi,

Sorry to hear that this has happened to your daughter. 

I live in Australia and to answer you question, yes mohs surgery is done here. I had my dfsp removed with Mohs in 2012 in sydSyd cancer hospital by Dr D Stanford who I would highly recommend. I to did not have private health cover and back then it cost me around $5000.(aus) for the 1 day I did not have to stay overnight.

There is also a thread here called DFSP friends which has lots of posts from people if you would like to had a read.

Best wishes 

Regards Natalie.

HelaciousT77

Dermatofibrosarcoma protuberans (DFSP) - no biggie!

Hi all. Just wanted to put this out there for anyone who is going through a recent diagnosis of DFSP or who has lived post-surgery.... I am 41 years of age and was diagnosed with DFSP when I was 13, no recurrences. At the time, it was more of a rare cancer than it is now and I was quite the celebrity patient - lots of doctors were interested and a medical journal took photos... Somewhere in the wide world of medical journals, there will be a picture of my arm with Mr. Tumor and after massive Mohs surgery aka big ol' arm defect. Not what I envisioned being a celebrity for, but ah well! At the time of my Mohs surgery, the tumor was quite large - appx. 1.5 " in diameter and 1/4" deep; thus, a fair amount of my left upper arm was removed. Skin graft occured and remained for 2 years so docs could check to see if there was a recurrence of which there was none. Afterwards, I had 2 semi-reconstructive surgeries done - did not fix the defect, but removed the skin graft and used a skin stretching technique to make the scar look different. I have had zero recurrences and have learned to love my shark bite arm as being what it is - it's a scar and a story. I struggled with my body image for a long time because of it but learned to love it just as it. Years ago, I sought out a plastic surgeon's consult regarding whether the defect could be repaired and not wanting to endure a lot more surgery, I opted to just be me, scar, defect and all. Every spring/summer when warm weather arrives and my arm becomes exposed via t-shirts, I get lots of stares and for a fleeting minute I'm uncomfortable. Then, I realize we are all curious creatures and sometimes, we can't help but notice a difference. I'm happy to have the difference because it's made me a lot stronger. Don't get me wrong, I'd love to have a normal arm, but there could be a lot worse things. Happy this board is around now because when I was a kid, there wasn't anything like this; I was the lone DFSP person. Please reach out if you need support. I'd be happy to lend you some encouragement and far away hugs.

~ Sincerely.

Diddie

Newly Diagnosed

Hi Everyone

I am newly diagnosed and just had WLE.  First of all, it is sad that the doctors misdiagnose this as just cysts.  I hear all the frustrations we all have had with this.  Secondly, I too have been treated like it is "no big deal".  It is a big deal and these are our bodies and our lives.  My story is very similar to all of yours. I had a bump near my neck for about 4 years.  Every year during my physical, I would tell my PCP do we need to do anything about this bump.  I was always met with "it is just a sebaceous cyst"  Finally, this year in September, I lied.  I said, When I hike it is uncomfortable because of my hiking backpack".  I was asked if I wanted a referral to a dermotologist or general surgeon. I said a general surgeon as I thought my insurance wouldn't cover this as it would be "cosmetic" . The surgeon spent 5 minutes with me, said it is just " a sebaceous cyst" I went to his surgical office 2 days later and he cut it out.  No needle biopsy or scan at all.    Like all of you, imagine my surprise when the medical assistant, not the doctor called to tell me it waa malignant, an "unsuspected sarcoma".  So on October 18 I had WLE on my neck. Supposedly I have clear margins.  Not sure why WLE was done instead of MOHs.  I am scheduled to go to an oncologist on November 26.  I am hoping they will request a scan to ensure they got it all out.  I was not thrilled with the care of the surgeon from the beginning to the end.  I felt he was very incompetent.  I am in Tucson, Arizona.  Not sure what my treatment plan will be.  I do know if it comes back on my neck, I am not sure how much more they can take out.  The location is near the base of the neck and this has been extremely painful since the surgery.  I am optimistic with the outcomes but want to treat this aggressively.  Not sure why WLE was chosen instead of MOHs.  I will be treated at the Arizona Oncology.  Currently, the lymph nodes nearby are swollen slightly and I know this very rarely spreads to the lymph nodes but the original tumor was right by a lymph node.  

All of your stories and experiences have been very valuable!  You are all heroes!

natmcg

Diddie said:

Newly Diagnosed

Hi Everyone

I am newly diagnosed and just had WLE.  First of all, it is sad that the doctors misdiagnose this as just cysts.  I hear all the frustrations we all have had with this.  Secondly, I too have been treated like it is "no big deal".  It is a big deal and these are our bodies and our lives.  My story is very similar to all of yours. I had a bump near my neck for about 4 years.  Every year during my physical, I would tell my PCP do we need to do anything about this bump.  I was always met with "it is just a sebaceous cyst"  Finally, this year in September, I lied.  I said, When I hike it is uncomfortable because of my hiking backpack".  I was asked if I wanted a referral to a dermotologist or general surgeon. I said a general surgeon as I thought my insurance wouldn't cover this as it would be "cosmetic" . The surgeon spent 5 minutes with me, said it is just " a sebaceous cyst" I went to his surgical office 2 days later and he cut it out.  No needle biopsy or scan at all.    Like all of you, imagine my surprise when the medical assistant, not the doctor called to tell me it waa malignant, an "unsuspected sarcoma".  So on October 18 I had WLE on my neck. Supposedly I have clear margins.  Not sure why WLE was done instead of MOHs.  I am scheduled to go to an oncologist on November 26.  I am hoping they will request a scan to ensure they got it all out.  I was not thrilled with the care of the surgeon from the beginning to the end.  I felt he was very incompetent.  I am in Tucson, Arizona.  Not sure what my treatment plan will be.  I do know if it comes back on my neck, I am not sure how much more they can take out.  The location is near the base of the neck and this has been extremely painful since the surgery.  I am optimistic with the outcomes but want to treat this aggressively.  Not sure why WLE was chosen instead of MOHs.  I will be treated at the Arizona Oncology.  Currently, the lymph nodes nearby are swollen slightly and I know this very rarely spreads to the lymph nodes but the original tumor was right by a lymph node.  

All of your stories and experiences have been very valuable!  You are all heroes!

Hello & good luck

Hi Diddie,

My name is Natalie I have posts here from yrs ago when I was in the very same position you found yourself in last October. From time to time I pop in to see if like you people have come here to find information and share their story.

  I hope you are recovering well and that you didn't encounted any further issues. I am very fortunate that I have passed the five yr mark and no reoccurrence on or around my scar or anywhere else. I am however disappointed to read again that dfsp is still being misdiagnosed and it seems it is still largely unknown to so many health professionals. 

I wish you all the best for the future.

Nat.

Micole86

https://csn.cancer.org/discussion/comment/1649088#Comment_1649088

Hi there, not sure if you ever check these chats still seeing as this cancer is still very very rare, I was just recently diagnosed with an even more extremely rare occurrence in March 2022, vulvar dermatofibrosarcoma protuberans on my right labia majora, I've had 2 excisions so far hoping for negative margins, I wasn't lucky enough to achieve these, uuugghhh, my last surgery pathology reported that there's now a satellite nodule that is adjacent but not attached to primary lesion. This is the scariest thing I've ever had to deal with, moreso with the after surgery scarring and disfigurement of my lady parts🍑 only a partial vulvectomy so far, who would've thought there even was such a thing??? The mental devastation is awful!! Just mostly wanted to tell you how brave I think you are for rocking your arm and telling your story!!!! And I needed to vent a little also lol

HelaciousT77

Hi there.

I want to honor that your frustrations, disappointment, grief, and anger about this happening to you are 100+++% valid. A tumor can be such a violation on the experience and functionality of our body. Our connection to our bodies is part of our connection to our self and when a part of us is injured or removed, we have a laser focus to that area, one we never wanted.

You sharing your story is part of your journey to healing... and, share as much as you need. When I was younger and covered up my scar/my story, I did so because of my embarrassment and because I feared the judgement of others. I had to learn to accept myself... gosh this took a while. And then, I had to stop caring about what others thought... I had to own my story. Your injury, your tumor, your scar(s), your changed body part is a story and an amazing one at that. There is no shame in what you are experiencing, but you have a right to hate it and wish it never happened. One day, you will be okay with it. Today, you don't have to.

I can only imagine what it must feel like - mentally, emotionally, physically... - to have your vulva injured and changed. How upsetting and painful!!! Do you have a good support system, people to talk to, cry and vent with, ....? Did they refer you to physical therapy? Gosh, how awful!!

Thinking of you and wishing you healing!!!