FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

@humbl3reh192 wish you well and I understand the uncertainty of such times. Look after your mental health as well.

@cmiller1122 update: I finished my radiation which went well. Experience was mild redness and hair loss in the targeted area which was minimal and not noticeable with hair worn down. The radiation was low dose and targeted which leaves me the option of future use if reoccurance does happen. Following radiation I underwent 1st stage of surgery to remove cancer using technique wide excision radical resection. In previous communication I had mentioned MOHS techniques which I thought was the technique being considered and used. When speaking with my surgeon she stated since the cancer has the FS component and is aggressive it is best to go with the wide excision technique, also something to note I did not know is when this type of cancer is cut into it has a tendancy to seed and grow in the cut line, which in my opinion explains why wide excision a more aggressive approach was used. Following the surgery they covered open wound using a negative pressure dressing stitched in. First surgery completed on the 7/10/26 with cleared deep margins achieved at 0.1 cm removed tumor/diseased skin measuring 3 x 36 x 0.2 cm resulting in clear margins succesful clear margins. Also noted was after radiation their was no more detection of the FS, only DFSP from surgical pathology. I am doing well so far and just preparing for the second stage of the surgery which I'd the reconstruction fhase set for 7/28/26 which can be anywhere between 5 to 8 hours do due possible skin graft locations. I will keep this updated as thing progress. Also I am documenting my experience on my Facebook page so if interested you can find me under Charity Miller located her in florida. Please feel free to share any information on this cancer or any other cancer on my page. May God bless us all in this journey.

Good morning,
I had a tumor behind my right ear resulting in unplanned surgical removal as well by a general surgeon who diagnosed it as a cyst. During the surgery it was described to be the size of a key lime attach to my skull and to be not what they thought it was. They sent it of to pathology and 2 days later it came back as Fibrosarcoma-DFSP aggressive malignancy type. Needless to say reading this in my chart without any doctor reaching out to warn me or consult....I was beside myself and went through every emotion possible. I was sent to Florida Cancer Speacalist who quickly reacted by getting me in to Moffitt which I am so greatfull for the doctor realizing it would be in my best interest and treatment outcome to be treated by Moffitt. Moffitt has been great and they have experience with this type of sarcoma. They suggested targeted radiation which I have 3 treatments left before they will go in using MOHS technique to clear the margins, followed by healing and second surgery for closer of the surgical site by a plastic surgeon. The radiation was scary at first due to the location but honestly I have not had any bad side effects but maybe a little tiredness and of course hair loss on the radiation site. I work a full time job and only missed 1 day of work during the radiation treatment. Is the radiation they suggested to you, little cat targeted to the specific area? I would definitely look at all your options. I can say my FS-DFSP started as the classic version DFSP which is said to be benign however if gone untreated which mine was untreated for many years due to lack of knowledge, it can mutate and become malignant. I suggest talking indepth with doctors and acting as soon as possible. They usually suggest radiation to control size of tumor and possible shrink for more concise and manageable surgery with best possible outcome. Unfortunately our type of rare cancer is to often mis diagnosed resulting in unplanned surgery and no clear margins. This is not the best and oncologist are left cleaning up the mishaps of these unplanned surgerys. I am so sorry you are going through this and we are here for you little cat. I will send healing prayers 🙏 up for you. I also suggest taking advantage of talking with mental health staff to help guide you through this journey you and we are on. GOD bless you and may he guide you and the doctors involved in your care resulting in you regaining your health back. I have not bought a lottery ticket either lol but I have left it in God's hands and I am living one day at a time stress free thanks to God. Love you all and I will remain an advocate for people with cancer as well as continue to update my story.

@humbl3reh192

Thank you so much for your kind and encouraging words. They truly mean a lot to me. It can definitely be mentally and emotionally exhausting, so I really appreciate the reminder to take care of my mental health.

I'm also grateful to connect with someone who understands this journey. Since FS-DFSP is so rare, it helps to be able to talk with someone who has gone through a similar experience.

I'm glad to hear your second surgery achieved clear margins, and I sincerely hope your MRI next month brings reassuring news and shows that everything is healing well. I'll be keeping you in my thoughts and wishing you all the best. Please keep me updated on how it goes.

@anikadow I hope you a speedy recovery and you come out of it Stronger than before.
I know it takes a toll on you, just take care of your mental health. Good times coming ahead

I was also diagnosed with Fs-DFSP on back of sclap, after the doctor misdiagnosed it in the first surgery thinking its a cyst. however i went for the second surgery WLE, with clear margins of 3CM.

my only concern was that my deep margin was 0.3CM but doctor removed periosteum, and the layer of my neck muscle as a precaution. however i have my first MRI follow-up next month as doctor mentioned to monitor it every 3 months.

@humbl3reh192

Yes, I did. My main concern was balancing the risk of another recurrence with preserving the function of my leg, especially since any additional surgery in the same area could affect how well I walk and use it.
Since radiation isn't available on my island, my doctor consulted with an oncologist on a neighboring island that does offer it. After reviewing my case, that oncologist also recommended that I proceed with the additional surgery and felt that it should be the final course of treatment.

@anikadow

Hello Anikadow, did you consult with your oncologist regarding the radiation ?

Hello,

I've also been diagnosed with FS-DFSP. Thankfully, aside from the tumor growth itself, I haven't experienced any other symptoms to date.

I first noticed a hard mass on my inner thigh when I was around 11 or 12 years old, but it didn't begin growing until late 2022. Just before my 20th birthday, in June 2024, I underwent my first surgery; an excisional biopsy. Two encapsulated tumors were removed, with the largest measuring approximately 6 × 7 × 7 cm. The surgery achieved what was reported as "clear margins," with the excision extending down to the muscle fascia. Before surgery, the tumors protruded from my inner thigh and had become uncomfortable, even making it difficult to walk.

Unfortunately, I experienced a recurrence less than a year later. In December 2025, I underwent a wide local excision. This time, the surgeon removed the underlying muscle fascia as well, but the final margin was only 0.1 cm.

My oncologist has recommended additional surgery to reduce the risk of another recurrence. However, my island does not have the specialist or equipment needed to perform the recommended procedure. At the moment, I am seeking financial assistance from my local government so I can access treatment elsewhere, and I'm also hoping to connect with others through a support group who have had similar experiences.

Thank you for taking the time to read my story. I look forward to connecting with others who understand this journey.