FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

@humbl3reh192

Thank you so much. From diagnosed to now I almost lost my weight with 5Kg, can't sleep and eat well. I think I need to learn from you. Think positive 💪

@littlecat
I wish you speedy recovery, did you got your surgery done already ?

@humbl3reh192

I did Wide excision surgery 2 weeks ago. As I mentioned all the Wide clear margins are good more than 18mm, but deep only 5mm. So it makes me anxious I' ve been cut very close to facial and near kidney. If do the radiation, it will hurt my kidney. So I don't want to

Hi @humbl3reh192

Today I went to see my Dr and discussed further. My Dr. concern that 5mm deep clear margin is not very well, and I've already been cutted near to deep fascia, if recur, it may deeper than original. If so, there is no space to deep cut. As radiation can prevent the recurrence, it better to do it. Recurrence always hard to handle than the first time. What do you think? But radiation fee is about US$25000 that I need to pay for.

I think the health comes first than anything. Also i would suggest take opinion of at least 2 more oncologist before taking a decision. If they all still recommend it then you should go for it. I hope you all the best and wish you speedy recovery, i know its alot already but remember that this is time will pass soon.

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.

@anikadow

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

@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.