FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

@humbl3reh192 , my pathology from the surgery where diagnosis was first confirmed, indicated deep margin of 1.3mm. I was referred to a specialist Professor and had a further surgery at the major cancer facility in my state. My location was low back, so plenty of soft tissue to manipulate to cover the defect of a very wide excision. Very different to a scalp location. I did not have Radiotherapy or Glivec. I was frequent follow ups and scans for 5 years before being released from the Cancer hospital and on my own preference, continued privately with another Professor until the 10 year mark. All good so far!
If you have conflicting advice, it is difficult to know what to do. The question to ask is, do you feel comfortable with one path or the other. If not, perhaps talk to another professional with expertise. Ask your medical team for a referral for overview. Wish you will.

@cmiller1122, welcome. To help you connect with other members, I moved your post about dermatofibrosarcoma protuberans (DFSP) to this existing discussion:
- FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?https://connect.mayoclinic.org/discussion/fs-dfsp/

Here you can connect with @citizendeveloper @biceto @karlman @susangourdlady @lala1989 @sarab74 and others who have experience with DFSP.

@cmiller1122, have you completed the diagnostic pathology now? What is your treatment plan? How are you doing?

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.

You know it's funny I made the same comment when oncology first reached out to me. (Maybe i should go buy a lottery ticket). I had a 3cm tumor on my forehead that had finally grown big enough to decide that I should have this thing removed. Went in to a general surgeon to have it removed. He says we will send it to pathology "just in case". It came back as FS-DFSP. After two months of things seemingly moving at a snails pace I finally go in for some punch biopsies tomorrow and a ring MOHS procedure on 6-2-26. After the dermatologist creates the margins I am going back to have another surgery to remove the rest of the cancerous tissue. My question is, has anyone else had to go through two different procedures? Everything that i can find says that MOHS is the preferred treatment.

@biceto

Hi, may I know your distance of deep margin? Mine is 5mm and suggested to do radiation for better result. For myself I don't want to do as the main side effect is it would hurt my kidney. I want more opinion. Thanks

@littlecat

Hello little cat, i wish all the best for your recovery and taking these decisions is very hard sometimes. i was diagnosed with FS-DFSP on the sclap, my all margin were clear from 15MM upto 30MM. except for the deep margin it was clear 3MM. but my plastic surgeon took extra precautionary that he removed the extra layer before skull bone and that too came the negative, pluse my tumor didn't involved the muscle aswel.

i took 4 opinions of oncologist which 3 of them suggested not to do radiation and only one of them suggested as precautionary, for me i never wanted to take the radiation because my concern was i didnt wanted to expose my body to it , Second going for radiation when something is not even there. third the my surgeon did took the extra precaution and oncologist suggested not needed.

i would suggest go for your gut feeling. and keep doing MRI or Ct scan every 6 months.

Hi @humbl3reh192

Thank you for your sharing. You make me think more positive. May I know did you have 2nd surgery to get more deep clear margin? How long did you have your surgery and everything alright just keep monitor? I don't want to have radiation as well if there is nothing. I want to have more share who has close deep margin experience. Although I still feel depress but I think I need to change my mind and go back to normal life.

Hi @humbl3reh192

Thank you for your sharing. You make me think more positive. May I know did you have 2nd surgery to get more deep clear margin? How long did you have your surgery and everything alright just keep monitor? I don't want to have radiation as well if there is nothing. I want to have more share who has close deep margin experience. Although I still feel depress but I think I need to change my mind and go back to normal life.