FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

Rare diagnosis of fibrosarcoma ex DFSP has anyone heard of this?Newly diagnosed with further pathology testing currently being done. Has anyone else heard of this fibrosarcoma ex DFSP.

@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?

@susangourdlady

Hi, I am in a similar situation where the notion of 7 weeks of daily radiation feels like it might be worse than the actual curative effect. I have a chronic condition called ME/CFS and the last time I exerted myself that much, I was left bedbound for 5 years.

When you spoke to your hematologist/onc., how aware were they of your situation, and was it you or them who brought up gleevec?

@citizendeveloper how is your treatment going?

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 hello, i'm really happy for you
. My doctor thought it was sebaceous cyst on the back of the scalp i got it removed later in the biopsy i found out that it FS-DFSP, before going into wide excision removal i had my MRI and CT scan done which was clear. Got the surgery done 15 days back and now recovering well with wide clear margin and the smallish deep margins 0.3Cm.

Now one of the radiation oncologist suggests that i should go for surgery which im not keen on, but my surgeon is quite confident that he has removed everything even the extra layer under the deep margins. .

Would you recommend radiation? Or anyone?

Hello everyone,
My doctor thought it was sebaceous cyst on the back of the scalp i got it removed and later in the biopsy i found out that its FS-DFSP, before going into wide excision removal i had my MRI and CT scan done which was clear. Got the surgery done 15 days back and now recovering well with wide clear margin and the smallish deep margins 0.3Cm.

Now one of the radiation oncologist suggests that i should go for surgery which im not keen on, but my surgeon is quite confident that he has removed everything even the extra layer under the deep margins. .

Would you recommend radiation? Or anyone?

@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.

@biceto

Thank you for your response.

I'm taking few other opinions regarding the radiation, most of them suggested that its a precautionary, not that its needed.

Im more inclined towards surveillance, as i dont want to get the radiation done and bear the side effects of something which is not there.

Wish me luck. Hope all gets better but seeing your case which is similar to mine gives me hope that I should be fine.

My deep margins are 3MM with the doctor removed the periosteum layer, also that layer came negative. So it give me confidence

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