Hello Helen and sorry to hear of the misunderstanding leading to delay in treatment, and sad to say not considering dfsp as a first response is surprisingly common among an uncommon tumour type. There are several variants of dfsp. Do you know which you have? For a larger tumour, has there been any discussion of preliminary course of Imatinib Mesylate (Gleevec) with a view to reduction in size pre surgery? Are you having MOHS surgery or Wide Excision? Have you planned any scans to attempt to establish the size of the main tumour, and or eliminate bone invasion?

I had a MRI and CT scan last week. The discussion was for Wide Excision due to the size of the tumour. Unfortunately the dermatologist I was referred to 3 1/2 yrs ago said it was a keloid, He retired 2 yrs later and with no other dermatologist in Thunder Bay, my family doctor continued the injections, but after a short period she stated it didn't look like a keloid but with no one to send me to she started the 1 1/2 yr search to find another dermatologist who would see me in Toronto. The referral system here takes forever and a yr later I finally seen him and he had the ball moving extremely swiftly. At this point I do not know what type, I was told a Pathologist would be involved once I'm in Toronto. My only visit there so far involved the Sarcoma Clinic at Princess Margret Hospital and then two surgeons from the Head and Neck Clinic at the General Hospital.

Good that scans have been done, but be aware that scans pick up the central tumor but often don't show the fine infiltration lesions that extend out from the central mass. They do give your surgeon a good grasp of the size of excision and what reconstruction is required. The reason I have asked about the variant, is that there is one more aggressive variant that generally requires a more aggressive approach to surgery. Typical Margins in WLE are 2-3cms, but for fs-dfsp the recommendation is closer to 5 cms. I would certainly ask for a copy of the path report once completed. I also suggest a direct discussion about the follow up required post surgery. The type of variant will influence follow up reviews process as well.

I know of at least two or three others with dfsp treated in Toronto as well as a few more across the lakes to the south. Happy to pursue contact if you wish. Can facilitate details by private message if you want someone local to discuss with. I also know a number of dfsp'ers treated at Mayo. Dr Randall Roenigk has a short video on dfsp. An experienced surgeon with plenty of experience in dfsp from your children to adults.

Helen, I have reached out to some friends in the area, and been told their treatment options included, Mt Sinai Sarcoma Unit, another suggested Dr Jay Wunder. Also been told the Woman's College has 2 MOHs surgeons.

For anyone looking for inspiration heading into or post surgery, watch the Ohio edition of American Ninja 2017. Participant Annika Nieshalla is a dfsp survivor who lost a large portion of the muscles in her upper arm to dfsp surgery, A gifted performer who also has her own web presence. Search Annika Nieshalla's dfsp sarcoma page to see some of her work around the gym and in Parkour centres.