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Tue, Jun 11 8:55pm · Diagnosed with sarcoma? Let's share in Cancer

Hello @raeangel319. FS variant here to. If it is Mayo Minnesota you are looking at, Dr Randall Roenigk is a bit of a legend among dfsp’ers. Not sure how many fs subtype he has treated, but he has performed successful Mohs on patients others have refused. For FS variant, the follow up is equally as important as the surgery itself. The FS variant has a very real increase in the risk of mets. Lifelong follow up and regular scans should comprise part of the approach to post operative care. Wish you well and keep posting about your progress.

Mar 27, 2018 · Diagnosed with sarcoma? Let's share in Cancer

He is having surgery today UK time. Axilla back chest shoulder. More than 6 sites of concern. Late stages as several previous unsuccessful surgeries and new areas of concern arisen this time.

Mar 27, 2018 · Diagnosed with sarcoma? Let's share in Cancer

Wondering if you are aware of any treatment or research programs Mayo maybe Involved in for this rare form of cancer, Sarcomatoid Carcinoma. Or for that matter, any success patients may have had with treatment, and which of your staff maybe involved! Not for myself but for a contact in the UK.
Thank you.

Jul 11, 2017 · Diagnosed with sarcoma? Let's share in Cancer

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.

Jul 11, 2017 · Diagnosed with sarcoma? Let's share in Cancer

Hello skyrage, and good to hear the unicorn reference! From one unicorn to another, hope your doing well and remain free of dfsp forever more. What region are you from?

Jul 11, 2017 · Diagnosed with sarcoma? Let's share in Cancer

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.

Jul 9, 2017 · Diagnosed with sarcoma? Let's share in Cancer

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?