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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?

Posted by citizendeveloper @citizendeveloper, Jan 6, 2025

I was diagnosed with FS-DFSP. I've already had my MOHS surgery, and today I meet with my Oncologist to get the results of my CT scan. Is there anyone else who is currently fighting this rare cancer? Also, did you buy a lottery ticket? 😀

Laugh or cry, why not do both!

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cmiller1122 | @cmiller1122 | Mar 13 3:18pm

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.

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Colleen Young, Connect Director | @colleenyoung | Mar 26 7:40pm
In reply to @cmiller1122 "Rare diagnosis of fibrosarcoma ex DFSP has anyone heard of this?Newly diagnosed with further pathology testing..." + (show)
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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.

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@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?

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dfspfs | @dfspfs | 5 days ago
In reply to @susangourdlady "Thank you so much for this advice. I did have the extra gene work done and..." + (show)
Profile picture for susangourdlady @susangourdlady

Thank you so much for this advice. I did have the extra gene work done and it is the 17;22 translocation. I have spoken with my hematologist who is also an oncologist. It was very insightful. We did talk about gleevec. I think that will be my main option. I can't have extensive surgery because I have Factor V Leiden. Extensive radiation would be too debilitating for me as I do have to run this household and property. My husband just recently had cancer surgery and will start radiation in a few weeks. He is 77 and a bit frail, so I will wait until weeks after he finishes his radiation therapy before I start anything for me.

Again, Thank you for the information.

Susan

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@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?

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