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FS-DFSP (Fibrosarcomatous dermatofibrosarcoma): Anyone else?
Sarcoma | Last Active: Feb 11 12:25am | Replies (18)Comment receiving replies
Stay positive, seek out treatment and be comfortable with the Surgeon/Oncologist and their plans. Ask questions. Feel free to make contact if you need to chat.
Ask about Radiation Therapy, and Glivec/Gleevec and the role they may play in strategies.
Also ask if the Oncologist would consider FISH, or RT-PCR, analysis to establish the individual chromosomal mutations of your tumour. These may give insight into likely Chemotherapy or Immunotherapy options down the track.
These are expensive tests, so many Providers will not fund them for everyone. FS variant is more aggressive so more likely to be considered.
Reach out if you have questions, but include a Country and State/Province as services and options may differ between regions.
Replies to "Stay positive, seek out treatment and be comfortable with the Surgeon/Oncologist and their plans. Ask questions...."
@biceto Thank you SO much for your valuable feedback on treatment considerations. I’m located in South Florida/US and your guidance is really helpful as I prepare for oncology appointment. This may be a strange question but do you know how I would know if I have multiple tumors? My diagnosis was made after a single tumor removal. In exploring the ‘mass’ prior to diagnosis, I had CT & MRI scans of the area. Of course, I’m wondering if it’s a single tumor or just the one that was large enough to be visible? Would additional tumors show up on these types of scans or are there other scans/tests such as PET scans or blood test needed to better understand the scope. One last question, do you know if the tumors are typically in same general area or are they found in various parts of the body? Please forgive me as i’m a ‘first’ for my current physicians who can’t really answer a lot of my questions as I’m awaiting my oncology appointments, who I’m sure will have a better understanding & help guide me. The waiting is difficult & brings more & more questions. Again, thank you for taking the time to share your experience & suggestions. 🙏💕👍
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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