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DFSP Reoccurence?

mblack
Posts: 5
Joined: Oct 2010

My mom was diagnosed with DFSP in July of '07. She had four surgeries that summer. One included a skin graft and muscle flap. She was followed every 3 months for two years with CT's of her chest (because of the possibility of mets to the lungs) and MRI's of her leg (Shin) where it originated. After the two year mark she was followed every six months. Then in January of '10 she found lumps on her incision of the last surgery. They had done wide margins in her surgery but I don't believe it was MOH's. She also found out she had a lump under her skin graft. So, she had her 5th surgery in March. Then she has Radiation on her leg this past summer. When they did her most recent CT that found that a spot on her lungs was growing, albeit slowly, it was growing. So, she met with a Thoracic Surgeon at the Washington Cancer Center (in D.C.) ,where her Oncologist is. They are planning to have Thoracic Surgery to remove a wedge from her Right lower lobe of her lung. The Thoracic surgeon believes it is her DFSP. NOW, to top it off on Friday night she felt a walnut sized lump in her groin area (lymph node area). So, her doctor wants to see her tomorrow. I am a wreck. I have been online looking this stuff up regularly. I just can't seem to get a whole lot of info on DFSP folks that had mets to lungs or lymph nodes. I'm worried, very worried.

Has anyone used the doctors at the Washington Cancer Center. I got their names from the Sarcoma Alliance and Sarcoma Foundation websites. We see Dr. Henshaw, who usually specializes in the Pediatrics but is working with my mom.

JC (not verified)

Hi,

Sorry I haven't replied sooner.

I am not sure I can answer your question. I think that others on this rare cancer site (via DFSP discussions) have provided links and names of physicians, so perhaps that can help.

The most difficult thing, I think, is not to know who to choose or what procedure to have given the fact that the disease is so rare.

If I get any info, I will load it here.

Take care.

JC

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