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Anyone else with Dermatofibrosarcoma Protuberans on the neck

Posts: 2
Joined: Oct 2019

Hi Everyone

I am newly diagnosed and just had WLE.  First of all, it is sad that the doctors misdiagnose this as just cysts.  I hear all the frustrations we all have had with this.  Secondly, I too have been treated like it is "no big deal".  It is a big deal and these are our bodies and our lives.  My story is very similar to all of yours. I had a bump near my neck for about 4 years.  Every year during my physical, I would tell my PCP do we need to do anything about this bump.  I was always met with "it is just a sebaceous cyst"  Finally, this year in September, I lied.  I said, When I hike it is uncomfortable because of my hiking backpack".  I was asked if I wanted a referral to a dermotologist or general surgeon. I said a general surgeon as I thought my insurance wouldn't cover this as it would be "cosmetic" . The surgeon spent 5 minutes with me, said it is just " a sebaceous cyst" I went to his surgical office 2 days later and he cut it out.  No needle biopsy or scan at all.    Like all of you, imagine my surprise when the medical assistant, not the doctor called to tell me it waa malignant, an "unsuspected sarcoma".  So on October 18 I had WLE on my neck. Supposedly I have clear margins.  Not sure why WLE was done instead of MOHs.  I am scheduled to go to an oncologist on November 26.  I am hoping they will request a scan to ensure they got it all out.  I was not thrilled with the care of the surgeon from the beginning to the end.  I felt he was very incompetent.  I am in Tucson, Arizona.  Not sure what my treatment plan will be.  I do know if it comes back on my neck, I am not sure how much more they can take out.  The location is near the base of the neck and this has been extremely painful since the surgery.  I am optimistic with the outcomes but want to treat this aggressively.  Not sure why WLE was chosen instead of MOHs.  I will be treated at the Arizona Oncology.  Currently, the lymph nodes nearby are swollen slightly and I know this very rarely spreads to the lymph nodes but the original tumor was right by a lymph node.  

All of your stories and experiences have been very valuable!  You are all heroes!

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