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Need your help, please. Stage 4 - Acinic Head/neck, parotid gland and lymph nodes acinic cell ca, metastacized and recurrent

Posts: 8
Joined: Feb 2012

I need help to find out where to go and who to see now. I have had three failed surgeries of parotid gland and radical neck lymph node dissections at three different hospitals and the wrong radiation with damage and severe lymphadema of neck. Acinic cell is extremely rare and I was told I cannot have any more radiation and there is no chemotherapy for treatment. Surgeons did not do proper location prior to surgery, I could feel ca. lymph nodes close to skin surface myself, but they missed during surgeries. Parotid gland was not complete excision and surgeons did not listen to me when I told them I felt great pain and hard lymph nodes, and did not excise. I had wrong type radiation with complications.
PLEASE give me any suggestions as to what and where to go. Also, had mastectomies for breast ca. THANK YOU for caring about helping me.

Irishgypsie's picture
Posts: 333
Joined: May 2010

Not sure darlin. sorry to here about everything you are going through! All I can say is try going to the best Regional Cancer center in your area; get 2nd and 3rd opinions!!



Posts: 8
Joined: Feb 2012

I live in Phila. area, where is best cancer cancer for acinic cell ca. of parotid and neck lymph nodes? I went to Jefferson, Sloan-Kettering and now at Johns Hopkins, with no admitted competency of three surgeries and radiations and now severe lymphadema and thick scarring. Please, I need any help.

patricke's picture
Posts: 497
Joined: Aug 2006

I am so sorry to hear about the horrendous experiences that you have had. I agree with Charles in regard to looking for the best regeional cancer center in your area for your next round of treatment. If you are in the NYC area, you might want to check out Mark Urken, M.D. at Beth Isreal Medical Center, you can get some information about him on-line. Where ever you choose to receive the treatment that you need, I wish the best outcome for you, and my posiive hopes and wishes are with you.


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