“Coping with cancer diagnosis means getting factual information to me, being able to take charge of my treatments, understand what the future might bring. If this is your approach, ACCOI is THE prime resource.” -- Marina S.
"After my original ACC surgery in San Diego to remove the tumor that originated in my tear gland, I had made up my mind to have radical surgery to remove my eye socket and all of its contents as a way of preventing recurrence; that is until I talked to a proton radiation oncologist based on a reference by an 8-year old member and her family, also of Southern California, and an 18-year old member. As a result, and instead of radical surgery, I flew to Boston where Doctor Norbert Liebsch at Massachusetts General Hospital saved my eye, and, I like to believe, had a major role in saving my life.” -- Garrick J.
“My sister was diagnosed with ACCV [rare primary site of ACC] a little over two years ago. I found this group and remain a member so that I can find out more about this disease and stay on top of the latest research and information about the disease process. Should my sister develop metastases in the future I will have a wealth of information that will help her to make a decision about her condition and care of her disease.” -- Bev M.
“I have derived both informational and emotional support from a group of very compassionate and knowledgeable individuals.” -- Peter W.
“I have learned more about ACC from this group than from my doctors. It has helped me to make more informed choices about my treatment.” -- Julie R.
“When I was diagnosed with ACC in 1998 at age 27, I felt scared because I didn¹t know anything about it since it is just so rare. I couldn’t even find one available book on ACC! ACCOI has provided me away to interact, learn, and blossom as a cancer survivor. I have made friends, lost friends, but never lost my hope. This site and it’s members continue to provide me with knowledge, advice, support, and the latest treatment options!” -- Jen M.
“Since I found this group, this new support system has put a new focus on my disease and recovery process with ACC. For me, this e-group is a God-send. There is a wealth of information that is shared with people and caregivers of people with ACC.” -- Sharon K.
“I look upon this group as my only real support and advisor. None of my doctors have had much knowledge about this cancer. Through this fantastic supportive group I have learned a lot about ACC, and I feel much more prepared in case ACC decides to strike again. Thanks to all of you.” -- Aud V.
“Until I found this group, it felt like being lost in a foreign land and not speaking the language. With the support and information provided by ACCOI, I've had the confidence to persevere. It's as if we are all on the same team working to put this ball in the endzone.” -- Val S.
“I don't respond a lot...I mostly just take (probably unfair) advantage of all the help and love coming from the many dedicated members of this group, (especially the moderator) to keep myself going day to day and stay aware of the latest treatments and symptoms affecting we who suffer from this strange disease. And though I probably haven't said it before: Thank you all so much for being there.” -- Skip
“Not being alone...being able to reach out and touch someone that can identify!!!!!” -- Cyndi S.