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Does anyone have ACC Adenoid cystic carcinoma

Head & Neck Cancer | Last Active: Mar 15 11:59pm | Replies (7)
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@731

I was diagnosed with ACC with NOTCH1 mutation. A rare subset of an already rare cancer. I had partial glossectomy, removal of the floor of my mouth and radical bilateral neck dissection with removal of 17 lymph nodes. Prognosis was said to be poor. The results of the surgery with damage to nerves leaving me with constant nerve pain and not able to eat does seem worse than the cancer. Where I live the doctors are not experienced with ACC and I just feel lost.

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Replies to "I was diagnosed with ACC with NOTCH1 mutation. A rare subset of an already rare cancer...."
nancyfowler | @nancyfowler | Mar 12 1:11pm

Please go to MD Anderson in Houston. Try to see Dr Renata Ferraro, her specialty and research is in ACC. I went two weeks ago and got lab work, CT scan plus saw her in the same day, my first visit there. Also she called in two different research PhDs to start studying me. I also had a MRI. There is a hotel connected to the hospital and right at her office, lab, imaging center, just walk across skywalk. Hotel is the Rotary House, cost $146 a night. My ACC has moved to my lungs, stage 4. Bless you, thoughts and prayers are sent to you

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Colleen Young, Connect Director | @colleenyoung | Mar 15 3:14pm

@731, in addition to the helpful replies you've received from others, I'm tagging @kjwilson23 @kjwilson23 @badfish @mnmike @rubagaddal who may have additional experiences to share.

731, is a feeding tube an option for you to avoid the pain of eating?

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