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adenoid cystic carcinoma

Posts: 1
Joined: Feb 2003

I was just wondering if anyone had any advice about thistype of cancer. My father was diagnosed a month ago with it, had surgery to remove the tumor(6mm). They know have to do radiation to get the rest, but he's hestitant about radiation. Thanks for any help and good luck to everyone

Posts: 4
Joined: Feb 2003

I had this same type of cancer.I live in Ok. but went to UCLA Med Ctr to have my surgery. They removed my tongue and made a free flap. Also took lots of lymph nodes out for a precaution. I did have some radiation but did not finish the whole amount to be done. I just couldn't take it anymore. I don't swallow so was unable to rinse my throat etc. like others could. I would be glad to answer any questions you have and share more information if you would like. Here is my e mail address jbtwelvefan@aol.com

Posts: 2
Joined: Feb 2004

although your message is a year old I hope to find you well and still out there-I am trying to find out about osteoradionecrosis which I have developed since my neutron radiation in 1997-the cancer hasn't returned but this is a terrible result of radiation-I am now unable to eat or talk because of the multiple surgeries on my neck and jaw--any ideas?

Posts: 1
Joined: Feb 2004

Hi. My name is Rose. I was diagnoised with adenoid cystic carcinoma of the left salivary gland in Dec. 2003. I had a 5mm solid tumor removed and now I am on my fourth week of IMRT radiation therapy. It is getting a little rough. The horrible taste in your mouth and the sores but it is my only alternetive at this time.

Posts: 1
Joined: Mar 2004

hello, i just read your message this am , my brother has this cancer , he was diagnosed 1 year ago in feb, but was misdiagnosed for 2 years prior to that . this past sept , he had his 1st surgery , it went better than anyone had hoped . he had chemo and radiation 1st , then the surgery .well i can say that it was not easy at all , but was necessary , he made it threw .my advice to him and anyone else is to have a strong support and to way the options .god bless .

Posts: 6
Joined: Apr 2003

I had same kind of cancer and was told that chemo therapy did not work for this type of cancer.

Call SPORES Head and Neck support group. Ask them about Laser surgery story.

Call MD Anderson, see about Proton Radiation.

See if there is something to protect the teeth from radiation.

Ask questions...... Better to get the radiation from a major cancer center with coordinated specialist,

Get a feeding tube, PEG tube before starting.

Hope this helps, but my mouth is still dry and that has been 6 years ago.

Make sure the surgeon gets clean margins.

Good luck. God Bless.

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