adenoid cystic carcinoma

[SILLY]

I was diagnosed with ACC in February ,2010.The tumour was in my nasal cavity,lacrimal duct and lacrimal sac.It was stage 3 cancer .I had surgery in April and imrt in June and July. An MRI in December showed no sign of cancer. There are surgery and radiation side effects. This cancer is rare and to have it where I did is even more rare.I know not many Australians have it but still there may be one using this site. I would be glad to talk here to anyone with this cancer.

[SILLY]

Still hoping the few Aussies who have ACC have found this site.

[Sailor]

Hi SILLY It is a rare cancer, so probably there are unlikely to be others on this site. Maybe there are and they haven't logged in recently. But there is a worthwhile group you could get in touch with. It is the Centre for the analysis of Rare cancers. Their website is https://www.cart-wheel.org/. Not only might they be able to put you in touch with someone else with this cancer, but you will have the opportunity to help someone else in the future who will present with this. Cheers Sailor I must go down to the sea again
 For the call of the running tide
 It's a wild call and a clear call that may not be denied. John Masefield

[SILLY]

Thanks,Sailor. Found it and registered.

[SILLY]

Dear Sailor, Discovered Cart-wheel is for research. I don't know till I next see my oncologist and my ENT if I'll be able to get the info required by CW .

[Terrafirma]

Hi SILLY, Here's a site worth exploring if you haven't come across it before: Adenoid Cystic Carcinoma Organization International at http://www.accoi.org and their Yahoo group at http://health.groups.yahoo.com/group/Adenoid_Cystic_Carcinoma_Organization/ Cheers, Ed.

[SILLY]

Thanks Ed .I have found ACCOI through Facebook. There is also the Rare Cancer Alliance and Team Inspire Health and Wellness , all of which I use. I was hoping to find someone close where I live . Thanks again for your input.

[Gabe]

I think you might find this site useful. I am also a member of this forum and go under the same name. Cheers Gabriele http://oralcancerfoundation.org/facts/rare/ac/index.htm http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=133089&Searchpage=1&Main=11951&Words=adenoid&Search=true#Post133089

[debstar]

Hi Silly, just did some research into your particular type of cancer, its so close to what my Terry has, but also so very different, the same region of the face but different glands, he has Small cell undifferentiated carcinoma, its hard for us to find any one with this type of cancer as well as it is also a rare and very very aggressive type of cancer, maybe we are the only ones on the coast with " adenoid cystic carcinoma" and "Small cell undifferentiated carcinoma" its usually an older persons disease, the median age being 56 in our case, what the heck happened, we are 15 years ahead of schedule,, any way, its comforting to know that some one else has an understanding of the type of issues we are dealing with, We are off to Brisbane today for the "Planning Session"so fingers crossed.. hope you have a good day, its sunny and warm out so hope you have a chance to enjoy it, take care, regards Deb and T

[SILLY]

Doesn't oral cancer mean only mouth and throat? Mine was in nose and eye.Thaks for the info though.