BRIGHTON 69 ,    Are you still here ?    ... View more

How are you  going now ?  ... View more

I didn't like placing my name here but I cannot work out how to contact you privately on this site .    ... View more

Lampworks54  You cannot find most of the groups for ACC through a search as they are secret simply for privacy . The Australian group is one such group I think. There are also groups for friends and family members but these are international . To join the private groups you need to do so through a member or the administrator of that group .  If you send me a friend request I can ask for you to be added to the group as I can verify that you have been diagnosed with this cancer .    Sylvia Farry    ... View more

I'm sending you an email . I'll begin writing it now .    ... View more

Sorry I was so long in replying to your post . I haven't been on this site as much as I used to be . How are you now ?    ... View more

To MM There are recommended doctors for you on the ACCOI  page on Facebook . You need to go there and you will find much information on ACC . It is a public group . There are other ACC  groups on Facebook , some only for those with this cancer and some for friends and family as well as for you. Some groups are private so only members see posts there .    ... View more

I can't work out how to send you both a private message as I used to be able to do here as things have changed since I last did so but if you can figure out how to send me one we can go from there .    ... View more

To Lampwork54 and Chrisuk   It is terrifying when you are diagnosed with this cancer and it was for me too but intetracting with others with the same cancer has greatly helped me . Stay on this site but if you wish to join ACC sites too contact me . The one you found on Facebook was not one known to me and thinking back I think that ACC  there stood for something altogether different , not even cancer . If you become my friend here I'll give you my email address .    Silly  @SILLY wrote: 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.   ... View more

Hi Lampworks    Firstly I'm sorry you have been diagnosed with this cancer . It must have been devastating in the beginning . It's a rare cancer and much of what you hear may paint a bleak picture of the future but the experience is different for each of us in some ways .    I was diagnosed with ACC in February, 2010  and at that time read everything I could by googling and it was scary . I wasn't positive about the future but I began to feel better after finding other online groups and meeting others later who had/ have the same cancer. My surgery was probably worse for me than my radiation but I found out that others were worse off . So far I've had no recurrence or metasteses and consider myself fairly healthy .    Don't become too frightened by what you read or hear about this cancer because there's no way of knowing how long you can survive it . I know of one lady, an American,  who has survived at least 47 years the last time I heard  from her . Others have survived many years too .    There is an Australian group for those with this cancer . They have   a Facebook page and they  meet up once a year for a weekend conference . This year's meet up is in late August in Sydney . It's been in Brisbane , Melbourne, Sydney or the Gold Coast in the past .  You asked about pain relief . I take Lyrica for nerve pain caused from my surgery . It has helped me but I never got it until 3 months after my surgery because my ENT  didn't believe I had nerve pain. Other than that he was great .    If you are interested in joining the Facebook group please let me know .  ... View more