Rare Cancer Support Forum

I am wondering if there are any Australians with ACC who have not already said that they are from Australia.

Hi Silly - I'm an Aussie just diagnosed with Acinic Cell Carcinoma of the parotid. I'm in Brisbane QLD!

I just googled your type of cancer .There are similarities between Adenoid Cystic Carcinoma and your cancer. Both are salivary gland cancers,both rare but ACC a little rarer and both are a type of adenocarcinoma. Statistically acinic cell cancer has a better prognosis. ACC does not yet have chemo that has been found to work but there are people in the USA and perhaps other places undergoing experimental chemo treatment.That is usually on lung metasteses and with limited success so far.
How are you and how was treatment for you?

Hi Silly,

I'm an Aussie diagnosed with Adenoid Cystic Carcinoma, I live in the NT.

Gingy

Hello. There are not many Australians I know of with this cancer ,about 10 . I am happy to be your friend ,if you so wish . I only just saw your posts and replied to another one also. I am in Queensland .

I wondered if you knew about the Forgotten Cancers Project . You could take part inthe reaearch into less common cancers if you would like . It can be found on the net I think . It's being done by the Cancer Council of Victoria . If you cannot find it you can ring the Cancer Council in your state .

I'm glad your treatment seems to be going well . I am a couple of years past treatment . I was diagnosed in early February 2010 and had my surgery in the April . IMRT followed in June and July and there has been no sign of cancer since. My last MRI was in June this year ,my wish . Both my ENT and rad/onc. did not think it was needed .I also had a chest xray in January this year,unbeknown to both those doctors ,just to check . I had it arranged through my gp .

I hope you continue to do ok .

Hey Gingy

I was told by Silly that you were on here and that I should try to make contact with you. I was diagnosed with ACC back in October 2009 and live in Sydney. So far I have been able to find about 14 of us in Australia (lots of ours sweep the net and bugging other ACC patients to post things for me). It's not alot but when I started it took me 6mths just to find one person, so I am pretty happy with finding all I have now.

I was told you live up in NT. My brother just moved from there to Papua New Guinea. My sister inlaw has stayed behind because her youngest is finishing year 12 up there.

Anyway, I have probably bothered you enough for one evening. Don't want to scare you off talking to me this early LOL.

I would really love to be able to make contact with you if you interested in chatting!

Kindest Regards

Desy (Desiree Fraser)

It's feels good to make contact with other Australians as there are not so many of us .

Sunlehman wrote:Hi Silly - I'm an Aussie just diagnosed with Acinic Cell Carcinoma of the parotid. I'm in Brisbane QLD!

How are you going?

SILLY wrote:

Sunlehman wrote:Hi Silly - I'm an Aussie just diagnosed with Acinic Cell Carcinoma of the parotid. I'm in Brisbane QLD!

How are you going?

I am going ok ,thanks . How are you ?

Hi, bumping this thread... I've just been diagnosed and would love any doctor recommendations for Australia.

Lucy