Hi Archie, which hospital would you need to attend? If you happen to be be A DVA white or gold card, you can apply for reimbursement of accommodation cost if you have to travel such a long distance. ... View more

Hi Archie,  sorry to read that you have ACC. I hope you are doing okay and your oncologist appointment goes well. I travel 4 hours on the train to get to my appointments too. I love it as I get to rest and watch a movie on my phone or read on the way 🙂 at the moment I only need to travel to see my specialist every 6 months and sometimes travel for a scan too. It has been over 8 years since I was diagnosed ... View more

Hi June, I'm sorry to here of your diagnosis, it is particularly scary when you have young children. But don't believe all you read on the internet there are many people who live a long happy life with ACC. I can recommend Ben Dixon, as he is my surgeon and I have been with him for nearly 7 years now. Ben Dixon has experience with ACC and I know of 3 others who had him as their surgeon for ACC when he was working at Peter Mac. When I started my journey my little girl was 11 months old and my boys were 2, 5 and 6.  BessyH   ... View more

No, this time it was to fix up the skin and bone necrosis  and constant infections in and around my eye socket due to the radiation treatment after my ACC surgery.  ... View more

Wow @MrsMc ACC in your leg, that is rarer than rare! i'm sorry to hear that it is back, that must be pretty stressful. Where are you having your surgery? I have just been in hospital for 2 weeks at Epworth Richmond and now on the mend at home. I hope your recovery is quick. good luck for Wednesday. ... View more

Thanks for the tag, We are all still here 🙂 and i have replyed to @mannagum hope to hear back soon. ... View more

Hi @mannagum, hope you are ok. I am around and I'm sure you will get replys from a few more of us. Have you been diognosed with ACC? It has been just over 5 years since my origional diognoses. Happy to chat if you would like. ... View more

Hi Mannagum, I'm still around 🙂 feel free to send me a message if you want. Have you been diognosed with ACC? ... View more

Hi victoria, i am also very sorry to hear this and i know exactly what you are going through. I had ACC in my right lacrimal gland which wasnt detected untill after it was removed. I was told it was ACC on november 23rd last year. The doctors wanted to remove my eye straight away but as it was so close to christmas a i was in shock i was able to put the surgery back to janurary. It was a good thing that it was removed. The ACC had spread into my eye and they were able to get a good margin. I am now driving, sewing and doing all the things i was doing before. Its a tough thing to go through and if you would like to talk about it im only too happy to help. Xx thinking of you ... View more

Thanks Silly, I called the hospital yesterday as I hadn't heard anything and they have told me I will have an appointment with the specialist and surgeon?? next Tuesday down in Melbourne. I live Semi Rural so have to travel 4hr by train or car to get to these appointments.I would love to hear about your experiences. I made an appointment yesterday to see my GP and get a referral to see a counsellor. I'm not handling this very well at all :'( ... View more