Adenoid Cystic Carcinoma

[mannagum]

Hi to everyone. I've just joined this site and wanted to know if there was anyone with my type of cancer out there. All the posts I've read are at least 3 years old. I'm hoping to connect with someone

[Katekat]

Hi @mannagum and welcome to the Cancer Council Online Community!

Is there anyone out there who may have experienced or is experiencing the same cancer as mannagum, that may be able to connect with her?

Hi @SILLY, @Bessyh, @ducksnutts, @Neil, @VictoriaS - just wondering if perhaps one of you could assist if you're able 

[Bessyh]

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.

[Bessyh]

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

[SILLY]

My ACC began in the nasolacrimal duct(tear duct)  and lacrimal sac but had spread into the nasal cavity . Since treatment throughout 2010 there has been no sign of cancer . I had my final check up in April this year and won't see my ENT or radiation /oncologist if and when metasteses occur . My only scans now are annual chest xrays . 

[MrsMc]

Hi!!

I have just joined and read your post

I have ACC - actually this is my second fight with the rotten thing. 12 years ago I had a tumour removed from a very unlikely place, my leg, and now it’s back again. This time, in the lung. 

I am scheduled for surgery this coming Wednesday.  Not a great Christmas, but I will beat this thing again. 

Happy to to chat with you if you need it. ACC is pretty rare. 

[Bessyh]

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.

[MrsMc]

Hi!  @Bessyh

Yes, from memory, back then no-one had ever had it in the leg. 

I’m having surgery at St John of God, Geelong. I must admit, I’m pretty scared. 

Wow - 2 weeks!! Did you have ACC?

I hope being at home is speeding up your recovery. Take care and Merry Christmas!

[Bessyh]

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. 

[MrsMc]

Fingers crossed it heals quickly. 😊💐