topic Re: Adenoid Cystic Carcinoma in Living with cancer

Adenoid Cystic Carcinoma

mannagum — Tue, 31 Oct 2017 11:03:09 GMT

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

Re: Adenoid Cystic Carcinoma

Katekat — Tue, 07 Nov 2017 02:41:34 GMT

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

Re: Adenoid Cystic Carcinoma

Bessyh — Tue, 07 Nov 2017 03:31:02 GMT

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.

Re: Adenoid Cystic Carcinoma

Bessyh — Tue, 07 Nov 2017 03:33:24 GMT

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

Re: Adenoid Cystic Carcinoma

SILLY — Thu, 09 Nov 2017 03:36:45 GMT

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 .

Re: Adenoid Cystic Carcinoma

MrsMc — Thu, 14 Dec 2017 22:08:01 GMT

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.

Re: Adenoid Cystic Carcinoma

Bessyh — Fri, 15 Dec 2017 02:06:44 GMT

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.

Re: Adenoid Cystic Carcinoma

MrsMc — Sat, 16 Dec 2017 11:10:30 GMT

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!

Re: Adenoid Cystic Carcinoma

Bessyh — Sat, 16 Dec 2017 12:21:54 GMT

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.

Re: Adenoid Cystic Carcinoma

MrsMc — Sat, 16 Dec 2017 13:07:46 GMT

Fingers crossed it heals quickly. 😊💐

Re: Adenoid Cystic Carcinoma

SILLY — Sun, 17 Dec 2017 01:31:31 GMT

I was diagnosed with ACC in 2010 , nearly 8 years ago . Since then I've had no recurrence or mets . Mine was in the tear ductand lacrimal sac but it had spread into the nasal cavity . Each year it has become easier to live with this . I think I've been luckier than some I've met online and in person.

Re: Adenoid Cystic Carcinoma

SILLY — Sun, 17 Dec 2017 01:32:38 GMT

I've replied to another of her posts now .

Re: Adenoid Cystic Carcinoma

SILLY — Sun, 17 Dec 2017 01:45:13 GMT

I agree that your cancer was in a rare spot . I've heard of someone else having it in her arm .

Re: Adenoid Cystic Carcinoma

freshcalendar — Sun, 17 Dec 2017 02:46:45 GMT

why?

Re: Adenoid Cystic Carcinoma

SILLY — Sun, 17 Dec 2017 13:00:03 GMT

All the best for Wednesday .