adenoid cystic carcinoma

[Lampwork54]

Hi Melissa,  I'm really sorry to hear about your diagnosis.  I'd say your ACC in the breast would be very rare.  Good luck with your Radiotherapy. It's a long slog but will give you the best chance.  Have your doctors mentioned any chemotherapy?  I know it's not usual with ACC but as your primary is in the breast I was just wondering if that changes the option

of chemotherapy.  Am sure you will come through  this.  I hope they get you clear margins after the upcoming operation.  Please keep in touch and let us know how you are doing. 

[SILLY]

Hello Melissa 

I'm glad I found your post as I am not good at using this site since it changed . ACC of the breast affects about 12%  of those with ACC . I used to get the statistics from the Cancer Registry for our cancer but after a few years they started charging a lot of money for that so I stopped . I think ACC of the breast usually has a better outcome compared to ACC in other sites . Of course every person's experience is individual . I can think of at least one Australian in our Australian Facebook group whose cancer was in the breast but I think there are a couple more too.

Please contact me on Facebook as I know of no other way and I'll put you in touch with these others . I live on the Gold Coast but many of our group also live in Brisbane , 
All the best for your next surgery . It sounds as though it will go well . 

Sylvia Farry 

[MelissaCraig]

Hi Lampwork54, its indeed very rare, less than 1% of all breast cancers. My surgeon mentioned that it can be a possibility as despite the fact that my lymph node biopsy came clear, this particular cancer can be sneaky and find its away around to other parts of the body. Ultimately, the oncologist will make the decision. I'm sure tomorrow will work out well and I won't have to go for a 3rd time....I'm about to get a frequent 'flyer' card at my hospital LOL. Thank you and I'll keep you posted. M

[MelissaCraig]

Hello Sylvia, you are correct, the prognosis is quite positive but the main thing is making sure they can treat and possibly prevent it from recurring or starting elsewhere. I will definitely look you up on FB under Sylvia Farry and will see if I can find the ladies you mention. Thank you very much, Melissa

[SILLY]

Melissa , I can put you in touch with others , apart from Australians , who have been diagnosed with ACC  of the breast . No problem after you send me a friend request . 

[Katekat]

@MelissaCraig should be able to use Private Messenger here in the community now @SILLY, if you wanted to send her a message. 

Just click into her profile and use the send a message link 😊 I had to lock it down for new users as we had some spammers send a lot of messages back around Easter, so now I just disable it straight up though most members can use it after they've been here a while.

[MelissaCraig]

Thank you @Katekat

[archie]

I was diagnosed with A.C.C. on  Christmas Eve 2019.  I am off to see the Radiology Doctor on 8th January 2020.  I am full of wonder about the future and what lies in store for me. My Surgeon has given me some idea of the future, but for now it is wait and see.  Some of the side effects of the. Surgery are still playing up a bit, but hopefully they will go away soon.

[MelissaCraig]

Best wishes Archie. 

[archie]

Thanks MelissaCraig.  Reading back through the comments tells me I have a lot to learn.