Rare cancer - Adenoid Cystic Carcinoma (ACC) - is there anyone else out there with this?

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I have posted on here before but it has been suggested that I put another post on with ACC as the heading.
I am 47 years old and was diagnosed with breast cancer after three years of trying to get a lump and pain in my left breast sorted out. I was diagnosed with BC early June and after a lumpectomy and SNLB was told on 29th June that it isn’t breast cancer but adenoid cystic carcinoma (ACC). The surgeon has only had one other case in 20 years.
I am desperate to know if there is anyone else out there who has had experience of this and if there is to find out what kind of treatment they received?
Thanks, Heather x

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Bumping this thread for you Heather.

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Many thanks Puffy White Cloud. I dont think theres anybody out there!
Heather x

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Just asking again in case there is someone out there with this type of breast cancer. I have had my treatment and wondering if there is someone else on here with it (or you know of someone) and what their follow up advice/scans, etc has been.
Thanks, Heather x

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Hi Heather
Not had that type of breast cancer, and might be a bit late now you have had your treatment, but only just found your post. I wondered if this link might be of interest to you: Adenoid Cystic Carcinoma ACC Cancer. ACC information. Patient | Patient
Best wishes
pg xxx

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Thank you very much pg. I have not seen that information before - very helpful. Sorry I haven’t replied to you before now but I had actually given up on anyone replying to me!
Hope things are going ok for you.
Thank you again, Heather x