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

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

Hi only just seen this post and although not quite the same I was dx 6years ago with Adenosquamous carcinoma in left breast.I had WLE and R/T in 2007 it has now returned as T/N in the sternum and I have had cyber knife treatment for this..
I know that all is not well and I dread the time I will have to have chemo again as I didn't have a very good time with it last year but know that is the only treatment available to me now.
I hope all you ladies are doing well and coping with your treatments and can see he light at the end of the tunnell xx

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

Yes! I was diagnosed with this 5 years ago - had partial mastectomy and radiotherapy. So far ok - hope you are too.
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Re: Rare cancer - Adenoid Cystic Carcinoma (ACC) - is there anyone else out there with this?

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
Member

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

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: http://www.patient.co.uk/doctor/Adenoid-Cystic-Carcinoma.htm
Best wishes
pg xxx
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Re: Rare cancer - Adenoid Cystic Carcinoma (ACC) - is there anyone else out there with this?

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

Many thanks Puffy White Cloud. I dont think theres anybody out there!
Heather x
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Re: Rare cancer - Adenoid Cystic Carcinoma (ACC) - is there anyone else out there with this?

Bumping this thread for you Heather.
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Rare cancer - Adenoid Cystic Carcinoma (ACC) - is there anyone else out there with this?

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