NEW DIAGNOSIS - very confused and frightened.. ALSO CAN'T POST - PLEASE HELP!

I had a WLE and SNLB on 20th June. Went to clinic for my results on 29th June and have been told it is good news. I have a very rare cancer, adenoid cystic carcinoma (ACC) which is not actually breast cancer - it just happened to have appeared in my breast - and that I will probably not even need any treatment. The surgeon said I could google it when I got home - they had actually had to read up on it this morning before they saw me. I was obviously on top of the world with this news.

When I have got home I have googled ACC and have got some very alarming facts, one of which is that it accounts for 1% of breast cancers. Also, it appears that only 5-10% goes through the lymph system the rest of the time it passes through your blood or nervous system. I have discovered that when you have ACC it is important that you receive the correct treatment as some treatments do not work for this type of cancer. Is there anyone out there who has this cancer or knows of anyone who does. I desperately want to get in touch with someone who has ACC of the breast and has knowledge of where the best treatment/advice can be found and what treatment they have had.
I just want some facts so that I can deal with this because at the moment I don’t know where to turn for help and feel that I am “floating” because I don’t appear to “belong” anywhere. I have spent a lot of time looking on the forums here and am amazed how much everyone supports each other and how everybody gains strength from each other in such terrible times.
COULD SOMEONE PLEASE ADVISE ME ON HOW TO POST REPLIES AS I HAVE BEEN ON OTHER FORUMS AND RECEIVED ADVICE AND IF I AM LUCKY ENOUGH FOR SOMEONE TO REPLY TO ME I WOULD LIKE TO AT LEAST ACKNOWLEDGE AND THANK THEM FOR THEIR ADVICE.

Thank you, Heather x

Dear heather

I am sorry your post didn’t receive any replies when you posted in July, this is due to the technical issues we have been experiencing and are still working on so we apologise for this

Best wishes

Lucy

Hello Helen,
I am sorry you have not had replies - I hope that in the meantime you have found support elsewhere. I am sorry - I don’t know anything about ACC. If you still are not receiving support from others here (and as Lucy says, this site has had LOTS of technical problems over the last few months) that you ring the BCC helpline on Monday 9they are fantastic) and/or get in touch with macmillan via their websitre which is very helpful. I hope all is going well with yoy,
love Mo