I was diagnosed with breast cancer last October and after a lot of tests have fairly recently found out that it could be Adenoid Cystic Carcinoma. I understand that it is a very rare form of cancer so I’m looking for someone out there how has also had it and to share their experiences of it. My consultant has only seen one other case of it but there must be other ladies out there so I’m hoping you might be able to get in touch and share any information you learnt along the way. So far tests have been inconclusive as to whether it is ACC or salivary gland cancer - did anyone also find this was the case?
I have seen old posts of ladies with this form of cancer too but the threads have been closed so I know there’s someone else out there! I’d love to hear from anyone so please do get in touch.
Not a lot of help on this in view of your specific question, but just wanted to welcome you here & do come & chat or vent on anything bc related. Whatever our diagnoses, we all go through similar experiences in relation to feelings, coping & treatment.
Hi, I too was diagnosed with adenoid cystic cancer in March. I have had a lumpectomy but am still awaiting decisions to be made about radiotherapy. My understanding is that as it is rare the oncologists want to discuss this with me. Just frustrating as every time I go for a follow up appointment (I had had to have a second op as the margins weren’t clear the first time) I think I will find out what next but not yet. Did you have radiotherapy? Hope you are recovering well now. Catherine
I know you posted this over a year ago, but I have just been diagnosed with ACC. I haven’t been told much about it at all, except that I will be having a wide local excision and sentinel biopsy on 8 September. I’m so nervous and anxious… all I know is that this cancer tends not to spread which I am desperately clinging on to.
I do hope everything worked out well and you have made good recoveries, and I would love to hear your experiences. Big hugs!