adenoid cystic carcinoma of the breast (ACCB) - breast ACC

Yes how come only 5

Hi, I’m an ACCb sort, its been 7 years now and still a NED. Have you joined the facebook page with a group of us? Lots of shared experience globally although a very small group overall, very rare cancer type.

Sorry you have t had much response. My acc is submandibular gland and it spread to my lungs a year after the radiotherapy and has grown very slowly 

I will be 13 years post diagnosis in July 

you are lucky  to have gone 7 years. Did you have clear margins ?

I might be too late for this thread(!) But I found out this week that my breast cancer is adenoid cystic. Awaiting a second surgery to clear the margins (wondering if mastectomy would be better?) And then radiotherapy for a few weeks when the wound has healed. They said chemo wouldn't be effective for this type? And luckily it hasn't spread to lymph nodes. Although it was grade 3 so quite aggressive. Wish it wasn't so rare and there was a clearer pathway?!

Yes sounds sensible to have mastectomy and radiation. 
what do your doctors suggest ?

They are just planning another lumpectomy, they said mastectomy is a bit drastic at this stage... I just think if lots of tissue and the nipple are gone anyway why not get rid of the whole thing?! But maybe just have to trust the system.

I do not have experience of breast cancer. I suggest you do your research or even ask for a second opinion if you are not sure x

Hiya, I have just come across this post and I could have written this entry! I had 2 lumpectomies in September for acc and it was a grade 3 tumour. Nipple was also removed. They also told me a mastectomy would be drastic and thankfully my margins were clear after second surgery. Awaiting radiotherapy now but am trying to get referred to Dr Metcalf in Manchester to have my tumour profiled - I don’t think it will make a difference to my treatment plan but it would give me peace of mind. My oncologist doesn’t plan to treat me differently than if it had been grade 1. He did say surgery is main treatment anyway so I do find that reassuring. There is a good Facebook group for acc breast with 120 something members worldwide. I would love to know how you got on and what your treatment plan is now. I am just going to be having 9 sessions of radiotherapy.

Sounds very similar to me. Have you joined Facebook group for acc breast. I have asked the oncologist to refer me to dr metcalf in Manchester, fingers crossed.

Hi hope you are all clear now and sorry to remind you the experience. I have just been diagnosed on Thursday and waiting anxiously to see the Dr, no ER PR result etc yet. Just wondering how the surgy went, how long did you recover from the surgery...thank you so much for any information you can share. ,