Hi everyone, my name is Julie from Blackpool, I am 49 and in November 2011 I was diagnosed in my left breast with adenoid cystic carcinoma. I was gobsmacked when I realised my consultant had to google this type of breast cancer as it is so rare they didn’t know anything about it! If you are gonna get breast cancer this is the want you want said the breast care nurse. What they did know is that it doesn’t spread. I had a small lump which upon examination turned out to be a benign cyst. The mammogram didn’t show any cancer, but after a biopsy in the area that the cyst was removed were cancerous cells. An ultrasound showed an area that was thought to be about 11mm, so a lumpectomy was performed in December 2011. The biopsy showed the clear margin was in fact loaded with more cancer cells. A mastectomy was done in January and three weeks later I was driving and back at work. I am waiting to start my radiotherapy on 27th Feb and doing really well. I am just really anxious to speak to anyone who has had the same rare cancer as me! Keep positive folks!
Hi marksgirljulie and welcome to the BCC forums
In addition to the valuable support you will receive here from your fellow users I am posting a couple of links to further information and support available from BCC. Our helpliners are also here to support you and you can call on 0808 800 6000 Mon-Fri 9-5 and Sat 902.
breastcancercare.org.uk/diagnosis
breastcancercare.org.uk/breast-cancer-services
Best wishes
Lucy
Hi julie
As well as being a breast cancer Patient I’m also a breast care nurse and have only come across this once… And it was from an audit I did so never met the patient. But the info I had about her cancer was it was very rare and. Dry unlikely to spread but was triple negative ( doesn’t respond to hormone or herceptin therapy) which apparently is common for adenoidcystic bc.
Good luck with your rads. I hope you can find somebody who has had a similar experience.
Lulu.