Hello everyone! It is good to be here. I have just been diagnosed with Adenoid Cystic Carcinoma. I’m having further surgery on the 29th and am currently isolating in preparation for that. Although I would like to hear from anyone with this diagnosis, I recognise this may be unlikely is it is an uncommon one! I would really like to hear from anyone with any less common diagnosis - or anyone at all!
Hi Nurturegirl
Don’t think there was anything particularly uncommon about my diagnoses - apart from, perhaps, having several of them, aren’t I lucky?! LOL! But wanted to say hi and wish you the best for your treatment. I hope you find the support of this forum as useful as I have over the past few months xx
Hi Nurturegirl - I’m very sorry to read about your diagnosis and sending you hugs and best wishes for your surgery and treatment. I didn’t have the same diagnosis as you, but I wanted to welcome you to this lovely forum and hope others may have some advice. I had chemo, a mastectomy and radiotherapy so I’m happy to answer any questions about those that you might have - or if you just want to chat/offload, please do. This is a safe and non judgmental place to do this.
In addition, if you have medical questions you might like to speak to the nurses on here who are always very supportive and helpful.
Very best wishes, Evie xx
Hi Nurturegirl,
Welcome to the forum!
I just did a quick search on the forum and the last post I could spot specifically referencing adenoid cystic carcinoma was in 2016! In case its of any interest the link is below - it includes a link (provided by one of the BCN Community Champions) to an American Breast Cancer Research website with some info about the condition. It looks like it’s extremely uncommon from a table in the article which is why I presume the link was included (since we tend to stick to BCN/UK info).
forum.breastcancernow.org/t5/Public-Archive/ACC-of-Breast/td-p/1043557
Sorry to hear you’ve joined this unique club. The forum is great - lots of wonderful women and loads of support, advice and chat, through all the highs and lows of bc journeys.
In case you are not aware, there is loads on info on the main page of BCN (look under info and search publications), there’s a magazine, there’s the phone line if you need to contact a BCN nurse (plus a message the nurse section on the forum), plus lots of women of all ages currently going through diagnosis/treatment and those who tend to pop back in to help out! You can also ask to be put in touch with someone with a similar condition by contacting BCN, although as you say given the uniqueness…
Good to hear your have an op date and are taking the necessary precautions pre-op. Be kind to yourself and take one day at a time.
I had treatment back in 2014 for one of the more common forms of bc and like to pop on the forum to help out. I’m doing ok and found the forum so helpful when I was going through active treatment. Everyone here gets it and I’m sure others will say hello very soon.
Sending you a gentle hug,
Seabreeze x
Could you tell me what your first symptoms were?