Recently diagnosed

Hi and a very warm welcome to the online community

I didn't have this type of cancer, so can't share any experiences with you, but noticed that your post hadn't had any replies yet. Unfortunately, or fortunately depending on your point of view, this group is very quiet which I suspect is because your cancer is quite rare. 

It might be an idea to also join and post this question in the head and neck cancer group as I had a look and there are a few people there who have posted about having ACC.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and ask questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

Thank you for you help xxx

Hi there,

I was diagnosed with ACC of the right submandibular gland in 2012.  I had the gland removed (a very quick op - in and out in a day), and about six weeks later, started a six week course of radiotherapy.  I won't lie - it was tough!  But I got through it, and here I am, 7 years later, fit and healthy and with no signs of recurrence.  ACC is pretty rare, but there are a few of us here who've been through similar journey.  Please do let us know if you have any particular questions?  

Best wishes to you,

Jonathan. 

My ACC was in the bone just below my eye. I had my surgery in 2012 followed by 6 wk radiotherapy. My appearance changed a bit due to where my tumour was and I remember complaining to my husband who really hit the nail on the head when he pointed out “it was a small price to pay”  Since then I have felt well, had a small tumour removed from my lung last year but it was easy to recover from. My clinician does not advocate routine 6 monthly scans - he feels they heighten anxiety. I think I have had about 4 scans in the last 7 years. It’s nearly time for your appointment, I’m sure you must be anxious. I think the uncertainty is as difficult to cope with as the reality. I wish you well next week and hope you meet up with really supportive staff to help you through. I’ve found my nurse specialist really helpful over the years, she feels like a friend now!

Hi

Come On over to the head and neck group, although we might not all be ACC many will have had cancers in similar places. Me for example! 

my signature below details my diagnosis and I wrote a blog at the time that might shed some light on your journey. 

this time between diagnosis and an action plan is the worse. Your head is full of uncertainty. Once you have seen the consultant things will start moving and you’ll know what’s coming. 

Hi,

i have had acc for 10 years and found lung mets after 1 year 

I think it is important to have regular scans I had to ask for mine and I had them every 6 months. You should at least have them once a year.

i had my lung mets treated with rfaA which is less invasive than surgery.

However it sounds that you are doing well.

i have done very well over the years and still remain fit and well. Though things have progressed this year and I now have double vision and unable to drive.

love Ruth x

Hello GG

My wife was diagnosed with ACC parotid nearly a year ago. 

Surgery involving total parotidectomy and radiotherapy followed.

No two situations are identical but if I can help with information please say

Hello

i had ACC in the trachea. Loo at the following websites

salivary gland cancer UK

rhere is a digital patient support group on the 2nd May 

ACCOI

Is a website in the USA which has lots of info

i hope they help