Hi - new here and I see there’s not many of us with ACC!

Hi Wendy, I'm sorry to hear about your recent entry to the ACC club :/ There are a few of us lurking here, and there's a lot of support available through SGC UK. I was diagnosed in 2014 (trachea) and had a thoracotomy and 32 sessions of radiotherapy just into 2015.

Have a look at the SGC site there are some good patient stories there.

All the best

Barry

Hi Wendy

I'm sorry to read about your diagnosis and that you too have ACC.

I'm glad Barry has already mentioned SGC UK and they were a great help when I was initially diagnosed and spinning with nowhere to turn. You can find their videos on Youtube too.

I was diagnosed Aug 2024 with a ACC in my right parotid gland and 5.4cm tumour.
Surgery Sept 2024 and 35 session of Proton Beam Therapy.

I also find the head and neck cancer sub-reddit a useful place and I know others mention groups on Facebook too.
Accrf.org is a very useful site and there is alignment with SGC UK with Emma on the ACCRF board.

Hope your healing has improved and good luck for the radiotherapy.
Keep your team informed on how you are feeling and tell them everything so they assist you as fast possible.

Take care,
Nik

Hi Barry - thanks for the reply (which I didn’t see until this evening). I’ll definitely check SGC UK.

All the best

Wendy

Hi Nik

Thanks for your reply. I’ll check the groups you and Barry have mentioned. I’ve had 5 sessions of radiotherapy so far and doing ok. I’ve been given cream and mouthwash already, which will hopefully reduce symptoms. 
Take care

Wendy

Very welcome. You'll see my story on there :) 

Best wishes

Barry

If you can afford to, I highly recommend using Strata-XRT gel ASAP and be liberal (order 2 to 3 tubes). 

Someone in Australia recommended it to me and honestly it was a game changer. The only issue I had was not putting it everywhere and the parts I missed, and only used E45, were pretty bad at the end but where I used this was so much better.

All the best. 

Reach out when you need to.