Base of tongue solid type. Concerns of recurrence

Hi Aden 2025 and a very warm welcome to the online community which I hope you'll find is both an informative and supportive place to be.

I’m Anne, one of the Community Champions here on the Online Community and, although I'm not a member of this group, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.

If you don't get any replies here, it might be an idea to also join the main head and neck cancer group as you may find people with the same type of cancer as you there. 

If this is something that you'd like to do, just click on the link I've created and, once you've joined, you can start a new post in the same way as you did here and join in with existing conversations by clicking on 'reply'.

While you're waiting for replies, it would be great if you could put something about your diagnosis and treatment into your profile as it really helps others when replying to you and also when looking for someone on a similar pathway. It also means that you don't have to keep repeating yourself. To do this click on your username and then select '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.

Hi Aden

Have a look here: https://www.salivaryglandcancer.uk/

ACC is one of the salivary gland cancers, and SGC UK are a good place to start as ACC, though rare, is one of the commoner salivary gland tumours. 

SGC UK have meetings twice a year - both in person and online, one in London and one usually in N England. The meetings are really supportive and informative. There are sessions on support, treatments, research and so on.

I am a patient, my tumour was in my lower windpipe, diagnosed in 2014. Recurrence is the big question and basically can't easily be answered. ACC is a slow growing tumour, but every case is different, and there are too few cases per year to be able to make any broad predictions about cases in general or one in particular. I know that's not helpful right now :/

Have a look at SGC and see if any of your questions are answered there.

Cheers

Barry

Hi Barry, thank you for your reply. I have found  sgcuk site useful, do many with a diagnosis attend the meetings.I suppose i would appreciate some peer support from.someone with ACC BOT. I find it'rarity and unpredictability scary. Reading solid type and nerve invasion moreso. Some sites talk of recurrence and drop off in survival at  3 to 5yrs as reduced as 30%. I should be grateful but it hn't stopped me worrying..the emojis are accidents I can't seem to remove 

Yes, there are lots of patients in attendance. I'm pretty sure some are BOT too. It is very good to be in a room where most have ACC. It makes you feel a bit less 'unique'. Even my oncologist said I'd probably never meet another ACC trachea patient... Erm, no, several through SGC actually.

This is the problem with recurrence stats. There are not enough patients to get a good set of data. My prognosis was vague at best, and due to not having clear margins at the bottom of the removed section of trachea, I was not hopeful, but here I am 11 years on. It is a case of regular scans, watchful waiting. 

Where are you being treated?

That's so reassuring to hear. Especially being less unique as well as how.long ago you were diagnosed..I was operated on at St George’s London but now at Norolk and Norwich. I would.never cope with daily RT for 6 weeks at the Marsden were ihad been offered. I am in Suffolk

Yeah the radiotherapy gets increasingly tiring. We are about 15 miles from Derby where I had mine (surgery at Nottingham). I drove myself in for the first half but my wife drove me for the rest. 32 sessions in all.

I am.sure I will get through this. Like yourself I am sure surgery was heavy going. Well done you. Unfortunately I have a cervical myelopathy and stenosis so although I can drive its not long distances. I find it very frustrating. I am incredibly lucky my husband(my rock) will take me. Maybe when the next meeting is I might be able to get there. My best friend now lives in Matlock. Lovely area. And thank you for reaching out today, I appreciate it. 

Yeah the surgery was hilarious :) The amazing surgeon went in through my back. It was quite a big hole... All good now though, except for the post rads cough.

I think the next meeting, May?, will be in London.

The meetings are very welcoming of partners, carers, friends too. My wife is a regular. 

Matlock is great. It's a lovely area, we're near Ashbourne. 

Welcome to the ACC family :/

B.