Introduction new member

Hi Bwis Blethers and welcome to our little community. Sorry you have had to find us.

It does seem a long time from first presenting to diagnosis but I guess as ACC is so rare, slow growing  and has symptoms similar to lots of other conditions it foxed diagnosis much earlier than it did. It was probably too small to show up on your first MRI. MRI is really sensitive in picking up small lesions so it just seems bad luck

Do let us know how you get on if you feel up to it and best of luck for your surgery

PS....Oh and stay off Google. The best place for advice is your team and recognised sites like this and Cancer Research UK

Hi Blis Blethers

Like Dani says welcome to our small community. Can’t really add much to what Dani has said just to reiterate kerp away from Dr Google stick to recognised sites. Let us know how surgery goes. Hopefully someone will pop on whi can offer a bit more knowledge. 
I had tonsil cancer with several affected lymph nodes now almost 3 years post treatment. Living my life. 
Hazel x

Hi Bwis Blethers welcome but sorry because it is about your diagnosis of ACC. I have ACC and I was diagnosed back in 2009. Mine started in my maxilla.  ACC is classed as one of the  rarer cancers. If you have any questions and I can be of any help please ask.  There is a group here on McMillan for ACC but it is a little quiet at the moment. Maybe it would worth introducing yourself there as well as staying here.  Try not to get to overwhelmed by looking for too much info.  I would wait until you have had your consultation so you know more what is relevant to you.

Best wishes

Nicky

Cheers Nicky, Yeh, it's a whole new world and will take some getting used to. It's been a rocky twelve months but we will get there.

Hi Hazel, Yeh Google can be helpful if used very carefully. I am lucky (well you know what i mean LOL) because my wife was a nurse assisting surgery in the MaxFax department of a major hospital for 18 years. She will keep me on the straight and narrow. Thank you for your interest. I will need a fair bit of that in the months to come.

Hi Bwis Blethers

Sorry that it has taken so long to get the diagnosis but it sounds as though your medical issues were rather complicated. Seems as though things are gathering momentum now so you should know what treatment you will be receiving very soon.

I had a right partial mandibulectomy in 2013 followed by 6 weeks radiotherapy and then in 2019 a left maxillectomy followed by 6 weeks radiotherapy. The cause of my cancer was not the same as yours and was a squamous cell cancer but sounds as though the treatment may be similar.

I can give you info. on what to expect with either of the operations depending on which one you might be having if that would be helpful.

It can be a tough road but here I am now able to do most of the things I could do before my operations and back to enjoying life again.

Best wishes to you and hope that all goes smoothly.

Lyn

Hi, I'm new to the forum.  I don't have cancer myself, but my 50 year old son has recently been diagnosed with mouth cancer.  He only started having symptoms in early March.  He is going into hospital at the end of the month and has his operation 29th June.  We are all in a bit of state of shock at the moment as this was the last thing we expected.  We don't know quite what to expect from the treatment, although he is going on 21 June for a talk with the consultant, so we might know more then.  Of course he won't be allowed visitors (due to Covid) whilst in hospital and he has an 11 1/2 year old and a 9 year old.  It's difficult for them to understand.  My son has great difficulty in eating, can't eat anything solid at all and also has difficulty sleeping.  The only thing myself and my husband can do is be there for our son and his family.  Not much else I can say, but I'll keep in touch and if anyone has any suggestions on ways to help it would be appreciated.

So sorry to hear about your son. The best thing you can do is be supportive and that means listening to your son not telling him what he should be doing ( I say this as a parent and a sufferer and mean it in the nicest possible way) 

A serious offer to mind the children, get them to school or even have them with you for a few days might be a lifesaver at times. 
If he has to have radiotherapy afterwards offer a lift to treatment every day when he becomes unable to drive? 
An offer to do anything to take the stress out of day to day living would be greatly appreciated I’m sure. 
I hope your son makes a speedy recovery 

Best wishes

Thank you Beesuit.  Luckily we only live about 10 minutes drive away from my son and his family.  You're right, we just have to be supportive.  We have looked after the children a few times when he's been for appointments, as his wife has to drive him.  As he's on liquid morphine etc he doesn't feel he wants to drive.  Our daughter in law works part time, so it may be when he starts radiotherapy we might need to take him for the treatment.  Like you say, we just have to be there for him and the family, however, as a parent it's hard to sit back and know there is little we can do for him.  We just hope for a speedy recovery.  Thanks again for you your reply. 

Hi Macfarlane

Sorry of the news of your sons cancer, and the problems he is struggling with.  We are all are shocked when cancer gets diagnosed and this takes time trying to get our heads around.  Being there for your son and his family will be invaluable, and a great help for them.  All help that is offered practically and emotionally by yourself and others too, is what gets us through.  My son was 9 years old when I was diagnosed.

The people on here are very supportive and will help you both with good advice and emotional support when you need help.

I am wishing you all the best

Nicky