New diagnosis

Hi and welcome to the community.
if you put adenoid cystic carcinoma in the search at the top of the page and select most recent in the advance search you’ll bring up the latest posts. You can tag into a thread there or highlight this one. 
There is an ACC forum here too https://community.macmillan.org.uk/cancer_types/adenoid-cystic-carcinoma-forum

You could try posting there as well. 

Best wishes 

Hi ER1

Although I did not have the same cancer as you I did have a maxillectomy in 2019 in which about half of my palate on the left side was removed. I was offered either a graft to cover the hole or an obturator. The obturator covers the hole and has teeth attached rather like a denture. It is removable. I went for the obturator option as I figured that this would save the long wait for healing to occur before I could have a denture made to replace the teeth that are removed when the palate is removed. All my left upper teeth were removed so didn’t want to spend too much time looking gappy as I already had all my teeth on my lower right jaw removed from a previous cancer op in 2013.

I also had a neck dissection one for the cancer in 2013 and one on the opposite side for the cancer in 2019. These operations occurred at the same time as the cancer operations. I found both times that my neck healed very quickly and it was not that uncomfortable. Likewise with the other operations. I hardly needed any pain relief and the healing was pretty much complete within 6-8 weeks.

The main drawback is the sensation changes in the neck, side of the face and lip which are a bit annoying. However the sensation has slightly improved over time although is still present. You get used to it after a while though.

I had a temporary tracheotomy for a few days while in intensive care and was glad when it was removed. You cannot speak during this time and it was a challenge trying to make myself understood. Had to use a few signs to try and tell the staff when I was too hot or cold. They eventually gave me a pen and paper and that helped. Also had a temporary nasogastric tube as I couldn’t eat for a few days but it was removed before I left hospital.

The speech pathologist visited me and monitored my ability to eat before I was discharged.

I am now managing well with the obturator and glad that I took that option although I know the graft option is equally as successful.

I also had radiotherapy so had to leave the obturator in during that time. However if your tumour is benign you probably won’t be going down that track.

Sorry this has turned into a bit of an essay.

Best of luck with the operation. It does take a little time to adjust to the changes but you will get there.

If there is anything else you would like to know just ask.

Best wishes

Lyn

I've had a fair bit of surgery - aside from neck dissections (x2) not the same as yours.  I can agree with what Lyn (Sophie66) has said about the dissections.  Easy to recover from.  Some "interesting" side effects.  Generally after nearly 2 years now all have either gone or just become part of normal life and a really non disruptive.

Hi ER1

Welcome to the forum but sorry for why you are here.  I also had ACC diagnosed back in 2009.  I have had similar surgery to Lyn (maxillectomy). I also have been restored with a dental obturator to cover the palatal defect as this was best for me. If I can be of any help with any questions please ask.

Best wishes

Nicky

Thanks Dani

ill have a look

Thanks Lyn, they offered me the obturator option too but I used a plate to go over some packing when I had the fistula and I didn’t like it hence why I chose the other option. Hard to know what to do isn’t it. I hope they don’t take many of my teeth. My tumour was at the junction of soft and hard palate so I’m keeping everything crossed that they don’t take many teeth. All I can say is glad can wear masks  
you sound like you have been through so much and thanks for sharing your experiences

Hi Peter, I’m only having the neck dissection so they can attach the blood vessels of the arm graft in my neck. He said he’s just taking nodes just in case? So hopefully the dissection won’t be too radical? Good to hear it’s relatively a good recovery with the neck!!! 
thanks for sharing your experience

Hi Nicky thanks for commenting and sorry to hear you’ve been through such a lot. I hope I don’t wake up with half my teeth gone but still better to get the devil out and gone. The surgeon seems confident so I just have to trust them and hope I’ve picked the right pathway. I did struggle with the oronasal fistula after 1st lot of surgery so I just want the hole plugged this time. Bigger op I know but I’m young fit and really well so fingers crossed  

thanks for your support

Hi ER1

I am sure if there is a need to remove some teeth this will be discussed with you prior to your surgery.  All the very best for your up and coming surgery and recovery. Let us know how things go.  There is always someone here to help with support  and advice if they can. 

best wishes 

Nicky

Thanks