Hello Alidee1,

Welcome to Cancer Chat. I am sorry to hear about your diagnosis and I hope the radiotherapy sessions which you are about to start go well.

We have some information on our website about salivary gland cancer which you can read here. According to the information on our site, "about 15 out of every 100 salivary gland cancers (15%) are adenoid cystic cancers" and they are usually slow growing (low grade) and start as a painless lump.

It is normal to be scared as you are about to start treatment and I thought I would share with you a couple of links to help you prepare for the sessions. We have a section on our site on radiotherapy for salivary gland cancer which you can access here and within this section you will find some information on radiotherapy treatment as well as detailed information on radiotherapy side effects. 

But try not to anticipate too much what side effects you might get as these may vary from one person to another. If you want to have a chat about all this with our friendly team of nurses, you can give them a call on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm.

I did a little search on the forum for you to see if I could find others with the same type of salivary gland cancer and you might be interested in having a look at this thread by [@HelenP]‍ . Helen's husband went through a 30 day course of radiotherapy 2 years ago and got through the treatment well it seems so she may be a great person for you to chat to. Hopefully she will drop by and share her husband's story with you and feel free to comment on her thread too if you wish.

Fingers crossed all goes well for you. Let us know how you get on with everything. We'd love to hear from you again.

Best wishes,

Lucie, Cancer Chat Moderator

Hi Alidee1, just saw your post. Hope all is going well with your treatment. 

Dear Alidee 

i hope you are recovering.

My wife has ACC of parotid gland and is having surgery to remove the gland and probably the nerve (hoping for nerve graft) She will have radiotherapy 6 weeks later. Anything you can say about your experience would be appreciated

Hi to everyone on here, I’ve got ACC and I’m having my eye removed as well as a craniotomy to remove as much of the optic nerve as possible. Scared to death 

Hi shane

How did your surgery go last year. My partner has acc diagnosed 3 years ago and told surgery not possible. He has it behind his eye, sinus and fossa and has lost the use of the eye. Any info would be great.

Hope you are well

Regards Lisa