Hello

Hi Mod and welcome to the community. There are a few people here who are in the same boat as you. I’ve done a quick search for you here

https://community.macmillan.org.uk/search?q=Salivary%20gland%20cancer&group=100#serpsort=date%20desc

You can have a look through and tag on to one of the threads. You should get a connection there

Best wishes 

Hi Mod,

I’ve just had surgery to remove my saliva gland after being diagnosed with a cancerous tumour there. How is your treatment going?

cheers

phil

Hiya Phil, if OK to call you Phil. I had 2 ops then 30 rounds of radiotherapy. Finished on 3rd September. Just waiting now to find out what's next. Did you get any nerves removed?

%Josie 

Hi Josie,

Phil is good!, the surgeons said that the nerves were not removed. I only had surgery on Friday though so I can’t feel a lot on one side of my face so probably too early to comment on any loss of sensation. I’ve been given a few head and neck exercises to do once the drains are out.

Sounds like you are a few steps ahead of me so hopefully you get good news at the next consultation.

Cheers

Phil

Morning Phil, how are you doing today? Yes do the exercises they do help. I had a lot of nerve pain so don't be brave, tell them if you have pain. Are you still in hospital?

Josie 

Morning Josie,

Not too bad today thanks. yes I’m still in hospital but should be released either this evening or tomorrow. I’m taking all the meds they give me, for me the worst pain is in my teeth and throat when trying to swallow, then I can’t quite close an eye either which is awkward and an ear is blocked but it’s slowly getting better.

good to know the exercises work, looking forward to being a bit more mobile soon.

cheers

phil

Hiya you'll be glad to get home. I tried to keep eating different things that were difficult to swallow so my throat didn't close up. I lost some hearing but just getting used to it. Do you have any further treatment to get?

Josie 

Hiya thank you for information. I'm going to look through it. How are you doing now?

Josie 

I expect so, I need to wait until the follow up histology but I was told at the initial diagnosis that I would probably need radiotherapy. There wasn’t evidence of spread on the pre-op PET scan but the surgeons thought it best to do belt and braces. They have removed the saliva gland and the lymph nodes under my jaw.

I don’t know how similar that is your experience? I must admit I’m quite apprehensive about radiotherapy but just taking things one step at a time at the moment.

Hiya Phil, first op they only took a biopsy as it was worse than they expected. Got diagnosed officially on 10th June. 2nd op 22nd June and started radiotherapy on 26th July. Took out nerve in face so can't smile anymore and bone. If you need to talk about anything just let me know. I don't know anyone who has had this type of cancer. When I read up there's only 762 cases a year. Are you getting released tonight?