Lung Mets Stereotactic Radiotherapy

 Nadin 

Hi Nadiia 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 sorry to read that you have ACC of the salivary gland and it's always a worry when your consultant advocates putting you on watch and wait as I think we all feel that some sort of treatment should be happening.

I don't have any experience with this type of cancer but 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 where it'll be easier to spot.

You might also like to join the main head and neck cancer group as I'm sure you'll find others there who will understand how you're feeling and might have been in a similar situation. If you'd like to join, just click on the link I've created which will take you straight there. Once you've joined the groups you can start a new post in the same way as you did here and join in with existing threads by clicking on 'reply'.

It would be great if you could pop something about your diagnosis and treatment so far 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.

x

Hello Nadi,

Any update?

Nadiia, I’m very sorry you are receiving conflicting advice in Scotland and in Ukraine. I’m so sorry too you have to be in Scotland due to war. If you click on my profile you’ll see my story. My diagnosis was in 2012, my tumour in the bone under my eye, and a met in my lung and my neck. The advice was to wait and watch. Over the years they didn’t change much. The lung one was surgically removed in 2018, mostly because it was accessible, was a single tumour. It was easy surgery. The neck one is still there. I’m not aware of it and don’t think about it much at all. At first I was quite happy to “wait and watch” and then my husband was diagnosed with a terminal illness. He was quite well at the time and I had had a chest X-ray for an unrelated reason. I was scared to carry on waiting as I didn’t want to become ill when my husband was ill, and a bit scared that it wasn’t ACC too. I know from here that people have had various different non surgical treatments too. If you have been assigned a clinical nurse specialist I would suggest that you contact them I found mine really helpful and supportive. It is also possible within the NHS to request another opinion. It must be so hard for you to cope with this conflicting advice so far from home, and in another language. Your English is amazing! I wish you well and hope everything looks better for you in the future.  Celia