Lung Mets ACC salivary gland Stereotactic Radiotherapy

Hi Nadin. So sorry to hear you are in this situation and so far from home. 
None of us here can offer a medical opinion I’m afraid. 
What I can offer though is advice for you to seek a second opinion from another cancer centre 

There is such a huge difference between the two courses of action you would benefit from another opinion. 
I hope you can find an answer sometime soon 

Best wishes 

Nadiia, my name is Celia. Like you I live in Scotland. My ACC was just below my eye and I had surgery and radiotherapy in 2013. At that time I knew I had tumour in my lung and in my neck and it was decided to wait and watch. In 2018 I was feeling a bit breathless. The lung tumour had grown only maginally and it was thought it was unlikely to be causing any breathlessless. Around that time my husband was diagnosed with a terminal illness, he was still feeling well and I elected to have the tumour removed as I was concerned I would become ill at the same time as he would. I have had no recurrence and the neck tumour too has grown only marginally in that 10 year period.  I have not logged into this site for a number of years but do recall people discussing ablation of lung mets. I can only re-iterate Dani's suggestion that if you are doubtful about waiting and watching you request another opinion (this is an entitlement in NHS).  In addition I would recommend that if there is a Nurse specialist attached to the Unit you are attending you contact them for more advice.  I have found mine invaluable over the years. I am so sorry you are unable to contact your original oncologist, your difficult decisions must be made so much harder with all the stress and anxiety associated with the awful situation in Ukraine. I hope you reach a solution soon.   With my best wishes, Celia

Thank you Celia. That’s really helpful 

Celia, Thank you very much for your reply, it's very important for me to hear from somebody who understands. The oncologist from Western General Hospital reassured me that this tumor grows very slowly and may not have any symptoms from them for quite a while. And if they show a significant change in their size, he will refer me to Christies Dr Rob Metcalf for any further advice. But I think may be better now to remove these lesions from my lung. It's so rare diagnosis and I don't know anybody with that. And the level of my anxiety is very high because of that. Thank you for your story. Hope you are doing well now. All the best, Nadiia.

Dani, thank you for your support! 

Hi Nadiia

Like the others here so sorry to see all  what you are going through with and now lung mets. I cannot offer any medical advice but can share my experience. It is important to say we are all different with our own situation with our ACC.

My own experience when  lung mets appeared on my Ct scan 6 yrs later after being diagnosed with Acc. One or two  I believe to be over 1 cm but cannot say exact size ) - I had 6 removed surgically  vIa VATS wedge resection  8 months later. I had another which was of concern at the time 2 years later.( 2017). removed by the same procedure.The ops were successful for me in my case..All of us are different and ACC mets can be very slow to progress. Wait and see is probably used as your oncologist approach as your  nodes are still quite small ( under 1cm).. I can understand how you are feeling having been through this myself. I know it is hard but try and stay calm as possible. It is good you are reaching out for others' experiences.

 The others have given good advice to chat  further to your oncologist and CNS.with your concerns. 

I hope this helps 

Best wishes going forward 

Nicky

Hello Nicky,

Thank you very very much, your story is very useful and helpful for me. It's quite difficult to be calm, but I'm trying:). I go to the swimming pool and doing yoga exercises almost every day. Hope you are well

All my best, Nadiia.

Nicky, I would like to ask you a question. Do you have chemotherapy after your VATS wedge resections? 

Thank you!

Best wishes, Nadiia.

Hello Nadiia 

No, not with  Vats Surgery.

Nicky x