Pancoast tumour

Hello Tiger Mouse

I hope you don't mind me replying as I had a different kind of cancer to you but  by doing so it will hopefully bump your post.

I am sorry to hear that you have had a lung cancer diagnosis and I can remember with my own diagnosis - it was such a worrying time.

It is very natural to want more information but I would suggest trying not to Google for information as a lot of it can be out of date or inaccurate. We do have a Support Line (number below) where you can ask one of the nurses for more information on Pancoast tumours, if you feel this would help.

I will also pop a couple of links with some more information that you may find helpful.

Understanding lung cancer | Booklet | Macmillan Cancer Support

Pancoast tumours | Lung cancer | Cancer Research UK

I hope that your biopsy goes well. I wish you well with your treatment.

Hopefully someone now will see your post, who has had their own experience of the same type of cancer as you and will be able to offer some support. In the meantime if there is anything else you need, please do ask

Jane

Thank you so much for taking the time to reply to my post and hopefully alert others to giving me their story. I really appreciate your links too. Thank you ️

If you use the search feature at the top of the page and type in Pancoast - it will take you to previous posts that may be helpful

Hi Tiger Mouse,

The title of your thread is pancoast tumour, has this been confirmed to you? I only ask as I was referred to the lung team by a general surgeon because they had spotted a “17mm spiculated nodule suspicious for primary lung cancer in the apex of the right lung” and I’m quoting this from the referral letter.  Like you I was also very keen to inform myself and searched the web for reliable sources of information (big mistake). For some reason if you type apex and lung into a browser, it throws up lots of information about pancoast tumours and I thought it was safe to assume that this is what I had.  The referring surgeon was just describing where in the lung the nodule was - the apex.

Fast forward 4 months and the top lobe of my right lung is in the bin along with the cancer.  It was done by VATS and I was in hospital for 3 nights then home to recover. I’ll be followed up for 5 years but no further treatment- the best possible outcome I could have hoped for.

The early days pre biopsy and  treatment plan are very scary.  I was absolutely beside myself and the temptation to read everything and anything was overwhelming. 

Everyone here is very kind and supportive. I found the specialist nurses really helpful too and I placed my trust in them and the lung team looking after me.

Good luck with the biopsy, let us know how you get on.