At present the "Detect lung cancer early" campaign is running in Scotland. The team are keen to find people who have been treated recently to share their experiences to encourage people to get diagnosed sooner. If you would like to get involved please do get in touch.
The "Be clear on lung cancer" campaign is also due to run in England again this spring, so please share your experiences if you are south of the border.
We are of course always keen to hear from people across the UK and across the globe so do just get in touch if you want to share more about how things have been for you.
best wishes
Lorraine
on behalf of the Information & Support team
Written by
LorraineD
Partner
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Thanks for your post,as you know I have had surgery for my lung cancer,an upper right lobectomy,I have just made your 5 year rule LOL,the 5th anniversary of my surgery is this Monday the 27th of January.I will be happy to support you,please do get back to me if I can help.
Hi Lorraine, although I have been a member of Health Unlocked for some time, this will be the first time I have posted. I had surgery in 2011 when I had a top right lobectomy, at my first appointment after the op with my consultant I asked if I should be having chemo to mop up any stray cels( I had spoken to people who had had chemo after their op) I was told I was cleared of cancer and there was no.need for me to be put through any grueling treatment, unfortunately the beast came back in my lymph nodes in two places , I had chemo in 2012 which reduced the beastly tumours but unfortunately did not cure me, so I have to live with that. I am getting 6 monthly checks and next one due in April, I often wonder If there is anyone else out there who has experienced similar, I was extatic when told I was cured and then totally deflated when diagnosed again.
I went to my GP in March 2011 with a mild tickly cough (which wouldn't go away completely) and a vague feeling that I was getting slightly short of breath more easily than normal. I wasn't coughing anything up and I wasn't losing weight so there were no dramatic symptoms. I was diagnosed with a T3N0M0 squamous cell cancer in the lower left lobe later that month and had a lobectomy in May 2011. However, another cancer (adenocarcinoma - T1bN0M0) was found in the upper left lobe during surgery and I had the upper lobe removed in August 2011 (so I know there's a world of difference between having part of a lung removed and having the whole thing taken out!). I was told I needed no chemo or radiotherapy. Initial diagnosis was done at the Western General in Edinburgh and surgery was done at Edinburgh Royal Infirmary. (Incidentally, there's very little information about living with pneumonectomy: most sources of information don't go past the post-operative period and often lump all lung surgery together although the volume of lung removed makes a big difference, naturally.)
sorry for not replying sooner, it is really useful to hear your experience. I will pass on your information gap to our team. We have recently produced a new Living with Lung Cancer Pack and are about to update our surgery booklet.
If you feel able to share your story, either on our website or in the media or you would like to be involved in reviewing our information we would be happy to talk you through this.
Just following up on Lorraine's post above, the Roy Castle Information Team will be updating our Surgery for lung cancer booklet in the next month or two. We would be happy if you would like to join our Reader Panel and feedback on the existing surgery booklet and what information you would like to see in the new booklet. You can view our current information for surgery here - documents.roycastle.org/Sur... (copy the link into your browser bar).
If you would like more information, please contact me at ashley.burns@roycastle.org
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