Hi everyone
I was (mis)diagnosed with stage 1 nsclc squamous back in March 2013. As I was stage 1 surgery was an option. Brilliant I thought. Curable I thought. Wrong!
When surgeons went to remove the bottom of my right lung they also found a tumour stuck to my pulmonary artery, far to close to my heart to be removed. So the tumour on my lung was removed but the other stayed put.
So I went into surgery stage 1 curable and came out stage 4 incurable. I’ll never forget how ill I felt after surgery or the ignorant surgeon who leant over me, told me the bad news and walked off before I could say anything. My world fell apart and so did that of my then partner and 2 daughters who were 8 and 10 at the time.
Then a tumour in my right breast appeared. This halted chemo and radiotherapy. Turns out they couldn't determine if this was breast cancer or lung cancer metastasis.
Eventually after a lot of kicking and screaming from me, I got chemo which after 2 rounds of gemcarbo the breast tumour disappeared.
3 months after chemo and radiotherapy a new tumour appeared in my abdomen which luckily radiotherapy zapped to oblivion.
February to September 2015
I had been having severe pain in my abdomen. Due to previously having a tumour there I was panicking. I visited my gp who sent me for an ultrasound. I was told it was gallstones and put on painkillers. The pain continued and I repeatedly went back to my gp who increased the painkillers each time but the pain worsened. One morning I took the prescribed amount of painkillers but didn’t keep them down. Not knowing what to do I rang 111. Due to my history they sent an ambulance. The hospital dosed me on morphine did numerous tests and sent me on my way. At 7pm that night I got a phone to return to a&e immediately. The test results had been written down wrong and I actually had sepsis caused by an infection on my gallbladder. I was in hospital for 10 days, 5 of which I do not recall. I was left with a drainage bag from my gallbladder. 3 months later my gallbladder was removed. At least it wasn’t cancer!
December 2016
in December 2016, the scan results were not what I wanted to hear. The cancer had started growing in my lung lining, the same side as my original tumour. Fortunately, I had some tissue left from a previous biopsy so that was sent off for pdl1 testing right away.
As it was positive for pdl1 (less than 10%) I was able to have pembrolizumab. I started on this in January 2017.
A cough continued to worsen and in February I was feeling so bad with it, I went to see my gp. He sent me to oncology who had me immediately admitted to hospital. Apparently I had a pretty serious chest infection, unrelated to the cancer. I was given steroids, intravenous antibiotics and a nebuliser. I was feeling on top of the world and back home 2 days later. ( pretty good timing really as I got married two days after that to my partner of 32 years).
From then I continued having pembrolizumab every 3 weeks until January 2019 when the 2 years allowed on immunotherapy was up. Initially there was some reduction in the tumour size and from then on my tumours remained stable. Fortunately the only side effect was fatigue.
It will be 7 years in March since I was first diagnosed. My recent scan on 2 November shows I’m still stable.
I was pretty sure I wouldn't survive more than a year or two and if I did I would be bedridden. Luckily, I'm doing really well. I've had to slow down a lot due to breathing issues and damage to my spine, but on the whole I'm doing almost everything I used to, just doing it more slowly.
I feel as well as I did this time last year so no complaints there. My oncologist has told me there will be other treatment available to me when the tumours start growing again, most likely more chemo. Not the best treatment I could wish for but certainly better than nothing.
chemo & immunotherapy 
My brother
Surgery or not Surgery
My mum is newly Diagnosed
Breast cancer radiation as a long term cause of primary lung cancer?
