My Lung Cancer Story

Hi there. I was initially diagnosed with Lung Cancer Stage 4 by accident really. I have been an asthmatic since the age of 2 and was seen every six months by a Chest Consultant. Every year I was given a scan and there they spotted "IT" growing away.

Found then that I had spread to my liver/lymph nodes/pleura etc etc.

Had that first scary phone call on 23rd December 2013. Fouled up that Christmas I can tell you!!

Given 3-4 months to live!!

Had a disastrous CT Biopsy on 31st December that year. Collapsed lung and hemorrhage. Then into St Georges in Tooting London for a VATS talc pleurodesis procedure.

SO lucky then to be found to have EGFR mutations in my Cancer Growth.

Started on Gefitinib/Iressa as first line treatment. Side-effects awful for 4 months with boils/ulcers/dire rear/sickness etc. Really felt like giving up until my dear Oncologist recommended reducing the dosage to every other day ! WOW - I have been in love with him ever since I reckon ! Got a life back and stayed on this treatment until December 2016, when I had growth in my tumors. Found by EBUS (down the throat biopsy to lymph nodes) that my "mutant" lung cancer had mutated again to have T790M instead.

SO put onto a drug called Tagrisso/Osimertinib. This has been holding all but my "rogue" primary since then till now August 2018. Brilliant drug.

Just completed a week of just 3 treatments of SBTR radiotherapy to the "rogue". Hoping that by zapping it things will continue successfully.

Can only say I have been SO LUCKY !!! Okay - not by getting Lung Cancer- but by the faith I have put in my wonderful Oncologist and by his being so "on the ball" with treatments available.

I have managed to stay active and upbeat and now spend a lot of my time helping others through the Macmillan Community as a Community Champion. Also attend various Advisory Board meetings/seminars to speak on behalf of patients. Feel I have to give something back for all the help I've received over the past "almost" 5 years of living with Terminal Lung Cancer. So much for 3-4 months is all I can say.

Advice from me :- Keep learning - you are your own best advocate. Keep asking questions - it's your body and you need to know - information is power. Keep Kicking Cancer's As*.
Diz UK