Help develop NICE lung cancer guideline

[NICEGetInvolved]

Hi, I hope you don't mind me posting. NICE is looking for people who have received NHS treatment and care for lung cancer, and their loved ones, to help us update our lung cancer guideline. If you, or someone you know, may be interested in joining the committee please see this webpage: nice.org.uk/get-involved/jo... Many thanks, Erin

[mrsmummy]

Post approved by BLF.

[jjnanna]

I had my right lung removed 12 years ago this November ... Went to GPs for antibiotic script as was going abroad and always take as a precaution. She said she didn't like the sound of my wheeze so sent me for x.ray which went for 1 week later, within 2 days had phone call to say doc wanted to see me next day and they had already made appointment for hospital visit the following Monday which showed small specks on R lung. Had my holiday ... as did Consultant then first closed biopsy, no signs of it so open biopsy and freeze tests which resulted in R lung being removed totally.... Now all those years later have COPD .... but must say I have had a very good innings!!!!

[NICEGetInvolved in reply to jjnanna]

Many thanks for your comment. All the best, Erin

[girliegirl2012]

Don't know if the NICE team is looking for people from the US? Not sure if I would even qualify? But I would definitely be interested in something to help! I was dx'd in 2011 with NSCLC. I had left upper lobectomy and 4 rounds of Chemo-(Cisplatin & Alimta.) In 2015, had a recurrence in bottom of R lung. Because my COPD was so bad, surgery wasn't an option for R lung so I took 5 rounds of Steriotactic Radiation. Now here in 2017, it was just discovered last week, a new nodule, bottom of R lobe 1cm, then to have another CT Scan to see if it is growing in 3 months. If it is, and it turns out to be Adendocarcinoma as on two occasions, I believe I will see if my Oncologist can order me the drug Nivolumab for treatment. Surgery is not an option, Chemo is not an option because of CKD III and I don't know exactly how much radiation one can take. So,with all that said, if I can help in any way, please let me know. Thanks!

[NICEGetInvolved in reply to girliegirl2012]

Many thanks for your message. Unfortunately, we only involve people from the UK. I wish you all the best, Erin