The Roy Castle Lung Cancer Foundation
3,148 members1,788 posts

Update from lung cancer study day and other things :)

Not written a post myself for a while although I always try to answer other posts and give some hope to others in a similar position to myself.

I have had a very busy few weeks since coming back from the USA. We now have our support group up and running, our first 'official' meeting in 26th October. For anyone attending the Roy Castle supporters meeting 10th October,Nicky, my life long friend and my lung cancer nurse (we did our nurse training together over 20 years ago) and myself will be presenting how we went about setting it up. Which reminds me I have another presentation to write!

I attended a study day entitled 'Lung Cancer, a brighter future!' on Friday just gone. I was asked to present on 'A patients perspective'. I asked if I could attend the whole day as I thought it would be very interesting to hear what the 'experts' had to say. The other speakers included a Thoracic Medicine Consultant, a Cardiothorasic surgeon, a Medical Oncologist, a Radiologist, a Respiratory Medicine consultant, Solicitors and a Palliative Care Consultant.

I won't go into detail about each speaker (if anyone wants to know more please get in touch) I'll just cover the bits that stood out. The Thorasic Consultant started by showing how the 'trend' for lung cancer had not changed in over 30 years where all the other cancers were showing improvement. The figures however are always 5 years behind 'now' . Still very daunting though. It does get better though so keep reading....The surgeon showed how things are starting to change. He showed how patients who were deemed in the past to be 'inoperable' were being given a chance of surgery which incidentally is really the only true way of complete 'cure'. He showed how what sometime shows on a scan is different when the patient is opened up! He for one is now performing surgery on patients who in the past wouldn't have been given a chance. I was one of those patients, (unfortunately I was inoperable as when opened up my tumour had layed down seedlings throughout my lung something that didn't show up on the CT scan). So with more people being given that chance, we will see future 'stats' changing.

Th next speaker, the radiologist showed x rays and CT scans and PET scans. This was an eye opener. She showed how tumours can be missed on a routine chest Xray! and it is up to the referring DR (usually the GP) to look at the symptoms and order further tests. She showed how something that looked like 'tumour' on a CT scan turned out not to be and how normal looking lymph nodes on a CT were showing as 'Hot Spots' on a PET scan and therefore being cancerous. So it seems to me that we are in the hands of those ordering the tests and how thorough they want to be. Not just looking at scan/xray results but looking at every aspect of the symptoms we have and how we are presenting!

The Respiratory Consultant showed a 'flow chart' showing what to do with patients presenting with any of the symptoms of lung cancer. You know the chart that says things like: persistent cough...if answer yes go to next question....This however, in my opinion, should only be used as a guide, not set in stone as this I fear is why they took 15 months to diagnose me! Yes. I presented with a persistent cough but next question, was I a smoker? No. Was I over 60? No...What did it say to do with me... answer....OBSERVE! If I had been a 65 year old, smoking man I may have been diagnosed 12 months earlier according to the 'Flo chart'!

The Medical Oncologist's presentation was pure delight! He told how Its has only been since 2007 that differentiating the different types of cancers and giving different combinations of chemotherapy started to happen! This shocked me. Only then have they seen an increase in survival. What works well for Squamous doesn't work well for Adenocarcinoma and visa versa. It was only in 2009 a that biological therapies like Iressa and Tarceva were being looked at to treat stage 4, that's only 3 tears ago. They are seeing remarkable increases in survival. None of this will show up in any 'stats' for at least another 2-3 years! The big difference will show in 3- 4 years as these drugs have only been licensed for 2 years.He also said that if a biological therapy works for someone (I'm one of them) it works well. We know that eventually these drugs will become resistant so what next? Well, he said if a course of traditional chemo is given not only does it 'work' but it seems to re set things so that another biological agent can then be introduced. The one they are looking at is 'Afatinib' not licensed yet but its coming!!

I'm going to write a separate blog about my presentation, I will say though that it did make people think and I hope the GP's who attended took note!

7 Replies

Hi Lyn

You're working hard! Hope you have time to go to Birmingham next week!! :)

Bill x


Hi Bill,

yes I'll be there Nicky (my lung cancer nurse and life long friend) are presenting there!

Looking forward to meeting you X


Me too. :) x


Hi Lyn can you give me any detail of your support group meeting on the 26th Oct.Would love to attend if distance allows x


Yes Of course! Are you close to Stafford? It is being help at the Post graduate medical centre at Stafford General hospital, Weston Road, Stafford ST16 3SA. Parking there is free. It is from 10 until 12. The speaker on that day is talking about benefits and what patients may be entitled to claim. Unfortunately, I won't be there as I'm on holiday. May see you another time though if its not too far X


Hi Lyn thanks for the details I will try to attend if I can get a lift.Enjoy your holiday x


Thank you Lyn, an interesting read!


You may also like...