After 20 months of endless campaigning to raise awareness for lung Cancer, I have finally got my slot on national TV.
I had written to Daybreak, Lorraine, This Morning etc, each several times and each time being told 'it's not something they are thinking of covering at the moment'. I did, however in November get a slot on Daybreak (via Roy Castle) for Lung Cancer Awareness month only to be cancelled 24 hours before and be replaced with a story on the return of the white stiletto heel!
Then low and behold yesterday I had a call from BBC Midlands Today to see if I would do a story It all stems from meeting a lady called Sandra during one of my fund raising events last year. Sandra has a friend who works for BBC Midlands today and told him my story. Today we filmed and on Thursday will be on TV! The story is the one I have been trying to get across since my diagnosis. 1/ Anyone can get lung cancer...There are more younger (under 50) non smoking women getting lung cancer than ever before. 2/ Lung cancer kills more women than breast, ovarian and cervical cancers combined. 3/ lung cancer is the biggest cancer killer yet gets less than 5% of research funding. 4/ It was only in 2007 (only 5 years ago) that they started recognising the different types of lung cancer and treating them accordingly with different drugs! That I am still amazed by. 5/ It had only been in that last couple of years that we have had the biological chemotherapy to treat people with the genetic mutations. I was one of the first to access the drug Iressa on the NHS. 6/ There is hope even when diagnosed at a late stage especially with the availability of new treatments.
Lung cancer is still predominantly caused by smoking however there are increasing numbers of people who have never smoked or who gave up years ago getting lung cancer, this is estimated to be around 60% of all new cases. Although a screening programme is being trialed it is only going to be for older (60 plus) heavy smokers who are deemed to be most at risk. I know they have to start somewhere but it seems to me that the non smokers are being discriminated against. Younger non smokers with Lung Cancer get a really rough deal as it seems that due to not smoking the usual investigations are often not done until many symptoms are present, as no one thinks it could be lung cancer. By the time it is diagnosed it is often at the advanced, inoperable, incurable stage, I am a prime example of this.
In my interview I am trying to show that with research and funding into treatment we can live longer than expected and live relatively normal productive lives. No 'smoking cessation' campaign is going to help people like me!W have never smoked. Nor is screening for early detection, we would not be considered 'at risk' ! The only chance we have is research and funding to help turn this 'death' sentence of a disease into a treatable one. The only way this will happen is to stop the stigma and hope that people see us like every other cancer patient.
Brilliant! I echo what Bill has said - well done. Our Outreach work in the community is trying really hard to inform people about the signs and symptoms of the disease which should enable earlier detection but this is a massive undertaking as you can imagine. Your appearance will help support all the hard work being done by all of us involved in Outreach so thank you very much. Best of luck - you will be great!
Joanna xx
Hi Lyn,
This is fantastic news. The public really need to hear what you have to say.
Often, statistics and research make dull reading, but hearing it from a real person, will make them sit up and listen.
Fantastic Lyn! Well done! Looking forward to seeing it x
Congratulations on getting on TV, just really disappointed that you had to play the gender card so strongly. From the Cancer Research stats:
Age Range Male Deaths Female Deaths
0 to 04 0 0
05 to 09 0 0
10 to 14 0 0
15 to 19 0 0
20 to 24 1 1
25 to 29 2 1
30 to 34 9 6
35 to 39 34 26
40 to 44 116 97
45 to 49 248 241
50 to 54 577 502
55 to 59 1,208 951
60 to 64 2,164 1,611
65 to 69 2,858 1,960
70 to 74 3,407 2,445
75 to 79 3,602 2,716
80 to 84 3,030 2,520
85+ 2,410 2,291
All Ages 19,665 15,369
Sorry, tried to delete my post above but couldn't. The point that I was trying to make was let's not muddy the waters here. The increased rate of lung cancer in women has been largely linked to their increase rates of smoking (though happy to be proved wrong) and is not due to a genetic factor.
Lets have a better stop smoking campaign for the first group and an inclusive campaign for the second group that doesn't alienate over half the people in it.
Just my thoughts as an under 40, never smoked person with incurable lung cancer.
in reply to
Maybe so, I also am a non/never smoker with incurable lung cancer. I have met many more non/never smoking women who have also got incurable lung cancer. No stop smoking campaigns are going to help any of us, you included. The only chance we have is research into treatments than can hopefully keep our disease stable, the only way we can get more research funding is support and stopping the stigma.
Hi Boomer, the things I mentioned are facts, the stats you have quoted are 5 years out of date (as are all published stats) lung cancer in females in rising and lung cancer in males is falling. The experts are now saying they are pretty much on par with each other and are predicted to change over completely within the next few years.
Women on the whole support breast cancer, I am trying to get them to look at the biggest threat to their lives which is lung cancer. Their support will help both male and female sufferers from lung cancer. I am doing everything I can to help all people with lung cancer it shouldn't matter how I achieve it, all will hopefully benefit.
Keep up the great work Lyn!!! We're all behind you every step of the way...xxx
As a 44 year old woman who has never smoked being diagnosed with Stage 4 incurable lung cancer was horrendous. I had no idea before this that a non smoker could get lung cancer. Any campaign you can do Linda is so very much worthwhile. Any support we can get will be beneficial, research is most definitely the way forward. x
Hi Lyn thanks for your response, as I said I'm happy to be proved otherwise, please provide credible links to the source documents.
I think there are 2 issues here:
The first is that the changes in overall lung cancer deaths are linked to changing smoking patterns (ie there is a correlation between the increase in the number of women smoking and the increased rates of lung cancer in women). Again, please provide credible links to show this is wrong.
The second is the pattern of lung cancer in those that have never smoked. As far as I can tell, and again Lyn please provide links to credible sources to prove me wrong, this has no significant gender bias. There are some variations, for example more Asian women have the EGFR mutation and the ALK mutation seems to be more prevalent in men, but these mutations are not the only ones at play.
I absolutely think that they should be treated as separate diseases, my life literally depends upon it, I just disagree we should be making a gender issue where non exists. The first issues should be addressed by getting people to stop smoking. The second requires an inclusive campaign, not a divisive campaign bases on false gender biases. Using Breast Cancer is just simply wrong, while they can get away with actively preventing men from participating on the grounds that it's overwhelmingly women that get Breast Cancer we can’t. By mixing your stats you are giving a false impression.
Again, I'm happy to be proved wrong. Please provide links to credible sources with the stats to back up your argument. Hiding behind "all published stats are out of date" simply isn't good enough, either you got your data from a credible source (in which case please share it) or you didn’t and are making it up. If you can't or won’t please stop pushing the gender issue, it damaging, divisive and just wrong.
Sorry, just to clarify please provide links to empirical data rather than personal anecdotal data. Just because you haven’t personally met many men who have never smoked but still have lung cancer doesn’t mean that we don’t exist. It may have more to do with the fact that we feel marginalised.
I am sorry that you feel the need to be so argumentative with someone who has for the last 20 months done everything I can to help ALL people with lung cancer.
Many of the things I have stated has been knowledge I have gained by attending study days where speakers have included leading pulmonary oncologists, thoracic medicine doctors and radiologists. Some of the information has been taken from their personal presentations of which I have been given and are not for sharing in a public forum.
Some key points from the thoracic consultants presentation:
85% of heavy smokers will not get lung cancer.
Mortality in men has declined over 20 yrs.
Mortality in women has risen in last 10 yrs.
Smoking sanctions have achieved a significant reduction in the prevalence of active smokers and lung cancer mortality in males, but not yet in females (Levi et al, 2003).
Many sites examine cancer incidence, mortality, and survival by site, sex, race/ethnicity, education, geographic area, and calendar year, as well as the proportionate contribution of selected sites to the overall trends. There is no getting away from it.
I have met men who don't smoke with lung cancer, but I have met more women. Everything I am trying to do here is to find hope and try and get the public to support us regardless of stigma, gender or race.
Hi Lyn,
I'm not trying to be argumentative, I just want some intellectual rigor and honesty.
Thanksyou for the links, I've had a quick look at them and will look more tonight. I am slightly worried that most of the lungcaner.about links seem to refer to data that is from the 2005-2007 timeframe, yet you attacked me for using the 2010 stats from the Cancer Research site.
As I said, I agree that lung cancer needs to be looked at differently for non-smokers, and the evidence is that that this is starting to happen. Where I fundamentally disagree is that this should be made into a gender issue.
I haven't attacked you. I stated that the stats are out of date, this refers to survival on different treatments, not the deaths as such. This has been told to me by every 'expert' I have spoken to. Most of those articles were written in 2012 with the published data/research that was available.
It seems to me that you are making a bigger point about gender than I. However, If you read the info it is stating that lung cancer in women is totally different to lung cancer in men anyway, so how can you get anyway from the gender issue. If by 'gender issue' you are referring to lung cancer killing more women than breast, ovarian and cervical cancers combined then you are criticizing other published data.
There are several different types of lung cancer with different causative factors each is now treated differently dependent to which type you have. This first started in 2007.
Do you do any campaigning to raise awareness? or to help others? Please stop criticising me.
Hi Lyn, congratulations on your hard work these past 20months to get your slot on t.v. As any information that can be gotten out there as got to help. Funding for research so that help for everyone! Smokers and non smokers alike! Hope I get a chance to see your slot.
Thank you for everything you have done for us with this disease. Xx Georgie
Hi Lyn,
I looked through the info and nowhere does it state that : "lung cancer in women is totally different to lung cancer in men". Further it also directly contradicts your statement that cancer rates are: "experts are now saying they are pretty much on par with each other":
The American Cancer Society's estimates for lung cancer in the United States for 2013 are:
About 228,190 new cases of lung cancer will be diagnosed (118,080 in men and 110,110 in women).
There will be an estimated 159,480 deaths from lung cancer (87,260 in men and 72,220 among women), accounting for about 27% of all cancer deaths.
I disagree that "lung cancer in women is totally different from lung cancer in men". Yes, there as some differences (as I've already said) but not enough to turn this into a gender issue. By pushing this line that lung cancer in women is totally different you risk alienating/further stigmatising men and diverting what little research money there is down the proverbial rabbit hole.
Again, if you can provide a link to a credible source (i.e. a peer reviewed research paper looking at the UK showing that lung cancer is totally different in women) please do.
Thank you for trying to destroy all the hard work I am doing to help others. I hope you are proud of yourself. I too am going through this and am fighting with a terminal illness. I have tried to address your questions to which you have not done me the courtesy. Perhaps you would like to post some hopefull good news stories on here that help others rather than critisise other people. There seems to be a theme to your posts none of them productive and all seem to come from someone with real issues.
I'm not trying to destroy what you are trying to do. I agree with you that much more research is required into lung cancer, particularly when there is no history of smoking.
I just disagree in the way you are trying to sell the message, by stating that it is a totally different disease in women and they should be a special case, you run the risk of alienating men and reinforcing the stigma that they are somehow responsible for their cancer. I would much prefer a more inclusive approach that includes all of us.
Don't be so ridiculous! I have said nothing of the sort. I think you are very selective in what you are reading. You still haven't had the courtesy to answer my questions?
But that's what you are implying.
Sorry, in answer to your questions yes, yes and no I don't want to post links to good news stories.
What is selective about your statement that: "lung cancer in women is totally different to lung cancer in men"?
That is a 'quote' from a Doctor. If you can't say anything postive then I think you should shut up.
Apart from the fact it's a bit dated (2004) and it only looks at US data it fine. It make a case that more women who never smoked get lung cancer, but they have better survival benefit and that female hormones may have a part to play in this; whilst recognising that it also kills lots of men.
It doesn't argue that it is a totally different disease or that it should be treated as such.
I suspect that we are never going to agree on this and we could go on like this for several more pages. I suggest we both agree to differ and draw stumps. In both of our cases life is literally too short.
your positive outlook and support for others is amazing.
ignore the negativity of individuals, they are not worth bothering with.
hope you are doing ok
much love
nancy and nana maureen
xxxxxx
Exactly , life is too short. Are we not all on the same side here in trying to support each other ? It doesn't seem the case with you Boomer, I find your comments towards Lyn to be rude and unhelpful to say the least . That is not what this forum is about .
Lyn, keep up the excellent work you have been doing despite your own health concerns, you have put so much time and effort into raising awareness while suffering from this dreadful disease . Your efforts are much appreciated .
Well done Lyn on ALL of your campaigning.....FOR EVERYONE! You have family and many friends who truly love you and are so proud of you for what you have done, are doing and are going through. You are truly inspirational.
Boomer, I feel sorry for you and hope you win your personal battle but I do think everyone here should be on the same side in creating awareness in any shape or form to help others. Awareness for any cancer or disease is necessary and I commend Lyn for doing this in such a positive and unselfish manner. X
I also want to thank you Lyn for your amazing work in raising awareness! If lung cancer can one day get the support, awareness and funding that breast cancer gets, then the future for lung cancer (for both women & men) will be much much brighter!
Don't to be brought down by having to answer negative comments. One of the most important things I've learnt on this journey is how incredibly powerful positivity and inspiring good stories are! That's a big part of the fight. Life's far too short to deal with comments like the above. And I say life's too short as a non cancer patient because none of us knows what the future holds. We all need to live life to the full and spread the positivity and awareness that you are sharing Lyn. Your appearance will have impacted more people than you realise. And may even have prompted someone to go to the doctor with a symptom that they may have been ignoring because they are a non smoker and so considered it impossible to have lung cancer.
Sadly I didn't get to see the tv appearance last night as it wasn't aired on the London tea time slot. But well done! Raise a glass this weekend to a very successful week
Mum (lynB) you are doing an amazing job, I am so very proud of you. Despite everything you are going through, you are still trying to help others. You are an inspiration to so many people, both men and women. Surely any positive news and awareness is good for the campaign for every man, women and child. You have already helped so many people and I'm certain your work will continue to do so. Please keep up the good work, you have many more people behind you than against you. xx
Boomer - I am so sorry that you have been diagnosed with lung cancer, its a terrible disease for everyone concerned. Please spare a though for people and their families who are going through the same. Being terminally ill is stressful enough with out people attacking and questioning everything that you do, especially when all you want to do is help other people! It would be so much easier and far less stressful to sit back and do nothing!!! Those who tirelessly campaign to help other should be commended not condemned. If you feel so strongly, why not do something positive yourself?? set up your own campain?? Surely that would be a better way to get your own message out there?? I feel sorry for you, I understand that you may be going through a tough time yourself, but please if you can't say anything nice, perhaps it is best not to say anything at all.
I myself am having to come to terms with my mums diagnosis, and reading your posts have been really upsetting to me. My mum is a wonderful person, who just wants to help, she would help you, if you let her! I would be so grateful if you would be respectful enough to not cause us any more distress. People are more than happy to support and help you in this forum should you need it, please don't attack those willing to help, that helps no-one.
It appears that interpretation and sourcing of statistics has caused some differences of opinion here. We would not like this issue to obscure the positive work that has been done by Lyn to raise the profile of those diagnosed with lung cancer who differ from the typical profile. There are guidelines for posting on the site. We would ask all users to follow and respect these.
As a Doctor who works in this field... I am very concerned that some of this thread has been made very personal against Boomer- he challenged Lyn- that is all, he challenged her for the credibility of what she said and then she did the same to him. It was indeed her, who took, this to a personal level- I am actually very saddend by that. You, like me, know nothing about Boomer, and what he does, so asking if he helps people I thought was especially unpleasant and terribly judgemental.
I used to tell my patients to come here, I also always tell them to challenge people on what they are told from what I can see Boomer did just that, thats all, nothing more nothing less.
Lyn keep up your good work, but people here give Boomer a break too,although I have indeed tried to find Boomer on here this morning, but it seems he has deactivated his account..he did nothing wrong, but has obviously felt the need to leave.
DoctorH, I think you have misread / misconstrued my previous post, I was not asking Bloomer if he had helped other people nor was I trying to judge him. I was merely suggesting that if he feels passionately about a subject surely the energy is better channelled into something positive.... This is a positive forum that is here to support people and as I mentioned in my post, the group was here to help Boomer, should he let them.
My mum has tirelessly campaigned to help people like Bloomer, she has set up many different support groups, fundraising, spent countless hours researching different treatments, disseminating information and all to help others and give them the hope, that they need, to carry on every day. She has touched many lives and helped so many people, despite battling this terrible ilness herself, its a shame that people don't seem to appreciate that. Lung cancer needs as much publicity as possible to help raise awareness, gain funding and help people get treated. Any publicity for the cause is good, surely as a Doctor of this field, you would agree?
It appears that my mum has now also deactivated her account, which is a real shame, especially for those who have been helped and supported through her posts.
I would like to personally thank those that have supported her, I am saddened that she has felt the need to leave. There will be many people who will miss her support.
Hi.Lyn Just seen you on TV.I was away and John taped it for me.Very positive contribution,sorry you have been having some adverse comments.Your research and positive communication has helped me and obviously many other cancer sufferers to keep going . Keep up the good work.By the way you are looking really well."keep taking the tablets"
This is so true we have to change public perception that it is self inflicted. Recent adverts on TV, whilst I appreciate it is hopefully making people think twice about smoking, also perpetuates the belief that only smokers get Lung Cancer. Adverts need to be more inclusive all Lung Cancer victims
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It all stems from meeting a lady called Sandra during one of my fund raising events last year. Sandra has a friend who works for BBC Midlands today and told him my story. Today we filmed and on Thursday will be on TV! The story is the one I have been trying to get across since my diagnosis. 1/ Anyone can get lung cancer...There are more younger (under 50) non smoking women getting lung cancer than ever before. 2/ Lung cancer kills more women than breast, ovarian and cervical cancers combined. 3/ lung cancer is the biggest cancer killer yet gets less than 5% of research funding. 4/ It was only in 2007 (only 5 years ago) that they started recognising the different types of lung cancer and treating them accordingly with different drugs! That I am still amazed by. 5/ It had only been in that last couple of years that we have had the biological chemotherapy to treat people with the genetic mutations. I was one of the first to access the drug Iressa on the NHS. 6/ There is hope even when diagnosed at a late stage especially with the availability of new treatments. 
I'm a 10 year survivor...
Thank God ive found you.
I'm new and so scared
lung cancer - please help 
