There are over 300,00 people in America with LC who have lived well beyond the 5 year range; Over 220,000 who have lived beyond the 10 year range but no information about people who never had a recurrence after their initial treatment but it is estimated to exceed 25,000 people.
Yet, why do we not read these stats when we research “this” issue on the internet or elsewhere? It is because only a handful of groups/people keep stats on real survival rates versus hundreds who keep track of non-survival.
I made an issue of this in a letter to the American Cancer Society and asked why they do not keep such records. The answer I got back was that they are aware of this level of survival but they put the blame on health care providers who they rely on for their stats and that health care providers have not always reported their experience with patients who have survived.
Again the ACS admits that the stats we see today are actually 10 years behind the times and that survival rates have picked up greatly since 2003 and such should be reflected in future reports on survival.
I make issue of this because I believe most of us are not up-to-date on the real figures just the older ones that lead to a picture of gloom and doom.
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LC SURVIVAL RATE MUCH HIGHER THAN BELIEVED
- By jrrees2006
- Posted June 22, 2008 at 9:34 pm · 38 replies
- In Survivor stories
- Shared with the public
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38 replies
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- By MOM20CATS
- Posted June 22, 2008 at 9:46 pm
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Now Jonathan, I don't want you to think I don't trust you but can you tell me where you got your stats from so I can also read them? Best..............................MC
- By jrrees2006
- Posted June 22, 2008 at 11:19 pm
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Mom,
I initially asked the ACS what was the current rate of survival and then they had some oncology nurse call about a week later with those figures I spoke of. I then asked a lot of questions why the public does not have that info and more. She said she had to get back with me after doing some research. Two weeks passed by when another oncology nurse called back and stated that these numbers come from various sources that they have been given.
This did not answer my question as I was unable to ask for some written confirmation. She assured me that the figures were pretty close to accurate based upon people who have been diagnosed with LC from 1985 and who are still around.
Again, I was taking the ACS for their word eventhough it admitted that their stats are 10 years behind the times.
So I then called to the NCI and spoke with two person involved if you would call it public relations and they said the figures I got from the ACS were accurate when considering that from 1985-2005 that there has been over 3,200,000 diagnosed cases of LC in the USA whereby 200k to 300k survivors is not beyond the norm.
Again I asked where could I find this in writing and was told not sure but it was on some information sheet they have to feed the public.
These figures seemed reasonable to me without doubt, but my concern has been over why WE the people have not been informed but we are quickly informed of the numbers of people who don't win the battle which I felt is cruel and denies hope.
- By lisalulu
- Posted June 23, 2008 at 12:00 am
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You are correct they are behind over 10 years behind or more I have heard that before too... I think LC doesn't have the $$$$$$ as Brest cancer does so we are just on the back burner.. with all the doom and gloom records that you can only find on the internet.. but I know of at least 4-5 people who have lived 20 + years with one lung so they had LC.. anyway its all what you believe too... God Bless you..
Lisa
- By deborahmaree
- Posted June 23, 2008 at 4:16 am
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If it helps my step father is alive 20 years after having a lung removed to cancer it was caught at an early stage but, theres hope there for everyone
- By candifleming
- Posted June 23, 2008 at 7:45 am
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Wonderful news to hear..Started my day off with hope. Thank you..
- By jerseydebbie
- Posted June 23, 2008 at 8:08 am
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I whole-heartedly agree.
Our primary physican has told me not to look at the stats on the computer or elsewhere.
With today's advance in medicine and treatment, people are living much longer after a cancer diagnosis. Plus, everyone responds differently to treatment.
My aunt is a 5-year LC survivor. She either had a lobectomy or wedge resection. She is not sure which.
Did not need any radiation or chemo.
We have a client who is a 5-year survivor as well. Had his entire lung removed due to LC, with no radiation or chemo.
Another client is on his second year after having a lobe removed due to LC.
Stats are just that, stats!
- By gsjelibean
- Posted June 23, 2008 at 10:07 am
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Johnathan,
Stats is not what gives us hope. I have Stage IV non-small cell lung cancer. My mother had a lung removed in 1958 and lived another 47 years. She always said none of die before our time, only God knows when that is,
Here's also a quote by Eleanor Roosevelt, that has become a inspiration to me: Yesterday is history, tomorrow is a mystery, and today is a gift; that's why they call it the present."
- By SusanK2
- Posted June 23, 2008 at 10:32 am
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Hi, Jonathan,
Thanks for searching out those stats. They confirm what I have believed since I myself started outsurviving the statistics. Now, when I say that the numbers are finally changing - albeit much too slowly -I have your numbers to back it up.
BTW - I like your new avatar - it has a nice warmth.
Susan
- By gpawelski
- Posted June 23, 2008 at 12:43 pm
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Looking at a number of the above responses reminds me, whoever has been cured of cancer, began with an operation.
- By gdhogan
- Posted June 23, 2008 at 2:46 pm
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according to what my Dr. told my family I could have been dead 4-6 months AGO!!
but with agressive chemo and radiation I have been NED for over 4 months!!!!!!!!!!
Those are numbers............I am a life.....being continued daily!!!!!!!!!!
Everyone wants stats when they are diag. I know I did. But what we need is hope and support and resources to continue out fight for life.
Best to all of us.
- By fumesy
- Posted June 23, 2008 at 6:56 pm
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Johnathan, thanks for this post, I kind of new it but never found the stats on line. One thing I noticed in my journey as I was going for treatments, that many other patients and most with LC never smoked and were not brought up in second hand smoke at home or at work.
I smoked, but also worked in either asbestos or polluted air environments, begining with my Navy years and later working at the Holland, Lincoln Tunnel, and Newark Airport. One stat I've heard is that 20% of smokers will get LC. Long story short, if you run across what percentage of LC patients never smoked, that could help dispell that it's a smokers disease and possibly open funding for this stero typed cancer, please let us know. I cannot find this stat. No doubt, smoking enhances the chance of contracting LC, what about the non smokers, if the public really knew, maybe research funds would be greater to eradicate this. Or do the Powers that be prefer the current view of smokers as lepers.
- By jrrees2006
- Posted June 23, 2008 at 7:07 pm
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Fumesy,
I believe that 1 of every 6 LC cases today are non-smokers.
- By BECKY1
- Posted June 23, 2008 at 7:43 pm
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Thank you Johnathan
That was very inpiring. I think attitude is half the battle.
If we lay around and act sick, sick is what we will be.
If we try, live life to our fullest, then that to is what we will reap. I m glad that someone brings up the positive end of statistics. I know when I was diagnosed, stage 3A, ;hope for myself, was just a glimpse. Dont get me wrong, I still have my days when I wonder, but for the most part, I look at evey day just like Eleanor. When I see my grandkids smile, when I take a walk, when I experience something new, when I sing at church, ( with one lung) I know that nothing is impossible. Sometimes just unthinkable.
God Bless you Sir.
Health and Happiness
Becky
- By kikiverobeach
- Posted June 24, 2008 at 7:46 am
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Thanks for the positive post. I love reading something that gives me hope. I do believe you are right, we only hear about the bad stats because those are the ones that are used to determine funding etc. Also we are way behind on our calculations here.
Thanks again for posting this.
love kiki
- By Chum
- Posted June 24, 2008 at 9:34 am
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The statistics I heard about non-smokers/no longer smokers is that "only" 40% of those who are diagnosed with lung cancer are current smokers. I also read that 15% of smokers will get lung cancer. Sloan-Kettering has a "risk assessment" calculator on its site. You can plug in lots of information and out pops the chance that you will get lung cancer. You can figure out how many cigarettes you need to smoke to double your chances, etc. But if is of little use to those of us who know, for sure, that they have a 100% chance of getting lung cancer... because we already did.
As to why the statistics are ten years out of date - not sure they are. Let's say we wanted to find out how many long term survivors there are - not five years - but ten or twenty years. Well, we would have to start at least ten or twenty years previously. We couldn't count anyone who got the disease less than ten years ago as a "ten-year survivor" because ten years had not elapsed. It's much easier to get one-year, two-year and even five-year rates, and studies are published all the time about small groups of people who had one form of treatment or another and lived one-year, two-years, and/or five years. What larger, more definitive results need are people interested in gathering all of these studies together into a meta-study... or "mining" the NIH and other data bases. It probably happens every five or ten years - like the census.
Lots of things are "out of date," statistics wise. Most of the data on height and weight of babies is based on data that is twenty years behind. Our actuarial stats that they use to establish insurance rates are hopelessly out of date (probably to keep the rates high).
But the organizations/people most interested in finding out long-term survival are "on it." The makers of all sorts of treatments are extremely interested in the long-term survival of people using their particular drug. If you are interested in survival rats, check with the makers of Tarceva, Iressa, Avastin, etc. Course you will have to wait for a few years to find out the long-term survival, because many of those drugs have not been around ten years. But wait for six years or so and then ask Jamie, our Tarceva poster girl, what the long-term survival rates are for her and the others blessed with a great response to Tarceva.
Courage
Chum
- By gpawelski
- Posted June 24, 2008 at 10:49 am
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Proof of efficacy of a cancer treatment such as chemotherapy requires a randomized trial in which it has been shown that the group treated with chemotherapy experienced significantly increased survival when compared to that of an untreated group. This has never been done.
Most claims for the efficacy of a chemotherapeutic agent comes from trials showing shrinkage of tumors or from comparison of survival rates of unmatched groups over time. Unless tumor shrinkage is accompanied by evidence of increased survival, the treatment cannot be claimed to be effective.
Additionally, in clinical trials, many patients are excluded because they could not complete the rather arduous treatment. So randomized comparisons are of healthier treated patients against all the controls, rendering a lot a trials flawed.
- By Ed1
- Posted June 24, 2008 at 11:04 am
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I must add my 2 cents worth to this.
1st the great ACS who is very anti lung cancer and the NCI who gets most if not all of their stats from ACS. The reason ACS is 10 yrs behind is because the NCI is 10 yrs behind.
Sorry about putting a damper on this great debate but does anybody want to buy a Bridge Cheap?????
OK lets say there are 22K survivors. The greatest majority are early detection (One tumor one lung) We know the survial rate is better if detected early. BUT, The BIG BUT... the majority are late stage and we know current accurate stats is 84% die withing the 1st year. The life expectancy as hardly changed in 40yrs.
Does it help to kid ourselves and hunt down #s that we like....Last week we had a private presentation from ACS Sr. VP and let me tell you. Lung Cancer is NOT on their Radar....They dodged questions about lung cancer like rabbit running for its life.
Things are slowly changing but with NO help from ACS and little the NCI. NCI is getting better thanks to Lung Cancer Alliance but still has no opened its pocket book to lung cancer that even resembles Breast or Prostate monies. As a note the CDC never gives a single $$$ to lung cancer and yet give hundreds of millions to other cancers. Without HUGE amounts of cash NOTHING can or will change.
If you like the survival STATS then please enjoy them. Thats OK...Unfortunately it will not help you if you are late stage.
The real world is 5yrs = 15 % survival and 84% die within the 1st yr. of diagnosis. to these people the few, Yes, the few who exceed or beat the odds do not show up on the radar.In order for me to stay alive I need to be a realist.I do not know about anybody else.
- By amymaura
- Posted June 24, 2008 at 1:49 pm
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Hi Jonathan, and everyone else.
Just a word on stats, I'm told my my colleague, Sheila, of the following:
NCI produces cancer data through SEER, which stands for Surveillance, Epidemiology and End Results. ACS and other organizations get their data from SEER.
For stats on all cancers, this is the home page:
http://seer.cancer.gov/
For stats on lung cancer:
http://seer.cancer.gov/statfacts/html/lungb.html?statfacts_page=lungb.html& x=13&y=15
So it looks like the stats actually are a little more up to date.
Regarding people who don't have recurrences, if you think about it, it's actually much harder to track, because if a person (regardless of the disease) makes it to 10 years, they are often not seeing a doctor much anymore. Recurrence-free survival is MUCH harder to track than recurrences. Those people just aren't in the system anymore. If you think about it, we go to doctors when we are sick, and docs are pretty overloaded in caring for people who are sick. Why would they spend the time trying to follow the healthy?
(I say that sort of tongue-in-cheek because I'm a public health person and PH people think that there's often not enough attention paid to people who aren't actively sick, as in prevention or education and awareness raising, for example)
It's similar to this community, if you think about it.
I would encourage anyone who is interested to check out the SEER stats. But please keep in mind that there are a LOT of variables that are NOT illustrated but are relevant in whether a person survives illness or not. This is a very general picture. Please don't take these (not very nice) statistics and assume you or your loved one must fall into them, but definitely use the stats to fire you up and fight to gain more support for lung cancer!
- By jr1
- Posted June 24, 2008 at 9:53 pm
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I don't like being told by Ed1 that if you are late stage cancer the statistics won't help you! It sounds like you are giving us a death sentence - we don't need that.
- By jrrees2006
- Posted June 24, 2008 at 11:08 pm
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JR1 while Ed1 utters words that may hit home, he is not that far off base.
As a LC survivor and health care administrator, my doctors curse the ACS, NCI and CDC because of their apathy towards LC and unwillingness to open the purse from the total funds given to cancer research and treatments.
It is not so much that the ACS, NCI or CDC does not care but LC survivors don't have enough lobbyists fighting for that big pie before it is cut up.
Why do you think Breast Cancer gets so much money? Well look at how many people are hounding for that money. Just like the Gay Community hounded hard for money and got it, LC survivors need more voices and better lobbyists.
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