Perhaps you've noticed. My activity on this treasured Forum has declined. Folks have inquired. I've been hesitant to respond; perhaps my faith and hope that things might be different caused a lack of candor. I'm nearing 20 years of surviving Stage IIIB diagnosed, Stage IV progressed squamous cell non-small cell lung cancer. Longevity after diagnosis in my day is a miracle. Thankfully it is much more commonplace today.
No, I don't have a lung cancer recurrence. I'm cancer-free as far as I know. My annual oncology consult with low-dose CT is in September but I'm not concerned. My daily trial is pain. I've had chronic pain from taxol (burning toes sometimes called taxol toes) and a constant throbbing at my open thoracotomy incision site. Eighteen taxol infusions have left their mark; three open thoracotomies in the span of 7 months are the painful surgical side effects. Now nearing 73 years of life, 2 Army injuries have joined my parade: herniated disks in my neck and lower back. Moreover, muscle cramping, another taxol-induced problem causing low magnesium in my bloodstream, is worsening. I'm not sleeping, at least not having restful sleep. And yes, my physicians have tried every sleep remedy. My GP is still trying.
In a recent consult with my GP, he advised that I not seek surgical care for my herniated disks. He is concerned about my pulmonary insufficiency, and I'm waiting for my pulmonologist's view. Of course, the orthopedic surgeon counsels little risk. But surgeons are surgeons. My neck and back may be correctable, but I might not survive the surgery. My GP also wants me to ask the pulmonologist about O2, 24/7. I'm currently using O2 at night (attempting to sleep), but 24/7 tethered to a leash would be a new chapter in my life.
I check the Forum every day and thankfully we have a team of folks who welcome and provide meaningful suggestions and support. I'll be in the wings cheering all on from the sideline. As always...
Stay the course.
Tom
This is a blog about lung cancer survival statistics
One of the first instincts that kicks in for almost all of us who have been devastated with a (lung) cancer diagnosis is to ask how long have we left to live. Any web search for survival rates returns dismal statistics and it is hard not to panic or at least get quite demoralized. When I told friends about my recent incidental diagnosis, one of them responded with utter shock but added “oh listen, my sister was given 3 months but lived 4 years” (I believe her sister had breast cancer). I am sure she meant well and was basing her comment on what Googling lung cancer survival returns so was trying to make me feel better. I was stunned and did not know how to react to her comment about being given 3 months etc, after all my kid is 6 years old and as much as me living any day now is a blessing, 4 years is still a horrifically short time for a 49 year old mom to have left with her family.
With my initial panic and despair easing a bit now, a month after my lobectomy, and 2 months after that nodule was captured in an incidental scan, I started reading a bit more about lung cancer, including statistics. In this post, I will try to parse what some of the survival statistics and their differences. If you simply want a summary and no detail, you can stop reading here and jump to the summary!
I wondered about the subtle but important differences in survival rate definitions after reading a blog post by our forum’s Tom Galli about lung cancer statistics. Tom happened to mention that the cause of death was not factored into the commonly cited survival rates. That assertion very much surprised me since, at least for lung cancer, the average age of diagnosis is around 70 so there is likely to be quite a bit competing causes of death that I would have expected survival statistics to take into account: e.g., did the lung cancer patient also have heart disease and died of a heart attack? vascular disease and died of a stroke? This prompted me to take a deeper look into what exactly is being reported as survival rates. Before getting into some of those, a disclaimer that all 5- and 10-year survival statistics for lung cancer are (by definition) out of date so do not reflect the reality of the last few years. This is very important since lung cancer treatment has dramatically changed/improved over the last few years. Therefore, as you read some of the material cited below, keep in mind that these numbers are OLD and thus may not be as relevant to us patients living with lung cancer in 2022.
Different cancer survival statistics exist [Ref. 1] . Some are best suited for research and policy while other are better for prognosis and clinical decision making. For simplicity, I will list 3 such measures:
Overall survival: Ratio of (the number of lung cancer patients who remain alive 5 years after diagnosis) to (the number of lung cancer patients). Some also call this the all-cause survival, observed survival or crude survival.
Relative survival: Ratio of (the overall survival of lung cancer patients) to (the overall survival for similar but cancer-free population, matched by age, sex and race).
Cause-specific survival: Ratio of (the number of lung cancer patients who are not dead from their lung cancer 5 years after diagnosis) to (the number of lung cancer patients).
I had assumed 3 (cause-specific survival) is what is always being quoted in statistics but quickly learned that this is not the case. In fact some report 1 (overall survival) though most report 2 (relative survival) but almost no one reports 3 (cause-specific survival).
Relative survival can be overestimated, e.g., when a healthy screened effect exists, as was demonstrated in the Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial, where participants in this screening trial had 30%–50% lower mortality rates for heart disease, injury, and kidney disease than expected.
Relative survival can also be underestimated, e.g., smoker lung cancer patients typically have lower life expectancy than the general population because they have higher risks of death from many other cancers, as well as from heart disease.
For prognosis, one would need a survival measure of the net effect of a lung cancer diagnosis, in other words, the chance of surviving assuming the lung cancer was the only possible cause of death. This is very hard to measure. Cause of death is often not accurately captured. Even if it was, the question is, will that matter much in terms of end result? Turns out the answer is not quite simple: It may matter for some cancers but not much for other cancers. A Nature paper studied this very question by including competing causes of death and reporting the 10-year cause-specific vs. relative survival for lung, breast, prostate, ovary, oesophagus and colorectal cancers [Ref. 2]. I highlight a few findings from this study:
Though relative survival is usually preferable to use, for some cancers (like lung and prostate cancer), relative survival is inaccurate.
For cancers of the lung, relative survival was lower than cause-specific survival. In fact, for all cancers except breast and prostate, relative survival was lower than cause-specific with particularly large differences observed for lung cancer, ovarian cancer and colorectal cancer.
For lung cancer, when the population hazard was inflated for smoking, survival estimates were increased (since smoking is a strong confounder for survival from all causes).
Error between the 2 survival measures vary for lung cancer, say for 45-54 year olds, cause-specific survival was 25% higher than relative survival. Note that this was not stratified for stage etc so hard to really use for personal prognosis.
Solutions to such error/discrepancy may include adding other demographic variables than age and sex, and to stratify relative survival calculation by cause of death.
Summary:
Currently cited lung cancer survival numbers are outdated. They do not include the years that saw dramatic improvements in how lung cancer has been more effectively treated with new therapies.
Relative survival rate is commonly reported. These statistics do not take into account for actual cause of death. For lung cancer, this was shown to lower actual survival rate measures below what they really are.
With the above caveats, if you still want to check/consider/use available (old) survival numbers, make sure to at least look at statistics relevant to you, e.g., find the rates related to your own age, stage, sex, cancer sub-type, smoking history etc.
Lung cancer is still terrible and has much worse survival by any measure than say breast cancer but we are individuals so medians and means do not represent us as individual patients. Currently little is known as to where we are on the patient distribution curve, are we to the left or the right of the mean, by how much, we don't know yet.
I personally found this SEER Explorer App useful (SEER is the Surveillance, Epidemiology, and End Results Program, which provides information on cancer statistics) [Ref. 3]. You can look up some stratified numbers, including 5-year survival and conditional survival (conditioned on the patient having already survived 0, 1, 3, or 5 years since the cancer diagnosis). Remember, even there, the numbers are old (covering years 2012-2018) and some criteria is missing, say smoking history.
Tom ends his messages with: stay the course.
I am ending my blog with: don’t live as a statistic (admittedly, I am still trying to abide by that).
My name is Eleanor
I have cancer, but it is not who I am.
I am not a number or the result of a
lab test.
My name is Eleanor
I am a baby at my mothers breast.
I am a toddler being thrown high in
the air by my father and giggling.
I am a young girl playing with my
dolls and my trucks.
I am a teenage girl going on my
first date full of nervous anticipation.
I am graduating high school and
trying to figure out what next.
I am a young woman walking down
the aisle with the love of my life.
I am an employee and a homemaker
I am a new mother.
I love my family, my friends, roses, cooking
and reading.
I love watching sappy old movies and
going through a box of tissues while
munching on popcorn.
I love to dance and sing.
I am a woman, a wife, a mother, a sister,
a granddaughter,a niece, an aunt, I am
a grandmother and a great grandmother.
I am all of these things and more but what
I am not is a disease.
I have cancer and it may destroy my body
but it cannot touch my spirit or my soul.
So you see although my body may have cancer it does
not have me.
My name is Eleanor.
NikoleV reacted to Tom Galli for a blog entry, A New Chapter
