LilyMir

Your mom is so young. Younger patients tolerate treatment well usually. Treatment can put many stage 4 people in remission, some for long term. Is there a medical reason to give up? What do her doctors say? Did targeted therapy fail? Did she try immunotherapy? Radiation? Many options for treatment that can be effective. Stay positive and keep hoping for a good outcome, it is possible!

I don't know about other mutations Kelvin, but targeted therapy for EGFR +ve patients (which your mom may/likely? to have) has been approved as adjuvant therapy recently. Reason is that trials showed massive reduction of recurrence and death risk (something like 80%, compare with 5-15% for chemo). This is why I was told I should go on Tagrisso after surgery+chemo with possible radiation in between. No medication works for everyone though. More info here (reads like advertising but it reports exact study, results and risks): https://www.tagrisso.com/after-surgery/about-tagrisso/clinical-trial-results.html. Info for Targeted therapy is not only good for one year, no one knows how a patient will react as I understood, but seems most patients (not all) benefit a lot but then develop resistance to it after some time. Scientists are starting to say this may be due to the cancer mutating and the target therapy not being a match anymore. I am hearing that they probably will try combined medications that cover multiple mutations or do new biopsies to find a better match. This is all so very recent so let us hope scientists do massive strides in new medications very soon!

Thanks Justin! I am terrified to be honest but it seems not everyone has the horrors of chemo one keeps hearing about. I am so glad your experience was not that bad. They told me my hair won't fall out, I hope so, with long curly black hair, my kid will be quite scared if I suddenly became bald! I will prepare him just in case. They said mainly fatigue, and possible reaction that may happen with cisplatin in which case we switch to another one. However their leaflet had a lot of other symptoms from nausea, blood issues to watch out for stroke, heart issues etc so I got rather spooked. I guess reading the pamphlet of any medication, even Advil or Tylenol, would spook me too so hoping it will be not too hard of a chemo Summer!

Hi Gautham, Awesome that your daughter got her health back! So sorry you have to deal with this disease now but glad you are here for support. I too recently found about my lung cancer incidentally, in fact they missed telling me for years despite it being caught back in 2018 on a scan by chance. I felt/feel all sorts of emotions from maddening anger to deep sadness but learning fast to stick to hope. There are many long time survivors here so I try to just focus on trying to be one of them. Your young age means you have better chances to do well so focus on that. Believe me I know the anguish, I have a 6 year old and cannot help panicking at times but I pull myself back to hope since I cannot live with despair. I worked so hard for so long and was just starting to enjoy life when I was diagnosed so it felt like life was giving me a slap on the face and I was stunned. I try to now focus on how lucky I am to have caught the disease before it became worse, received treatment, have family support, and found new friends who understand what I am going through on this forum. Hope your treatment gets you to NED soon! Treatments for lung cancer advanced over the past 5 years more than it did the 50 years prior. Stick to hope.

Hi everyone, Has anyone had a Cisplatin and Vinorelbine (Navelbine®) chemo protocol? I am wondering how tough the coming 3 months (four 21-day cycles) might be! Thanks for sharing your experience, if any.

Fingers tightly crossed Justin, hope you get the best possible news! How terrible of them to delay such crucial news so long. I always found these bureaucratic delays completely inhumane.

I am new here but managed to submit my first blog. If you are interested to read about lung cancer statistics, you might find it useful, I hope. Facts are stubborn things, but statistics are pliable: A blog about lung cancer survival statistics. Thanks Tom Galli for encouraging me to post this!

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). [Ref. 1] . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4829054/ [Ref. 2]. https://www.nature.com/articles/s41416-020-0739-4 [Ref. 3]. https://seer.cancer.gov/statistics-network/explorer/application.html?site=612&data_type=4&graph_type=5&compareBy=age_range&chk_age_range_122=122&series=9&sex=1&race=2&stage=105&advopt_precision=1&advopt_show_ci=on&advopt_display=2

I am new to this disease but from all my reading, cure is not a term that many will use. People aim for NED (no evidence of disease) and long term survival/remission. I have read about cases diagnosed very early progressing badly and advanced cases responding so well to treatment defying terrible statistics so this disease seems hard to predict. They told me I have stage 3b after saying stage 1 then stage 2. I had surgery and they said it was "curative". However, pathology finding a much larger tumour than what both PET and CT imaging measured makes me very weary of the limitations of imaging (let alone microscopic occult cancer). Also, despite clear margins, I had one node positive which complicates matters and is considered bad news. A number of medical professionals continue to tell me my cancer is still curable but I don't like to think that way anymore as I cannot take another shock. I hope I will have NED and will remain vigilant forever if I survive. Keep thinking positive (I struggle with that) as no one on earth can tell us, patients, what will actually happen. Each body is different, each cancer is different and each response to each medication is different. I am hoping for the best outcome and praying to be on the surviving side.

Hi Maritza, I am a newbie too and my kid is only 6 so feel your worry. I had a lobectomy and await genetic testing to inform my adjuvant chemo/targeted therapy. I second Tom's points about pushing for followup and genetic testing, to be on he safe side. Best wishes for a great outcome.