I have a rare stage IIIB(p) lung cancer, which gives a 9% chance of survival. How important are individual prognostic markers - eg, SUV over 11, presence of intracytoplasmic mucin... Any individual markers I have are all "associated with a poorer prognosis and a more aggressive tumor" - do I have much of any chance at all?
Reply # - December 1, 2016, 05:46 AM
Welcome to GRACE.I am sorry to hear of your diagnosis, and we will try to help you as best we can.
Prognostic markers can only tell you how large numbers of patients have fared historically, and they don't help too much in predicting how one individual will do. Each cancer is different, and each patient is different, as far as age, other health conditions and response to treatment. Some cancers respond very well to treatment while others do not, so that will be the most important indication of your prognosis.
In addition, the pace of research innovations in lung cancer has increased dramatically over the past several years, while the statistics are based on past therapies. Many more patients are defying those statistics, and we expect that trend will continue.
Reply # - December 1, 2016, 11:04 AM
I wonder how to find the details of the SUV studies - the reports say there is a consistent correlation between SUVs over 10 and poor prognosis -- is it the equivalent of the 9% who survived, 99% had low SUVs, or 50/60% did. The "treatments" don't cure, they can add years, but that isn't the same, yet. Most of the research seems to be on prolonging life once metastatic, not curing to prevent metastasis, it seems. I haven't even seen pulled data as to what separated the nonmetastizers from the rest. So right now I'm still trying to get a firmer sense of the landscape, so to speak - thank you, Jim, for helping and being here for us!
Reply # - December 6, 2016, 08:21 AM
These are current and some past studies on SUV. Most of the type of info you're looking for is probably older than these but you can probably find something in the references in the linked studies.
The reason for the poor prognostic value given to high SUV is for the aggressiveness of the lung tumor. SUV is a measure of how much cellular activity is happening in the tumor. More activity in what should be stable tissue suggests faster moving cancer.
Prognosis is a look at many thousands even millions of cases. The span of what's possible shouldn't be underestimated. For squamous 10 is a pretty high number but in adeno it's quite average.
Another thing to keep in mind is that if the cancer taken out was rather aggressive and if there are still cancer cells that cancer will more than likely show up soon, (edit) within a year or so. Follow up scans usually continue at every 3 to 6 months for 5 years before being considered cured then usually once a year there after. But if lung cancer is going to come back it's usually within the first year.
Reply # - December 6, 2016, 09:54 AM
I don't keep links to the research I do, but there were multiple studies linking SUV with prognosis, especially in the last few years, to the point that it is established the higher SUV, worse prognosis, with no question that SUVs of 10 or above are the highest group (regardless of squamous or adeno). Your reasoning is the same as mine, the question I am left with is how ironclad the correlation is - the studies didn't break down the data beyond higher SUV, worse prognosis, making it sound definitive versus ballpark. As to millions, no, these data, all the data re lung cancer is rather small - the largest study is not more than 100,000 people or so, across all continents - each subgroup has a smaller portion within that. It would be nice to know what the doctors think re this, whether SUVs of over 10 (I had T4, a tumor in each lung, both over 10) pretty much guarantee metastasis or not. I'm already 8 months out with no metastasis, so your timing assumptions may be wrong; from what I've read most metastasis occurs in the first 2 years, with 10.8 months to 1.5 years being the bulk of it, but that is ballpark v. absolute.
Reply # - December 6, 2016, 12:04 PM
I'm sorry but I didn't paste the link to which I referred at the top of my most previous post, https://clinicaltrials.gov/ct2/results?term=SUV&Search=Search
To be certain you stated you had tumors in both lungs. That would mean both left and right lungs. I wonder if you meant lobes (there are 2 lobes in the left and 3 in the right lungs; edited). I ask because it makes a difference in staging. If there are malignancies in more than one lobe of the same lung that would be considered stage III but malignancies in both lungs would be considered stage IV. The difference between stage III and stage IV is a bigger predictor of prognosis. I suspect you meant you had malignancies in both your right lobes hence the stage IIIb diagnosis and surgery.
You want to know how much the aggressiveness (suggested from an SUV) of your cancer will predict your outcome. The surgeon either took all the cancer out or there were cells left behind. If there were cells left behind they will show up (probably within the next 10 months) at some point after they accumulate enough in one spot to show up on a CT.
The corralation between high SUV and low cure rate is in the numbers therefore ironclad. But as Jim suggested these meta analyses don't take in consideration the extreme variences of each individual's cancer. And as most any oncologist will tell you there are as many different cancers as there are people with cancer. These numbers are only good so people can talk about it in general terms but they are worthless when trying to decide whether your cancer will return after 8 months post surgery. I wish there were answers other than watch and wait. On a personal note my husband went/goes through similar as you. He was diganosed with metastases twice and is now 7 years out from diagnosis and almost 3.5 years out from treatment. Waiting is still difficult but easier and certainly better than progression.
I hope you continue to do well.
Reply # - December 6, 2016, 01:15 PM
I'm afraid your link is confusing - there are hundreds of entries and they are all for clinical trials, a few of which (on the first page) have results - I wasn't able to find the type of studies I was referring to (they don't involve chemo or maintenance).
Yes, I meant lobes, not lungs. There are 3 in the right, 2 in the left, fyi. Of course cancer in both lungs is stage IV, I am not that.
I just wanted to know whether the SUVs being high are a strong (almost absolute/absolute) correlation or a statistically relevant one (eg, 60-80% correlation) - I did not find data specific enough to tell; that was my question.
Wow re your husband - I assume it is an indolent cancer to last over 7 years, 3.5 w/o treatment -- I was told stage IV is not really cured, there is a thought that some are misdiagnosed that way, but I would think metastasis is easily diagnosed, lol. Such a response is still very rare though, no one can count on it but what a blessing to have it!
All my markers are for aggression and a worse prognosis (intracytoplasmic mucin, high SUV's, ALK+ etc) so I was wondering how assured I am of that, with a base 9% to begin with, without taking into account the individual prognostic markers. As to cancer being left in, I had clean margins but with cells in a lymph node, the horse has left the stable to some extent, it is a question of whether those cells have died or are thriving - the data implies thousands of cells over years (due to even early stage I having metastasis leading to death in a large percent) - I just want to know how individual markers like this interact with stage, but without hearing from a doctor I'm frustrated as to response -- in general there is so much "#'s mean so little" attitude out and about and I don't share that/don't have enough trusted medical advice saying if that is so or not. It is clear my cancer isn't indolent as that term is normally defined, it is clinically aggressive but removed
Reply # - December 6, 2016, 04:24 PM
The links to clinical trials can be further modified to better find what you're looking for. These trials at clinicatrials.org are the studies from around the world done that provide researchers, pharmas, fda, etc. with the data on which treatments and management are based. Narrowing the perimeters in the "modify search" link might help you find some data you want.
Right, the right lung has 3 lobes, I'll edit that so not to confuse others.
I don't know that one of our oncologist faculty can help more than what you already know. Out of every 100 people with the parameters you've looked at there are 9 people that will be cured of their cancer 5 years out from surgery and 91 will have progressed (from what I remember you quoted, the numbers are close enough to be fair). According to cancer.org, "The 5-year survival rate for stage IIIA NSCLC is about 14%. For stage IIIB cancers the survival rate is about 5%." It's important to know that the numbers are probably different today because of several new significant treatment options that prolong life and add to quality of life. http://www.cancer.org/cancer/lungcancer-non-smallcell/detailedguide/non…
Beyond that no one not even the best oncologists in the world can tell you more than that. I wish they could. More than that we and they wish and work for a cure 100% of the time.
My husband without a doubt had a stage III T4 tumor for which he had chemo/radiation. At 2 different times 2 different tumors from 3 different oncologists agreed he had mets. Biopsy wasn't possible for one on the spine and one was biopsied, caused a collapsed lung and was undiagnosible and looked just like the original tumor. So as is sometimes the case with cancer you have to go with what you know. So maybe he had mets but maybe he didn't, we will never know. What we do know is he had at best a T4 tumor, therefore a 5% chance to survive 5 years (meaning 5% chance to be cured)
Reply # - December 6, 2016, 09:02 PM
I find my info on google with published medical reports (eg, Journal of ...) - that's been easier for me then going through a clinical trials site, but these are all resources. I've already read the studies that I've referred to though, and they didn't list the info I asked about - that's why I'm asking here.
Actually, out of 100 people no one will be "cured," it is just survival - cure is a tricky thing with cancer. In my stage (IIIb), with non bulky nodes, 9 of 100 would still be alive at 5 years; my question was the effect if any of more personalized prognostic factors (separate from stage) - SUV and intracytoplasmic mucin especially - how does that interact with staging re prognosis -- that was my original question, and I still wonder re this.
(the 5% number you quote is out of date; also, it is not 91 people who will have progressed, but 91 people who will have died (due to having progressed).
Thank you for responding - I do think a doctor could respond to my original question differently though. I also understand that my body's response to an alk product would make a big difference if I progressed, and only 65% respond at all - so I am asking with that caveat that maybe alk will work well, but b/c the cancer is so mixed (80% squamous in the 2d lobe "metastasis"), maybe it is less likely to. My real question was about the chance of metastasis at all, as I assume most of the 9% didn't metastasize; obviously some could have and then stayed alive on drugs (1/2 of those who survived 5 years didn't 10 years)
Reply # - December 6, 2016, 11:03 PM
Unless the cancer is an extremely indolent form a person can be and most probably is cured if there is no recurrence 5 years post curative treatment.
Today if someone hasn't recurred 5 years after curative treatment (most likely even just 2 years) is considered cured (especially someone who had aggressive cancer). The 5% relate to people who are most likely cured. The term isn't used lightly and means what is suggests. 10 years ago if you recurred after curative treatment there wouldn't be treatment options to survive past 5 years. Therefore the term survival really suggests cure in this situation.
Dr. West and others have written on the subject of cure. Perhaps your answer is here.
the main subject matter is curative radiation/chemo but it's mostly compared with surgery, http://cancergrace.org/lung/2016/03/13/gcvl_lu_chemoradiation_standard_…
Your question, do I have much of any chance at all? Unfortunately the answer is you will most likely have a recurrence of the cancer. However the cancer cells found in the mediastinum may not take hold. In the first link Dr. West states, "Clearly, the take-home message is that the risk of recurrence/progression for most patients with potentially curable lung cancer — and this applies to limited disease small cell lung cancer as well — is primarily focused in the first 12-24 months, diminishing thereafter. How early the peak risk is, and how long the tail of recurrence risk goes out, is largely related to the aggressiveness of the underlying cancer."
Reply # - December 7, 2016, 12:50 AM
Thank you. But the fact that half of the "cured," in your terms, die within the next 5 years is something to consider. The studies deal with survival, not cure, but I understand the longer out you go, the less likely you are to be ill. My own dr. mentioned having someone with no recurrence/met for past 2 years, but then met. in 3rd.
The only question I have, is still unanswered, which is the effect/intersection b/t molecular markers for poor prognosis, like high SUV (my original Q) has with staging. Obviously, at a 91% staging chance of met. I know, as you wrote, I "most likely" have a risk of recurrence - the risk is 91% on staging, I was asking the further, if any/what effect of high SUV and intracytoplasmic mucin and alk.
Reply # - December 7, 2016, 05:40 AM
I don't think there's a prognosis value used in SUV. It' a diagnostic tool used to get to staging. The higher the SUV, the more likely that it' cancer. But again, only a biopsy can confirm cancer. I know people living with MBAC for 10 years, so prognosis is really individualized. You can read stats and it comes down to percentages, but it all depends on if you're a responder and how your cancer reacts. We all have a risk of recurrence. I had a recurrence at 2.5 years but have now passed the 3 year mark since treatment ended for that. Will I recur again, possible but I don't worry about it as I'll deal with if it ever happens. Have too much living to do! Take care, Judy
Reply # - December 7, 2016, 09:02 AM
I asked one of our faculty oncologists to respond. We should here back within a few days.
Reply # - December 7, 2016, 06:58 PM
I think the prognostic factors you mention aren't necessarily quantifiable. For one thing, high SUV means that there is a great deal of metabolic activity in the tumor, leading to an assumption that the tumor is more likely to grow at a faster rate than one with a lower SUV. But faster growth doesn't necessarily relate to whether a tumor metastasizes. That process is not fully understood. Some cancers metastasize while the primary tumor is small compared to other tumors which do not spread as quickly.
There are many prognostic factors such as age, tumor differentiation and comorbidities, but it's a mix of factors that is different for each patient. About the best you can say is that you'd rather not have negative prognostic factors, but because of other factors which may be more positive, you can't translate that into a specific risk percentage.
Response to treatment is also very important. Some tumors which seem very aggressive respond very well to treatment, while others which don't seem as fast-growing respond poorly and some turn suddenly aggressive.
Reply # - December 7, 2016, 09:09 PM
My point, Jim, was that I had read several recent studies which said it was now established that higher SUV of original tumor, even where that tumor is then surgically removed, relates directly to meta/progn. In fact, I'm not sure that SUV relates to size; my tumors were high suv but not over 3 cm, eg. In general though, larger tumors tend to not bode as well as smaller ones, but that is part of staging, so taken into account there. The suv studies did not correlate with age - seemingly the only correlate, which was direct, was high suv (questionable below, absolutely anything over 10). That is therefore part of my question, I guess, but I read the studies as suv being independently prognostic - my question is essentially what that means for someone who already only has a 9% chance via staging -- do individual neg. prognostic factors of high suv and, to a possible lesser extent, intracytoplasmic mucin, downwardly effect this % - with every additional prognostic showing correl. w/ "poorer prognosis and more aggressive tumor," and poor prognosis elsewhere defined as more likely to die and more likely to die sooner, do I even have any chance, and is it much slimmer than 9%...Of course it's also not good for me that my cancer is adenosquamous, which studies have shown (again, consistently versus mixed results) is "worse than adeno, worse than squamous"(!!). I frankly still don't understand how a mixed tumor, if I end up having one (as my original T4 2 lobes of rt lung were) of predominantly squamous, which Dr. West previously wrote is highly unlikely to be alk, would respond fully (regress/halt) to an alk product. And while many talk of tumors responding initially as if it is semi-guaranteed, alk drugs have only a 65% response rate and squamous even less, 20-30% response rate, which means there at least 70% don't respond - not sure how close death is to nonresponse, but I think might be as little as 1-2 months -= would be good to know that data too.
Reply # - December 7, 2016, 09:16 PM
Obviously just trying to get a handle on the reality and data I am reading; clearly need to not be surprised if met. and die soon, and be prepared to live for years or more, but still want an accurate sense of prognostics (some poo poo #'s, but to me there is a difference b/t a 2% chance of living, a 14 and a 24, and I'd like to know what group I am in). B/c I am in my early 50s, nonsmoker, no known risk factors (I wonder re cat litter though), it's hard to fully absorb sudden situation like this, especially as one of my dr's seems more scared of progn. discussion than any patient would be.
Reply # - December 8, 2016, 05:20 AM
I'm afraid that I don't have a lot to add that directly answers the subject under discussion, prognostication. As an oncologist, I have spent little time on vetting the literature and doing research on prognosis (which means factors that predict outcome regardless of choices made). To the contrary, I've spent more time on prediction (which means markers that help guide the right thing to do). I understand from a human standpoint why you are interested in everything that you can learn re prognosis, but can't help much. What I can tell you is that we have good data that after surgery for NSCLC, fit patients benefit from adjuvant chemotherapy. I can also tell you that having EML4/ALK improves the options if the cancer recurs. There are also clinical trials looking at using ALK inhibitors after standard treatment to try to further improve outcomes; if interested, you could discuss whether such a trial is a good idea for you with your doctor.
Reply # - December 8, 2016, 06:01 AM
Thanks for taking the time to reply. Because of the end runs that the body does around the alk inhibitors, and their resultant limited span of effectiveness (typically leading to the need to use drugs with harsher side effects, which may or may not work, for some time) I would be loathe to use an alk inhibitor prior to needing one -- I'd be gambling the best chip I had! Especially as alk inhibitors don't seem to kill cells, just inhibit them until they endrun them; I thought earlier studies had shown that such use wasn't effective, but presumably they are testing different alk inhibitors. As to patients benefiting from adjuvant chemo, that would be true if only survival was the test, but when you factor in QOL, it is less clear; it seems to be reasonable to go either way depending on one's priorities. What type of doctor would be familiar with the prognosis arm? Just medical researchers and not clinicians?? Maybe I should track the researchers - that's a good idea! What is interesting to me, regarding prediction, is how the issue of melatonin still hasn't been fully established -- it is Dutch, Danish, etc. researchers, but not USA, who are looking into it; many studies have shown 20mg/day has a protective effect against metas. equal or greater to that of chemo - but a large enough scale study to resolve this more definitively still hasn't been done, in spite of smaller studies showing this may be the case going back over a decade. While melatonin is pennies, versus new chemo drugs, nonprofit research centers shouldn't care about this, and there are many that could easily incorporate this type of study into their center's work it seems.
Reply # - December 8, 2016, 06:12 AM
One point that should be made clear is that when we discuss "response rate" in lung cancer, that is defined as tumor shrinkage greater than 50 percent. Other patients respond with shrinkage less than that amount (a "partial response") while others achieve stability, meaning the cancer has stopped growing. All are positive results of treatment which can add to length and quality of life.
As far as the side effects of treatment, each patient must make his/her own decision regarding cost/benefit. In my direct personal experience my late wife, with an initial stage IV diagnosis, was on continuous treatment for three years and four months. There were side effects, but she never felt as though they weren't worth it in exchange for the extra time treatment provided her. Until the final month or two of her life, her quality of life remained good, enabling us to travel to visit family and friends, sharing experiences none of us will ever forget. In over eight years here on GRACE, I have seen that same scenario played out numerous times.
I hope that these discussions will help you make informed treatment decisions, with which you will feel comfortable under the circumstances.
Reply # - December 8, 2016, 06:14 AM
I agree strongly that QoL is an important factor and that it has been insufficiently studied. The studies that evaluated adjuvant chemo vs. not were done before we incorporated QoL analysis into studies. Given the proven survival advantage, it would not be considered ethical to repeat these studies and so we may never get sufficiently high quality data to inform more human decision making. It is clear that adjuvant therapy has real toxicity which can harm quality of life in the short term and sometimes as well in the long run. It is also clear that for that small proportion of patients whose cancer would not have been cured without adjuvant chemo, but whose cancer is cured with the addition of chemo, that the quality of life advantage is likely massive. There is likely a larger group of patients whose cancer recurrence is delayed, but not fully prevented by adjuvant chemo; for this group, there is a potential QoL harm from the chemo and also potential QoL gain from delay until symptoms from lung cancer. I won't even speculate on where that falls out more globally; just trying to share how I think about this in case it helps.
There are many, many good ideas out there on improving cancer care. Researchers (imperfectly) vet what they see as most promising. There are a lot of good ideas out there, and individual researchers can't look at everything! That said, if a given idea is not being much studied, there may be a reason. That reason may be lack of ability to fund research. It may also be that other ideas have attracted more attention, either because of having greater promise or for other reasons.
Reply # - December 8, 2016, 06:17 AM
I was writing when you posted, so I have one additional clarification. ALK and EGFR inhibitors definitely do kill cancer cells, but some survive and eventually develop resistance mutations. That is what results in cancer progression.
Reply # - December 8, 2016, 06:17 AM
I was writing when you posted, so I have one additional clarification. ALK and EGFR inhibitors definitely do kill cancer cells, but some survive and eventually develop resistance mutations. That is what results in cancer progression.
Reply # - December 8, 2016, 06:18 AM
Jim: I'm sorry that I didn't see your response until after I hit post. I'd like to clarify that standard (non-immune) "response" is defined as 30% shrinkage via a funny system called RECIST. "Progression" is 20% growth. Do patients with 29% shrinkage really benefit much less than patients with 30% shrinkage? Of course not, but the bar had to be set somewhere to compare the efficacy of therapeutics to each other. That's why evaluation of merit must incorporate many other factors--response, duration of cancer control, survival, side effects, quality of life, cost, patient values, and other factors.
I'll also comment that both side effects are very variable between individuals and hard to predict up front. I'll also comment that a decision to get a 1st cycle of chemotherapy is not a commitment to receive 4--patients who have unacceptable side effects have every right to stop.
Reply # - December 8, 2016, 06:33 AM
Thank you, Jim. (the response rate I was referring to (as I was using it) was any response - as I recall, the alk drugs (eg, criz.) halt or decrease tumors in 65% of cases initially and have no discernible effect in 35%; I thought the general chemo drugs do the same only for 20-33% of people - that is how my oncol. explained it. As for cost/benefit for chemo, there is a big difference between stage III and stage IV - stage III the benefit is a 5% increased chance of surviving, with a 10-20% (4x greater likelihood) of disabling conditions permanently, and a significant chance of QOL diminishment - not taking chemo you can fully enjoy what in all circumstances is likely premetastasis QOL. In stage IV, you have tumors that will kill you and constant stress about them, perhaps - chemo there has a higher percentage chance of doing something (33% v. 5%) and if you do nothing, most people don't live long at all (depends on cancer subtype) but the fact she wasn't too disturbed by side effects means it was a good fit for her - had she been nauseous and the antinausea drugs not worked, etc, then her QOL would have been much worse (ditto fatigue, brain fog...) - again the %'s, forks in road - she was very lucky to tolerate treatment so well, and many do, with alternative more unpleasant. I am glad you got to enjoy and be with her for that long a time - as you note, some do live for years now with met., it will be a game changer for the #s (ie, survival at 5 years won't mean non met. as much as living with cancer)
Reply # - December 8, 2016, 06:56 AM
sorry, I didn't see the last few posts before I posted. The problem with doing one round of chemo is that (my oncol. said) sometimes it is months after that bad side effects develop - either due to cumulative burden or even months after chemo has ended, so it seems you have to buy in to that risk to even start, versus you can stop if it doesn't sit well and you'll be all right. With such a low response rate, it was an easier decision for me to make then if 60% are cured and 20% have neuropathy, etc. Hopefully progress will be made on stopping met., something more targeted then chemo/cells reproducing quickly (I read enzymes, etc.) So glad people are working on this at all.
Reply # - December 8, 2016, 07:31 AM
I think the comparison between the increase in overall survival in stage III versus the response rate in stage IV patients is apples and oranges. Though perhaps only an additional 5 percent of stage III patients will survive five years, it is entirely reasonable to expect that the adjuvant chemo will delay recurrence and increase survival even if not to the five year threshold.
In addition, it seems that the response rates you were quoted are "objective response rates" (shrinkage of at least 30 percent as Dr. Weiss stated), because the percentages of patients receiving benefit from both TKIs and chemo is greater. For example, this post by Dr. West includes a waterfall plot showing the response of each trial patient in a study of ceritinib. As he describes, the "disease control rate" was about 80 percent.
Reply # - December 8, 2016, 08:03 AM
I don't know why you think that adjuvant chemo can delay recurrence and increase survival in those it hasn't been noted to do so -- I'm not aware of any data showing that, and it should be easy to have seen since the studies for adjuvant compared a group with the chemo against a group that did not have adjuvant chemo, so such a response would have been visible in the data. What I was told by my oncol. is that the bulk of patients have NO "extra time" from it. You seem to be pushing for people to do adjuv. chemo rather than objectively laying out what it involves and what we know about it. Even if it did delay met, the question would be how long and at what cost - the side effects are significant and multivalent. The 80% Dr. West was referring to (v. the 65% response rate he notes and I noted) was relatively insignificant in 2 ways - amount of response and 15% higher -- these drugs are used post met. Differences between treatment for stages III and IV are relevant I think - they are different situations and I am simply not lumping them together. The side effects he lists are also significant (some 75% with nausea, diarrhea... Luckily that article is a few years old and there is at least one better drug already on the market now with less side effects and strong response.
Reply # - December 8, 2016, 08:05 AM
Unless you have data, that first paragraph you wrote just seems like misinformation, which shouldn't be on the site.
Reply # - December 8, 2016, 11:53 AM
I've not spoken for Jim before but somehow this discussion has seemed confrontational so I'll make an exception since you've so obviously called him out and if he wants Jim can clue us in if I'm wrong.
It stands to reason that if adjuvant treatment doesn't cure you it will add progression free survival. Adjuvant treatment is the same platinum doublet treatment as many 1st line treatments. 1st line chemo doublet statistically adds to longevity. It's a matter of labeling what the treatment is because they are both the same.
If most of our oncology faculty were not at a conference this week were and able to comment I'm sure they would say something like whether you have statistically a 9% chance or .9% chance of survival they couldn't say which because you, like everyone else have more variables than the few you've given but are sure that it has little to add to your equation to find where you fit on that spectrum of 100s of thousands of people (that in itself probably is statistically relevant). Then I'm sure they would add something much more thoughtful and comforting than what I'm in the mood to try and think of. Jim and I have both taken care of our spouses dying of lung cancer (mine turned around after near death Jim's wife died). I respect and understand that I've got no clue what you're going through, please respect our work here. We don't take it lightly and we don't make many mistakes. Please stop challenging everything we say. I really do remain disquieted by your predicament.
Reply # - December 8, 2016, 12:05 PM
Two points of information here to clarify. 1. For appropriately staged patients, adjuvant chemotherapy improves both disease-free survival (time until recurrence OR death) and overall survival. 2. That benefit may be largest for stage III. For data on this, see http://www.nejm.org/doi/pdf/10.1056/NEJMoa031644 (sorry I can't do prettier or find cancergrace link, but I'm in transit and internet is slow here). See figure 1 for the DFS and OS data and figure 2 for the stage data.
It is perfectly reasonable to not get adjuvant therapy. In my practice, after careful counseling, many patients choose not to do adjuvant. This is a personal choice and all that anyone here wants to do is provide information to educate that decision.
Reply # - December 8, 2016, 12:10 PM
It looks as though I was typing while Dr. Weiss was posting, but here is what I just posted:
Here is a previous statement by Dr. West:
"We’ve covered the potential value of systemic therapy for early stage NSCLC in a wide range of posts and podcasts, and to summarize what we’ve learned in a sentence, it’s basically that chemotherapy can significantly increase progression-free survival (PFS) and overall survival (OS) in patients who have undergone curative surgery for stage I-III NSCLC, but the benefit is far more convincing in patients with a high enough risk to justify the potential adverse effects of chemotherapy." -http://cancergrace.org/lung/2011/12/03/chest-trial-scagliotti-neoadjuva…
Reply # - December 8, 2016, 03:38 PM
I want to add that there is more than just stage that determines the benefits of adjuvant chemotherapy after resection. I read a retrospective study (not double blind) that involved large numbers of people who had > 4cm N0M0 tumurs with and without adjuvant chemotherapy: https://www.ncbi.nlm.nih.gov/pubmed/26474557
For some groups (i.e. woman 65 - 72 without comorbidity or women <65 with zero or any number of comorbidities) adjuvant chemo roughly doubled life expectancy. This is based upon thousands of people using recursive partitioning, so it's not a statistical fluke and it is a phenomenal result.
For other groups of women, chemo did not improve life expectancy. For all men it did, but by less, significantly less.
I think what gets lost at times in these discussions is how little we know about all the relevant factors determining prognosis and prediction.
"Gender, Age, and Comorbidity Status Predict Improved Survival with Adjuvant Chemotherapy Following Lobectomy for Non-small Cell Lung Cancers Larger than 4 cm."
Reply # - December 9, 2016, 10:54 AM
Right on the mark. Adjuvant therapy is a hellish path to take. It's dangerous at best and many people drop out before completing it. The only redeeming quality is it might cure you of cancer. But it can also be too dangerous to even try. That's why it's so important to have thoughtful dialogue with your healthcare team before jumping in or opting out.
Reply # - December 9, 2016, 11:17 AM
I have to say I've found this string frustrating because I made an effort to limit it to one question, so the response would be clear and other questions on other threads. I appreciate that no one had an answer to my actual question, but the effort I felt I had to expend addressing adjuvant chemo was inordinate, and yes I felt the response was confrontational, not just my response to the response. I should not have been forced to write at length re things that weren't part of the question and not doctor raised -- I felt I had to keep going over my own staging, due to questions re it, when it was clear from my question what I was asking (which had nothing to do with adjuvant chemo, the time for which is any way past for me. The string became so long any answer to it became lost (Dr. Weiss, saying doesn't know answer) and I felt repeatedly challenged or forced to address answers that weren't on point. Historically the site had answers by Dr. West, so I felt it was more than a group/lay group leader discussion forum, which is not the case now. I think if lay group leaders don't know the answer to the question, they shouldn't chime in anyway (especially with statements arguing against prognosis, when the question was about prognosis), let alone saying "no doctor can tell you different". This was a very tiring and frustrating experience which was also upsetting.
Reply # - December 9, 2016, 01:30 PM
And I have to say I don't understand why you feel your question wasn't answered to the best of the abilities of both Dr. Weiss and the room moderators. I thought Jim's first response to you was right on. You say you have a rare form of LC with intracytoplasmic mucin and don't give any other info. You don't say what markers you're talking about but that any individual markers you have are associated with a poorer prognosis. No one can predict your prognosis, as Jim stated in his first response. Everyone's cancer is different and how you respond to treatment. There are no definite answers other than when your cancer has advanced and there is no more treatment option, that's it. Sorry you feel this way and hope you get whatever it is you're seeking.
Take care, Judy
And I'm not a medical professional nor a room monitor but have been a member of GRACE for 7 years. And I'm a two time LC survivor.
Reply # - December 9, 2016, 03:46 PM
I think we've gone as far as we can on this thread so I'm closing it. Thanks to all for their input on such a difficult subject.