Nearly 8 In 10 Do Not Know That Disease Is Incurable

jenrio, maybe 20 years hasn't brought the progress you expected because your expectations were too high.  Maybe 20 years hasn't brought the progress you expected because It's Bloody Hard. I'd guess that over the 20 years there have been hundreds of failed attempts. And there probably are hundreds still being worked now.  Many just in a petri dish, some in clinical trials.

I'm sorry but I won't get into a debate about your "guesstimate for return/cost ratio for preventing MBC (small) vs curing MBC (big)".  It's a guesstimate.  It's completely made up numbers. If I knew the real numbers I would present them but I don't have a clue what the real numbers are.  However, when I see that you've put the cost to develop each MBC drug at $5 million and the cost to develop each early breast cancer drug at $300 million, yes, I do have to say that the logic appears, to me, to be flawed.  Or biased, anyway.  

I don't believe that there is a conspiracy of silence.

Paula, in your single post you explained the rationale for early breast cancer drug development so much better than I did in all my many posts.  Thank you.

Jenrio, I found an excellent IBC team at MDA Houston. No fooling around here!

"Large portion of EBC is known to show linear recurrence risk (ie, a patient has the same rate of recurrence/metastasis 5 years down the road as 10 years down the road, as 15 years down the road). "  That is not my understanding at all.  What data do you have to support this?   It is true that some recurrence risk always remains after a diagnosis of invasive cancer, but everything I have read indicates that the risk drops to a very low number after 10 years.

"Almost all EBC prevention strategies cost hundreds of millions to fully test, unless they have PERFECT prognostic test that like a time machine could deterministically predict whether a patient will live to her life span (no dice throwing!).   That test will cost 20 years to test out by itself."  The assumption that you need 20 years of results before a drug that aims to cure early stage BC can come to market is simply wrong.  If a drug is able to reduce the development of mets significantly over just a 5 year period, it will be considered a viable drug (assuming that the side effects don't counter the benefits).  This is how drugs like Tamoxifen came to market.  Then over time, once the drug is already in use, it can be determined if the benefit extends over the patient's lifetime.  Yes, it costs money to continue to monitor patients to see how many benefit for an entire lifetime, but in the meantime there is already an effective drug on the market, saving lives (even if you can't officially prove that until 40 years later when the patient dies of something else, never having developed mets).

jenrio, if every case of DCIS can be successfully caught and treated, then we will be able to prevent the development of at least 80% of IDC cases. That also means that ~80% of MBC cases will be prevented. If a vaccine is brought to market that prevents the development of breast cancer before it even starts, then in the future no one will be worried about MBC because MBC will no longer exist.  But you think money is being wasted on drugs or vaccines that aim to prevent breast cancer? 

Of course prevention doesn't help anyone who has MBC today and it doesn't help anyone who currently has an earlier stage of breast cancer or anyone who will develop breast cancer anytime in the near future.  This is why development needs to continue on all fronts.  But to suggest, as you continue to do, that the only reasonable and cost effective solution to cure breast cancer is focus all (or most) resources on developing a drug to cure MBC is completely flawed thinking.  It is also an approach that could lead to thousands upon thousands of unnecessary deaths because without better drugs for early stage women, there may be more early stage women who progress to MBC before the MBC cure is found.  Remember that approx. 80% of women with MBC started out with an earlier stage diagnosis.

jenrio, I understand that my position on this is not a position that is acceptable to you. That's fine. But it means that there really is no point in my continuing to engage with you on this topic. I probably shouldn't have written this post, but for other readers, I wanted to address the two points that you made that I believe to be inaccurate. 

Kayb,

You are right.   BC has many subtypes that may require different treatment.   That's why better clinical trials are very important.   Small scale, targetted, that gather as much information as quickly as possible.   

"When any one of those many EBCs progresses to MBC, I believe it has become another different animal. MBC constantly adapts until it can do an end run around the latest drug it's on. It's ability to do that means that a drug developed in hopes of halting MBC may ultimately not prove very effective in that setting, but could still have a curative effect on a chemo-naive EBC. "

I agree with you.   MBC is a worse much more dangerous animal.      Significant portion of EBC folks who were treated with aggressive adjuvant chemo (AC/T), who due to AC/T also shooting blanks in early stagers, may still recur/metastastize after a few years.     They mostly can't go back to AC/T again, less bullets for them (plus they are not chemo naive any more as you pointed out).       Guess how're their survival compared to MBC folks dxed from the start?   What you say is also another reason why adjuvant trial takes long time and are costly.   Drug resistance developes and are understood over long time. 

But my main point is:  because MBC frontline is vastly more dangerous, that we should just forget the people in there and spend vast majority of our clinical trials funds fortifying the very porous border?    and we should forget the MBC folks fighting there and shooting blanks and not even try for the difficult job of "cure"?   and we should just talk about BC without mentioning the reality of MBC?  and we should let 80% of public and even patients continue to be deluded on the reality of MBC?

"Jenrio - by your logic, if a drug failed to cure a particular MBC, it wouldn't be cost worthy to then move on to trials of that drug for EBC. "

I'm proposing a genetic/darwinian optimization algorithm.   My logic requires the better or best crops of many MBC cure candidates for each subtype of MBC be further tested/refined for MBC cures.     Each of these test should not take more than 2 years iteration to gather enough data (MBC setting and neoadjuvant setting), should not cost more than 10 millions for stage 1-2 each.    Fail fast and fail quick tests instead of clinical trial equivalent of "Big Dig" or "Bridge to No Cure", that costs a lot. 

Herceptin was originally tested on MBC folks on small scale.   And it was fairly obvious early on that it was a winner in a weak competition.   Same thing with Palbociclib, it left all competition in the dust 20 years after Herceptin.   That's why FDA is giving the latter breakthrough status, so that phase 3 tests could proceed at a leisure while MBC people get access to it.  

My logic does say that Herceptin/Palbociclib should NOT have been tested in adjuvant setting unless only phase 1,2.   If it has best benefit/cost ratio in adjuvant setting, then only phase 1,2 is necessary; if not, it should be dropped for adjuvant setting altogether.

I don't mind an expensive wall, as long as the MBC people has a way of getting back from the frontlines.   But now we all see the walls and no longer see the horrors of frontline.    People who calls for a MBC cure are called "naive" and other people are even surprised to hear there's still a MBC war without cure, and scientists seem to not be talking about the cures any more, because it's too risky to fail and be proven wrong and called naive.   We need to stop making new walls and get scientists back to work to really end the war.   

Quoting from the article:

http://community.breastcancer.org/forum/73/topic/806372

“But we promise you this is the beginning,” said Mak, his voice breaking with emotion. “There will be another drug that we will be filing for [approval] next year — and next year and next year — until we get this done.”    

This is music to my ears and I want to hear this from every scientist working on breast cancer, in every breast cancer paper.  "Get this done".    As far as I know, he means this to be "Find the MBC cure". Take the torch from couple of amazing scientists, and keep trying new ways and fail every 2 years till we all "get this done". 

I've found there are a number of different kinds of patients, and they do what they need to do to survive.  There are types like me who get what I call a "mini PhD" in their illness--I read like crazy and still do; there are those who turn their bodies over to their oncologists and health practitioners (considering what a circuitous route research can be, I totally get it); and those who cling to hope and "cures" like religion.  Melissa Etheridge's statements are ignorant and dangerous.  She doesn't have access to information my brilliant oncologist wouldn't have, and I'm here to tell you, she tells me every time I see her they just don't really know why some people get cancer and others don't.  The BRCA gene is a tiny slice of the knowledge, like Oncotype it represents the minimal genetic breakthroughs.

I resent anyone suggesting they "know" what causes cancer.  I am surrounded by stressed out, angry, nutty people.  I was the one who got cancer.  I have an "idea" what contributed to my cancer:  extremely dense breasts, combined with no kids, and perhaps--perhaps a genetic component (my aunt has just been diagnosed for the 2nd time, my grandfather had Hodgkins).  Studies seem to indicate the body has a hard time flushing out cellular growth in dense tissue.  Ms. Etheridge, that ain't stress related.

What she tells us is her justification for herself, nothing more.

jenrio, for goodness sake, stop twisting my words... and everyone else's.  What I said was "Not that MBC patients are excluded from this research (although the articles don't indicate who will be included in the trials), but perhaps Dr. Mak is using the broader definition of "cure", which includes curing patients with early stage breast cancer before they ever have a chance to develop mets."

I have no doubt that Dr. Mak has the guts to go for a cure of MBC. Remember, you didn't know who Dr. Mak was until I posted about him.  I have been familiar with his work for more than 20 years.  My point was simply that I think that his definition of "cure" most likely includes curing both MBC patients and curing earlier stage patients.  And if, over the next 20 years, his efforts lead to the elimination of all new cases of mets because he has developed a treatment that successfully "cures" all early stage women, I think he will be satisfied that he "got it done". 

Speaking of twisting things, you continue to make the point that because early stage BC can still recur 15 years after treatment, it means that we can never know if a "cure" is real. It also means that we need to test every drug for 15 or 20 years; this is cost prohibitive and the reason why money shouldn't be put against early breast cancer drugs. 

But what is so different with MBC?  In the other thread on this topic, you defined a cure as follows:

"90%+ of any subset of breast cancer patients pre-identifiable through any test, live 5 years without additional drastic  intervention.  There are also test that allows us to know sooner than 5 years, because metastatic breast cancer often comes back within 1 year with current intervention and there are blood tests (that could not detect cancer activity in early stagers but could track in late stagers)."

So a new drug is developed for MBC patients. It's marketed after just 3 years of testing because it appears to be so successful. 90% of MBC patients who take this drug live 5 additional years without additional drastic intervention. You have your cure!  But then, right at year 7, every one of those patients develops horrific side effects and every one starts again to progress as mets develops throughout their bodies. All the patients quickly succumb. This drug passed all your bars for a "cure" with flying colors but how exactly can it be defined as a cure?  Don't you need the same 15 to 20 years, or a lifetime, to know if something really is a cure for MBC?  That doesn't mean that drugs for MBC shouldn't be put on the market sooner, but the idea that you have different definitions for "cure" for MBC vs. early stage breast cancer is silly.

We all know that we have not been cured of breast cancer until we die of something else, with no evidence of breast cancer in our bodies.  That is true whatever the stage.  But that doesn't mean that an extra 5 years of life, or an extra 15 years without progression, isn't a good thing.  It might just keep us around until the next new drug is available, and that one might be the cure.

Over and out.

Hmmm, silence...

From a separate angle, New York Time news today on whether clinical trial data need to be opened up:

http://community.breastcancer.org/forum/73/topic/807036