Nearly 8 In 10 Do Not Know That Disease Is Incurable

I agree! Had to send an email to my employers today, regarding papers coming their way for me. Got a message back to say 'they hope its not too serious' !!!!??!!

Ignorance, definitely not bliss.

Nicky

There are fearful decisions made DESPITE the facts.



And there are fearful decisions made BECAUSE of what the facts are.



I think Jolie made a decision BECAUSE of what the facts are. Who cares if it was a fearful decision, then?



Is that MELISSA Etheridge making that statement?



If so, I find that curious. Etheridge is almost 9 years out from being diagnosed with stage2b BC with a positive node.

Oh, no, jenrio... I didn't think you were saying anything wrong at all. I completely hear you.



Melissa Etheridge has come across to ME as somebody who is über positive about her survival prognosis and I wonder if she understands just how serious her diagnosis was/ is.



God bless her for being positive and taking an active role in her risk reduction (diet/ exercise/ stress reduction)-------but I almost feel like she doesn't understand how serious her situation was/ is. I feel this way watching interviews with her or reading transcripts of interviews with her.



She had a 4cm primary tumor and 1 positive node... definitely no joke. My wife is stage 2b with 1 positive node-----and I'm fighting anxiety about it everyday.



Maybe Melissa's view of Angelina's situation is a little cavalier sounding because Melissa doesn't understand the gravity. I dunno. I would love to get to where she is psychologically------but there's the possibility she's just ignorant about it all.



I am a FAN of Etheridge's, mind you... if for no other reason than she is a stage 2b'er with a positive node who will be out 9 years come the Fall. But I wonder about her education regarding BC and it's seriousness.



I really don't know.



And even if she does totally 'get it'... I'm with you-----I wish she didn't feed the beast that is the public's ignorance regarding breast cancer. But she did. Inadvertently or not, by insinuating that Angelina Jolie had good options other than the preventative (we hope) BMX.



Without a cure, why play around when the risk is 80% that you get BC?



Why wait for it to happen before you then try to combat it? Don't let evil in. It's like opting to invite Dracula in the house and battling him instead of just locking him out to begin with. Yes you could fight him... Yes you could survive-----but why even go there when you could just lock him out? Some would say that the price of mastectomy is nothing to take lightly.... but my wife had to get one anyway and we'd consider it an affordable? price to pay for the peace of mind if we could have done it before it became invasive. You would think that Melissa Etheridge would get it. But perhaps Etheridge has no anxiety about her BC diagnosis, thus doesn't appreciate the peace of mind that Jolie bought for herself. WHY Etheridge would have no anxiety is beyond me, btw. Can't figure her out. I'm just rambling now.



God bless.

I have liver mets and while on vacation I had to go to the ER for surgery related pain and swelling.  The nurse said to me "I didn't even KNOW breast cancer could go to your liver". 

Also ran into a woman who said she too was a bc survivor.  Told her about my diagnosis.  She said "well you're all done now and doing fine right?" I said.. actually I'm on chemo right now.  She said.. "but you have your hair".  I said yes, this one allows me to have hair but I've lost my hair 3-4 times already with other chemos.

Jenrio, Colt45 - Totally get what you say and clueless about Melissa E.  I'm stage 2A with one positive node and 6 years out.  How can anyone ever forget their BC dx that required multiple stressful scans, surgery, chemo, rads, bone loss, side effects of Tamoxifen and AIs?  The physical scars are part of it plus the long term fear and trauma will always stay with many of us.  Yes - they can give us a pill for that too....

momto2angels, your experience is a good illustration of the 8/10 statistics.    I notice you are ER+, are you going to get Palbociclib?   Good luck, PM me if you need help.  I see a lot of me in you.

Colt45, we like data and facts, so here are some more about Angelina effect:  http://www.google.com/trends/explore?q=metastatic+breast+cancer%2C+BRCA1%2C+BRCA2%2C+breast+cancer+cure%2C+mastectomy#q=metastatic%20breast%20cancer%2C%20BRCA1%2C%20BRCA2%2C%20breast%20cancer%20cure%2C%20mastectomy&cmpt=q

Notice how "mastectomy" and "BRCA1" had a huge surge in interest around Angelina's announcement.  "breast cancer cure" or "metastatic breast cancer" don't get a blip.   That's what I call a wasted opportunity.  100 wasted opportunities over last twenty years led up to the survey results in this post.

I'm not sure that the demand and resources for BC overall is lacking:  the mammograms, adjuvant radiation and adjuvant chemo, expensive and insensitive gene tests, all part of BC prevention machine, seem to be doing brisk business.   Expensive multiple rounds of adjuvant clinical trials seem to find plenty of funding.

But this 80% ignorance ratio is very troubling.   It means that the demand for MBC research and cure is definitely not being voiced, and probably is not being met.         

I'm going to refer to another thread, where I tried to sound a note of concern amidst universal cheerleading:

http://community.breastcancer.org/forum/73/topic/806372?page=1#idx_23

Beesie,

You are very good at statistics, so forgive Etheridge for being clueless about cancer statistics.   She's a good artist brainwashed by a culture of ignorance and positivity, let's cheer her for being a good artist.   Let's all be kind to each other but do our best to get the truth out and cut down on the 80% MBC ignorance ratio and focus the demand for the cure.

cp418, you are the most persistent researcher and poster.  You are why I'm here with my 2 cents at all.  Heidi, you are my inspiration in so many ways.   Sorry that I'm hijacking your thread.  

jenrio, I'm happy to give Melissa Etheridge a pass on not understanding the statistics.  But where I can't give her a pass on is her lack of understanding of what it means to be BRCA+, particularly if she herself is BRCA positive.  To suggest that changing one's diet and attitude will keep someone who is BRCA positive cancer-free is beyond ignorant, it's dangerous. I also can't give her a pass on choosing to publically criticize Angelina Jolie for her decision.  It would be one thing to say "I was in the same position and I made a different decision and here's why" vs. in effect saying "She made her decision for the wrong reason (i.e. out of fear) and here's the better route that I took".  That's rude and mean and inappropriate and wrong on so many levels. There's no way to justify the way that she said what she said.

As for the ignorance about advanced BC being incurable, I don't see how that affects whether or not there is a cure.  This ignorance is among the general population, and I agree that this is a problem both from a general standpoint (a basic understanding of breast cancer) and particularly from the standpoint that this can make life even more difficult for Stage IV patients who have to deal with this ignorance every day. 

There is nothing to suggest that the medical community or the scientific community is equally uninformed, and I'm certain that they are not. As a general rule the public doesn't decide what drugs get developed; they may choose where to put their donations but rarely do they have any say in how those donations are used.  We could argue that people should be more involved and should insist that more effort and money be put into finding a cure, but most people are not that involved.  And when they are that involved, they might not all reach the same conclusion.  For someone who knows someone who has suffered terribly through chemo (as an example), her greatest interest might in finding less debilitating treatments.  As I've pointed out before, not everyone believes that finding a cure is the only meaningful goal of research. jenrio, that's your position, but that's not how everyone feels. Less debilitating treatments and intervention to prevent the development of breast cancer (for example, stopping all cases of ADH, ALH, LCIS and DCIS from ever developing to become invasive cancer) are also reasonable goals. And until there is a cure, treatments that significantly extend life and improve quality of life would be welcome too. At least I think so.

In any case, wouldn't you think that any researcher working on the development of  any breast cancer drug is aiming to find the cure?  The drug - Tamoxifen, Herceptin, etc..., whatever drug ends up being developed and put onto the market - might turn out to only "cure" a portion of the women who use the drug, but in most cases I'd guess that the objective of the scientist as they start out and go through the development is to find a drug that works on everyone, and in doing so, effectively "cures" everyone who uses the drug.  So are there really two different paths, one for "treatment" drugs and one for a "cure"? 

jenrio, I didn't suggest that Tamoxifen or Herceptin cures those with advanced cancer, i.e. metastatic disease. I think this is one of the places you and I are not connecting on our arguments. I don't think that it's only those who are Stage IV who need to be cured. I don't associate the word "cure" only with Stage IV.

Anyone diagnosed with invasive breast cancer can progress to develop mets and if they do, at that point they have what is currently considered to be a terminal disease. The way I see it, if someone who would otherwise have developed metastatic disease does not develop it because of a particular treatment (Tamoxifen or Herceptin, as examples), that person was in effect "cured" by that treatment.  The disease was stopped from developing any further and the individual did not develop mets.  So they've been cured, right? 

I don't see that the cure of someone who is not yet Stage IV is any less valid than the cure of someone who is Stage IV.  If we can stop every case of Stage 0, Stage I, Stage II and Stage III breast cancer from developing to become Stage IV, then we have cured breast cancer, haven't we?  I appreciate the insensitivity of that statement to those who are currently Stage IV.  I sincerely hope that tomorrow we get an announcement about a new drug that cures even those who are Stage IV, but until we have this drug and it is available to everyone and it works on every different type of breast cancer and every different development of mets, I think the next best thing is "curing" patients before they ever become Stage IV.

So I guess our definition of "finding a cure" is different.  To me, the cure will be found when no one ever dies of breast cancer.  This can happen through the development of a cure for MBC, which we desparately need for current MBC patients.  But over the longer term, this can happen by ensuring that no one ever progresses to develop metastatic breast cancer.  That can be achieved both through treatments that cure lower stage disease, and by preventing the development of breast cancer in the first place.  I realize that this isn't the answer for those who are Stage IV now or those who will become Stage IV within the next short period of time - and that could be any of us - but it may be the answer for our daughters and nieces and it's even more likely to be the answer for our granddaughters and their peers. 

Maybe you agree with me that early stage BC (EBC) should be separate from MBC that MBC gets dedicated and lion's share of publicity and funding and expedited clinical approval process?    Currently, MBC patients seem shoved off to a closet, and getting crumbs of research and publicity. 

Correct me if I'm wrong, I've seen that 90+% of BC mortalities are MBC mortalities.   Early BC rarely kills.  So approximately in terms of saving lives:

prevention for EBC (pEBC) <= Cure for EBC (cEBC) = prevention of MBC (pMBC)  <<< cure for MBC (cMBC)

Tamoxifen or Herceptin or any current drugs are not enough for any of these goals.   Though they are all important for getting us closer to one or all of these goals.   But I don't know what time frame you are looking at, but almost 20 years after Herceptin, the major clinical breakthrough for MBC has been extremely limited (palbociclib, can't think of any other).   So reality is:  we accomplished none of these goals in 20 years.   What makes you think 20 years later, we'd have accomplished these goals, by keeping going the same scattershot direction trying to achieve all 4 goals?

Further more, in terms of time cost and financial cost:

prevention for EBC (pEBC) >=< Cure for EBC (cEBC) = prevention of MBC (pMBC)  >>> cure for MBC (cMBC)

I explained why I think the costs compare this way in other thread.  Will maybe lift it here sometime.

So given the poor return/cost ratio for cEBC & pEBC as compared to cMBC,  the current allocation of resources for these 4 goals were not optimal for achieving our goals.    I will suggest that the 80% MBC ignorance ratio as well as the other thread you started, are both symptoms of a longterm failure to allocate sufficient and optimal resources towards the goal of cMBC.

Correct me if I'm wrong in my little optimization exercise.  Beesie, you mean well and we respect each other based on shared love for logic and desire to achieve the goals.     Whatever you say is fine don't worry about self-censorship.

Beesie, I always find your posts very helpful and I think it also helps that you have been on this board a long time.

Thank you.

Liz

Beesie, Heidi.   We have lot of common ground.   MBC mortality is 90% of BC mortality, expedited clinical trial process for MBC, more publicity for mbc, more money for basic research with a goal to cure, more money for translational research with goal of getting cure quickly through clinical trials.

Heidi's pointing out why MBC clinical trials cost less than EBC adjuvant clinical trials.   MBC patients do the initial tests that gave us the most valuable information of drug performance in vivo and its side effect.   Progressing MBC patients have no choice but to take these huge risks with their lives in search of a cure.   these stage 1 and stage 2 trials are typically <100 patients.    costs 10million and 1-3 years.  

in contrast, adjuvant trials (with the goal of MBC prevention) typically involve 300+ healthier early stagers and take 5 years minimum to track for each of the phase 1,2,3 tests.    Costs 300 million + 10 years are a reasonable estimate.

Say our drug pipeline developes  200 drugs.  100 for MBC prevention (for a subset), 100 for MBC cure (for the same subset).  

1. 1/100 is the true cure (90%+ long term survival, side effect could be horrible as long its not premature death, these kind of drugs require only phase 1,2 before approval),

2. 4/100 is a great drug (80% response, PFS measured in years, side effect could be bad but not premature death, this kind of drugs may require only phase 1,2 before approval),

3. 10/100 are good drugs (60% response, PFS measured in months, side effect need to be tolerable),  These kind of drugs would require phase 1,2,3 to test out.  

4. 30/100 are ok drugs (30% response, PFS measured in months) .  These drugs may be dropped before phase 3.   

So total cost for testing cures for MBC =  1) 1*5million + 2) 4*5million + 3) 10*300 million + 4) 85*2million.   The longest linear time cost is 10 years for the 3) kind of good drugs.   The great drugs and the cure actually would not require long wait.    Bad drugs will fail and fail quick and save us money to keep looking for cure.

Compare this with the total cost for testing a prevention for MBC.

1. 1/100 is the true prevention (99% prevention of EBC progressing to MBC, side effect very tolerable.  these kind of drugs require only phase 1,2,3 before approval, total of 15 years 300million),

2. 4/100 are great drugs (90% prevention, side effect again must be really tolerable, or great drugs will be thrown out for adjuvant use.  this kind of drugs may require only phase 1,2,3 before approval 15 years and  300million),

3. 10/100 are good drugs (% prevention above statistic signficance),  These kind of drugs would require phase 1,2,3 to test out.  (15 years and 300 million)

4. 30/100 are ok drugs (maybe) .  These drugs should be dropped before phase 3.

Total = 1) 300 million + 2)4*300 million + 3) 10*300 million + 4) 85*2million.  + 15 years assuming all trials run parallel.

I hope it should be clear, the clinical trial cost for prevention of MBC is significantly higher than the clinical trial cost for cure of MBC.

The money used to fund adjuvant trial of a single good prevention drug could easily have funded clinical trials for 10-100 drugs for curing MBC.    Is my logic flawed?

You ladies are having a wonderful discussion and I fear my overly simplistic comment will look stupid.



But, I'll do it anyway.



If we had a genie bottle and had 1 wish coming that would be granted IMMEDIATELY-----I would wish for a cure. If we had a cure immediately, there would be no need for anything else. MBC wouldn't matter. Stages wouldn't matter. Because you can cure BC.



However, because the cure cannot be granted instantaneously-----we need stop gaps AS WE PURSUE THE CURE. Research needs a multi-task approach. We need to treat you and extend survival AS WE develop the cure.



I wish the public was more angry that we don't have a cure yet. I believe public pressure would raise the bar on research dollars.

jenrio, I'm not taking it personally.  You are. This is very personal for you. If you said "I have MBC and I am only interested in research that aims to cure MBC and I think that all research money should be spent on MBC", I would understand that and I wouldn't argue with you or debate you on it.  I wouldn't blame anyone with MBC for taking that position.  Your life is at stake.  Of course you might feel this way about breast cancer research.

The problem is that you are not stating it that way.  You are trying to present a reasonable and logical argument to convince everyone else that your position on breast cancer research is the correct position and the one that everyone else - including all medical researchers - should take.  Focus all spending on finding a cure.  But only a cure is specifically for those who have MBC.  Drugs that cure earlier stages (by way of stopping progression so that women don't progress to Stage IV) are not worth the time, effort and money. Or at best, they should only get the crumbs of funding.

I understand that your approach is better for you and for all Stage IVs.  I have tried to explain - numerous times - that this approach is not necessarily better for all women who are diagnosed with breast cancer, and it might not be the best approach to reduce mortality overall, when you consider all women who are currently diagnosed or will be diagnosed, rather than just those who are Stage IV today.  Over the past few days, in this thread and the previous one, I have presented you with lots of data and lots of studies and lots of arguments that try to explain this. To be honest, I've been doing this as much or more for the benefit of other readers than for you, because I understand that you have a very entrenched position on this, and I understand why.

I think I've made my point.  I know that whatever I say or whatever data I present, or however I critique your data, it won't change your mind.  Getting into a back and forth debate about your made up dollar numbers and timelines and success rates on the cost to develop a MBC drug vs. the cost to develop a drug for those who are earlier stage would, for me, be an exercise in futility.  I wish you well, and I admire your passion.  At this point, all I will get out of furthering this discussion is frustration. 

jenrio said:



"Colt45, you get it.   Only let's not be angry, let's understand, let's figure it out, let's educate the public and let the public make informed choices on funding metastatic breast cancer research."



Let's replace 'angry' with 'disappointed' and 'upset'. I don't know if that makes a difference.



But I'll use myself as an example: I did NOT 'get it' until this horrid disease landed on my doorstep.



It isn't that I didn't care about other people getting breast cancer----I had NO idea how prevalent it was and I had no idea just how devastating to a life and the lives of entire families breast cancer is.



I knew of women who 'had' breast cancer. I heard of women getting aggressive treatment (chemo, radiation, mastectomies) because they had breast cancer... But I thought with aggressive treatment, they were cured in almost every case. I thought if a woman had cancer 'come back' after treatment for breast cancer----that it was a different cancer and not breast cancer. I thought these women BEAT breast cancer, but just were extremely unlucky and got another cancer. These are just examples of how stunningly IGNORANT I was. I have no faith that the general public is any less ignorant. Breast cancer was never on my radar as a concern. Never. And without a cure, once you get it---you are in a different world for the rest of your freaking life. I know MANY great ladies (with pathologies similar to my wife) have told me 'it gets better'. I hope so. It HAS to.



To me, it's unbelievable that breast cancer is such a relatively common affliction----and yet the masses are so freaking sleepy about it.



The take home for me about breast cancer before my wife got it was that you may at times need harsh treatment----but that you survive, pretty much all the time. Once in a blue moon somebody gets a crazy aggressive case and it's too late or something. But far more women than my ignorant mind was imagining are dying DESPITE aggressive treatment. I had no idea.



I remember Melissa Etheridge's reaction when SHE was going through treatment: she rhetorically asked "THIS is all we have?"



EXACTLY, Melissa. I can't believe it either. And not only are the current treatment options barbaric, but they're also possibly futile.



But the masses don't know this. They think 'we've got this'.



I still think that stuff gets done when people " have finally had enough" of the problem.



I don't think the world had "had enough" of breast cancer. The average person isn't appropriately concerned. Like I wasn't. Then that same person can't believe just how bad the situation when a loved one becomes afflicted.



I know many women are pissed-----but I think there's a phenomenon whereby women who should be angrier (if for no other reason than becoming an angry, unified voting block CAN get things done faster than being more accepting and passive about what I consider a relatively lax effort against breast cancer) are just being too accepting. Many women are tough. They put up with a lot. But nobody should be accepting this.



I think the gravity of breast cancer is being sugar coated publicly and it's taking the starch out of the fight for a cure.



People just don't know how bad it is.



I remember the M.A.D.D. campaign against drink drivers. There was graphic imagery and they really put the nightmare of drunk driving consequences in your face. They made you smell it.



With breast cancer, I think the smell gets covered up. They don't like to show you the nightmarish consequences. They cute things up. The message isn't scary and people aren't scared as a result.



When's it gonna stop? I am angry that nobody told me how awful breast cancer is. I'm angry my grandfather didn't know. If his generation did-----maybe there's already a cure.



I DO think there needs to be more anger -----if for no other reason than to get the freaking cure machine shifted into a higher gear and into a more urgent manner of moving.



I hear too much of 'lack of funding'. I live in America. There should be no shortage of dollars. Not with what we spend on nonsense. Hundreds of BILLIONS on horsespit. And we just don't have the dollars for cancer research...



Yeah, I'm angry. Sorry for the rant. But I love my wife and I have 2 young daughters and I'm flipping mad about the sugar coated story I've been fed about breast cancer.

Paula, for simplicity of argument, I didn't mention the gray zone between EBC and MBC, the Locally Advanced BC (LABC)which has high risk of metastasis.   LABC like EBC, rarely kill by itself or its none-metastasizing side effect.   So the cure for MBC by definition include cure for LABC and EBC essentially for free.   Due to IBC, you have LABC.   So I hope for the cure for metastatic IBC will be here soon like the cure for other subtypes of MBCs.     Also, I hope you find a good research oncologist specializing in IBC, because IBC is very different from normal BC, may involve different treatment than normal EBC, LABC and MBC.

Paula and Colt45, I thought I was just exceptionally ignorant before my dx, but I guess I really was the 80% too.   For twenty years, I assumed that breast cancer  cure is a well funded war that is already all but won, and expect the veterans would come back from front lines, wounded but alive to live out their days to ripe old age.   

Then one day, I got the call that I may be called to the front and offered the chance to cut my risk (of going to front to fight the real enemy MBC) with adjuvant chemo/mastectomy.   Essentially I'm given tons of ammos that are 20+ years old and shoot lots of blanks and beat myself down to fight the long shadow of MBC.   These adjuvant therapies were developed as "stop-gap" solution 20+ years ago by my father's generation, and since then continuously improved, but it's still a stop-gap solution that has not bring us much closer to the cure for MBC.

What I did not know is: the MBC soldiers on the front lines are using the same 20+ year old ammos plus some newer ammos that shoot even more blanks against a vastly more powerful enemy (compared to EBC).  They have survival odds worse than death row inmates, and without the MBC cure, they will never expect to get off the front-line till they die.    

To top this absurd scenario, a significant portion of EBC folks will end up on the front lines to join the MBC contigent.    They are not much better equiped or enjoy better survival odds than MBC denovo.    The EBC folks thought they were not on the front-line, but the distinction is often artificial.   MBC cast a long shadow.

All I'm trying to do, is to make sense of this reality.   To make sense of why 20 years did not bring us the progress that I expected.   To understand whether 20 more years going in the same direction in the conspiracy of silence will bring us the progress in curing MBC that we all want.   The public deserve a rational and open discussion of the allocation of the research and clinical trial funds in curing MBC and preventing MBC.    

My guesstimate for return/cost ratio for preventing MBC (small) vs curing MBC (big) should be refuted or refined or confirmed by people with better data.   I'm not here to upset people or be upset myself.  I'm here to understand and learn and explain reality the best I could.   Beesie, I appreciate your enlightenment.