Irritating "discoveries"

Shrek4

Ok, I might be over-sensitive on this, but sometimes when I read all these "oh look, another miracle thing that is definitely the shiznit to cure BC/or to show why you got BC" and it fits my situation like boogers in the refried beans (sorry for the visual), I feel like breaking something or try to find those people and choke them a little.

Example. This evening I was surfing the net and as usual, I get diverted from whatever I am originally looking for. So my eyes fall on this article: "Beta blockers may reduce spread of breast cancer".

Oh how wonderful! Makes you want to run to the pharmacy right away, isn't it? Except that... I've been taking beta-blockers for the last 7 years!!!

Leah_S

Early in this bc journey I realized - statistics don't mean it will never happen, there's something new found constantly that a year later has gone over like a lead balloon, and everyone thinks they know the answer (and that's not limited to the medical community).

So I've gotten to the point where I read that stuff and say, yeah right. We'll wait and see.

I was so low risk. First period at age 13, menopause at age 51, first baby at 26 (6 kids in all), nursed all my kids for a long time, don't drink, don't smoke, was never obese and even the few times I was overweight my BMI was never more than 26.5. 

And statistics? Let's see... Mammos miss 10% of cancers. Mammo missed mine. 5% of bc hurts. Mine hurt. 10-15% of surgeries result in infections needing more than a few days of hospitalization. Was hospitalized for 8 days with post-op infection after mx. "Quadrants of bc tumors" showed 6% of tumors are in the lower inner quadrant. You guessed it - that's where my tumor was. So when I was given a 20% chance of mets after surgery/chemo/rads I wasn't surprised when bone mets were found.

So I guess this is a long-winded way of saying - we don't know a lot yet but we have to do the best we can. And be cautious about what we believe when we read about yet another discovery.

Leah

ElaineD

I agree soooooo much. It saddens me that so many people put their faith in these developments. Of course, it is exciting and promising-but there is so much research into this disease, it is completely counter productive to focus on one peice of research, to the exclusion of others. For people like myself, with a stage 1V diagnosis, any research ongoing now, even if it did lead to a cure, would be far too late to be beneficial for us-and some of the saddest things I see is people like myself pinning their hopes on today's research, rather than utilising tried and tested therapies which may extend our lives a little. This is not to say that I don't want to hear/read about developments-but until it reaches at least human clinical trials at phase 2, then it is meaningless for my personal situation. One day there may be a cure which will benefit our children-or it may be as late as our grandchildren-or even later! But, for the meantime, let's keep our feet rooted in reality-I'll continue to hope that this disease will be eradicated, but see nothing, other than a miracle, which will personally help me.

Thanks for expressing an opinion which few of us dare to say, for fear of being classed as debbie downers!

otter

Day, thanks for starting this thread.  I, too, have been on a beta blocker for years and years -- since the mid-1990's, I think.  And, like Leah, I was at low risk of developing BC and low risk of developing lymphedema.  Guess how that worked out....

The problem I have is that I am way too cynical about all those medical breakthroughs and discoveries we keep hearing about.

The reason is because I worked in a health professions field at a large university through my whole career.  (I'm retired now.)  My job involved teaching graduate and professional students and devising and carrying out research projects.  I had to stay up-to-date in my field by reading research articles and attending professional meetings, as well as preparing my own grant proposals to get financial support for my research and publishing or presenting the results of my  experiments. 

So, over those decades, I was exposed to a never-ending stream of miraculous discoveries that supposedly would change people's lives.  Rubbish.

This sounds harsh, but IMHO, the vast majority of research is done to keep the researchers employed.  There are hundreds of thousands of people employed in biomedical research.  Every one of them has to demonstrate every single year (at least once a year) that they are "productive", and, therefore, worth paying. To be "productive" in a research position, you have to come up with an idea that no one else has thought of, figure out how to apply that idea to a problem that others think is important, and generate positive results.  Unoriginal ideas, unimportant problems, and negative results rarely get published.  If the results aren't publishable, they don't count toward that tally of "productivity".  Researchers who aren't productive don't stay employed.

People stay in academic positions because they like what they're doing.  It's not the money -- most of them could do much better in the private sector.  Most of them do get a thrill from having a grant proposal funded, or having a paper accepted for publication.  But, I doubt many of them could argue (convincingly) that what they're doing is really making a difference. 

In the grand scheme of things, very few "discoveries" in biomedical research will change the way diseases are diagnosed or treated.  Many discoveries -- perhaps most -- are not very relevant to the big challenges we face in medicine.  Usually, progress in research is made very slowly, by adding teeny bits of knowlege to our understanding of a problem.  Occasionally there will be a true breakthrough that shakes things up and totally changes the way we look at a problem. That's rare, though.  It's a memorable event, often worthy of a Nobel Prize.

Even though the real, true breakthroughs are rare, we are barraged by headlines telling us that a particular researcher or laboratory has made a major discovery and is on the verge of finding a cure.  More rubbish.

Most of those headlines are press releases coming from a PR machine at the laboratory or the sponsoring institution (i.e., the university).  The announcements are pure self-promotion, intended to attract attention and make that lab or institution look important and investment-worthy.  Sometimes the press releases are written by a reporter who attended a press briefing at a professional meeting and was handed a print-out of "breakthrough reports."  In any case, the press releases make the research findings look much more significant than they really (probably) are.

So, yes, I find all the announcements of "discoveries" irritating, too.  Even more troubling, though, is the naïve enthusiasm with which those discoveries are embraced by desperate patients.  That happens on these boards a lot, and it makes me cringe.

Hope is a good thing.  We all need hope.  But, raising people's hopes falsely is cruel, especially when the goal is fund-raising.

otter

coss

Thank you, otter, for another insightful, informative post and for confirming what I'd long suspected. No more breaking news for me.

Anonymous

That was MY otter who said that.

Tell 'em otter!  You go, friend girl!!!

'Don't piss on my shoes and tell me that it's raining.'

                                 Judge Judy Sheindlin

-sessna1

Mouser

Otter --

Beautifully put!

As a researcher myself, i agree completely. My view is -- if knowledge is a brick wall, most of us researchers are filling in the cement between the bricks. If we're really good, we may get to add a whole brick to the wall. And after many years, there *is* a wall. We do learn, we find better ways to treat some diseases, we find ways to prevent others ... But a lot of the best and most important work isn't being done because the researcher is focusing on cancer, but becauses/he is curious about ... something .. and it may be useful, or it may not. You don't know. You just keep putting in dabs of cement, and hope the wall is growing...

I had a friend with a really rare disease  - Tangiers disease. It's genetic, recessive, and she was maybe the 12th person in the US identified with it. There were so few people with it, the doctors were unable to study it.  So she really really worked to get her family tested, to find other people carrying one copy of the gene (they don't have symptoms) -- which may help her nieces and nephews to not marry someone carrying the same gene. But she thought there might be a cure in her lifetime if she just did this. I wanted to cry, because what she did is so valuable, but it would never do her any good. One year my Christmas card came back "unknown", and since i don't know where her family lives now ...

MrsNice

Hi ladies,

This topic caught my eye because my MIL is always succumbing, and subsequently pushing, the latest and greatest health news.  One year it was flax seed, so she brought us 5 pounds of it.  The next year it was cinnamon.  So she brought us 1 pound of it.  This year it's Vitamin D.  She wanted us to buy it through her wholesale catalog.  We live in SoCal.  I can sit outside for an hour and soak up the sun.  Now I know there's only some merit to that and that Vit D has been a good thing for those who are deficient.  But to assume *everyone* needs to supplement is ridiculous.

Otter - do you mind if I quote your post the next time I have to fend off my MIL and her latest discovery?

otter

I've been wondering if maybe the things I said in my post were too discouraging.  I am a strong believer in the importance of believing, so I hesitated before saying all those not-so-nice things about "discoveries".  But, if anyone here thinks my comments, or the information in my post, might bring some focus to a discussion about medical breakthroughs, have at it.  You have my permission to quote, borrow, or steal anything I said in there.

Still, I empathize with those who are willing to raise money or write checks in support of a particular research strategy.  A researcher might be able to hire an undergraduate student for the summer, buy some lab supplies, or pay for airfare to a professional meeting, because a caring person made a "gift" to that researcher's program.  Also, it's hard to convince granting agencies to pay money to support research on a counter-intuitive idea or a hypothesis that no one has ever considered before.  Every researcher can use a little "seed money" (which is what the small stuff is called).

When the needs get serious, though -- when someone says he or she needs hundreds of thousands, or millions, of dollars -- there'd better be some awfully strong evidence to justify that kind of expenditure, whether it's coming via tax dollars or philanthropy.  There should be a record of previous funding from credible sources, as evidence that other people thought the idea was sound; there should be a strong team of researchers with proven track records working together on the problem; and there should be a growing pile of publications in refereed journals to document the quality of the research effort and the progress that's already been made toward finding an answer.

I wish I had the time and enthusiasm it would take to search the medical literature for people who are, or have been, studing "cancer vaccines" (the subject of the current interest).  There must be thousands of researchers working on cancer vaccines.  I have no doubt that many of those researchers would say they are "on the verge" of a vaccine that can be used in human clinical trials.  "Just another year, and we'll be there."  "We are anticipating FDA approval by next year."  "Another $1.3 million, and we would have the answers we need."

Don't bet the farm.

otter

ailenroc

Otter,

You articulated beautifully what I have been thinking for a while - as an academic who has lost all desire to produce the annual publication(s) post bc - the bulk of academic publications really do not make much of a difference in the real world. They are mostly self maintenance or self-enhancement on the acedemic's part (getting and keeping a job, and getting salary increases, job security, and promotions). I have been weeding through a few thousand med journal articles since my diagnosis on various bc topics to learn more (which frustrates the hell out of my doctors) and am discovering that so much of the research published their - the latest scientific discovery - is just what it is in other fields: insignificant research that is published over and over again by the same researchers / authors with slight variation in the title and one or two changes to the variables just to justify cranking out another pub for one's CV - that is, for one's self enhancement - not for the greater good.

MontanaHiline

These postings are very interesting to me because I just finished reading "Wrong" by David H. Freedman.  The subtitle is "Why Experts Keep Failing Us and How to Know When Not to Trust Them".   The information presented in the book fits perfectly with the discussion you are having.  I was moderately gullible before reading the book but am quite cynical now.  It is wise to have a healthy skepticism about "experts" and their "discoveries".

MiaLombardo

I dont think they really know - i hope the taoxafin stops any stray cells from spreading - but if it doesntthen i guess i jjust suck it up and try to live - i hope it gets better for you.

Annabella58

Well, ladies, this is a very good thread to stumble upon today!

Just had my 6 month visit to onc who is pushing me like mad to go get a bone density scan so he can prescribe bone drugs "that will give me extra protection"....I do not want to take a bone drug unless I am osteoporotic already and I'm not.  I will go get the scan, but am already honing up my arguments as to why I do not want to take one (SEs, new study, etc., etc.)

I think we can definitely get "over prescribed" these days.  I read the study, it shows promise for bone drugs, but all of them say (latest one, June 2010) MORE RESEARCH NEEDED BUT SHOWS PROMISE.

I'm not a damn guinea pig!

Bravo ladies.