NYTimes article--kind of depressing

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AnneW
AnneW Member Posts: 4,050
edited June 2014 in Life After Breast Cancer

Gina Kotula wrote a really solid article for the NY Times yesterday, about the current status of cancer research, survival, and the misconceptions involved.

Read at your discretion. If you are in a fragile place right now, maybe you shouldn't. If you're in a place that rails against pink ribbons and all the nice-nice about cancer prevention, then go for it.

http://www.nytimes.com/2009/04/24/health/policy/24cancer.html?partner=rss&emc=rss

You may have to register for the NY Times, but it's free. If anyone has problems with the link, let me know and I'll just copy and paste the whole article.

Anne

Comments

  • idaho
    idaho Member Posts: 1,187
    edited April 2009

    Man- That is very abrupt, but it has been something I have had an inkling of since I started my journey only 3 months ago.  I wish they would do a study on how long all these drugs etc. REALLY do extend your life.  I was surprised that on adjuvent online that my doing chemo would only prolong my life by 290 days.  That's about how long chemo would have been.... So do I want those days to be awful with chemo side effects, or do I want them to be "well" days?  Thanks for the facts. Tami

  • Sierra
    Sierra Member Posts: 1,638
    edited April 2009

    tks for posting this

    Hugs, Sierra :)

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    I think the article is wrong when it comes to breast cancer, I really do.  First of all, survival rates keep rising for bc.  The article seems to be saying not that we haven't made progress against cancer but that we haven't made progress against metastatic cancer.  Well, progress against early stage is not nothing.  And i think when it comes to bc, people are living much longer with mets.  We need a cure, yes, but I kind of think it is sloppy reporting, especially when the reporter fails to mention that survival rates for breast cancer have been climbing.

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited April 2009

    Anne,

    Thanks.  

    High Sierra ... just had to say that.

    MOTC .... Maybe it's time to acknowledge that research, like our financial system, is broke and needs help.  It did hurt to read it, but I had come to similar conclusions on my own.  To everything there is a season....maybe it's a season for light on this subject.   

    It's not a new issue.  I remember doctors telling me that they've been disenchanted with the NIH for years.  Then there's all the problems at the FDA that need housecleaning.  But I think if they could cure it, they would have done it by now.

    The science of medicine in US is relatively young according to my brother-in-law working on his paper.  Late 1800 to 1918 is when it was born here....before that doctors went to Europe for this education (mostly Germany, France) and brought it back to the US.  The Science went through a lot since then. But for all of the money spent the US is still low on the totem pole for quality relative to resources expended according to WHO.

    I think that's what I was reading into this article and that's not such a bad thing to air out. 

    Best wishes to all as always.

  • otter
    otter Member Posts: 6,099
    edited April 2009

    Anne, thanks for posting this. It's a very good article--honest, accurate, no punches pulled. Not the sort of thing some of us are wanting to hear, though.

    The article makes 3 points that I think are important.

    First, the author mentions the lack of support for high-risk studies:  "And for all the money poured into cancer research, there has never been enough for innovative studies, the kind that can fundamentally change the way scientists understand cancer or doctors treat it.  Such studies are risky, less likely to work...".

    Those fundamental changes in our understanding of cancer come through "basic research".  But, basic research does not lead directly to a "cure". Progress from those types of studies is excruciatingly slow; and the results are meaningless to the general public unless they are given a "spin" that makes them sound more promising and relevant than they really are.

    Second, the article says, "...the perception, fed by the medical profession and its marketers, and by popular sentiment, is that cancer can almost always be prevented. If that fails, it can usually be treated, even beaten."  And, "Yet the grim facts about cancer can be lost among the positive messages from the news media, advocacy groups and medical centers, and even labels on foods and supplements, hinting that they can fight or prevent cancer...." 

    We all know of women on these boards who were devastated to learn that, despite a healthy diet, regular exercise, etc., they still developed breast cancer.

    I think the most important message of the article is this:  Most people simply do not appreciate the complexity of cancer biology.

    It would be fantastic if finding a "cure" for cancer was as simple as making a breakthrough discovery, or assembling some "dream team" of scientists. That's not likely to happen, though. The problem is just way too complicated for it to be solved that way.

    Actually, great progress has been made against several types of cancer.  The death rates from stomach cancer, cervical cancer, and non-melanoma skin cancer have dropped significantly in the past 50 years.  Here is a graph showing the mortality rate from cervical cancer from 1950 through 1994.  It's from the U.S. gov't website that keeps those statistics (http://www3.cancer.gov/atlasplus/charts.html):

    On the other hand, the mortality rate from breast cancer really didn't change very much over that same time interval:

    But, that second graph is misleading, because the data ends at 1994.  A lot has changed since then, such as the widespread use of mammography to screen for early tumors, and the realization that ER and HER2 are critical to tumor behavior and treatment. 

    So, although I really do wish there was a cure, for myself and for all my BC sisters (as well as for those who will come after us), the fact that a cure has not been found does not surprise me at all.

    otter 

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    I don't disagree with you, otter.  I hate the whole lifestyles will prevent you from getting cancer thing.  I've been a vegetarian since 1983 and physically fit my entire adult life so I know thats bunk.  People like to find a reason to tell themselves they are safe, they aren't like those suckers with cancer.

     And I agree that it is unacceptable that people still die of cancer.  but how can you write a column like this without mentioning herceptin?  Hormonal therapies?  Increased use of breast MRIs and now digital mammograms?  15 years ago the landscape was very, very different.  Maybe the advances are incremental, as the article says, but I know I would not have survived this long if I had been diagnosed 20 years ago. 

  • nosurrender
    nosurrender Member Posts: 2,019
    edited April 2009

    I agree MOTC.

    I think the article is on target for metastatic disease, but I do not think it is accurate for early stage cancer. There are many, many studies and living proof of the benefits of herceptin, AIs, etc. The most exciting find recenty is the use of Zometa as a prevenatitve as well because the source of all mets starts in the bones and Zometa might make a real difference if used prophylactically.

    The woman in the article had a delayed diagnosis, and her tumor was discovered when it was "walnut size." It goes on to state she was not on any endocrine therapy which leads me to believe she is TN. A walnut size TNBC is an aggressive cancer whether it went to her nodes or not.

    It is true that  the studies that show results in the metastatic setting stating "disease free survival" are misleading. The doctor's suggestion for changing the wording is a good one.

    I think the article shows that we need better treatment for metastatic cancer. It shows that no matter how "well" you think you live, you can still get cancer. And if the subject of the article is any indication, it demonstrates that early detection is our best chance. Maybe if her "cloudy" mammo had not been ignored she would have a better prognosis.

    You can tie all the pink ribbons you want around it. Cancer is ugly, sneaky, does not play fair and is a true enemy. If you were to read the breakdown of NIH funding for cancer vs other diseases, you would be shocked at the disparity. Maybe if we kept the space shuttle home for a year and used the billions of dollars it takes to launch that giant Jiffy Lube in the sky and spent it on true research, we would get someplace.

    I like the writer of that piece. I look for her reports in the Times. I always wondered if she herself is a survivor.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    I actually saw myself in the woman in the article, without the mets part.  As a vegetarian, in good physical shape whose diagnosis was delayed by mishandling, we have a lot in common.  My tumor was 2.9 cm.  Walnut sized?  Only difference was that I was node-positive and er/pr+, which I would say is a wash.  It could be me.

  • Isabella4
    Isabella4 Member Posts: 2,166
    edited April 2009

    This was a very good article. It shows that all this money that they try and extract from us is pointless giving, we have just not hardly moved forward despite all the cash collected. 

    I will never subscribe to research...I may be wrong... but thats how I feel. Every week, thru my door come letters begging for cash, I get 'phone calls asking for donations ( I just put the 'phone down on them, because I am heartily sick of this trying to make me feel bad) I feel bad enough, I have breast cancer, for heavens sake, just leave me be.

    I think the only way they can latch on to my name and address is from the hospital I attend. We're just off into the 'walking' season here, 'pink' walks being the main ones. I have asked my DD NOT to walk on my behalf, nor give any cash for stupid pink things. This disease ain't all fluffy and  pink....its vicious and black, and it takes our sisters away.

    I cannot see an answer to it at all, there MUST be one somewhere, but I feel money isn't going where it should.

    Some years ago my DS worked for a big heart charity, collecting bags of unwanted goods from doorsteps, to be sold in the charity shops to turn into money for heart research. He told me the women who took in the sacks for sorting fell on them, creaming off what they fancied, the cheap stuff going into the shops. The managers all ran around in BMW's, all paid for by unsuspecting people doing their bit and donating....so, this puts me off giving any cash, other than to the local hospice, or cancer nurses.

    I think the governments should all get together and sort this out, and leave out bothering people for cash. I have been asked 3 times this month, when out shopping, would I like £1 adding to my bill 'for cancer research', and even eBay are on it now, wanting to add £1 whenever I use Paypal.

    This is a much more complex and involved problem than is solvable at this moment in time. Throwing money at a million different schemes and projects is like pi**ing in the wind to me. 

    Isabella.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    I totally disagree.  All the money "they" (They is us, by the way.  All the activism and fundraising to fight breast cancer has been organized by women who have or have had bc) have raised has saved my life.  Before the Komen Foundation and others there were no hormonal meds, primitive chemo protocols, no sentinel node biopsies, no breast MRIs or digital mammograms, no herceptin or taxol or taxotere.  

    Its not good enough, but lets not kick sand in the faces of the sisters who have come before us and done so much for us. 

  • vivre
    vivre Member Posts: 2,167
    edited April 2009

    Isabelle, I totally agree that all the billions being spent is mostly wasted. I too will never take part in a walk, unless it stresses prevention. Yes, there are some people who think that they are "healthy" as I did and who do not have the "risk factors" who still get cancer. However, there has to be a reason for in the increase in cancer. Thirty years ago, 1 in 20 women got bc, now it is 1 in 7! If it was all about the hormones, then why why didn't women get as much breast cancer in previous decades? Women have always had hormones! The truth is, we live in an increasingly toxic world. Even if we eat "vegetarian", where is the guarantee that our food is not tainted? We eat a lot more processed food than generations before us did. Look at the junk they put into this stuff. Our land has been been so over farmed, that our soils are depleted of the nutritents to grow good healthy crops and to feed us and our animals. Our bodies are sorely lacking in all the elements we need to properly fight disease. And we are bombarded by toxins in every product we use, in our water, in the air.

    I think the sad thing about this article is that it makes readers feel hopeless and helpless. Articles like this, which do not give a lot of specific data to back up comments are dangerous. It implies that people might just as well as live with abandon, because you will get cancer anyway. It makes me furious. The lack of studies on lifestlye changes is appalling. The lack of studies on supplements is appalling. When these studies are done, they only measure one thing at a time. They do not do studies that including lots of lifestlye changes and taking lots of supplements and antioxidants. They take them one by one, and when the results are lacklaster, they simply say this is useless. They need to spend the money comparing people who do all these changes instead of just comparing people who take a drug vs those who do not.

    So I will not give up on my conviction that the changes I have made will prevent a recurrance. I intend to do anything and everything to make my body as strong and healthy as possible. I use to think I was healthy, but I can now look at dozens of things I was doing that was stressing my immune system to the point it could not fight off cancer cells. Even vegetarians do not always have a healthy diet. They sometimes overdo the sugars and pastas, and processed foods , which are just as bad as  too much meat. Moderation in everything is the key.There are a lot of toxins in our food supply, no matter what we eat. While exercise is healthy, too much of it puts a lot of stress on our bodies. Prime example, Lance Armstrong, who got cancer in the area most stressed by hours on a bike. Also, people just llive in a much more stressful world today than our grandmothers did, with less emotional support from others. Stress is a huge component to causing cancer. It is all these negatives, piling up, that gets us into trouble.

    So do not let this article make any of you feel you can do nothing. You can always try to prove the "experts" and alarmists wrong by committing to a healthier lifestyle. That is what I intend to do.

  • Member_of_the_Club
    Member_of_the_Club Member Posts: 3,646
    edited April 2009

    I have trouble believing the statistic that 30 years ago 1 in 20 women got bc.  I don't remember the stat being anything close to that low in my lifetime.  I do know that 30 years ago they were unable to detect DCIS.  Only a minority of cases of DCIS will become invasive. Unfortunately, they don't know which cases those are so they have to treat all of them.  the point is that once they started including DCIS in cancer stats, of course the numbers are going to change.

  • crazy4carrots
    crazy4carrots Member Posts: 5,324
    edited April 2009

    Thirty years ago, the statistic was "1 in 14 will get bc".  I remember it well, because, of 15 women in whose group I belonged, one of them was dx'ed (and is still alive and thriving, by the way!). I became the second in the group.

    I think it's unfair to suggest that billions have been wasted on cancer research, considering that cancer is well over 200 different diseases (and think how many bc variations there are) and incredibly complex.  Back in Nixon's day, that prediction would never have been made with the knowledge about the disease that exists today.  There have been so many significant advances made within the last 15 years, and I can cite my 2 sisters dx'ed with ovarian ca who are also alive and thriving.

    I won't give to organizations or companies who say they support cancer awareness.  Sorry folks, we ARE all aware.  I also understand the medical profession and marketers who tell us cancer is preventable, it can be beaten etc.  If they didn't, no money would be raised and I can't think any of us on this forum would want to deal with an oncologist or a pcp who said "Sorry, there's no hope for you".  However, I do NOT forgive any who say cancer is preventable if you do this, and don't do that.  Nor would I forgive any who say that cancers caught early can almost certainly be cured.  That's a marketing fallacy, its only saving grace being that it might help increase early testing.  I do agree that there are many things we, as individuals, can do to help ourselves, and I sincerely wish complementary and holistic health care and advice would be offered at every cancer clinic in North America.  Well, maybe some day...

    Finally, I personally know several scientists working in hospital and university labs who are deeply involved in cancer research, and WHO DO NOT WASTE MONEY.  Oh, and they haven't devoted their lives to cancer research because there's lots of money in it for them.  They're exceedingly clever and could all be driving Mercedes and living in mansions if only their brains and their passion for science had taken them to another profession.

    Respectfully, Linda

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited April 2009

    MOTC--first to say I'm glad always to see you here and enjoy what you write.  I'm always glad to see many familiar names here.

    A few thoughts if I may....I usually separate most of the medical profession from the marketers, etc.  It was my experience that the medical profession usually found the business of medicine distasteful and that it gets in the way of the work they really wanted to achieve.  That said, a system of management is necessary...it's the efficiency and the intent of the management that makes the difference.  

    Can I say too that I get nervous about the definitions selected ... medical professionals select them to help organize their work and research....to better communicate with each other.  Insurance companies take those definitions and use them for reimbursement of those services. This is where definitions become muddy and I really despise when they are used against the interest of the patient.  I don't mean in a truly limited resource scenario and difficult choices need to be made, but in an 'add to the bottom line' scenario.

    In my opinion, this too is when they put the burden on the patient's shoulders and use it for an excuse to deny reimbursement or include in the terms for "pre existing conditions".  This must change. 

    I'm a reluctant volunteer this year again for Komen.  The pink makes me uncomfortable.  I know there are abuses of the money.  But I go for the women who need support like I did when the first round hit me.  And I go because my doctor donates his time (without charge) to give exams and educate women to prevention...and because he always answered my panicked questions with patience and compassion.  You can't put a price on that.

    My hope is that articles like this one can generate debate on how and where the money is best used....and maybe it will find its level like water.

    hugs to all 

  • ihatesnowihatesnow
    ihatesnowihatesnow Member Posts: 859
    edited April 2009
    here is a worthwhile research group http://boinc.bakerlab.org/rosetta/   they are not asking  for money they are asking for  computing time ....but you do not have to join just to read about the research  or look at the message board 
  • AnneW
    AnneW Member Posts: 4,050
    edited April 2009

    MOTC, you may well have survived 20+ years ago. My mom had Stage IIIb lobular with multiple nodes. She had surgery and cobalt rads. No chemo. She lived 20 years, and died (20 years ago) of colon cancer plus breast mets.

    We still don't know who really needs the chemo and who doesn't. We're not that sophisticated with cancer cell biology, as the article states, despite OncoType and the limited gene testing that we have.

    Is our overall survival rate for early stage cancer that much better? We may have longer survival because we catch it earlier, thus giving us more years? Just a rhetorical question.

    Research is vital, but bc research has become politicized and media-hyped. That brings in the $$, but are they being well spent? I had a student ask why no one did the same for pancreatic cancer, which killed her mother. I didn't have the answer she wanted to hear. I'm not saying the all the research in all the labs out there is bad or misguided, but perhaps fundmentally we're off track. Then again, we may be on the right track, and it will just take so darn long to get where we need to be. I certainly do not know.

    I think we're 1 in 7 now? I remember the 1 in 14 and the 1 in 9 days. I yearn for them.

    Anne

  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    That was a good article Anne...thanks for sharing.

  • Blundin2005
    Blundin2005 Member Posts: 1,167
    edited April 2009

    Anne--I've wondered about this too.  My dad's cousin had BC in her 50's, a mastectomy and lived to her 80's when she died of vascular/heart disease.  And if there were records kept then, I don't know either....not my field.  I see this as a difficulty though to read stats which is a reason I accept them as a benchmark.  No easy answers....just keep on moving forward....small steps as they may be.  Thanks again for the article.

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