Is it a feel-good war?

jessica749

Okay, I'm starting a new thread on the article that was in Sunday NY Times magazine. Read it here:

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=all

I think it's an article well worth reading and I think it make several important points:  the conflation of DCIS stats with invasive cancer stats that make it appear a battle is being 'won' when actually, little movement has occured over the years with regard to deadly breast cancers.  (Yes, more surviving but more diagnosed with bc that is dcis or never a life threatening cancer...). The face of bc with the pink ribbon campaign disappears Stage IV people, little money-relative to what is raised-is going to research cure, and mammograms don't really catch fast growing deadly cancers that much earlier.  And miss alot of cancers. And it makes some other good points.  I hope I represented them accurately above. Written by journalist Peggy Orenstein, herself diagnosed with bc (twice).  I just think everyone who is interested in the issue should read it. If you want, then, 

Discuss.

voraciousreader

Over on the Stage IV forum, they've been talking about the article since it appeared on the NY Times website on Thursday! People all over the Internet are talking about the article! Great buzz!



I commented as well about the article on Dr. Weiss's discussion about the mammography debate on BCO's main page!



I think Orenstein nailed it! I hope the article resonates and is heard loud and clear! SCREENING mammography saves lives but not as many as most people think! LISTEN UP EVERYONE! All women deserve better!

jessica749

Great, thanks for bumping this up. Wanted to comment and discuss myself, didnt' know we were free to do that in Stage iv forum if not stage iv ourselves....with all due respect.  Yeah, so I just want everyone reading it. Where else is it being discussed? I'd like to tune in!! (Besides the Stage IV forum and comments page of the Times article????)  I'll check out the main page of BCO and the Dr Weiss article about mammography  for your cmmments...

I saw the Pink Ribbons documentary last year which was very very critical of the Komen org and it's corporatization/branding of the disease.   

voraciousreader

Just google "Orenstein mammography" and enjoy! Glad you posted it here! It needs to be read!!!!



The comments all over the net are positive... Could this article cause the tide to change? Will it lead to enlightenment and action? I can only hope and pray that it does!

EnglishMajor

Hi all,

I posted this in two prior threads here, but just in case it wasn't seen there.

This is a summary with some commentary from the metastatic breast cancer network (www.mbcn.org):

http://mbcnbuzz.wordpress.com/2013/04/27/our-feel-good-war-on-breast-cancer-mbcn-responds/

ReneeinOH

Makes me want to scream--more research! more research!  Stop the PR campaign.

voraciousreader

bump for LtotheK

Colt45

Is this statement accurate?



"For Stage II and III, one-half to two-thirds will develop metastatic disease within five years"



Why is my wife being told that the odds are strongly in her favor?



What's the truth?

Elizabeth1959

I saw that same statistic and was horrified. I know that can't be right. For one thing, as the article pointed out there are many types of breast cancer. Er+, Luminal A and B, her2 neu+ and triple neg. they all have different statistics. I have plugged my numbers in different calculators and it looks like 10 year survival should be 85%.

I loved the article and couldn't agree more. I want research on prevention and treatment of primary breast cancer and cure for metastatic disease. The rest seems like nonsense. I wish there was some way to effect change and put all that money towards research where it belongs

Lily55

Colt - no not true, ignore statistics as they distort reality according t how they are presented

gillyone

Jessica - thanks for posting information about the article. Though nine pages long, it is worth the time spent reading it. Englishmajor has also linked a summary of the article.

Colt45

Reading English Major's post, it appears that the Metastatic Breast Cancer Network (and not the NY Times magazine article) is responsible for this comment (



"For Stage II and III, one-half to two-thirds will develop metastatic disease within five years"...



It doesn't sound accurate----and it's a shame MBCN apparently said it. Shame on everyone spouting inaccurate garbage (I'm looking at YOU, MBCN).



We want the TRUTH!



It's a shame MBCN provided that commentary. It compromises the right things about that article's valuable message.

EnglishMajor

For those questioning the Stage II and Stage III comment...

It is not an MBCN statistic.

It is direct quote (as so cited) from the National Breast Cancer Coalition's "Looking at Breast Cancer by the Numbers"

http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates/ByTheNumbers.html

In doing a Google search, I've found the same statistic cited and attributed to: 

2—Roses, DF editor, Breast Cancer, Churchill-Livingstone, 1999 p. 511.

That material was posted online in 2003.

I've contacted that author and will share a repsonse if  one is forthcoming. In in interim, I have removed that statistic and noted it is disputed and that an update/clarification will be provided if available.

If NBCC (and by extension) MBCN used an outdated statistic, then I will certainly correct this and offer an apology.

However, I fail to see how MBCN's commentary in any way undermined the message of the article, which frankly, wasn't particularly positive.

voraciousreader

In today's New York Times, there is ANOTHER article about Peggy Orenstein who wrote the Magazine article and she explains WHY she wrote the article:

http://6thfloor.blogs.nytimes.com/2013/04/29/behind-the-cover-story-peggy-orenstein-on-rethinking-her-stance-on-mammograms/

Anonymous

Has anyone found any information about what percentage of women who have DCIS go on to develop IDC, with treatment, and without treatment?

voraciousreader

Sunflowers...nowadays, once a patient is diagnosed with DCIS they receive treatment.  So there is no definitive data on EXACTLY who would go on to get IDC WITHOUT treatment.  Did you read the new article that I just posted from The NY Times regarding WHY Orenstein wrote the article?  She specifically states that's why it's a conundrum!  No one knows!   Grrrr......

LtotheK

To answer Sunflower's question, though, there are stats that point generally to your question.  About 2% in 10 years will get a recurrence.  I know there have been studies on which cases become IDC.  The issue, as VR points out is, no one knows which.  My feeling is, I was in a tiny minority of women who got the disease at the tender age of 39. I don't have a sense of overtreatment, even though I know I likely didn't benefit from the chemo I was offered, or even from the mammograms I seem to get every other day ; )  It's what we have.  Yes, we need more research.  But cancer is also widely known as the most elusive and mysterious disease there is.

Anonymous

LtotheK I agree with your words: "But cancer is also widely known as the most elusive and mysterious disease there is."  which is why, even after reading th article, I still question the concept of "over treatment."

Colt45

@EnglishMajor:



I've always felt that if one isn't being accurate themselves as they try to dismantle another party's claims (by saying the other party is being misleading or inaccurate)-----then you just have 2 parties not worth listening to.



My issue is whether the statement: "For Stage II and III, one-half to two-thirds will develop metastatic disease within five years" is true or not.



If it's NOT true, then any party presenting it as true is ALSO being misleading to the public (just like the parties who paint too rosey a picture regarding BC survival are)... and we are left with no one to believe because everybody is misleading.



Misleading claims from both sides could cause people to just dismiss the entire discussion rather than weed through everyone's dubious claims...



That could hurt the original message, IMO.



Sorry so choppy and I don't know if I'm being clear.

Colt45

@EnglishMajor:



Thank you for citing references for the following:



"For Stage II and III, one-half to two-thirds will develop metastatic disease within five years"...



The 1999 reference date and the 2003 'posted on line' dated seem DATED.



I guess my question is: is the claim OUTDATED?



If you find anything, please do share it. Again, thanks for trying to help.



Bless you.

LtotheK

I think the issue at hand is, Komen has participated in making BC seem treatable and preventable.  My darling friend's Stage II cancer has come back all over her bones, I'm crying as I write this. The public face of this disease is the happy Stage I survivor (the inclusion of DCIS in overall survival statistics does perpetuate this notion). 

Perhaps the stats aren't so grizzly as that for Stage II and III, but I will say this:  the public does NOT get it. When my colleague's Stage III cancer came back, everyone was puzzled. Truthfully, statistically, it was a probability, not possibility.

gillyone

LtotheK - sorry to hear about your friend.

You are right - the issue is Komen's attitude: that early detection is all that is needed and if we just get our mammos we'll all be fine. As women we are all overly-aware of breast cancer to the point where we have been lulled into a false sense of security. I was "aware" but totally ignorant about BC when first diagnosed. I remember telling my son that well, if anyone has to be diagnosed then at least I am relatively young and in good health and that at least it's breast cancer with good outcomes (this was before I was staged and I looked online at stats showing 98%  5 year survival rates for stage 1). What a load of rubbish. Let's be done with awareness and start on education (which needn't cost the amount of money Komen is willing to spend on awareness) and put money into research.

Lauriesh

Elizabeth, you said that you had a 85% chance of being alive in 10 years. That is a different statistic than whether an early stage person will recur.



I was stage 2 and devoloped mets 5 years later. There is a good chance I will make 10 years from my original early stage diagnosis. I would be included in this 85% chance of being alive eventhough I have metastatic cancer.





Laurie

Lily55

God this thread is so depressing.....i am one year out....

LtotheK

Thanks, gillyone, my heart is totally broken. 

Cancer is complicated. When I got my second opinion, I asked why I couldn't just do chemo if it came back.  Her reply "Because then it's in all likelihood fatal under those circumstances."  That was when I "got it". I'd been at it for two months at the time.  Cancer is one tricky you-know-what.

Colt45

@LtotheK and gillyone:



I hear you. The article that Peggy Orenstein wrote was terrific. It did not include the dubious figure for Stage 2 & Stage 3 women developing metastatic disease within 5 years. I support Peggy Orenstein.

It baffles me as to why we don't know more about breast cancer by now... and, IMO, some pretty rudimentary findings have only been made RECENTLY. E.g., tamoxifen has been administered for decades---yet only this past Dec'12 did our best and brightest conclude that women could have an added benefit from staying on it for 10 years as opposed to 5. Shouldn't we have already known that!!? And still no answer on taking AIs for 10 years... when are they going to get started on that? Herceptin is fairly new. Breast cancer has only been around for THOUSANDS of years. I can't believe we haven't graduated from 5-year survival rates, either. FIVE YEARS? My wife needs a FORTY-five year survival rate.

I am all for the wave of discontent washing over Komen and whoever else propagates horsespit survival stats that lull an already sleepy public into thinking we've got this breast cancer thing in check. My wife had pain following her 1st mammo at age 40 and was already stage 2b. The mammo didn't detect the tumor, either----but it DID make her feel the lump afterwards (unintentional benefit of the mammo). The science of the mammo failed my wife. The physical wringer her breast was put through, though, tipped her off. Without it, she'd still be unaware. I know mammos aren't enough. Hell, the fine needle biopsy was negative. And an MRI missed a satellite foci. I hate the over reliance on all the screening tools!



It's amazing to me that we haven't come further.



We always get "We, you DO realize that breast cancer isn't ONE disease"....



My problem is that we didn't even know THAT until recently.



SOLVING Rubic's Cube is one thing. But not even understanding basics about the job (e.g., gotta have all the same color on each of the 6 sides) is another thing.



It's like breast cancer has been known for millenniums (the Egyptians wrote of it thousands of years ago)-------be we just got around to addressing it recently. Why the delay?



It's like your kid's room is a mess----and their excuse for why it's not clean yet is because it's very, very messy.... SO THEN START CLEANING IT ALREADY!!!!



And then on top of the lax 'call to arms' against breast cancer that our medical community apparently has had over the ages, you get the bullspit smokescreen of misleading survival stats to cover up the failure we've been at treating the damned disease(s). Which, then, of course, leads to less urgency-----which has been the $$&!! problem from the start.



I get the anger. I HAVE the anger.



I just hope otherwise well-meaning entities aren't trying to fire back at the Komens by artificially making things sound scarier by selling stats that are possibly also misleading.... E.g., "For Stage II and III, one-half to two-thirds will develop metastatic disease within five years"...



I don't know it that's true. But it's terrifying to the point of being hope-crushing for a husband of a wife who is Stage 2B.



I just hope people aren't fighting positive misleading stats with negative misleading stats.



We should just fight positive misleading stats with the TRUTH. The truth is enough.



JMO.

LtotheK

Colt, your dedication to your wife makes me feel safe.  My husband is quite the same.  With people like you, we will push, at least, for better advocacy.

Lily55

As stage 3 i am feeling haunted by these statistics even though i know they are out of date and i have a healthy disregard for statistics......

jessica749

Colt45-you cite a quote out of the blue. Where is the quote from? What is it's source? I don't see it/remember it from the Orenstein article.

Colt45

@jessica749:



My apologies. I have been sloppy today because I have been anxious.



That quote is not from the Orenstein article. I want to make it absolutely clear that I read the Orenstein article and I support the Orenstein article.



The 1st time I saw that quote is when fellow member EnglishMember shared a commentary on the Orenstein article that MBCN made. But MBCN isn't the originator of that stat-----as EnglishMember explained; rather it's a stat from a reference in 1999 that also appeared online in 2003. That stat currently is touted at www.breastcancerdeadline2020.org-----but it's an dated stat.



If you would like me to edit my posts in this thread so that people aren't confused by my rambling, I understand. Just let me know.



Sorry for the confusion.



EnglishMajor did a good job providing links for the references to that quote earlier in this thread. I regret that I stepped on the proverbial rake and stumbled all over this thread. Though I'd still like to know what's behind that stat/ quote/ claim. It doesn't sound right...

Colt45

@Lily55:



I recall the SEER data from 2005-2009 claimed that women in their database with regional disease----which is anyone with any number of +nodes (right?) who could have any ER status, any Her2 status, any grade, any size tumor----had about a 84% survival rate at 5 years.



I know that's not necessarily recurrence free survival----but it ain't metastatic necessarily either...regardless, you undoubtedly have less +nodes and a smaller tumor and a less aggressive tumor and a more favorable receptor status than a lot of women in that cohort. That's a BIG range. And you could be on the favorable end of it.



We are big fans of you here.



God bless you.