Is it a feel-good war?

I haven't heard back on the earlier statistical inquiry.

One problem, which Orenstein does not address, is that our US cancer registry doesn't track recurrence (metastatic or otherwise).

As I wrote on the MBCN blog:

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

• NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
• We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
• We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

Consider this example using myself and my four MBCN friends. I am one of the few people to be Stage IV from first diagnosis. (Most people with metastatic breast cancer have previously been treated for early stage breast cancer.)

Deb and Joanie were first treated for Stage 2 breast cancer and later had metastic recurrences. Ginny and Shirley were treated for DCIS years ago and later had metastatic recurrences. If you saw me and my four friends in a room, you would say "Hey, there are 5 people over there with metastatic breast cancer."

But, if you were to go by the cancer registry--only ONE of us has metastatic breast cancer: me.

When Deb, Joanie, Shirley and Ginny die, THEN they will be counted as having metastatic breast cancer. But, according to the way the cancer registry works, the four of them currently are "offiically" people who were treated for early stage breast cancer. They will not be counted as having metastatic breast cancer until they die from it.

So, as it stands now, Deb, Joanie, Shirley and Ginny are kind of propping up survival statistics. As I said in my post, we can't manage what we don't measure. If we want to change outcomes, we have to change our data collection--it has to be more accurate.

It is not re-assuring when every doctor, surgeon, etc. etc. gives you different information.

Following Peggy Orenstein’s article, she wrote further in The NY Times WHY she wrote her article.  The following are two opposing comments by physicians.  The first is written by radiologist Daniel Kopans.  He is the leading proponent of the status quo.  The second comment is from a public health physician, Susan Marantz.  Obviously, I agree with Dr. Marantz.  Sadly, based on what Dr. Kopans says, I don’t think that this debate is going to end any time soon. ______________________________________________

Daniel Kopans, M.D. MGH

..

Ms. Orenstein’s eloquent description of her views on breast cancer screening unfortunately, contains much misinformation. No invasive breast cancer has ever “gone away on its own”. The New England Journal of Medicine has ignored numerous experts who have called for the withdrawal of one of the papers she cites that falsely claims mammography screening causes over-diagnosis. 1. The authors had no idea who had mammography, nor which cancers were detected by mammography and no scientific validity. 2. Scientific studies show that mammography leads to little if any overdiagnosis. 3. They mixed invasive cancers with DCIS to dilute and mislead. Ms. Orenstein raises legitimate issues about DCIS, but finding invasive cancers when small saves lives. 4. They estimated incidence from a 3 year period soon after Happy Rockefeller and Betty Ford had breast cancer making it completely unreliable. 5. 40 years of data prior to screening show the rate increasing at 1% per year, four times the estimate used by the authors. Since 2006 the incidence has returned to a 1% per year increase confirming its validity. Using this correct number and excluding DCIS, there has been NO overdiagnosis of breast cancer. The authors used the wrong extrapolation and their conclusions should be withdrawn.

Women need to be provided with facts-not the fiction that some are promoting. Mammography screening is not the ultimate answer to breast cancer, but it is here today and saving thousands of lives.

April 29, 2013 at 6:07 p.m. Recommended4

..

Susan Marantz MD, MPH Chicago

..

As a women , a physician and an individual who has a Public Health degree and has worked Public health policy I was ecstatic to read this article. Finally someone has in a well research, touching and well thought out article explained to the women of America the truth about Breast Cancer. Women need to know the risks,the benefit and nature of the disease.

Knowledge is power and fear only clouds one’s ability to make informed decisions .

Women are getting so many conflicting messages. Their own Doctors do not want to be sued for missing a breast cancer so they feel more is better. Companies that do mammography need to pay for their machines so they do what ever is need to get more patients, such as mammography units in department stores so you can get your Mammo , while you shop. The US GOVERNMENT’s own panel advised new recommendations for screening mammography but the US government did not in the end support their own panel’s recommendation and changed their position because political . I tell patients all the time to review recommendations from other countries such as Britain, other European countries and Canada as their health care policy are based on the science and much less so on politics and profits.

I only hope that this informations is disseminated wildly so more women can make the right choices for their health care based on the facts and not fear.

If you are interested in putting your salt behind an organization calling the BS out:  try Breast Cancer Action. They are all about research, not ra ra.

Help this addled brain this morning:  are we saying women who recurred but presented as early stage are not part of the statistical data on 30% who recur? Or is it just underrepresented because they are only reported when they pass?

What I'm wondering is that recurrence rate actually much higher.  If so, I need a nap.  And frankly, it would make all my friend's recurrences seem less fluke like.

I can't get away from this feeling that for the longest time, the medical world in this country 'couldn't be bothered' with the details of breast cancer.



And that the increase in energy spent on it is done with the zeal of a henpecked husband taking the garbage out----only after his wife has railed on him about it endlessly...and NOT because his heart was ever in it.



5 year survival rates in the year 2013 are CRAP! Where are the 10, 20, 30-year survival rates?



Recurrence rates for 'early stage' breast cancer are CRAP! I wanna know about MY cancer. NOT about a clunky demographic whose range is SO diverse as to not even be validly applicable to my case, specifically.



You get these misleading 'positive' stats that lull the world to sleep and kill the urgency regarding the need to have more at hand to control the disease...



...then you get these misleading 'negative' stats that scare the hope right out of people (and by this I mean lumping such vastly different diseases in with one another and telling people: "you're in THIS group"------WELL, you MIGHT fit in that group based on THESE characteristics, but these OTHER characteristics have you with LITTLE in common with those other cases in that group).



It's like you're in a group of grey animals with large ears and you're told what is likely to happen to you based on those characteristics-----but then you realize that bunnies and elephants fit in that group, together... and you can't believe how SLOPPY the grouping parameters are and you want to punch someone in the face over it.



So much about cancer research appears to be done with at best, luke warm enthusiasm.



What else can explain the sloppiness? In the year 2013?



To quote Melissa Etheridge when she learned what her treatment would be: "This is ALL we have?"



I wanna say to someone: "Have you even been TRYING?!!!?"



How do you take THIS long to discover that breast cancer is MANY different diseases? And then how do you continue to lump such different diseases together in survival groups and treatment groups?



It's LAZINESS. Like they couldn't be freaking bothered.



Why do I feel that more time and energy is being spent on remedies for ED?



Enough ranting for now from me.

I agree that the lack of urgency (real or perceived) by the medical community to know more, do more, have more, etc., to date is RIPE for the picking by conspiracy theorists.



I don't believe there's a purposeful movement to suppress better treatments, but I DO think (to some extent) that our best and brightest have been less than tireless in there effort to crack the breast cancer code. For whatever reason, the urgency has been tepid at best.



Still relying on 5 year survival rates in 2013 is damning to any argument that people have really had their collective noses to the proverbial grindstone on this breast cancer thing.



I DO think that's going to change, though.

@EnglishMajor:



Kudos for pursuing answers about that statistic.



Thank you.



I'm still bothered that it's 2013 and www.breastcancerdeadline2020.org is still using that statistic from 1999...



It's wrong of them on at least 2 fronts, IMO.



#1... It's OLD. It's DATED. It's OUTDATED.



#2... It does exactly what we DON'T want done with breast cancer data-------it LUMPS together rather than stratifies. We can't complain that DCIS subjects skew the overall survival data for phoney good results/ treatment progress and then lump all Stage 2 and all Stage 3 together for dramatic effect to scare people by being misleading the OTHER way.



AND did I mention that data is OLD!!!?



I work in a field where data is reported in monthly... and I can get the last 5 years of data from April 2008-March 2013 today and next month I can get that updated 'last 5 years' from May 2008-April 2013. It's rolling data. You want the last 5 years? Got it. Last 10? Got it. TODAY.



Breast cancer, for some reason has to wait YEARS to get a new report on the latest 5 or 10 years of data---which, by the time that report is compiled, the data is already getting old. Why? And I don't want to hear how HARD it is to keep track of the subjects or whatever. It's freaking BREAST CANCER. Try harder. Get 'er done. We put men on the moon. 40+ years ago. Put your big people pants on, breast cancer researchers. We need 10, 20, 30, 40 years of data from tracked subjects. The excuses are pitiful.



Now, the pitiful data collection and report assemblying at least partially explains why Musa Mayer is using data from 1999 text to write something in 2005.



Of course, it's inexcusable for www.breastcancerdeadline2020.org to be using that same statistic TODAY. It's fairly obvious they are going for dramatic effect on their site-----but they're being disingenuous to the public... and frankly the TRUTH about breast cancer is dramatic enough/ scary enough.



If we would all just stop being misleading and tell the public the truth...

Glad I happened across this thread as I was following the similar one in the stage iv forum.

English Major, you give a clear example of how women diagnosed with earlier stage bc who later present with metastases are then not 'counted' as stage iv women until they die of the disease.  I don't think I really understood that before.

The original Orenstein article we're discussing was very wordy, so I read it, then printed and re-read it, highlighting parts.  That helped me better grasp a number of points it made, one being:

Komen trademarked the phrase "for the cure" yet a very small percentage of its funds go towards bc research.  The general public is being swayed into thinking 'early detection' equals cure, which is false!  

People are fundraising, racing, and 'shopping pink' thinking, hey, these small things are making a huge difference and I really feel good about it. The reality of the situation is lost on many of these people who would almost refuse to believe their efforts aren't making as big a difference as they would like to think it does.

LtotheK, where did you get the 2% recurrence rate over ten years for DCIS?



My understanding is that the recurrence rate after a MX will be in the range of 1% - 2% but for those who have a lumpectomy, the recurrence rate is more likely to be 15 % to 20%, with approx. half of the recurrences being invasive. The rate is highest for those with grade 3 DCIS and lowest for those with grade 1 DCIS but I recall one study that showed more than an 8% rate even for grade 1, and again, half of those recurrences were invasive. These are figures for women who were treated with a lumpectomy, and I'd guess that most also had rads.



It's numbers like these - and there are lots of studies on DCIS recurrence that show similar figures - that make me question the claims, such as those in this article, that left untreated, only 5% or 10% or 25% (it depends on the article) will evolve to become invasive. If up to 10% of treated DCIS becomes invasive, I would expect the percent of non-treated DCIS to be substantially higher. Since most DCIS is treated, and since virtually all intermediate grade and high grade DCIS is treated, the simple truth is that nobody knows. The people who quote these figures are really just trying to make a point and they seem to be making up numbers to support their case.



That's the conundrum with DCIS. DCIS itself is harmless, but if not adequately removed, the risk is not insubstantial. That said, I welcome this discussion because I think a diagnosis of DCIS does tend to drive too much fear and that in turn leads to over- treatment - BMXs for women who have a single tiny area of low grade DCIS and (importantly) have no other significant BC risk factors. But we need to be very careful to not paint all DCIS with the same brush; DCIS is a very heterogeneous disease and under-treatment can have serious implications too.

Also, Beesie, 15 - 20% sounds really high to me, and may be local as well as distant?  To be honest, I don't want to know what my local recurrence stats are!!

Hi L to the K,

I was quoted the 20 percent recurrence risk for lumpectomy for DCIS without radiation, by my surgeon, who is a well-know researcher in DCIS (at MSKCC).  The radiation cuts the absolute risk to 10 percent, with additional risk reduction from Tamoxifen. In all cases, as Beesie stated, 50 percent of the potential recurrences are found to be DCIS, again, and 50 percent are invasive.  In terms of absolute risk, my surgeon stated that the risk of recurrence is actually ironically higher than that for a stage 1 IDC.  Of course, risk after DCIS means something different than risk after IDC.  All risk after diagnosis of IDC includes risk of both invasive recurrence and risk of metastasis.  That's a very big difference.  But with DCIS, as stated by Beesie, metastatic disease can result after invasive recurrence.  English Major has stated in this thread that two of her board members (Metastatic Breast Cancer Network) had previous DCIS diagnoses, and later recurrences were invasive that ultimately spread beyond the breast.  Anyway, I say this knowing that recurrence of pure DCIS is really not at all the same as recurrence of IDC.  . 

If we were seeing actual strides in finding cures, finding a preventative vaccine, in the number of women dying from bc being reduced, her salary might be justified. It's just not ringing true.  Too many funds are being poured into education and awareness which seems to only be scratching the surface....year after year after year...

You all taught me a lot, I didn't know that about DCIS recurrence! Thank you for educating me, ballet and Beesie!