Does Anyone Know Why We Are No Longer to Do Self Exams?

[Laurel]

I recall in junior high being taught how to do self breast exams. We had the demonstrations and the charts, but we also had a dummy bust with breasts. We had to perform an exam on the dummy's breasts to find various types of lumps. Some were small, hard, and easy to find. Others were just dense areas that were diffuse and very difficult to locate. Monthly breast self exams were a mantra we embraced for decades. What about the "feel your boobies" campaign for women? Was that all schlock?

I must say I am utterly perplexed as to why self exams would be no longer be recommended, especially in young women in whom it is the most common manner of detection. Can anyone shed some light on this? I simply cannot fathom the reasoning behind such a recommendation. Ideas?

[WolverineFan]

Laurel...I am with you completely. I don't understand this at all, but would sure like to be enlightened.

[sassy]

This confuses me too. How many of us found our own cancers by BSE? I know I did---at 45.

[tricia keegan]

I for one, will continue to do self exams and encourage my daughters to do the same!
I can't think why "they" think it unnecessary.

[Laurel]

But there must be a reason.....

[ElaineM]

I think I read something about that, but I don't remember why either.
Oh well. I continue to examine myself regularly. It is my body and I will continue doing what I think is helpful, regardless of what anyone or any group tells me to do.

[Laurel]

This is a vitally important question. Think. There is an answer.

[hutchibk]

Laurel - read this thread from last month... it pretty well covers it.

http://her2support.org/vbulletin/sho...ht=breast+exam

[hutchibk]

10-11-2009, 06:04 PM #52
hutchibk
Senior Member

Join Date: Oct 2005
Location: Texas
Posts: 2,953
Re: Good Advice?
I forwarded Joe's/our concern over this to the Feel Your Boobies Foundation on Facebook...

Here is their initial response today to my post: "...well, this used to trouble us too -- but what they are actually say is that "feeling your boobies" is just as effective as the step by step process suggested in the Breast Self Exam...meaning that most women who find their lumps are just doing daily routine things....NOT breast self-exams.

Having said that, i feel that this research has been promoted in a way that makes it seem like it's not important at all to feel your boobies -- when actually what it should be promoting is basic breast awareness and being proactive about knowing your body."

**************************************************


This is not the first they had heard of it and here is an essay written in Jan 2009 by Leigh Hurst, Feel Your Boobies Founder/President:

Recently there has been a lot of press questioning the effectiveness of the breast self-exam (or BSE). The stir began when the analysis of a rather large study was released and stated that the research showed there was no benefit to performing a BSE, and, in fact, that in some cases there was increased harm due to unnecessary biopsies on non-cancerous lumps.

Wow – are you kidding me? When I read this, I initially saw red and thought – how can this be?? A BSE is what saved my life. How can anyone say that we shouldn’t be doing them and why would we discourage proactive habits by so publicly proclaiming them ineffective? And then I took a deep breath, regained my composure, and poked around to understand this a bit more.

As it turns out, the study wasn’t actually saying that BSE’s were ineffective – it was saying that BSE’s, the formal procedure known as a “breast self-exam”, is no more effective than basic breast awareness. It reflected that those women who were simply “feeling their boobies” were just as likely to find a lump as women who were doing formal BSE’s. It also mentioned the idea that many women who find their own lump say that they found it through BSE’s when actually many of them were really just “feeling their boobies.”

And so, my heart rate decreased, my face regained its natural coloring and my mind became peaceful again. After all, my personal experience actually parallels that of the findings publicized from this study. I was not doing a BSE when I found my lump, though, for lack of a better term, I might have labeled it as such initially. In reality, I was simply showering and getting dressed, and, through the course of my daily routine, noticed a change because I knew what was normal for me. I was “feeling my boobies”, which is the whole reason Feel Your Boobies ® (FYB) began. My goal was to repackage the idea of BSE’s using language that makes it feel less like a formal process and more like something you already do.

For those who read this recent press, please don’t confuse the research findings for promoting passivity because that’s far from what was said. The point was whether you breast self-exam (BSE) or “feel your boobies” (FYB), you’re just as likely to find a lump. So, while some of you gals may continue to BSE and others, like me, may prefer FYB, the important thing is that you do it. Are you doing it?

<end article>

*****************************************

[Laurel]

Brenda,

Thanks for attempting to answer my question. I reread the NBCC's new recommendations on self breast exams and still find it a bunch of double speak. Their "concerns" about the procedure is that it may cause harm. How? Well, it may cause undo anxiety on the part of women and they may go see their physician and (God forbid!) receive a MAMMOGRAM, or an MRI, or an ULTRASOUND, or (horrors of horrors!!!) a BIOPSY!!!! OMG that can't happen!

Why?

[Bill]

They probably don't want the new healthcare system to pay for "unnecessary biopsies". Trying to cut corners and costs before the new system is in place. Next they will explain that most of the time an elderly person feels severe chest pain that it is actually heartburn and that we should wait until the morning to be sure. "Aw, go to bed, Mom, it's just heartburn. You know that new government study that just came out...."

[Laurel]

Go to the Head of the Class, Bill!

[Marlys]

I didn't even do a self exam.... the damn thing hung up on my bra when I was putting it on. That was on a Saturday. I saw my doctor on Monday, mammogram on Tuesday, Ultrasound and needle biopsy on Wednesday. I had had a physical with the doctor doing the exam 3 months prior. Was due for my yearly mammo the next month. That was almost 5 years ago. I am a survivor "dancing with NED" as we say here. I will continue to feel my boobies on a regular basis.

Love & hugs,
Marlys

[Laurel]

In Pennsylvania for many years we had a mandatory helmet law where all motorcyclists had to ride with a helmet meeting safety standards defined in the law. A few years ago the law was rescinded. All those many years the law was in place politicians, actuaries, trauma docs, etc. defended vociferously the law citing studies showing how lives were saved by less severe head trauma. To be fair many bikers resented the intrusion on their liberties and fought the helmet law tooth and nail. Then, with a new administration, a sudden reversal and "new" data indicating riding sans helmet was just a dandy thing to do, at your own peril, mind you, but just a dandy thing to do as far as the State was concerned. Of course those who work the life flights, E.R.s, and trauma centers knew the real reason the law was pulled. It is much cheaper for head trauma patients to die than to live, often with severe and permanent deficits. The acute care required can occupy months before the patient continues on to extensive rehab. The costs are staggering.

Nope, better dead than a drain...at least in Pennsylvania.

[Margerie]

My FIL would have died 20 years ago if he hadn't had his bike helpmet on. He did have extensive therapy (4 months in ICU, many surgeries, still disabled)

I wonder if Pennsylvania stated that bike helmets were of no value? I am sure they formed an action committee with no ER or trauma docs, but full of healthcare industry people to take an unbiased approach to evaluating bike helmet recommendations. And then if anyone complained (or got hysterical) they patted them on the head "There, there, calm down, we know what is best for you. You know those greedy ER docs are just out for money and certainly would have only their self-interest in mind and that is why we did not include them."

[Debbie L.]

The logging-in thing is getting worse. I didn't even leave the site this time, and was logged out. I'm still wondering if it's not something to do with a Firefox update. Are others who are using other browsers having this trouble?

I'd like to propose a few counter-arguments to the prevailing ones here. I'd like to keep these discussions respectful and civil and try to stay away from sarcasm, criticism, and suspicion. I think that the science to support the guidelines is able to stand alone, and should be argued alone.

One recurring theme (1.) is that these guidelines are about saving money, and another (2.) is that releasing them now is politically-motivated and/or related to health care reform. I don't think either of those arguments are true. But IF they were - I would say that they don't make a lot of sense:

1. It could be argued that IF these guidelines were to cause too many people to be diagnosed at a later stage and/or to die - that would cost us MORE money. Mammograms are (relatively) dirt cheap. Treatment to cure primary breast cancer is fairly expensive. Treatment of metastatic breast cancer is wildly expensive. We could probably do mammograms on half a small state with the money spent on treating one person's metastatic cancer. We could treat (cure) many primary breast cancers for the price of one person's metastatic treatment (and that cost rises nearly daily, as more medicines with highers costs come online). The fact that we have so many good options for treating metastatic disease is of course a wonderful thing. But no one can deny that it's also an expensive thing. So IF staying with current screening guidelines would prevent treating more metastatic disease, it could reasonably be argued that that might SAVE money. Several "if's" there and the biggest one is that this task force has repeatedly stressed that they do not take cost into consideration when they evaluate evidence. There is no evidence in their report that they did so. But had they done so - they could have concluded that it's more cost effective to do more mammograms and treat fewer mets, IF more mammograms indeed did prevent more mets. But the evidence shows that they do not.

2. I don't think that those who support and hope for health care reform were glad to see the release of these guidelines right now. While they may agree with the guidelines, it's clear that the public clamor over them is hurting, rather than helping, the acceptance of health care reform strategies. It could be argued that releasing these guidelines right now may prove to be one of the strongest detriments to acceptance of health care reform. IF this were some kind of big conspiracy to save money and/or get rid of people, don't you think they'd have waited to release the information when health care reform was a done deal?

It's hard to keep posting here in the face of near-total opposition. But I do think that each of us needs to hear both sides of this story, so I keep coming back to offer that other side. I don't think that questioning the motives of those who think differently about this is helpful. I'm pretty sure that everyone who has an interest in these guidelines has that interest because they want there to be fewer deaths from breast cancer.

Debbie Laxague

[hutchibk]

It has always seemed to me to be a difference of philosophy. And don't get me wrong, I love and respect science, to an enormous degree, but I personally have caveats when it comes to statistics and studies, they bother me a lot sometimes. There is the devout hard, fast and stringent statistics core/corps, and then there are those who believe that individual humanism and science have to be negotiated. Controlled statistical evidence vs free-wheeling "anecdotal"/clinical evidence, if you will.

Statistics don't and can't take into account the individual human's cells, molecules, dna, spirit, internal constitution, fight, and that certain something that can't be tapped into. One size fits all stats just can't possibly fit all. They are too big for some and too small for others. Stats have their role, but must be mitigated with "individualism."

I certainly don't mean this to be sarcastic... but personally, I would rather be alive anecdotally than dead statistically.

[Carolyns]

Hi Laurel,
I didn't get why they are telling women not to do self exams. I think that most women got that message and not the distinction of a formal self exam verses a "feel you boobies" free style exam.

Debbie, I am glad that you post your perspective but I am one of the folks who does not fit the cookie cutter approach and therefore can not agree with your counter argument perspective. I was put off for over a year by a doctor who was following the "guidelines" 21 years ago. I was too young for a mammogram. At Stage IV 18 years later scans were ordered which showed that I had a broken cervical vertebra. Well studies show that scanning or finding Stage IV earlier or later doesn't affect outcome... as a result many doctors would not scan. Well I can still stand upright rather than being in a wheelchair so who knows if I will live longer. Statistically speaking they may be right but there is more to the story. As far as evidence based medicine, there isn't any evidence to support the vast majority of treatments I have had as a Stage IV patient yet "anecdotally" they have all worked. I am not trying to be sarcastic but it burns me when my personal life experience is referred to as anecdotal. With these types of guidelines there are supposed to be work-arounds for Stage IV patients that don't fit the mold but they are straw men... just try to get compassionate use or expanded access if you need it... I hope and pray that no one ever gets Stage IV and needs access to compassionate use or expanded access... people are die every day waiting. I am a pleaser and I love to agree with authority figures but in this case it is life or death and I can tell you from personal experience if I could only get insurance to pay for treatment based on evidence I would be dead. You can see on the boards that many are already being denied Tykerb without Xeloda … this is a new trend since I came on this board. Anyway, I respect your right to speak your mind and it is interesting to read but I am fairly certain that if you were in my shoes you could see why I can’t agree with your counter arguments. PS - I don't mean this as a political statement. It is just not the right way to go about setting guidelines when experts in the field and patients are left out of the process or asked for input in the process. Numbers do lie and statisics are almost always way behind the current situation.

Brenda, I couldn't agree more with you... beautifully said,
"Statistics don't and can't take into account the individual human's cells, molecules, dna, spirit, internal constitution, fight, and that certain something that can't be tapped into. One size fits all stats just can't possibly fit all. They are too big for some and too small for others. Stats have their role, but must be mitigated with "individualism."

I certainly don't mean this to be sarcastic... but personally, I would rather be alive anecdotally than dead statistically."
Thanks, Carolyn

[Margerie]

You can not put a dollar value on a life. You can not put a dollar value on suffering.

I think a lot of us resent that our lives are being added and subtracted in some column in the name of biostatistics/ bioeconomics by this panel. I think a lot of us realize that if these guidelines were in place years ago, we may not be here. I probably would not. There is value to what this panel found, but they needed to consider a lot more than economics and evidence-based science before revising their recommendations IMO. We need to debate considering the human element, we need to remember the enemy is breast cancer.

[Laurel]

1. Who says they intend to continue to treat Stage IV cancer?

According to the latest guidelines Stage IV cancer is a terminal illness so therefore treatment is denied....

Too far fetched? Why?

2. These guidelines were updated in 'o8. I did not hear a peep about them until last spring when they were floated in the media for a few weeks and not picked up much. I noted them and commented to friends that the handwriting was on the wall.

You know the old adage: if it quacks like a duck, craps all over everything like a duck, waddles like a duck...well, dang it all, IT'S A DUCK! Now that's science! Country science! But, seriously, sometimes your gut is right. Go with your gut. Something stinks in Denmark....