Susan Love Defending New Guidelines

The first thought I had after being diagnosed (other than the total fear) was that it was due at least partially to mammograms. Over the years I have had film after film taken of my breasts. My envelope that held the mammograms was getting heavy.

I don't think mammograms cause all cancer. And I have also read that you don't get anymore radiation with a mammo than a plane flight...but, what you get on a plane is not concentrated directly thru your squished breast like a mammo.

I wish the new guidelines had been out when I was younger. Then I wouldn't have had all the mammos and wouldn't have to wonder about them.

I have to say that I admire Susan Love. I am sure she is getting some major grief so she must really believe that the guidelines need to be changed. Think about it, when you think of a breast cancer expert, she is right at the top of the list.

I have 2 daughters and I have told them NOT to do mammos. All that radiation (whether it contributes to cancer or not) cannot be good for you. I don't want my girls to have routine dental xrays either.

There is a lady in my support group that had throat cancer and they radiated it. Two years later, her jaw bone is starting to deteriorate and her teeth are breaking off. So, she got much more radiation than the dental xray but HOW MUCH RADIATION IS TOO MUCH????

Better TREATMENT is a whole 'nother subject.  Women need to speak out on that too!

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LauraGTO wrote:

Bottom line is - If someone creates a totally safe, reasonably priced, breast cancer screening device that is proven effective and recognized by insurance companies, then they would have the right to address the mammo issue.

It's simple...I learned this early on in the business world: if you're going to suggest change/reform, you better have a strong, proof positive alternative, or keep your mouth shut.

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Yikes!  Keep your mouth shut??? And you fancy that this is an example of how your business experience made you a discerning problem solver? Failure to address an issue does not make it go away.

 If something isn't working,  lack of an alternative doesn't make it work.  A lackluster business might be fine with  mediocrity or worse,  but it has no place in medicine. 

 NPR recently ran this eye opening story about the cost of MRI. Why are so many women just accepting that MRI is too costly, and are fine with "rationing" it,   while at the same time they are railing that these mammo guidelines are secretly based on cost? 

http://www.npr.org/templates/story/story.php?storyId=120545569

 From Susan Love's blog ...

Thursday, July 17, 2008

New Evidence-Based Review Finds Breast Self-Exam Fails to Reduce Cancer Deaths

Have you been doing your monthly breast self-exam? It’s rare to find a woman whose doctor doesn’t routinely ask her that question—and who doesn’t feel guilty when her answer is no. Yet there is no data to support the practice. In fact, large randomized controlled studies have found that BSE might not matter at all.

Now, an updated research review released on July 16 by the esteemed Cochrane Collaboration  underscores this conclusion. The report is entitled “Regular self-examination or clinical examination for early detection of breast cancer.” And the authors’ conclusions couldn’t be more straightforward: “Data from two large trials do not suggest a beneficial effect of screening by breast self-examination but do suggest increased harm in terms of increased numbers of benign lesions identified and an increased number of biopsies performed. At present, screening by breast self-examination or physical examination cannot be recommended.”

The two large population-based trials the researchers reviewed were conducted in Russia and Shanghai. In both studies, the researchers divided the women into two groups. One group was taught BSE. The other was not. The researchers followed both groups of women for about 10 years. The end result: There was no statistically significant difference in breast cancer mortality between the two groups.

The best study, led by Dr. David Thomas at the Fred Hutchinson Cancer Research Center, was based in China, where women did not have routine access to mammography screening. In this study, one group of 133,000 women underwent intensive instruction in formal BSE. They also received two refresher courses. The second group of 133,000 women had no instruction in BSE. After 10 years, the researchers found there was no difference in deaths from cancers, size of tumors, or cancer stage at diagnosis between the two groups. The only difference was that the group doing formal BSE has more benign biopsies.

This illustrates that while many women do find their own breast cancers, what’s not accurate is the notion that they are finding them because they perform a monthly breast exam.

I believe the real distinction that has to be made is between doing a formal BSE in different positions and covering every inch of the breast in great detail and the causal touching of their breasts that all women do. In the China study, the women not taught BSE found their own cancers because they often casually touched their breasts. And that tells us this normal poking around is as good as BSE.

I’ve been saying for some time that women do not have to go on a search and destroy mission every month, and that they should not feel guilty if they do not do formal BSE. But that’s not the same as telling women not to touch their breasts! Women should be acquainted with their breasts and touch them whenever they feel like it. And if they do find something unusual while touching their breasts, or if their partner feels something during sex, they should report it to their physician.

The original idea of early detection was based on the belief that all breast cancers grew slowly until they reached a certain point and started to spread. This scenario suggested that BSE or mammography had the potential to save lives by identifying these tumors early, before they got out of the breast. But the new data suggests that there are many different kinds of breast cancer based on their DNA mutations, some of which grow very slowly and some of which grow quite fast. If you have a very fast growing and fast spreading one, mammography and BSE and physician exam will not make a difference. They also don’t make much of a difference if you have a slow-growing tumor that may never spread. It’s the middle group where mammography may have its biggest impact.

What this new review really points to is the need for breast cancer research to shift its focus from early detection to finding the cause of breast cancer and how to prevent it. That’s the only way were going to truly be able to make a difference in this disease.

What this says to me is ...

We are not statistically significant.

No difference in death (I would argue with those statistics).  How about difference in treatment and side effects from treatment.

Most women in China have small breast like myself and it was easier to find the lump. 

Not feel guilty & touch them if & when you wish.  Well then you are saying it is not important. 

If it is fast growing, BSE & mammogram make NO difference.  I think many would beg to differ.

Shift from early detection to cause and prevention.  I guess sacrifice the few (in my opinion masses) to get ahead.

We need a new leader of the research movement.  She obviously doesn't get it.

From Susan Love's blog ...

Additionally the guidelines do not say “never do breast self exam or touch your breasts again.” The data shows that formal four-position 20-minutes breast self exam is no better than the usual poking around we all do. The guidelines continue to suggest that women be aware of their breasts; they just do not recommend that physicians spend time training women in formal BSE. Most cancers in women under 50 are still found by the woman herself and not screening mammograms.

The alternative to finding your cancer on a mammogram if you are under age 50 is not death.

The alternative is finding the cancer by feeling a lump while in the shower, or poking around, or rolling over in bed.

• The USPSTF recommends against teaching patients breast self-examination.

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What I have issue with is that they are dismissing the importance of BSE and mammograms under 50.  They say do not teach BSE at all.  I would have respected it more if they said teach a less aggressive method and / or instead of monthly self exam we can relax and do them every other month or so.  The way they state this is to not educate the upcoming generations on any form of BSE and to just let women "poke around" randomly on their own with no guidelines at all.  Susan Love's idea of BSE seems to be very casual, do as you please, when you please, if you please and you will find your lump.  Ask many and this was NOT the case.  Some of the lumps are down deep and hard to figure out.  I learned BSE in high school.  I don't necessarily believe doctors have to teach it but someone does, even if it is a less aggressive BSE.

Mammograms and BSE have saved many under 50 from far more aggressive treatment, long term side effects, and yes, death (not statistically significant though!).  Sometimes one worked better than the other depending on the location and type of cancer.  Maybe the guidelines could use modification but they took it too far by not giving under 50s anything and that is where I lost my respect.  We COULD lose our "right to radiate" (as per Love, how obnoxious) ever under 50 if we are not high risk thanks to this.  We are getting up to world standards they say.  Since when are world standards definitely better than the US?  The European health care system is NOT for us to aspire to.

Dr. Weiss please step up for us or find someone who will take over the research movement.  We need a new leader. 

I think most would agree that mammograghy doesn't always find cancer in dense breasts......but right now it's all we've got.  It is ONE diagnostic tool that is used along with others, ie. ultrasound, mri.  For me and many others it was an important tool in earlier diagnosis.  Radiation or not, it finds cancer and I think I'd rather find the cancer......

What is unacceptable is Dr. Love going on national television and talking from a "public policy" perspective stating the benefit (lives that would be saved) is not great enough to outweigh the costs of testing, etc.  and that those funds should be redirected towards finding the cure.  hmmmm.....this screams socialized medicine to me.   Doctors are supposed to work to save lives, not decide who gets to live.  From an ethical standpoint, I don't think she or any other doctor for that matter, has the right to make those kinds of decisions.  I think that it's this point that many are angry about. 

Oh and by the way, Dr. Love says this isn't just about the money.  Excuse me but, it's all about the money!  If it's not about the money, then why don't we just replace the mammogram with an MRI for women between 40-49?  Somehow, I don't think they'll go for that.

One thing I find frustrating about the "Love" approach is that she is recommending we toss out the baby with the bath water ... so to speak.

Those who suppport the USPSTF guidelines keep arguing that mammograms aren't good enough.  Mammograms don't pick up tumors in dense breast tissue, which is more common in younger women; and they result in too many false-positive findings in other women who then end up with "negative" biopsies; and they add to our lifetime exposure to radiation, which is especially risky in younger women; etc., etc.  So, we need to cut back on the use of mammograms for screening, because we need to find something that works better.

... as if using mammograms for screening is prohibiting the development of more effective screening methods???  Why would the continued use of mammograms and the development of new screening techniques be mutally exclusive?

I don't think they are.

[Edited to add:  Mammograms are currently the "gold standard" for screening.  Seems like widespread, standardized use of mammograms would offer the perfect setting for controlled, clinical testing of new screening methods. Anything else is going to have to be compared to mammography anyway.] 

otter 

I WAS on Susan Love's fan page on Facebook and was part of her so called Army.  I removed myself from both tonight.  But first, I made a comment on her fan page on how she SUPPORTS the new guidelines.  A fan had posted negative comments on the new guidelines, but there was no response from Susan herself!  So, I mentioned she supported it.  LOL!!!! 

I believe my mammogram saved my life. I had very large breasts and had not felt a lump of any kind by doing the self examination. I was busy when it came time for my mammogram so I delayed it by two months. The mammogram picked up the small, 1 cm tumor that my Dr.and I both missed. If I had been on time with my appt. instead of delaying that two months perhaps the mammo would not have caught it or it might not have even been there yet. Then it would have been an entire year before I had another exam and it would have been much larger and maybe even too late.

This is a very complicated issue but I think having a mammogram and self examinations have saved lives. I know it saved mine and I don't see any proof that they have caused breast cancer. Speculation, yes, but no proof. Until someone comes up with a better way of detection we must use what tools we have available.

I was being sarcastic about the overtreatment comment.  I am very happy with my choice.  And, after careful consideration, would have chosen a BMX even if I was BRCA negative. 

Pill...The reason why I asked about the article is because it seemed like that was all she was able to do is cut and paste and not add any of her experiences in real life to the discussion.  I did not discount the article...but I do strongly question it due to the fact that it does not come from the USPSTF directly or even Dr. Love, which is who this thread is about.

As far as the dangers of mammograms go, it is all that we have and you can't discount cancers like I have as caused from radiation, because I NEVER have had a mammogram.  Do I think they need to be used carefully?  Yes, but we also shouldn't ignore that women need to know what is happening in places that she can not see.  Also the article which she cites do not address the digital mammograms which emit much less radiation than the old technique it was citing..which makes me question her intent.

Beach...you pointed out the radiologists point of view and knowledge...Oh, don't I know it!  My lump was described as 1.7 cm and under the first radiologists look at it...the MRI stated 3.5...and then another radiologist from my onc dept. looked at the same films and said between 5 and 6...and then I got sick of the BS my surgeon was giving me so I went to Seattle at the Swedish hospital and THEIR radiologists looked at the same exact films (they could only use them since I had already started chemo and the biopsy I had said I had IDC) and said it was 9.5 cm tumor from the same films!  I had a 10 cm tumor where DCIS was remaining...which I had a full clinical response from the chemo.

So many topics in this forum--where to begin? I'll just stand on this soap box for a few minutes.

What an outpouring of emotion over this task force's recommendations. They're on target about the evidence. I want scientific evidence guiding my diagnosis and treatment, not raw emotion. I want scientific evidence put forth for a focused look at causes of breast cancer, not corporate America telling me that early detection saves lives, hence mammograms save lives, hence you better get one right now!

Channel some of this outrage into funding quality research. Keep your minds open to facts, and try not to shoot the messenger.

This blog written by a member of the National Breast Cancer Coalition (the only group that get my money lately) summed up what I've believed to be true for many years: http://breastcanceradvocate.wordpress.com/2009/11/25/misplaced-outrage-the-new-breast-cancer-screening-guidelines/  I can't get the blog to paste onto here for easier reading, sorry.

Dr. Susan Love has been a bc advocate longer than most of us have had bc. She doesn't need to be a survivor to see the ravages of the disease, or the consequences of imperfect screening tools. She's long held the postion that "knowing your own breasts" by "poking around" regularly is far better for us than a scheduled, once-a-month-at-the-end-of-your-period breast self exam (BSE.) BSE doesn't improve overall survival rates.

We all like to be able to point at something and say, "That saved my life!"  Whether it's a mammogram or a palpation. In most cases, the finding may only have changed the course of treatment, not saved your life. And, before the flames fly at me for that remark, we all know that everyone's cancer is different. Some do grow wildly, and 3-6 months of ignoring a mass (or detecting it) makes a big difference. For for the majority, the evidence just doesn't bear it out. So please don't hit me with the misplaced outrage.

Anne

Anne, I also appreciated your post and the link.  I have been so frustrated while reading reponses on this board to the new guidelines, but haven't felt like anything I write makes any difference.  

Bravo Anne !!!!!!!!

There won't be any darts coming at you from my direction because I wholeheartedly agree with you. These guidelines are based on evidence, not on emotion or personal experience but unfortunately, the later two are what most women here and elsewhere are responding with. 

And what about the medical professionals who are expressing outrage about these guidelines?? Well, one might argue that they're concerned about the same issues that women in general are concerned about... women falling through the diagnostic cracks, delays in treatment that might have made a difference etc. But is that really their foremost concern, or could there be something else more personal for them too?? Maybe yes, maybe no - but one must at least consider the other possibilities.

Let's just focus in on radiation oncologist's, for example. Less screening mammograms means that less women will be diagnosed with DCIS and small cancers for which lumpectomy with radiation is a standard.  Therefore these new guidelines could mean significantly less women undergoing lumpectomy and so less women undergoing radiation after lumpectomy. Do radiation oncologists want to see their business drop off? I think not. 

And radiologists? Well, that's easy -  fewer screening mammograms means fewer biopsy procedures, fewer MRI's and ultrasounds to follow up on supicious lumps - which is all a direct hit to the wallet just like with radiation oncologists.

These guidelines are expressing what's best for a population of women.. not what's best for you, me or anyone else as an individual. I view these guidelines as a welcome step forward and away from routinely testing and treating the majority based on what's beneficial to only a minority.