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Kathleen Reardon

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I'd Be Dead By Now -- The New Breast Cancer Guidelines

Posted: 11/17/09 10:50 AM ET

I'd be dead by now if it weren't for breast self-examination. And had my doctor been less convinced of his own guidelines regarding women without a known history of breast cancer, my cancer would have been detected earlier and I would have been treated sooner and less aggressively. I was 32 years old.

Does this mean the findings of the study about to change women's lives are worthless or tainted by the influence of insurance companies and planned medical cutbacks? Can't answer that yet, but I'd hate to think so.

I'll say this. I'm a social scientist with nearly twenty years conducting preventive medicine research. Research by leading scientists is informative, often instructive, but never the last word. And that is how most of them think as well. Even the best research can be influenced by the desires of those conducting it, those sponsoring it, guidelines for publication, and a host of other factors. This is why replication is so important. But even when studies are repeated, it is possible for biases, errors and oversights to be so as well.

The latest research is one more piece of information for the decision process women must make each year regarding mammography. That's it. If breast self-exam gives you greater peace of mind, no set of guidelines should deter you from it. If someone in your family found a lump in her breast that turned out to be breast cancer, what a team of doctors and researchers tells you is simply one piece of advice and perhaps irrelevant to your situation.

They are researchers looking at numbers. You are a person they do not know.
I have high regard for many of the doctors weighing in on this subject, but let me bring it back to you, your wife, mother, sister, or friend. Anecdotal information is valuable. It is part of the larger picture. You also need to know yourself. If you're more interested in being sure than worried about being scared, find yourself a doctor who agrees with you. And get the mammogram recommended by the American Cancer Society before the insurance companies take that option away.

Can you overdo worry about breast cancer? I suppose so. But gum disease concerns me too and no study is going to convince me to stop flossing. So, ignore all this condescending talk about women worrying and how we should be protected from our nervous selves and instead take the findings of the research as useful, additional information.

To your family and yourself, you are not a number. And your life is different from that of the people who seem to have the answers. Do what's best for you. I've found that fighting cancer is a bit of a crap-shoot anyway. The guidelines keep changing. Treatments improve. And you might in hindsight wonder if a different approach would have spared you some later problems. But there's much to be said for being glad that you're still here.

Later today I'm heading over to the YMCA to Lance Armstrong's Livestrong exercise program for cancer survivors. I don't think I'll find many people there saying, "I wish I'd known not to bother looking out for cancer at my age" or "I wish some doctors had protected me from worrying." No. We're going to enjoy our exercise thanks to Mr. Armstrong and the YMCA and be glad that when it came to our decisions, we did, after relevant information was considered, what seemed right for us.

Dr. Reardon also blogs at bardscove.

 
 
 

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12:36 AM on 11/22/2009
Well, for some of us this it a non issue. Why? Because if I feel a lump, (which I have), I have only hope and a prayer as options. I can't get the yearly or every 3 year PAP either. My last PAP was in 1996. The reason is no health insurance. Without a public option I have NO options.
When I had cancer, I was able to become unemployed so I could get Medicaid and get it cut out. (I lost my home in the process, but that is another story.) I can't get Medicaid now, no matter how poor I am because my daughter is now an adult. She has no insurance either. No matter the policies and recommendations, some of us are left "out in the cold". In fact, I sometimes feel as though I am not worth a damn, since my fellow citizens don't even consider me, and Americans like me a part of these discussions. It is like I am not even a person. How often should the uninsured get a mammogram or check for a tumor they can't get removed?
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HUFFPOST BLOGGER
Kathleen Reardon
11:14 AM on 11/22/2009
Please contact The Susan G. Komen Foundation. Today, on Meet The Press, Nancy Brinker strongly advocated for women who don't have the resources to be screened and to get the help they need. The number is 1-877 GO KOMEN and the website is ww5.komen.org/Contact.aspx. Please share your situation with them and ask them for advice and help.
HUFFPOST COMMUNITY MODERATOR
propitiousmoment
the journey is the destination....
09:57 PM on 11/21/2009
I don't think the issue is breast self-exams; young girls are taught to do that from the time they begin menstruating, or if not they should be. The issue is routine mammograms. I personally do not agree with making it less frequent or starting later in life. But nobody should need to "make a decision" about doing a self-examination, it should be a part of one's hygeine, like brushing your teeth.
11:47 AM on 11/19/2009
I was diagnosed with breast cancer at the age of 39 after my first mammogram. I had no identifiable risk factors and no family history of the disease. I elected to have a mammogram based on the fact that the guidelines recommended it and because I lived in Marin County, California - a place with the dubious honor of having one of the highest breast cancer rates in the country. I was diagnosed on December 22, 2006 and had a mastectomy on January 17, 2007 and am currently being treated with tamoxifen. The new guidelines feel like a step backwards in women's health. I am most appalled by one of the reasons for the recommendation - that 3 out of 4 women have a false positive and this will eliminate their anxiety. I know 3 women who had false positives - this reasoning means I would have died to eliminate the anxiety they went through. I know they would elect to experience that anxiety to save my life. Had the guidelines been in place when I was 39, I would not have survived. I am thankful that I will be spending another Thanksgiving with my 12 year old son and 7 year old daughter this year.
10:26 AM on 11/20/2009
"I am most appalled by one of the reasons for the recommendation - that 3 out of 4 women have a false positive and this will eliminate their anxiety. I know 3 women who had false positives - this reasoning means I would have died to eliminate the anxiety they went through. I know they would elect to experience that anxiety to save my life. "

I absolutely agree. I just don't understand the reasoning that goes behind saying your life is worth less than another woman getting to forgo a stressful experience.
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HUFFPOST BLOGGER
Kathleen Reardon
11:22 AM on 11/22/2009
The number of false positives only emphasize the HUGE problem with the technology used to detect breast cancer. It shouldn't translate into a problem of anxious women. Most women would gladly experience some anxiety, just as you njantze and Black Cat point out, in order to save the lives of other women. But we should also expect and get better procedures rather than simply taking the best we have away from women and even telling them not to do BSE without emphasizing the importance of being breast self aware. I wrote a second blog on this that is on the LIVING page if you want to see some other recommendations. Your response puts this argument about anxiety into perspective. They should stop talking about our anxiety and start producing state of the art, affordable, technology and beyond to better detect cancer. Kathleen
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blueskyseas
Veni, Vedi, Velcro. I came, I saw, I stuck around
06:33 AM on 11/19/2009
The U.S. Preventive Services Task Force was actually initiated by the Bush Administration.
Just so you know.
04:06 PM on 11/18/2009
There is an amazing and emotional response to these findings. Listening to "Doctor Radio" this morning, I could not believe that so many people agreed with these findings. We all know someone who, with early detection, is a long term breast cancer survivor. So, at they saying that we should risk the lives of women who can survive because of early detection? I am a 14 year breast cancer survivor who was diagnosed in my 40's.
12:17 PM on 11/18/2009
This will be impolitic to say, but the general tone of this debate really isn't all that different from debates going on in the criminal justice field over whether or not draconian sentencing guidelines like "three strikes and you're out", or years in prison for simple drug possession, are really justifiable.

One side of that debate points out that (1) the vast majority of convicts swept up in such sentences are non-violent and pose very low actual threat to public safety; and (2) the costs to society of incarcerating this population are astronomical, and could be spent far better elsewhere, like funding thousands of community programs that can actually reduce crime rates.

The other side holds that as long as there is the most miniscule of threats to anyone, anywhere, at anytime, then any cost is justified to make sure that a fearful public can sleep at night. In fact, let's build more gated communities and make a fortune selling home security systems that make people feel good even if they don't measurably reduce crime.

The politics of paranoia rule this country. The number of conspiracy theories cropping up in these message boards is (anecdotal) evidence enough.
10:33 AM on 11/20/2009
I don't think this is a fair comparison at all. 25% of positive findings on a mammogram are NOT false positives, they are actual breast cancer diagnoses.

Almost a million people are arrested for marijuana in this country evey year for marijuana, and 80% of those arrests are just for possession. Yet I can almost promise no where near 25% of those arrested are actually dangerous criminals.

Not to mention what are the consequences of decriminalizing marijuana? As we have seen in states that have done so, none. No rise in violence or crime or welfare or anything like that. Whereas the downside of more lax mammagram guidelines can result in people's deaths.

I don't necessarily disagree with you about the paranoia we are surrounded with. But there is a difference between paranoia and genuine danger. Many people are extremely paranoid about "stranger danger" and child abductions, even though a child's chance of being abducted by a stranger is something like 1 in 2 million. A woman's chance of getting breast cancer is 1 and 8. It is not paranoid to want to be cautious about a disease which affects 1 in 8 women.
05:54 PM on 11/20/2009
I think it's mostly fair, but I do want to be clear that I'm very much in favor of BC screening in general; it's only the annual screens from ages 40-49 that are in question.

Your numbers seem awfully high; what's your source? National Cancer Institute data indicate that for asymptomatic women aged 45-49 who haven't been screened in at least 9 mos, only 2.4% of positive screens result in a BC diagnosis, so a full 97.6% of positives are false alarms. Only about 1 in every 385 screens will actually be a true positive.

For women aged 40-44, the true positive rate drops to 1.5%; only 1 in nearly 600 screens will reveal an imminent BC diagnosis. (http://breastscreening.cancer.gov/data/performance/screening/)

It's like trying to find a needle in a haystack, and it consumes tremendous healthcare resources to do it. Is it worth it? I'd be the first to shout "yes, of course!" but you do have to stop and think about where else the same money could be going, perhaps research into more accurate detection methods, better treatments, or understanding the causes - things that will ultimately save more lives in the long-run.
11:57 AM on 11/18/2009
We're missing an opportunity here to question both the science and the interpretation of the studies here. First - how good is the research? It wasn't in peer reviewed journals (according to npr) -- why not? How much was known about the sample populations? Second- what are the limits of the study? As far as I can tell from the news, it only dealt with the outcome of death, and didn't deal with total severity of cancer experienced (morbitity) or with total cost of cancer treatment vs. prevention cost. Am I wrong about that? Finally, we should be interpreting these results with more caution. For example, I hear that they didn't see a big reduction in death from doctors explaining breast self-exam. Is that because the populations compared actually had a similar mix of people who did and didn't actually do the regular breast self-exams? I mean they're not that hard to do- you don't really need official MD training to figure it out, and there are lots of other factors that contribute to how often you breat self exam (like whether or not you have one of those shower hangers). If we really want a convincing study of the value of breast self-exams, I'd want to see a longitudinal study comparing populations that regularly vs rarely do breast self-exams in level of cancer severity at detection stage, total cost of treatment, morbitity, and death rate.
11:05 AM on 11/18/2009
Hopefully I'm wrong, but this smells like a backdoors deal with insurance companies so that there might be more support for health care reform...
10:56 AM on 11/18/2009
When the government runs health care, these types of decisions will be routine.
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mooph
In my haste, I was a dyslexic typist
10:44 AM on 11/18/2009
A side note -- you wrote, "But gum disease concerns me too and no study is going to convince me to stop flossing."

Flossing is a preventive measure; a mammogram is a type of examination, like a dentist or hygienist poking at and examining the gums. If only there was a "flossing" measure -- something as simple as that -- to substantially reduce the risk of breast cancer.

A better syllogism is routine oral cancer examinations when visiting the dentist.
10:14 AM on 11/18/2009
I am growing Increasing more weary of reading these monitary justifications for reducing Women's health care benefits! How many of you Supporting this reduction in mammogram screenings are citing the Cost vs, a Woman's risk of undetected breast cancer? It just sickens me. The Almighty Dollar Rules! I guess the Task Force would Never consider reducing coverage for something like prostate cancer screenings. Prostate cancer is an age based illness. too. I haven't seen them reducing Men's health screenings At All. So, as I said in an earlier comment, Insurance companies take these guidlines seriously and do you Really think they won't take advantage of this in women's health insurance policies? Oh, and just to clarify something I read in a comment, this task force is comprised of Private Sector PRIMARY CARE Physicians..There is not ONE Oncologist on the task force! If I am going to have my mammogram screenings reduced, I would like to hear that from AT LEAST ONE Oncologist! Stop putting Money ahead of Women's Health!!
07:31 PM on 11/18/2009
Gablib,
Perhaps you didn't notice when a recent panel made similar pronouncements about - yes- prostrate cancer, citing very similar concerns: i.e. that prostrate screening was leading to unnecessary and potentially harmful interventions. In fact, a friend of mine who recently had shown elevated PSA then had to go painful (and no doubt expensive) biopsy (12 "shots" into the gland though the anus), only to find out that nope, everything's otherwise normal.

Furthermore,there's no basis to your assumption that this is purely or primarily about cost cutting on women's benefits. I can understand your suspiciousness re. motives, but the task force has no authority to tinker with medical insurance benefits. Jumping to erroneous conclusions doesn't help this dialogue.

Having an oncologist or two on the panel wouldn't bother me, though I would definitely not want to turn such recommendations over to those with a very narrow operational paradigm and perspecive.
09:24 AM on 11/18/2009
In 2002 I was diagnosed with Stage 1 breast cancer, after a mammogram and biopsy. The policy of my breast care center required two doctors to independently review my mammogram. I was lucky, one doctor saw something that appeared suspicious the other doctor found nothing. The first biopsy was negative but my doctor was not convinced and preformed a different kind of biopsy that was positive.

The tumor was deep in the tissue and very small. It could not felt with a physical exam.

If I had a mammogram every two years, the tumor would have been larger, the treatment more extensive and expensive and my survival rate would have diminished. I cannot imagine what they are thinking with the new recommendations and all I am seeing is so called reporters supporting them. Where are the other voices?

I am beginning to feel like chattel, first my womb is under the control of Stupack, and now my breast is held hostage to an insurance company. Will there be any insurance coverage for the rest of my medical care?
11:48 AM on 11/18/2009
A "government panel of doctors and scientists" decided this, not the insurance companies.
12:46 PM on 11/18/2009
Yeah, "a government panel" in the back pockets of the insurance industry.
09:31 AM on 11/19/2009
Insurance companies frequently only pay for that which is approved by a government panel...
08:59 AM on 11/18/2009
Sorry to interject science into this discussion. Mammography relies on radiation. There is a risk to exposing breasts repeatedly year after year to radiation. Additionally, the density of breast tissue of women in their 40s remains a challenge for mammography. There have been many advancements made using computer aided diagnostics, and these have helped. As breasts no longer go through hormonal cycling, mammography becomes a much better screening test.
Scientifically, the rationale for instructing women not to do self exams evades me.
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Pyrum
03:08 AM on 11/18/2009
I can't believe everyone's so up on arms over this. I think it's good advice. For most people, early detection of cancer doesn't mean a greater survival rate: it only means you know for a longer period of time you have cancer. At least the government isn't talking the way John Edwards was during last year's primary. He wanted to make mammograms mandatory! I would hack my own breasts off with a machete before I would submit to a state ordered mammogram!
09:51 AM on 11/18/2009
I don't know what numbers You have been looking at but you are Dead Wrong and the REAL numbers prove it. You statement, " For most people, early detection of cancer doesn't mean a greater survival rate: it only means you know for a longer period of time you have cancer." How do you think they are able to Battle it Otherwise?? That is just about the most ignorant statement I have ever read. As for looking backward to when John Edwards was running, how about looking at the Present and the Future?

It is Quite Obvious that this is geared toward new guidelines for Health Care Reform! Insurance companies look at and take seriously these guidelines (whether or Not there is even ONE oncologist on the task force!) They have already reduced Women's benefits in this bill being debated in Congress, now they are further reducing our future benefits by reducing the guidlines for mammograms which is PROVEN TO REDUCE THE NUMBER OF DEATHS DUE TO BREAST CANCER!

Wake Up and smell the Special Interest Money!
12:52 PM on 11/18/2009
But you buckle your seatbelts, no? That, too, is "mandatory." What are you going to "hack with a machete" because of this "state ordered mandate?"
BTW, stop with this notion of hacking off breasts with machetes. You're going to give the insurance industry ideas!! (I can't believe a woman would talk like that about her own body to begin with.)
01:43 AM on 11/18/2009
Despite the differing positions of the U.S. Services Task Force and the physicians themselves, are women willing to undergo regular mammogram
tests for their health’s sake? Since it is them who will either suffer or benefit from stopping or continuing mammogram tests, the decision must come from them as well.

Like shops which sells Cherokee scrubs in a high cost, inconsistency of the recommendations with the current science shows an apparent attempt to simply reduce costs. Sadly, however, women may pay it with their own lives. And this is more likely to happen. Besides the influence of the agency as well as of the insurers, women may take the screening for granted over other important expenditures, especially now that the economy is down.