New Proposed Changes to Mammogram Guidelines

[lizm100]

Task Force Recommends Drastic Changes to Mammography Guidelines



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Page last modified on: November 16, 2009
"The recommendation to change screening is a huge step backwards," says Dr. Marisa Weiss.



To the Breastcancer.org community:
The U.S. Preventive Services Task Force recently recommended dramatic changes to current breast cancer screening guidelines. Breastcancer.org is strongly opposed to these recommendations.
The proposed new guidelines recommend starting regular screening mammograms at age 50, rather than at age 40 as current guidelines recommend. They recommend screening before age 50 only for women with a much-higher-than-average risk of breast cancer. The proposed new guidelines also call for mammograms to be done every other year instead of every year, as recommended by current guidelines.
The proposed new guidelines are based on research that looks at the effect of breast cancer screening on society from a public health perspective. This means the researchers were looking at how changing breast cancer screening guidelines would affect the overall public, rather than individual women. In proposing the changes, the task force members said that starting mammograms later in life and doing mammograms less often would save a large amount of money. It also means that about 3% more women would die from breast cancer each year. The task force members felt that the amount of money saved (from fewer mammograms and side effects of extra biopsies and treatment) was greater than the value of more lives saved (3% fewer women surviving breast cancer).
At Breastcancer.org, we are deeply troubled by both the analysis that led to these proposed guideline changes and the effect these proposed changes would have on the health and lives of women. Our specific concerns:


The analysis was based on older mammography techniques, meaning the researchers mostly looked at results from film mammograms instead of digital mammograms.
The analysis was based on some inaccurate assumptions about optimal treatment after breast cancer is diagnosed. For example, it assumed that women diagnosed with hormone-receptor-positive, early-stage breast cancer would receive and benefit from hormonal therapy but not chemotherapy, even though we know that many of these women do receive and benefit from chemotherapy after surgery. Inaccurate assumptions like this may have caused the researchers to underestimate the number of lives that would be lost should the proposed changes in screening be adopted.
The analysis did not adequately consider the combined benefit of early detection (with current screening guidelines) and new treatments that have resulted in steadily improving survival rates in recent years. Screening cannot be looked at in isolation as a snapshot. Screening happens as we continue to improve both diagnosis and treatment. But we can’t treat what isn’t diagnosed.
The proposed guideline changes would mean that many breast cancers would be diagnosed at a later stage, making it harder to become cancer-free. Later-stage diagnoses result in more women with metastatic disease (that has spread to other parts of the body) and more women with large or multiple cancers requiring mastectomy (too late for breast-conserving treatments).
The proposed guideline changes would mean that younger women would be diagnosed later. Breast cancer in younger women tends to be more aggressive, so early diagnosis and treatment is more critical for them. It is the lives and futures of younger women that would be lost if the proposed changes are adopted.

Expressed as nameless, faceless numbers, the 3% decrease in breast cancer survival might seem like an acceptable trade-off when compared to the economic benefits of changing breast cancer screening policies. But breast cancer affects a very large number of women, so 3% of that number is not insignificant. The reality is that more women -- mothers, daughters, sisters, grandmothers, and aunts -- will die each year from breast cancer, which is neither reasonable nor acceptable.
We at Breastcancer.org encourage medical professionals and everyone affected in any way by breast cancer to raise their voices against these surprising and dramatic proposed changes in the guidelines for breast cancer screening. Our belief is that lives should be saved, not lost, and our commitment to you is that we will continue to strongly advocate for policies that support this fundamental mission.
Marisa C. Weiss, M.D.
President and Founder, Breastcancer.org
Director of Breast Radiation Oncology, Director of Breast Health Outreach
Lankenau Hospital
Maxine Jochelson, M.D.
Director of Radiology
Evelyn H. Lauder Breast Center
Memorial Sloan-Kettering Cancer Center
Professional Advisory Board, Breastcancer.org
Emily F. Conant, M.D.
Professor of Radiology, Chief of Breast Imaging
Hospital of the University of Pennsylvania
Professional Advisory Board, Breastcancer.org

[Joe]

Is there anything on the Young Suirvivors Board about this?

Regards
Joe

[Jackie07]

New Mammography Guidelines for Women

Women in Their 40s Should Discuss Risks, Benefits With Doctors, Says Physicians Group
By Miranda Hitti (http://www.webmd.com/miranda-hitti)
WebMD Health News
Reviewed by Louise Chang, MD (http://www.webmd.com/louise-chang)



April 2, 2007 -- The American College of Physicians today issued new mammography guidelines for breast cancer screening for women in their 40s.
The guidelines boil down to this: Women in their 40s should work with their doctors to gauge their personal breast cancer risk and to decide whether to get mammography to screen for breast cancer.
If a woman in her 40s decides not to get a screening mammogram, she and her doctor should revisit that decision every one to two years, states the American College of Physicians (ACP).
In short, the ACP isn't making a one-size-fits-all recommendation. Instead, the ACP says the decision should be tailored to each individual woman in her 40s.
"No simple recommendation applies to all women in their 40s," states an editorial published with the guidelines in the Annals of Internal Medicine.
The guidelines only apply to routine screening mammograms, not diagnostic mammograms taken of specific breast lumps or other breast findings.
Mammogram Studies

A team of experts reviewed 125 mammography studies for the ACP. They included Katrina Armstrong, MD, MSCE, of the University of Pennsylvania.
"Screening mammography probably reduces breast cancer mortality in women aged 40 to 49 years modestly," write Armstrong and colleagues.
They note that many women in their 40s will choose mammography for that potential reduction in breast cancer death.
However, Armstrong's team notes that screening mammograms likely save more lives in women aged 50 and older, since breast cancer becomes more common with age.
In addition, mammograms aren't perfect. They may miss a tumor or flag a benign breast lump, leading to more tests and anxiety.
Mammograms also deliver a low dose of radiation, and it's not clear what the long-term consequences of that may be over a lifetime, note Armstrong and colleagues.
Many women find the mammography procedure uncomfortable. But in the reviewed studies, few women said mammography pain would stop them from getting a mammogram.
Personal Decision

Women's breast cancer risk depends on age, family history, and many other risk factors.
A woman in her 40s should gauge those risk factors with her doctor and decide how she feels about getting mammography to screen for breast cancer, notes the ACP.
"Because of the variation in benefits and harms associated with screening mammography, we recommend tailoring the decision to screen women on the basis of women's concerns about mammography and breast cancer, as well as their risk for breast cancer," write Armstrong and colleagues.

[StephN]

I, for one, was horrified, that this is just a sneak peek at things to come. They are preparing for a national health plan that will give much less access to screenings and hurt mostly the rising number of younger breast cancer patients.

Defintely a step backward, IMHO. Especially since we now have digital mammograms which have much less radiation exposure.

[Jackie07]

"Women in their 40s should work with their doctors to gauge their personal breast cancer risk and to decide whether to get mammography to screen for breast cancer."

Are you kidding me?

My first breast cancer was felt 30 hours before the 'routine' mammogram. I was 43, with no family history of breast cancer.

My recurrence was 'not' found in any of the following mammograms because the cancer was deemed 'scar tissues'. Again, it was caused by 'human error' - the doctor who read the x-ray made the false interpretation ('assumption'?) - and not the fault of mammogram itself.

Mammogram saves lives. It needs to be improved instead of dropped for women between 40 and 50 which, by the way, is one of the peak age for breast cancer incidents. It is not right to place the responsibility on the women to gauge their own risk factors and 'work with' their doctors to get the test.

Can't help but begin to wonder if there's an 'agenda' behind this new guideline since more women (and men) are going to be covered under the health care reform...

[Sandra in GA]

No self breast exams; mammograms only for the 50 and over. Only those "at risk" are to be tested before age 50. Maybe they have not read that 85% of women who are diagnosed with breast cancer have NO family history of this disease. (That was in some of the information I was given at Mayo Clinic at the time of my diagnosis.) Women who have mothers, grandmothers, or aunts with BC are in the minority. Only 15% have family history. Decreasing the mammograms to only 15% of the women between 40 -49 would decrease the cost, but at what cost?

I am in the majority of people diagnosed with breast cancer by having NO FAMILY HISTORY. Why isn't this fact better publicized? Is it because it would cost too much for more women to be more diligent about mammograms?

Mammograms are not perfect. Breast MRIs are much more reliable, but they are very expensive and not readily available. They should be pushing for more reliable mammogams or other tests instead of pushing to eliminate the test that is the standard now.

[lizm100]

I have no history of breast cancer and I am the youngest of 6 girls. If it wasn't for digital mammography, my cancer would have not been caught at the age of 38 at a very early stage. I had no lump but a thickening that only I felt. Due to my being persistent (after 2 visits) my doctor finally ordered a mammogram. At worst case with the present guidelines, I would of had to wait till the age of 40 for a mammogram not 50! I don't want to imagine what would have happened to her2+++ cancer 12 years later.

[RhondaH]

Joe,

Here is a link to the discussion on Young Survival.

http://www.youngsurvival.org/bulletin-board/

[RhondaH]

I'm STUNNED!!!! I was 40 when I was diagnosed by my 1st mammogram (neither surgeon or I could feel it), which was HER2+. Listening to the radio this AM, Dr. Susan Love is in FAVOR of the new guidelines...

[suzan w]

Terrible news...I wonder how much the insurance companies paid for this study?? My tumor was found in a mammogram, and all doctors agreed that Invasive Lobular Carcinoma is rarely found in mammograms because of the nature of the "beast"...ILC does not usually form a tumor but spreads single cell through the bloodstream. I am alive today thanks to a mammogram. No family history either, yet, after 4 years of thinking BRCA tests would be a good idea, and denial from WA Blue Cross, finally got the BRCA approved in NM and...it was positive...Go Figure. This new study is indeed a scary view inito the future of Women's Health (and Men's too because the next study will probably show that men don't even get BC). Fed Up!!! xo Suzan

[Laurel]

Last February or March, soon after the new administration entered office, this suggestion to reduce the frequency of mammograms, and to raise the age threshold was floated. I recall seeing it disseminated via the sycophant media repeatedly over a period of approximately a month. At the time I wondered just how stupid the government thinks we are? I saw this coming months ago. It is a harbinger of what is to come under ObamaCare. God help us all.....

Do not have daughters.....

[nitewind]

I couldn't believe it when I read this....
"
A government task force said Monday that most women don't need mammograms in their 40s and should get one every two years starting at 50 — a stunning reversal and a break with the American Cancer Society's long-standing position. What's more, the panel said breast self-exams do no good, and women shouldn't be taught to do them."
Why are we taking backward steps?

[duga35]

This is #@#!!####!

I know that we aren't supposed to talk about politics here, but to me this is pretty clear cut on the things that the present administration is trying to do to us.

Cleveland Clinic and MD Anderson both told me to make damn sure that my daughter starts yearly mammograms @ age 20 because when a father has MBC that throws up a huge flag for daughters.

I believe that you'll start seeing them say that stage IV patients are terminal so why waste so much money much on them.

Good God I pray that I'm wrong but I think this is just the beginning.




I'm sorry and forgive me, but this has made me freaking mad as hell

[Jaimieh]

I think this new guideline is just a load of crap. I guess by the new guideline I would have never known that the lump in my breast was there because you are not supposed to do your SBE. You know young women (I was 32 at diag.) do not get breast cancer (dripping with sarcasm). I hope the people who came up with it NEVER have someone in their family diagnosed earlier than 50. I have avoided the news because it makes my blood boil.

[Faith in Him]

Can't believe it either. I have no family history and was 37 at dx. What are they thinking?

[Patb]

What can we do???? Are they crazy? My breast
cancer was growing so fast, I was just lucky I
never missed a yearly mammogram. Who are
these people?
patb

[flynny]

Hi Joe, I tried sending this last night on my blackberry, but it timed me out (so frustrating). I am a young survivor! As you can see by my signature below I was dx at 34 (should have been 33). My story as some of the women and men have heard me talk about goes like this... My mother was dx at 54 and there was NO FAMILY HISTORY of BC, so they said I should NOT start having mammo's until 40. I was 31 when I was told this and just 2 years later I found my lump. When I say it popped out over night, it did. However,when I went to see my PCP (who was about my age) said "I think its a cyst" and knowing my mother had BC she did NO FURTHER tests!!! Hold on it gets better....My mother was dx about 2 mos later w/ a 5 cm brain tumor (the radiologist mis-diagnosed her 2 cm brain tumor just 5 mos prior - another story). After focusing my time toward my mother and taking her to all of her appointments, it was now Nov '07 and I found my bras to be stained. So I made an appt. w/my OB-GYN (but her colleague saw me instead). I'm in her office explaining my insane life I was living and that my mother's cancer had mets and she would most likely die within a short period of time. Well after examining me and seeing that the discharge coming out of my right breast she said "I think you have fibrocystic breast change and that I should take 400 IU Vit E 2 x/day. I still have the post-it note she wrote on. I could go on and on. My mother had very dense breasts and I only wish I knew what that meant years ago. If she only had an ultrasound they would have seen it earlier. She had seen her OB-GYN just a couple of months prior to her finding her nipple indented. This whole thing makes me so sad, mad and disappointed in a number of doctors. We are not a statistic. WE ARE INDIVIDUALS!!! I also want to share with you my story that I got to share with my local magazine. Go to www.parentingnh.com. They messed up my staging (which I clarified with the reporter). I also joined our local YSC Manchester, NH group. It is important to let young women know that this could happen to them!

[ElaineM]

Are we starting some kind of group petition to send somewhere? I will sign.
I know several women under 40 in addition to some people on this board who were diagnosed with breast cancer.
I heard one comment on the news this morning about mammograms not being able to detect things under 1 cm and it could take years for tumors to grow to 1 cm.
Are women supposed to sit around and wait a few years for tumors to grow until they get to 1 cm, so they can be tested?
The comment also claimed that women can't find things smaller than 1 cm. Then how come I correctly found malignant tumors close to the surface of my breast skin that were only 1 or 2 mm? My fabulous dermatologist removed them after my oncologist refused to do anything about them. The pathology reports all came back positive for breast cancer.
The point should be to get rid of problems while they are still small if possible.
If mammograms can't detect small problems then researchers need to develop some kind of better testing method that can detect small problems instead of leaving thousands of women without methods of detecting breast cancer.
I lost respect for Dr. Susan Love.

[margiermc]

Go to www.ahrq.gov/clinic/ (http://www.ahrq.gov/clinic/)

Then go to Clinical Information and click, Preventive Services
The U.S. Preventive Services Task Force, aka USPSTF
www.ahrq.gov/clinic/prevenix.htm (http://www.ahrq.gov/clinic/prevenix.htm)
click contact us - www.ahrq.gov/info/customer.htm (http://www.ahrq.gov/info/customer.htm)
go to Frequently Asked Questions -
http://info.ahrq.gov/cgi-bin/ahrq.cfg/php/enduser/std_alp.php

See questions 1-11 and read answers

This is all under the government branch of the Federal Agencies and Commissions - www.hhs.gov (http://www.hhs.gov) - The U.S. Department of Health and Human Services

The Sec. of this department Kathleen Sebelius made an announcement that this is an independent panel of doctors, scientist and researchers and not under any gov't dept.,
I found it all under her department -

This is not a political issue, but there is some problems with a panel that decides new guidelines and is selected under a government department.

[Laurel]

What can we do? Contact your congressmen. Email the White House (not that they will give a damn, but do it anyway) and then...VOTE in the next election.

[Ruth]

I was 36...can't even watch the news. Its too frustrating! Hello don't women usually in the 40 age range have a more aggressive form of BC? I feel like we are being compared to the Ford Pinto....what is the acceptable amount of loss of lives versus saving a few bucks?? Hmmm

[gdpawel]

The news about mammograms is not brand new information based on one study that just came out. The recommendations that the Preventive Services Task Force (PSTF) released is based on research that experts have known about for some time.

Dr. Herman Kattlove, a retired medical oncologist did research on mammograms in the early 1990's. For seven years, until his retirement in 2006, Kattlove had served as a medical editor for the American Cancer Society where he had helped develop much of the information about specific cancers that is posted on the society's website.

On his own personal cancer blog, Kattlove wrote, “Many years ago, the National Cancer Institute (NCI) tried to convince us all to not screen women younger than 50 and were given such a tongue lashing by Congress that they went home, licking their wounds, and withdrew their recommendation.”

Of course, Congress should not have become involved in telling the NCI what information it should make available to the public. Few Congressmen are either M.D.s or scientists trained to analyze and critique medical research. But this illustrates just how politically charged the question of diagnostic testing has become, especially when companies like GE that are making large profits on the sale of diagnostic testing equipment, and their lobbyists are helping to finance Congressional campaigns.

For decades doctors have urged patients to undergo mammograms because they sincerely believed that mammograms saved many lives. They, too, were not receiving all of the information they needed about the risks. Powerful forces stood in the way of widespread dissemination while millions of dollars were poured into the Mammogram campaign.

Kattlove goes on to say, “Likewise, the American Cancer Society also avoids looking clearly at the data and continues to recommend screening for younger women. And the morning’s paper carried lots of outrage from breast cancer specialists and other docs who are committed to screening younger women.

Some of the reasons for this are political and financial. The ACS doesn’t want to enrage its donor base, Congress didn’t want to upset constituents and breast cancer specialists have faith in the procedure. I’m sure all the pink breast cancer organizations are also organizing their protest.

Why this emotion and outrage? I think because we feel helpless when we see women die of breast cancer, sometimes while still young. Indeed, deaths in these young women hit us hard. So we want to do something and our only tool is mammography.

“But mammography is not the answer for these women.” As Kattlove points out in his post, when young women die of breast cancer they are usually killed by very fast-growing aggressive cancers that grow too quickly to be caught by early detection. The tumors crop up, and spread in between annual mammograms. Kattlove continues: “The unfortunate side effect of this delusion [that screening and early detection is the answer] is that we avoid the hard choices like healthy life styles and avoiding cancer-causing drugs such as hormone-replacement treatment.

I would add that while I applaud the PSTF for bringing this research to our attention, I wish that they had done this two or three years ago. From a political point of view, the timing is unfortunate because inevitably, those who oppose health care reform will exploit this report to suggest that, under reform, the Government will use “comparative effectiveness research” to deny necessary care—and as a result patients will die.

In fact, health care reformers, the government and Medicare understand that, after thirty years of telling women that they must have annual mammograms, we cannot turn on a dime and expect them to suddenly absorb the information that for most average-risk women under 50, mammograms pose more risks than benefits.

No one is going to stop covering mammograms. But responsible physicians will begin giving patients more information about what the medical research shows, including the fact that for most women, the danger of undergoing unnecessary radiation, or an unneeded mastectomy or lumpectomy, far exceeds the likelihood that a mammogram will save their lives.

Moreover, it is important to remember that the “comparative effectiveness information” that the government plans to generate will serve to create guidelines—not “rules”—for doctors. In the U.K., doctors use such guidelines about 88 percent of the time, which seems appropriate, giving how much variation there can be in individual cases.

Finally, under reform it is extremely unlikely that insurers (including the public plan) will stop covering treatments and tests (including PSA tests), that have been in use for a long time. More likely, they will lift co-pays and lower reimbursements for procedures that are less effective, while lowering co-pays and lifting reimbursements for procedures that the medical evidence shows are more effective.

In this case, unfortunately, we don’t yet have a good alternative to mammograms, a further reason why insurers will not suddenly stop covering the tests.

http://kattlovecancerblog.blogspot.com/2009/11/new-mammography-guidelines-got-it-right.html

[gdpawel]

According to the Atlantic's John Crewdson, the only American reporter at the Stockholm news conference in 2002, on The Lancet publication of the Swedish meta-analysis, analyzing and updating the half-dozen Swedish mammography studies that told us nearly all of what we knew about the value of mammography, last month, Dr. Otis Brawley, the cancer society's chief medical officer, was quoted in the New York Time admitting "that American medicine has overpromised when it comes to screening. The advantages to screening have been exaggerated."

Crewdson wasn't surprised by Brawley's statement, since he had expressed the same view to him when they met at a cancer symposium in Milan in 2003.

Following the task force report's release, however, Brawley appeared to change direction, telling the Times that the cancer society had concluded that the benefits of annual mammograms beginning at 40 "outweighed the risks" and that the ACS was sticking by its earlier advice. One of Brawley's colleagues said, "He's trying to save his job. He was broiled at home for the interview in which he said that the medical establishment was 'overselling' screening."

Dr. Donald Berry, head of biostatistics at the M.D. Anderson Cancer Center, points out that if the Swedish update is read carefully, the benefit for women 40-50 is really only 9 percent, which is not statistically significant, meaning it could represent the play of chance and not a real advantage. What Brawley failed to mention is that the numbers the news media are flinging around are the relative benefit. Utterly obscured is the number that really matters, the absolute benefit.

http://www.theatlantic.com/doc/200911u/mammograms

[gdpawel]

The other side of the coin is radiation risk imposed by mammography. It is not simply of negligible value in younger women, but may have a net harm effect, if women who have mammograms at age 40 start having higher rates of cancer in irradiated breasts 25 or 35 years later.

The recommendation not to begin mammography until age 50 has to do with medical issues, more than cost effectiveness issues. Mammography is not harmless. You are subjecting women to annual doses of ionizing radiation to the breasts, with some unavoidable scatter to chest wall and lungs. We do not know how many women who are irradiated by mammography in their 40s will develop radiation-induced breast cancer (or even lung cancer) in their 60s, 70s, and 80s.

The other problem is that women in their 40s tend to have very dense breasts, making it more difficult to get an accurate exam. These women often are called back for additional views, giving them even more radiation. There are more false positives, leading to breast biopsies and sometimes unnecessary lumpectomies, in cases where the biopsies are technically suboptimal.

In contrast, in older women, their breasts are less dense, making the examination more accurate, with fewer false positives, and there are fewer years of remaining life to develop a radiation-induced malignancy.

The fact is that we have no truly long term follow up studies to determine very long term risks of carcinogenesis from radiation exposure in mammography.

1. J Radiol Prot. 2009 Jun;29(2A):A123-32. Epub 2009 May 19.

Mammography-oncogenecity at low doses.

Heyes GJ, Mill AJ, Charles MW.

Department of Medical Physics, University Hospital Birmingham NHS Foundation Trust, Birmingham B15 2TH, UK.

Controversy exists regarding the biological effectiveness of low energy x-rays used for mammography breast screening. Recent radiobiology studies have provided compelling evidence that these low energy x-rays may be 4.42 +/- 2.02 times more effective in causing mutational damage than higher energy x-rays.

The risk/benefit analysis, however, implies the need for caution for women screened under the age of 50, and particularly for those with a family history (and therefore a likely genetic susceptibility) of breast cancer. In vitro radiobiological data are generally acquired at high doses, and there are different extrapolation mechanisms to the low doses seen clinically. Recent low dose in vitro data have indicated a potential suppressive effect at very low dose rates and doses. Whilst mammography is a low dose exposure, it is not a low dose rate examination, and protraction of dose should not be confused with fractionation. Although there is potential for a suppressive effect at low doses, recent epidemiological data, and several international radiation riskassessments, continue to promote the linear no-threshold (LNT) model.

[gdpawel]

The Washington Post addressed the mammogram recommendations by asking some questions to Kay Dickersin, director of the U.S. Cochrane Center and the Center for Clinical Trials at the John Hopkins Bloomberg School of Public Health (and a breast cancer survivor).

http://www.washingtonpost.com/wp-dyn/content/article/2009/11/23/AR2009112301801_pf.html

[gdpawel]

The New York Times reports a paper in The Journal of the American Medical Association noted that data from more than two decades of screening for breast and prostate cancer call that view into question.

Besides finding tumors that would be lethal if left untreated, screening appears to be finding many small tumors that would not be a problem if they were left alone, undiscovered by screening. They were destined to stop growing on their own or shrink, or even, at least in the case of some breast cancers, disappear.

http://www.nytimes.com/2009/10/27/health/27canc.html?_r=1

When women in four Norwegian countries began regular mammography every two years, breast cancer rates increased significantly, and this suggests that the mammography may have be detecting cancers that might have spontaneously regressed, according to an article released on November 24, 2008 in the Archives of Internal Medicine, one of the JAMA/Archives journals.

The start of regular screening through mammography in Europe was associated in increased incidence of breast cancer -- this is a relatively normal consequence of any new screening program. However, the authors note, "if all of these newly detected cancers were destined to progress and become clinically evident as women age, a fall in incidence among older women should soon follow." They continue, noting that this has not occurred: "The fact that this decrease is not evident raises the question: What is the natural history of these additional screen-detected cancers?"

To investigate the etiology of these newly identified cancers, Per-Henrik Zahl, M.D., Ph.D., of the Norwegian Institute of Public Health, Oslo, and colleagues observed breast cancer rates in women who were invited to participate in three rounds of screening mammograms between 1996 and 2001 in the Norwegian Breast Cancer Screening Program. A total of 119,472 women between the ages of 50 and 64 participated.

The rates in these women were compared to a control group in the same age range in 1992 who would have been invited for screening, if the program had existed in that year. National registries were used to track cancer rates. At the end of six years, these control women were invited to participate in a one-time screen for cancer prevalence.

Breast cancer rates were higher in the screened population than in the control group -- this was expected, as they were being checked more regularly. However, when the control group was screened, the total number of cancer diagnoses in the control population was lower than those in the screened group. "Even after prevalence screening in controls, however, the cumulative incidence of invasive breast cancer remained 22 percent higher in the screened group," write the authors.Over the course of the six years, 1,909 of the screened women in every 100,000 had breast cancer. In contrast, 1,564 of every 100,000 women in the control group had breast cancer. This was also true for every stratified age.

The authors give a potential explanation for these absent cancers: "Because the cumulative incidence among controls never reached that of the screened group, it appears that some breast cancers detected by repeated mammographic screening would not persist to be detectable by a single mammogram at the end of six years," they say. "This raises the possibility that the natural course of some screen-detected invasive breast cancers is to spontaneously regress."

They continue: "Although many clinicians may be skeptical of the idea, the excess incidence associated with repeated mammography demands that spontaneous regression be considered carefully." They add that this is not an unlikely scenario: "Spontaneous regression of invasive breast cancer has been reported, with a recent literature review identifying 32 reported cases. This is a relatively small number given such a common disease. However, as some observers have pointed out, the fact that documented observations are rare does not mean that regression rarely occurs. It may instead reflect the fact that these cancers are rarely allowed to follow their natural course."

Their findings cannot make a statement about mammograms' ability to prevent breast cancer deaths, they say. "Instead, our findings simply provide new insight on what is arguably the major harm associated with mammographic screening, namely, the detection and treatment of cancers that would otherwise regress."

Robert M. Kaplan, Ph.D., of the University of California, Los Angeles, and Franz Porzsolt, M.D., Ph.D., of Clincal Economics University of Ulm, Germany, contributed an accompanying editorial that notes that lack of knowledge which still persists about the natural history of breast cancer. "Despite the appeal of early detection of breast cancer, uncertainty about the value of mammography continues," they write. "In this issue of the Archives, Zahl et al use a clever study design in an attempt to estimate the value of screening."

"Perhaps the most important concern raised by the study by Zahl et al is that it highlights how surprisingly little we know about what happens to untreated patients with breast cancer," they continue. "In addition to not knowing the natural history of breast cancer for younger women, we also know very little about the natural history for older women. We know from autopsy studies that a significant number of women die without knowing that they had breast cancer (including ductal carcinoma in situ). The observation of a historical trend toward improved survival does not necessarily support the benefit of treatment."

"If the spontaneous remission hypothesis is credible, it should cause a major re-evaluation in the approach to breast cancer research and treatment. Certainly it is worthy of further evaluation," they finally conclude.

The Natural History of Invasive Breast Cancers Detected by Screening Mammography
Per-Henrik Zahl, MD, PhD; Jan Mæhlen, MD, PhD; H. Gilbert Welch, MD, MPH Arch Intern Med. 2008;168(21):2311-2316.

The Natural History of Breast Cancer
Robert M. Kaplan, PhD; Franz Porzsolt, MD, PhD Arch Intern Med. 2008;168(21):2302-2303. Dr. Robert M. Kaplan, chairman of the department of health services at the School of Public Health at the University of California, Los Angeles, who with his colleague, Dr. Franz Porzsolt, an oncologist at the University of Ulm, wrote an editorial that accompanied the study, were persuaded by the analysis, and feel the implications are potentially enormous.

Dr. Barnett Kramer, director of the Office of Disease Prevention at the National Institutes of Health, had a similar reaction. People who are familiar with the broad range of behaviors of a variety of cancer, know spontaneous regression is possible, but what is shocking is that it can occur so frequently.

And Donald A. Berry, chairman of the department of biostatistics at M. D. Anderson Cancer Center said the study increased his worries about screening tests that find cancers earlier and earlier. Unless there is some understanding of the natural history of cancers that are found, the result can easily be more and more treatment of cancers that would not cause harm if left untreated.

Dr. Berry felt that it's possible that we all have cells that are cancerous and that grow a bit before being dumped by the body. Screening tests may pick up minute tumors that would not progress and might even go away if left alone (pseudodisease). Patients will be alarmed and exposed, perhaps needlessly, to the risks of chemotherapy, surgery and radiation.

Spontaneous remissions in cancer suggests that the body can heal itself. It seems like most apparently occur in just a few types of malignancies: malignant melanoma, renal cell cancer, low-grade non-Hodgkin's lymphoma, chronic lymphocytic leukaemia and neuroblastoma in children. However, spontaneous remissions do occur in vastly different other types of cancers.

The very existence of spontaneous remissions represents a threat to some in the cancer industry. But such anomalies can pave the way to a better understanding of the causes of cancer which can then lead to rational therapies. Historical observations of spontaneous remissions of breast cancer after the onset of menopause lead to approaches of hormonal treatment which is a mainstay of adjuvant and palliative therapy in breast cancer.

Regardless, spontaneous remissions represent an important clue as to how the body can defend itself against cancer. Researchers should think "outside the box" at this important phenomenon rather than see it as a threat to their conventional thinking and appreciate the insight it may provide to rational approaches to cancer treatment.

For some common cancers, it is not clear that early detection and treatment actually prolong patients' lives. Early detection may just mean patients spend a longer time knowing they have cancer, and yet die at the same time they would have died anyway if the tumor had been diagnosed later. A decision to forgo cancer screening can be a reasonable option.

Literature Citation: Arch Intern Med. 2008;168(21):2300, 2302-2303, 2311-2316.

[Jackie07]

Since all human beings are all going to die at a certain age, why bother with all the immunization, prevention, and treatment? Why not just let everyone die in their natural course? Wouldn't that guarantee a better human race since all the ones with gene/other defects would die unborn, die premature, or die young... I would say that would be the most cost-effective way. (Many had attempted this kind of thinking (practice) since 7, 8 decades ago.)

I could agree to a guideline about not to screen everyone for brain tumor starting age 40 (or any age, for that matter.) During my struggle to have my life-long brain tumor diagnosed and treated, I had experienced the bias of sexism and racism, and problems about insurance coverage (out-of-network special contract, pre-existing condition...etc. ) We actually have had to get a lawyer to be our 'fall-back' person.

But breast cancer involves such a big population. Early detection is so crucial for prolonged lives. It's heartless/senseless to say that a 'mere' 3% extra lives saved is not significant enough to justify the more cautious/cost effective approach. For many of us who are/have been struggling to make sense of the diagnosis of this serious illness, treating us as mere numbers is equivalent to cruel and unusual punishment.

That said, I do think this is a rare opportunity to have a national/global debate on women's health. I'd like to hear more comments from people like Dr. Bernandin Healey, former Director of NIH who's responsible for the Women's Health Initiatives, the first comprehensive study on women's health.

I am breastless, childless... why should I care? Because I want my experience to be heard. I want my case to 'count'. I want to help anyone that can be helped. Chinese has a saying (commonly heard in Kungfu stories,) "Saving one life is better than building a seven-story temple." 'Saving private Ryan' was just on TV a couple of weeks ago for Veteran's Day. Listen to Tom Hank's narration, then think about the breast cancer debate. There's at least one thing the two have in common (in addition to the explanation of why Ryan's life was worth saving), "We are at war."

[Sandra in GA]

Jackie,
Thank you for you very insightful response. I suppose I had one of those cancers that really isn't harmful, DCIS. However, when that was removed at the same time they removed the 3cm HER2+ tumor that was growing on top of it, I did some research and learned that this occurs often. It is common for HER2 tumors to form on top of DCIS. No one seems to want to acknowledge that.

It is so sad to fight so hard to overcome this disease and then realize that a number of people feel we are costing the "system" too much. They don't want to know about breast cancer raging inside our bodies. They just don't care.

Why is it that when AIDS was first discovered an all out war was begun and now there are millions world wide that the US provides medication and care for? Don't we count just as much?

I am truyl thankful for all the research that has brought us Herceptin, lapatinib, and T-DM1. And, I am thankful for all these uncensored discussions on this board. I truly believe that knowledge is power and I feel I am constantly learning since joining this board. I truly hope the board remains as is and doesn't splinter off into a "non-controversial" form. I read everyone's opinions and glean from all views.

Thank you all,
Sandra

[hutchibk]

Sandra - your question about AIDS is very timely, considering that this week the WHO (who I am not at all a fan of) released an opinion that AIDS needs to be treated earlier... http://news.yahoo.com/s/ap/eu_med_hiv_treatment

Makes one wonder why the all out assault on women's health - new mammo recommendations, new pap smear recommendations, new heart disease recommendations which all pull back from the last decade or more of recommendations that have saved women's lives... and are our lives not seen as valuable as someone who has AIDS? or is AIDS less expensive to treat than these three women's diseases after diagnosis? Lots of very curious questions these days.

[gdpawel]

The USPSTF would seem as unlikely a target for attack as Santa's elves. For a quarter-century, this squeaky-clean, underappreciated group of doctors and nurses who are specialists in preventive medicine has toiled away in obscurity in the selfless service of public health.

Appointed by the Agency for Healthcare Research and Quality, the task force panel is independent and does not take costs into consideration and it evaluates only the risks and benefits of preventive medicine strategies. The task force must be reeling over the vicious reaction to its latest recommendations regarding screening mammography.

The guidelines are based on an exhaustive analysis of recent studies from Sweden, the United Kingdom, and the U.S. Breast Cancer Surveillance Consortium involving a total of more than 830,000 women, and a specially commissioned study funded by the National Cancer Institute in which six separate teams studied the risks and benefits of 20 screening strategies through mathematically modeling.

The panel recommended against routine screening mammograms for women 40-to-49 years old, and screening every two years for women 50 to 74. These not-exactly-radical recommendations are almost identical to the World Health Organization guidelines, which recommend screening every one-to-two years between ages 50 and 69.

Because mammography is less effective at distinguishing cancers from normal breast tissue in premenopausal women, mammograms miss cancers in some younger women and raise a false alarm in others. This can cause real harm; one woman may ignore a cancerous lump because her mammogram was normal; another may undergo an unnecessary surgical procedure because her mammogram was suspicious.

http://www.thehastingscenter.org/Bioethicsforum/Post.aspx?id=4194

[Rich66]

"Because mammography is less effective at distinguishing cancers from normal breast tissue in premenopausal women, mammograms miss cancers in some younger women and raise a false alarm in others. This can cause real harm; one woman may ignore a cancerous lump because her mammogram was normal; another may undergo an unnecessary surgical procedure because her mammogram was suspicious."

Granted, significant(albeit unpublicized) false negatives mean a clear mammo still means coninued vigilance. Did they determine how many would benefit from unnecessary biopsy? How many "unecesssary" biopsies happen for every early detection and curative surgery? That ratio would be necessary for an informed discussion of cost/benefit. Looking to the future, yes..more accurateand less harmful diagnostic tools (imaging and/or serum) would be a goal.
Santa's elves have no credible input.

[Sandra in GA]

Hutchibk,
Aren't the majority of AIDS victims male?

Gdpawel,
Are you a breast cancer victim? I don't see any treatment history.

Rich,
Thank you for redirecting this discussion. Everyone knows The New York Times is a very liberal publication and I, for one, place no credence in their ability to present unbiased information.

[gdpawel]

Rich66

http://www.ahrq.gov/clinic/3rduspstf/breastCancer/brcanrr.htm

Sandra

My wife was a cancer treatment victim. I have a number of relatives that had or have breast cancer. I became intensely interested in cancer medicine by virtue of working through, enduring and surviving my wife's illness. My college education and experience helped me to gather knowledge by virtue of voluminous reading and hundreds of hours of past and ongoing personal communication with noted authorities and experts in the field.

[Sandra in GA]

I sincerely am sorry for your lose. I lost my husband of 35 years to glioblastoma. I appreciate your research and respect your perspective. Since being diagnosed July, 2008 with breast cancer I have also been reading, researching, and trying to digest volumns of information. I sincerely believe that knowledge is power.
I was not supposed to get this disease. I have NO family history, did not smoke, or otherwise abuse my body. I did have to have my uterus and ovaries removed when I was 29 and had been on harmone replacement all these years. Imagine my surprise when my cancer was negative to estrogen. At first I assumed I had done this to myself. Then I began to learn about HER2+ breast cancer and joined this forum. Being a registered nurse, an educator, and past Director of Nurses of a nursing home, I do know that quality of life important. However, with as much life as I still have within me, I do not want that to be an excuse to not receive life giving treatments.
Respectfully,
Sandra

[lizm100]

I just visited my health insurance company's website and on the front page of there is a message saying that they will not be changing the mammogram guidelines despite the recent study. My gut tells me that this is only for the time being....... Have any of you checked with with your insurance companies as to if they will be changing their mammogram guidelines because of the study?

[gdpawel]

Rather than explaining the science behind the recommendation, the news media exploited the politics of it. The press has succeeded in sowing seeds of confusion and doubt.

"USPSTF recommends against routine screening mammography in women aged 40 to 49 years. The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient's values regarding specific benefits and harms."

According to Diana Petitti, MD, MPH, Vice Chair, USPSTF, “You should talk to your doctor and make an informed decision about whether a mammography is right for you based on your family history, general health, and personal values.”

According to Dr. Steve Woloshin of the Veterans Affairs Outcomes Group, "over a ten-year period, a woman age 40 to 49 has a 0.28% chance of dying of breast cancer if she goes for regular mammograms, and a 0.33% chance of dying of breast cancer if she doesn't. A 40-year-old's chance of developing breast cancer over the next decade is 1.4%, according to the National Cancer Institute.

Mammograms cut your risk of death by breast cancer by 0.5% for women over 40 who have mammograms, and 0.4% for those that do not have mammograms.

Dr. Donald Berry, head of biostatistics at the M.D. Anderson Cancer Center, calculated that a decade of mammograms for a woman in her 40's increases her lifespan by an average of 5 days.

However, these are the numbers that get lost in the media rhetoric, according to Gary Schwitzer, the dean of health care journalism. But thanks to fourty years of instilling breast cancer awareness in the minds of American women, most remain convinced that breast cancer represents a real and imminent danger.

Unfortunately, there has been a failure to recognize the difference between "cost-benefit analysis" (which focuses on costs) and "comparative effectiveness research" (which considers risks and benefits for patients, regardless of cost). The USPSTF is not charged with comparing the benefits of a treatment to the cost, its mission is to compare benefits to risks.

According to Dr. Diana Petitti, "The US Preventive Services Task Force reviewed the evidence without regards to cost, without regard to insurance, without regard to coverage."

And for the nativist out there, the Task Force is an independent panel of private sector experts in prevention and primary care, set up in 1984 by a physician then serving in the Reagan administration. The idea was to fund a group that could operate outside of government to review ongoing research and data in an effort to determine how well certain strategies to combat disease actually worked.

Obstetrician and gynecologist Dr. Peter Klatsky says, "the USPSTF is composed of physicians and scientists whose only motivation is to improve the health and wellness of women nationwide. Being invited onto the USPSTF is a huge honor. These are our best and brightest. They strive to determine what is best for our patients, our community, and our loved ones."

[Jackie07]

Just received this link from WebMD; it provided good explanation/clarification and I thought I would share it with everyone here:

http://www.webmd.com/breast-cancer/features/new-mammogram-screening-guidelines-faq

[Sandra in GA]

This is a very balanced explination that presents both sides. I am still concerned that very little emphasis is being placed on the fact that 85% of women diagnoised with breast cancer have NO FAMILY history and therefore are considered LOW risk. When I was told I had HER2 breast cancer with no family history, my oncologist down at Mayo Clinic told me that one good thing was that I had not passed the breast cancer gene to my daughter or granddaughter. Based on my own experiences and the fact that the US has lower deaths from BC than other countries that do not begin mammograms until age 50, I still maintain that this recommendation is faulty. I am looking forward to the senate investigation proposed by the senator from Alaska into this panel and its recommendations.

[hutchibk]

Perhaps the smoking gun? The Senate health reform bill relies heavily on Task Force recommendations. The Preventive Services Task Force is mentioned no less than two dozen times in the Senate bill (26 total mentions). This is scary crap. This is much much more than the milquetoast quote from Dr. Peter Klatsky who says, "the USPSTF is composed of physicians and scientists whose only motivation is to improve the health and wellness of women nationwide." I call BS all over those who try and defend this. Something just isn't adding up.


http://www.ncpa.org/pdfs/who_determines_mammogram.pdf

[gdpawel]

The rampant fear-mongering rhetoric that has framed much of the media's response to the recommendations seems to have focused primarily on individual women and doctors who are outraged.

The USPSTF is an independent group of physicians and academic experts, not a government agency that makes policy. Even H.H.S. Secretary Sebelius said the Task Force has presented some new evidence for consideration (by the Senate or whomever) but (H.H.S.) policies remain unchanged.

And the Task Force recommendations state quite clearly that the decision about mammography screening before age 50 should be an individual one and take into account patient context, including the patient's values regarding specific benefits and harms.

Remember the non-nuanced advice women got for decades about menopausal hormone replacement therapy?

Groups like the National Women's Health Network first raised doubts about the value of mammography screening in women under 50 back in 1993. Cynthia Pearson, long-time executive director of the National Women's Health Network, wrote on their website:
We’re glad that the [U.S. Preventive Services Task Force] has done what they’re supposed to do. They’ve told the truth about what studies have found, and now women have a better chance of getting an honest assessment about the value of a heavily promoted technology. Information is always a good thing and we’re glad more women now have access to good information.
But, I’m not at all happy today. Not even to be proven right about things that I took a lot of criticism for saying. Rather, I’m outraged. We’ve known for 16 years that mammography screening doesn’t work well for women before menopause, and not at all for women under 40. And at the same time, we’ve known that a significant number of breast cancer cases occur in women under 50. So once we knew mammography wasn’t good enough, the next step was obvious – we need to find something better.

[hutchibk]

I always find it interesting when national political fear mongers call something that doesn't serve their purposes fear mongering. Something stinks no matter how much anyone tries to pretty it up. We haven't known anything for 16 years. And, I promise we don't know anything now as certain as many would like to purport. It works better than nothing at all, which is what came before it... and there are MILLIONS of women alive today in their 30s and 40s due to mammos, MILLIONS who I promise are NOT accounted for in the misleading statistics and ridiculous study findings. To the best of my recollection, no-one ever asked me (or any of us) what tool actually diagnosed us... be it self exam, clinical exam, mammo, ultra-sound confirmation, biopsy, etc. We are NOT accounted for in the "study results." Of course we need more innovative diagnostic tools and I am guessing that medical innovation companies are working on it. And until we have them, sending a message to young women that "you don't need to worry about it until you are fifty" is absolutely outrageous and insane.

[Patb]

I agree totally. My oncologist and rad Dr. are
replacing my mammogram which did find my
fast growing cancer with BSGI every six months.
They say they can see lesions indpendant of
tissue density and discover early stage cancer?
patb

[Sandra in GA]

Patb,
It seems that your onc and radiation Dr. are on the cutting edge. I no longer have any breasts, but for people who do the BSGI looks like it could help solve the problem of too many unnecessary biopsies. I found the following article that is full of very promising information:
Breast-Specific Gamma Imaging (BSGI) Can Reduce The Number Of Unnecessary Breast Biopsies When Compared To MRI at www.medicalnewstoday.com/articles/142818.php (http://www.medicalnewstoday.com/articles/142818.php)

I wonder why the panel didn't mention this?

[hutchibk]

One wonders... and I like the sound of Thermography as well.

[Sandra in GA]

Oh, yes, and that is based on the fact that cancerous tumors have increased blood supply and therefore more heat.

[sarah]

If you think they'd change the requirements for mammograms, you're out of your minds! Everyone in Congress would be voted out of office. How many women are there in the US???? It's a scare issue and a dumb one.

[Rozebud]

If I followed those new guidelines, I'd be dead and not typing this right now. :)

[StephN]

Nice to see you Rozbud. Bet you have been active on the other boards with this development!

Sarah -
I wish what you say was true.
The legislators who will be voting on a new health care plan are ALREADY in office (many as "fixtures"), and just who is going to run against them on a Let's Do Mammograms platform??

On the other hand, if there is too much hue and cry, these recommendations should get watered down and some kind of compromise would hopefully be the outcome.

My fervent HOPE is that some new screening techniques will soon emerge and these WILL be offered to women of younger age AS SCREENING, and not just on the basis of a complaint that should get checked out.

Might as well pray for rain in Seattle, huh?

[Carolyns]

Hi Gdpawel (and others... luv you all),
I am speaking to you because I have always followed you posts and find you to be extremely thoughtful and knowledgeable. I am a Stage IV breast cancer warrior. I have had this disease for 21 years 3 different times – 32 years old, 42 years old and then mets at 49. The first 2 cases were diagnosed via mammogram although the first time I was delayed by a year due to guidelines at that time. My doctor felt that I was too young.

Anyway, I had the pleasure of meeting Cynthia Pearson and other amazing powerful women at a breast cancer conference last year. I was hopeful that in the breast cancer and women’s community I could find hope and that I could calm some of my fears about being lost in statistics. You see according to all of the guidelines and evidence I didn’t and don’t have any options. I pointed out the fact that over 75% of the treatments that have kept me alive over the past 4 years are not approved for breast cancer. I mentioned that as I am more heavily pretreated I am eligible for fewer and fewer promising clinical trials. There is NO evidence to support anything we are doing and yet it is working. I am working – full time – raising my son – helping my disabled parents – loving life. Expensive treatments work (extend my life) for about 3 to 4 months each - but in a chain that adds up to 4 years so far. Anyway, I wish I could say that Cynthia had some words of encouragement for me but she did not. In this big breast cancer movement I am the minority (young survivor, no history, over 5 year cancer free both times, mets for 4 years and counting) but I will not go down without a fight.

At the same conference was a speaker who had worked with HIV / Aids patients. I asked how the HIV / AIDs community had come so far in getting treatments paid and patients accommodated. And why he thought that people like me were being forgotten in this breast cancer movement. He said that he thought that the reason could be that when you have HIV – Aids that everyone is “outside of the life raft” with breast cancer you have 95% (or so) of the population at any time in the life raft (cancer free) so there is less focus on the minorities of the group. Personally, I hope that as warriors we will fight hard not to leave our fallen behind even if the larger organizations feel they must.

In my long journey with this disease I am here to tell you that the population of young women getting this disease is growing exponentially. I see it. In 1989 I looked long and hard all over Florida to find one other young woman with breast cancer… now they are everywhere.

[gdpawel]

Carolyns

Interesting that you point out over 75% of the treatments that have kept you alive over the last 4 years are not approved for breast cancer.

Because tumor response can't be predicted from anatomical location, it was thought that we should start selecting treatments based on what genes and proteins can tell us about how the tumor will respond to a drug. If there is too much reliance on what has clinically been shown to work in some cases for a particular anatomically defined cancer, we may not choose the best therapy for the individual patient.

However, all the mutation or amplification studies can tells us is whether or not the cells are potentially susceptible to this mechanism of attack. They don't tell you if this targeted drug is worse or better than some other targeted drug which may target this particular mechanism of attact.

The cell is a system, an integrated, interacting network of genes, proteins and other cellular constituents that produce functions. You need to analyze the systems’ response to drug treatments, not just one target or pathway (even a few).

Targeted drugs are poorly-predicted by measuring the ostansible target, but can be well-predicted by measuring the effect of the drug on the function of live cells. You still need to measure the net effect of all processes, not just the individual molecular targets.

You can choose to test the biopsied tumor by genetic targets or pathways (does the cell express a particular target that the drug is supposed to be attacking) or by a cell-based assay that profiles the function of cancer cells (is the whole cell being killed regardless of the targeted mechanism/pathway).

Few drugs work the way we think. More emphasis should be put on matching treatment to the patient (personalized medicine), through the use of individualized pre-testing.

[Jackie07]

Rereading all the postings on this thread, I thought of another important, possibly 'biased' factor of the statistics used by the task force. One of the reason why there's a 'mere' 3% (I still find that term appalling) improvement of survival rate is because the 'number' of diagnosed cases has increased dramatically due to the mammagram. Women young and old who would have died from other causes (due to weakened system because of undiagnosed breast cancer? more accident prone?) instead got 'breast cancer' listed on their death certificates.

Adding the huge number of women who's diagnosed with DCIS who may or may not have invasive cancer, I really think this 'number' game is very, very deceiving.

On the flip side, I sincerely hope this debate brings more attention to the issue and we will see improved diagnostic methods and treatment options as well as improved survival rate.

[Carolyns]

gdpawel,

I pointed out the fact that 75% of the drugs used have not been approved for breast cancer but they are approved for other cancers. So, I guess as a relatively new population "Chronic Stage IV Breast Cancer Patients" under today's guidelines or lack thereof - my doctor is practicing a version of personalized medicine. The fact for me is that there isn't any evidence to show which way we should go with treatment. So my next question is - What happens to me when evidence based medicine and guidelines are the standard of care and therefore what is coved by insurance? I need some scientific person to argue my side of the argument against "statistics" and to me statistics lead away from personalized medicine. I hope and pray that I am wrong but I can tell you it keeps me awake at night. I want to see my little boy grow up and I don't want to be told that a medicine that is already on the shelf is too expensive for me.

I enjoyed reading all of your other comments too. This cancer I have definitely relies on multiple pathways as sometimes I get a mixed response. I am starting to wonder about the tumor testing for chemo response but as I said so far everything has worked for a while.

Thank you for taking the time to read my long post.

Carolyn

[StephN]

Carolyn, you bring up some thought-provoking points. I was wondering if our access gets cut back, will there even BE as many clinical trials?? After all they DO have to go through FDA approval. The drug companies may not have as much money to run all these trials.

I have been mostly treated in clinical trials. Some worked and some did not. At least some knowledge was gained and treatments ruled out as more information became available in treating HER2 positive cancers.

So many questions and we don't know where it will all lead.

[Margerie]

ACS response

http://www.cancer.org/docroot/MED/content/MED_2_1x_American_Cancer_Society_Responds_to_Chang es_to_USPSTF_Mammography_Guidelines.asp

[Carolyns]

Hi Steph,

It is changing as we speak and not due to the government, right now but insurance companies. We already saw Sheila get denied Tykerb unless she took it with Xeloda (which she didn't need). On 60 minutes the other night there was a discussion about end of life care and just how costly it is... the picture was of a 90 year old woman hooked up to machines. The next statement is that Avastin has a cost of $45k and only extends the life of an advanced breast cancer patient by an average of a couple of months... Those are statistics but we all know that there are many like me living from treatment to treatment extending life for many years. Yes, each one may only take us a few months but then we go on the the next.

Well I am headed off to my Miami Dolphin cheerleader reunion this weekend... after 14 lines of treatment and I don't look or feel anything like that poor old woman in the bed. No one will have any idea what my "cancer life" is like... I will just be one of the girls having blond moments. The only way I am at the end of my life is if they determine that my treatment is too expensive.

I hope that my non mets sisters will fight just as loud and hard over this issue as they / we all did over the mammogram. It really worked!

I think that it is a false choice to say that we can either get these expensive drugs or die. If the AIDs / HIV community could get this worked out than so can we.

Carolyn

[hutchibk]

I hate to say it, but I believe that 60 minutes presents a pretty slanted perspective of many stories... they have a defined philosophy about end of life issues (and many societal issues), and will present them to fit their perspective.

[hutchibk]

Carolyn, what you described above at the breast cancer conference and your statement/question about heavily pretreated is exactly my point about anecdotal clinical success vs. statistical "proof"... and is the genesis of my new favorite quote: "I would rather be ancecdotally alive than statistically dead" : )

[gdpawel]

"60 minutes presents a pretty slanted perspective of many stories"

Like the Faux News Channel

[micheleu]

Isn't it IRONIC this is all coming out right at the health plan push.....

[gdpawel]

Eleven Health & Prevention Organizations Defend USPSTF Mammogram Recommendations in Letter to Congress

http://www.prnewswire.com/news-releases/11-health--prevention-organizations-defend-uspstf-mammogram-recommendations-in-letter-to-congress-78323577.html

[Midwest Alice]

What is Faux news channel and what does it have to do with this discussion?

Or maybe I should ask you, gdpawel, to stay on topic.

[PinkGirl]

I think Faux News is a play on words of Fox News. There's been mention
of CNN, Fox News, 60 Minutes, The New York Times etc. etc. .... so this
is not exactly "off topic" ... and even if it were off topic, I think we're
allowed to do that here ... go off topic ....

[Midwest Alice]

Oh I get it, just a pot shot at Fox news!
That gdpawel, always adding a little spark to the discussion.

Off topic is ok...

We put up two big Christmas trees at our home. My son came home sick from college today. I have to nurse him back to health he has finals this week! Hilary Clinton and Rober Gates were on three of the four Sunday news shows?

This is a game. See if you can guess which ones? I always tape all 4 because some are on at the same time or overlap.

OK I will get you the 4 to pick from to make it easier.

A. Meet the Press
B.This Week With George Stephanopoulos
c. Face the Nation
D. Fox New Sunday

Come on gdpawel, you want to play?

[PinkGirl]

I know, I know. It was Face the Nation, Meet The Press
and This Week with George Steph...... I'm a quiz answering
fool ...

[Midwest Alice]

Ding! Ding! Ding! We have a winner!! Pink Girl is the winner!

[Carolyns]

If getting political will keep me alive then I am up for grabs. Fighting Stage IV is no game show and with all of the talk about the cost of end of life care I am hoping that we could get the Right to Life folks working for us the way they did for Terry Schiavo (may she rest in peace). I don't know what her end-of-life request would have been but mine is not to end my life by saying the drugs I take are too expensive.

This topic keeps me up at night and I am love Brenda's saying, "I would rather be ancecdotally alive than statistically dead"

[Jackie07]

The dust is settled:

[The links have been listed on the 'Breast Cancer Newsfeed']

http://www.healthcentral.com/breast-cancer/news-425488-98.html

http://www.healthcentral.com/breast-cancer/news-425492-98.html

I'm glad [and proud] to have participated in this important debate. This is probably the first time that I have experienced first hand [that I might have a hand in it :)] the power of advocacy. "What a [wonderful] feeling!"

[gdpawel]

Health care is built around the doctor-patient relationship. Doctors devote a great deal of time and money to their medical education and patients seek out their expertise.

This bill is a perfect example of Congress disrupting this important relationship by placing it between you and your doctor. Remember, Wendell Potter was a corporate bureaucrat who stood between you and your doctor (although he own up to it).

So, between the government bureaucrat (what you see is what you get) and the corporate bureaucrat (who hide behind the veil of freedom, choice and non-bureaucracy but who are really just bureaucrats with different masters), they are still coming between you and your doctor.

[StephN]

Seems to me that all this ire and subsequent debate indeed had the effect of RAISING AWARENESS.

I have had more people talk to me about this who knew I am a long term BC patient, but never went into the details. They suddenly became interested and indeed learned some things.

Some of those people I talked with contacted their congress people. The controversy snowballed!

[gdpawel]

Wall Street Journal's Alicia Mundy reported that the final health care bill in Congress is likely to require coverage for more mammagrams than the US recommended after women's groups, doctors and imaging equipment makers stepped up pressure on lawmakers.

From the article:

Adriane Fugh-Berman, a professor at Georgetown University's medical school in Washington, D.C., said the evidence supports less-frequent mammograms. "You have to ask if there's conflict of interest, because breast-cancer advocacy has become a big business," she said.

Ties between nonprofits and companies have been under attack by some consumer watchdogs. Sen. Chuck Grassley, an Iowa Republican, sent letters last month asking 33 major nonprofit groups including the American Cancer Society to disclose their industry funding.

The American Cancer Society said it has received less than $1 million from screening-device makers in the past five years. Its spokesman said the donations, which are small relative to the society's annual revenue of more than $1 billion, don't influence its recommendations.

The American College of Radiology, a trade group, called the new government guidelines scientifically unfounded, and said that if the guidelines are adopted, "two decades of decline in breast-cancer mortality could be reversed and countless American women may die needlessly."

Its flagship research program studies the role of radiology in medicine. It received donations of at least $1 million each from General Electric Co.'s GE Healthcare and Siemens AG, according to the trade group's 2007-08 annual report. Both companies make mammography equipment and MRI scanners. Several other medical-device makers donated at least $100,000.

A spokesman for GE said the new guidelines conflict with successful early-screening programs. A representative of Siemens didn't respond to a request for comment. The college of radiology said sponsors haven't influenced its research. It has spent $480,000 on lobbying in the past two years, while the imaging industry spent more than $2.5 million.

One of the largest breast-cancer-awareness groups, Susan G. Komen for the Cure, has worked with GE and other companies. Komen turned to GE in October when it lit the Great Pyramids pink to mark a major screening initiative in Egypt. Neither GE nor the Komen group would say how much the event cost.

In 2007, GE sold limited-edition pink cameras to Home Shopping Network, which donated a portion of the sales to Komen. Imaging and film companies whose products go into mammography equipment have made pink DVD players, pink computer flash drives and pink cellphones, a portion of whose sales raise money for Komen and other breast-cancer groups.

In events at the Capitol, Komen for the Cure founder Nancy Brinker has praised GE's digital mammography technology, and she received a public-service award from the company.

Ms. Brinker, sister of the late Susan G. Komen, said some patient-advocacy groups tended to represent industry views, but her organization's push has always been early detection.

A traveling mammogram van purchased this fall by the American Cancer Society, Komen and other advocacy groups for the Dana-Farber Cancer Institute in Boston touts a new GE Healthcare Senographe Essential digital-mammography system.

A lobbying group leading the charge in Washington against the new guidelines is the Access to Medical Imaging Coalition, whose members include GE and Siemens and several nonprofit patient groups, the college of radiology and leading doctors societies.

The coalition's director, Tim Trysla, is a lobbyist at a Washington law firm. He has been working in Congress against proposals to cut billions of dollars in Medicare spending in the health-overhaul bill that could hurt imaging-device makers.

http://online.wsj.com/article/SB126325763413725559.html

[gdpawel]

The storm that greeted the USPSTF guidelines on mammography screening for women in their 40s prompted the Senate to insert a mandate in its health care reform bill that every insurer cover every mammography screening test at no cost to beneficiaries.

The Journal of the American Medical Association (JAMA) published an article, "The Benefits and Harms of Mammography Screening: Understanding the Trade-offs," reminding physicians and women about the serious health costs of adopting that policy.

The authors, Dartmouth's Steven Woloshin and Lisa Schwartz, used the "number needed to treat" analysis to point out:

Without screening, 3.5 of 1000 women in their 40s will die of breast cancer over the next 10 years (ie, 996.5 of 1000 will not die of the disease).

Screening reduces the chance of breast cancer death from 3.5 to about 3 of 1000. In other words, 2000 women between 40 and 49 must be screened annually for the following ten years to save one life.

For most women with cancer, screening generally does not change the ultimate outcome; the cancer usually is just as treatable or just as deadly regardless of screening.

Finding cancers that were never destined to cause symptoms or result in death is the biggest problem with mammography, especially among younger women. Since it is impossible to know which cancers caught early are benign, all are treated with surgery, chemotherapy, radiation, or some combination. Overdiagnosed women undergo treatment that can only cause harm, and must live with the ongoing fear of cancer recurrence.

While only 7% of women believe there could be breast cancers that grow so slowly that leaving them alone would not affect their health, randomized clinical trials have consistently shown that the groups undergoing mammography have more breast cancer, even after 15 years of follow-up. This persistent difference represents overdiagnosis.

Estimates of the rate of overdiagnosis range from 2 women overdiagnosed for every breast cancer death avoided in one trial, to 10 to 1 in another.

Woloshin and Schwartz concluded: "The politicalization of medical care is wrong. Promoting screening irrespective of the evidence may garner votes but will not create healthier voters. People need balanced information. Simplistic slogans touting only the benefit are deceptive. Simple, standardized summaries about the benefits and harms of testing would help foster good decision making."

[gdpawel]

A thoughtful piece was published in the New England Journal of Medicine about the miscommunication that took place last November of what the USPSTF tried to convey and the complicity of certain organizations in adding to that confusion.

http://healthpolicyandreform.nejm.org/?p=12525

[Eddy]

We are seeing the impact of the budgets cuts of the new elected republican congress that will allow the fat cats to increase their wealth at the expense of people. The beast defense for women in surviving breast cancer is early detection.

These republicans who claim the people of spoken fail to describe the people they are referring which is the insurance companies and their fat cat pals.

More emphasis should be placed on improved technologies that can pinpoint and detect breast cancers at their earliest stages. Research has shown that early detection provides the greatest opportunity for women to experience positive results from treatments.

Definitely a step backwards for all.