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Posted on: Nov 16, 2009 05:11PM
This is so wrong and will cost lives. How many younger women have posted here under age 50 and diagnosed with breast cancer?!? How many have died under age 50?!?Log in to post a reply
Posts 1 - 30 (53 total)
Nov 16, 2009 06:24PM - edited Nov 16, 2009 08:49PM by otter
I can't even discuss this sanely, right now. Not only are they advising women less than 50 years of age to stop having mammograms completely (not even a screening mammo), but they're telling those of us over 50 to have them just twice a year...and probably to stop at age 75, because BC isn't worth treating then anyway (since women dx'd at that age will probably die of something else first). And, they're saying clinical breast exams (the ones our docs do) are of "questionable" value; and self-exams are worthless. Here's a quote from an AP article I had in my Yahoo News in-box: http://news.yahoo.com/s/ap/20091116/ap_on_he_me/us_med_mammogram_advice
The new advice says:
--Most women in their 40s should not routinely get mammograms.
--Women 50 to 74 should get a mammogram every other year until they turn 75, after which the risks and benefits are unknown. (The task force's previous guidelines had no upper limit and called for exams every year or two.)
--The value of breast exams by doctors is unknown. And breast self-exams are of no value.
Well. If those new rules had been in force 2 years ago, I would be sitting here typing this post with a very large tumor in my left breast and probable mets to my nodes.... undiagnosed. Since my tumor couldn't be seen on a mammogram, and my GYN insisted he couldn't feel a lump (and wouldn't refer me for U/S) and my self-exam (which found the lump) was "of no value", ...
Dr. Weiss has a banner-headlined commentary on the BCO site about the new guidelines. Her title is, "Lives will be lost with proposed changes to mammograpy guidelines." This must be why she was recruiting people to talk to the news media about their lives having been saved by a mammogram in their 40s.
Like I said, I can hardly type this, I'm so angry. Gotta go and think about this.
Nov 16, 2009 06:31PM thepinkbirdie wrote:
i just saw this on the Yahoo news. this just pisses me off beyond words.
i was diagnosed this year at the age of 43. i have no family history of breast cancer and i'm not considered at high risk.
according to the #$^$&%*(!! government panel of doctors, i would have had to wait another 7 years before my cancer would be found!!
they are so full of #$^&!!! my blood is boiling.
Nov 16, 2009 06:45PM - edited Nov 16, 2009 06:59PM by Annie62
I just got interviewed by abc news about this. I should be Good Morning America in the morning. I don't think I came across as angry as I feel about this.
I am the perfect example of someone who needed a mammo before 50 - Stage IIIC at age 41 found by a mammo - tiny cancer but it was in 11 lymph nodes. I'm now five years out and doing well.
They quote Susan Love as supporting the change and Marissa Weiss' views were a little confusing as reported by abc. Not clear as shown in the statement on this website.
I'll post again later.
Nov 16, 2009 06:47PM cmb35 wrote:
I love the way this new recommendation was released just after the articles about girls as young as 10 developing breast cancer!
I truly believe I am alive today because of finding the lump myself, and then having the mammogram, which was compared to my initial screening mammogram just one year prior at age 40, in which no lump could be seen. (Well, that and the surgery, chemo and radiation :-)
Truly criminal in my opinion!
Nov 16, 2009 07:30PM - edited Nov 16, 2009 07:52PM by CasinoGirl
This is outrageous! I was 42 when I was diagnosed, with no family history, and have known many women under the age of 50 and even 40 who have lost the battle. They are turning over in their graves as I type this message.
This reeks of health care rationing . Unbelievable.
Too pissed to say anything else right now.
Nov 16, 2009 07:42PM revkat wrote:
As my teen daughters said, "WTH??"
I'm well aware that the numbers aren't there to support routine mammo usage before age 50. And the numbers aren't there for bse as well. But as my daughter said, "An example, in my opinion, of an instance where probability should not be the basis of action." Because my tumor would just be growing away, spreading to more lymph nodes, or who knows what for another year and a half, if it weren't for those inefficient mammograms!
Nov 16, 2009 09:09PM - edited Nov 16, 2009 09:28PM by otter
Did you guys hear Brian Williams's interview with Susan Love on the NBC Nightly News tonight??? Williams said the change could be interpreted as "rationing", and she agreed. She said this was the "good" type of rationing, in which money would not be spent on mammograms for women in their 40s for whom they don't work anyway.
There is an interesting article on the Reuters website tonight about the cost issue: "Experts Question Motives of Mammogram Guidelines." In it, several BC experts speculate that the main reason for the changes might be to reduce healthcare costs: http://www.reuters.com/article/healthNews/idUSTRE5AF5OS20091116
Here's another Reuters article that provides more detail about the new guidelines and the rationale for each of the changes: http://www.reuters.com/article/newsOne/idUSTRE5AF5BP20091116
Oh, here's one more. This is a basic news article announcing the changes: http://www.reuters.com/article/newsOne/idUSTRE5AF5BH20091116
In that article, Dr. Daniel Kopans, a Professor of Radiology at Harvard Medical School, was quoted as having said the new guidelines "are scientifically unjustified and will condemn women ages 40 to 49 to unnecessary deaths from breast cancer. If you look at their guidelines, they are saying, 'Don't examine yourself, don't let anyone else examine you, and don't get a mammogram.' Where does that leave you? It leaves you waiting to have a big cancer that you can't ignore any more."
OTOH, Susan Love told Brian Williams that the new guidelines just bring the U.S. into alignment with "the rest of the world." She also claimed the current guidelines (the ones being replaced) were never based on "science" anyway -- they were a legislative reaction to public pressure. Hmmm.... that ought to be something we sleuths could uncover, right?
[Edited to add more stuff.]
Nov 16, 2009 09:16PM cmb35 wrote:
Otter - thanks for the links, I'm still sitting here with my mouth hanging open, and have to agree, I can think of no other reason besides $$$ that this change would be made to the screening guidelines. It's gross.
Nov 16, 2009 09:21PM lorieg wrote:
I can't even believe the USPSTF has made this recommendation! Insurance coverage is based on recommendations from this group as well as ACS, etc. A mammo wouldn't have helped me since I was diagnosed with stage IIIc/IV breast cancer at the age of 32, but how many thousands ofd women have been diagnosed due to screening mammos?? Errrrrrrrrrrr. With breast cancer on the rise, not the decline this is disgusting. $$$$$$ is the real reason for this change.
Nov 16, 2009 09:23PM cheers247 wrote:
Otter, I saw Susan Love's interview... WOW, if I didn't get my mamo, I wouldn't see my 35th birthday! I don't feel comfortable with her "advocacy", she's scarry! I have no family history of BC and am BRCA -.
Nov 16, 2009 09:38PM desdemona222b wrote:
How utterly astounding and bizarre the whole thing is - like we're reverting back to the Stone Age or something. I was 47 when they found my DCIS on a mammogram. I would have been terminally ill by the time I hit 50.
Nov 16, 2009 09:48PM LeggyJ wrote:
It's rationing, government controlled health care. They don't want to spend the money on us!
Nov 16, 2009 10:08PM pip57 wrote:
It sounds more to me like big insurance companies lobbying for this. Think how much money insurance companies will save.
Nov 16, 2009 10:10PM techchick wrote:
I'm also outraged by this government panel's findings. Like many of you, I found my lump during a self breast exam (before the age of 50), and they're recommending against teaching self breast examination! That is not what I want my daughter to hear.
The U.S. Preventive Services Task Force Summary of Recommendations can be found here: http://www.ahrq.gov/clinic/uspstf/uspsbrca.htm.
There is also a "contact us" link on the website where you can ask a question: http://info.ahrq.gov/cgi-bin/ahrq.cfg/php/enduser/std_alp.php.
I think we should all send an email with the topic "Are You Nuts???" and tell them exactly how we feel!
Here's the info about the task force:
The U.S. Preventive Services Task Force (USPSTF), first convened by the U.S. Public Health Service in 1984, and since 1998 sponsored by the Agency for Healthcare Research and Quality (AHRQ), is the leading independent panel of private-sector experts in prevention and primary care. The USPSTF conducts rigorous, impartial assessments of the scientific evidence for the effectiveness of a broad range of clinical preventive services, including screening, counseling, and preventive medications. Its recommendations are considered the "gold standard" for clinical preventive services.
The mission of the USPSTF is to evaluate the benefits of individual services based on age, gender, and risk factors for disease; make recommendations about which preventive services should be incorporated routinely into primary medical care and for which populations; and identify a research agenda for clinical preventive care.
Information about its members can be found here: http://www.ahrq.gov/clinic/uspstfab.htm.
Nov 16, 2009 10:57PM Lauren3 wrote:
I was diagnosed at age 32 with stage IIA IDC. 4 positive lymph nodes. I don't even want to think about what would have happened if I had not done that fateful (and supposedly worthless) BSE. I will tell you one thing, I would not have made it the additional 18 years it would have taken to get me to age 50. I'm disgusted beyond words about this whole thing.
Nov 16, 2009 11:11PM KinAZ wrote:
government recommendations......and we want the government to control the entire health system........and the $$$$ behind it????? I cant find words to describe the insanity......I had an 18 cm ovarian cancerous tumor removed, and told my gyn onco that I felt a lump in my breast.......I expected to hear, that I was just freaking out...he never examined me, and as he turned to walk out of the room he said, I am ordering a mammogram.
Nov 16, 2009 11:18PM Celtic_Spirit wrote:
I have known 10 women, including myself, who had breast cancer. Only two of those women were older than 50. I was 48 when I was diagnosed at stage III. If I had waited for a mammogram until I turned 50, most likely I would be stage IV or dead. I can't say how much this *recommendation* cheeses me off! Grrrrrrrr!
Nov 17, 2009 02:31AM - edited Nov 17, 2009 09:33AM by AnnNYC
I am so outraged and horrified by this...
IMO, it's the result of rigidity and stupidity in a particular area of academic medicine... the "quality" movement... There was not a single oncologist or breast surgeon or radiologist on this stupid panel, from what I can tell !!!!!!!
Here are the members of the Task Force, authors of the guidelines (based on statistical models by some other authors -- more on that tomorrow):
Ned Calonge, MD, MPH, Chair (Colorado Department of Public Health and Environment, Denver, Colorado) - Associate Professor of Family Medicine and of Preventive Medicine and Biometrics at the University of Colorado Health Sciences Center; board certified in both Family Medicine and Preventive Medicine.
Diana B. Petitti, MD, MPH, Vice-Chair (Arizona State University, Phoenix, Arizona) - Professor, Department of Biomedical Informatics
Thomas G. DeWitt, MD (Professor of Pediatrics, Children's Hospital Medical Center, Cincinnati, Ohio);
Allen J. Dietrich, MD (Community and Family Medicine, Dartmouth Medical School, Hanover, New Hampshire);
Kimberly D. Gregory, MD, MPH (Director of Maternal-Fetal Medicine, Cedars-Sinai Medical Center, Los Angeles, California);
David Grossman, MD (Director of Preventive Care Group Health Cooperative, Seattle, Washington); Professor of Pediatrics, specializing in injury prevention in children and teens.
George Isham, MD, MS (Chief Health Officer and Plan Medical Director, HealthPartners [an HMO], Minneapolis, Minnesota); internal medicine
Michael L. LeFevre, MD, MSPH (Professor in the Department of Family and Community Medicine, University of Missouri School of Medicine, Columbia, Missouri);
Rosanne M. Leipzig, MD, PhD (Geriatric Medicine, Internal Medicine, Mount Sinai School of Medicine, New York, New York);
Lucy N. Marion, PhD, RN (Dean, School of Nursing, Medical College of Georgia, Augusta, Georgia); she has served on state and national advisory groups concerning mental health care, environmental risks to children, the genetics workforce, and the practice doctorate for nurses.
Bernadette Melnyk, PhD, RN (Dean, Arizona State University College of Nursing & Health Innovation, Phoenix, Arizona); specialty is neonatal nursing.
Virginia A. Moyer, MD, MPH (Section Head, Academic General Pediatrics, Baylor College of Medicine, Houston, Texas);
Judith K. Ockene, PhD (Preventive and Behavioral Medicine, University of Massachusetts Medical School, Worcester, Massachusetts);
George F. Sawaya, MD (Associate Professor of Obstetrics and Gynecology, University of California, San Francisco, San Francisco, California);
J. Sanford Schwartz, MD (Leon Hess Professor in Internal Medicine, School of Medicine; and Professor of Health Care Management in the Wharton School; University of Pennsylvania Medical School and the Wharton School, Philadelphia, Pennsylvania);
Timothy Wilt, MD, MPH (Center for Chronic Disease Outcomes Research University of Minnesota Department of Medicine and Minneapolis Veterans Affairs Medical Center, Minneapolis, Minnesota) - board-certified internal medicine specialist
*Edited to "bold" the specialties of these panelists -- do you see an oncologist, breast surgeon or radiologist? I didn't think so...
Nov 17, 2009 02:37AM AnnNYC wrote:
I'm at a loss for my own words -- I've said "outrageous" and "horrifying" over and over...
So I'm posting this quote I just found:
Daniel Kopans, a radiology professor at Harvard Medical School, said: "Tens of thousands of lives are being saved by mammography screening, and these idiots want to do away with it. It's crazy -- unethical, really."
Nov 17, 2009 03:01AM jancie wrote:
I am ticked off beyond belief at the sheer stupidity of this. I am at a loss for words. I am sad. I have tears in my eyes thinking about how many of us were diagnosed before the age of 50. I have been thinking of sweet Hannah ever since this article came out.
Nov 17, 2009 08:17AM cp418 wrote:
New Guidelines on Breast Cancer Draw Opposition
Nov 17, 2009 08:26AM AnnaM wrote:
Dr. Susan Love just said (on Good Morning America) that there has been a lot of "overselling of early detection."
Tell that to all the women whose lives have been saved!
Nov 17, 2009 08:40AM cp418 wrote:
Stop Annual Mammograms, Govt. Panel Tells Women Under 50
Nov 17, 2009 08:40AM GramE wrote:
I will leave out the words I am saying in my head over this un f#*&!! ing believable recommendation. Besides all the women on this board who are under age 50 with breast cancer, I personally know - hmmm can I even count them all -- 4 in my chemo buddies group, another 8 in a support group, 6-8 that I met at the cancer center, - you get the picture. Although I was 62 when diagnosed, I am one of the oldest ones in my "circle" of friends.
And to say that self exams are not going to be recommended... WTF - can I say that?? "Do no harm" is the mantra of "some" medical professionals. Has that changed? Since there is no cure, does this mean it is no longer important to treat? Grrrrrrrrrrrrrrrrr, stomping foot and wanting to throw something...
Nov 17, 2009 10:01AM otter wrote:
I just heard Robin Roberts's interview with Susan Love & Marisa Weiss on Good Morning America (ABC). I was trying like crazy to take notes, because I doubt there will be a transcript of the interview. Here are some of the things Susan Love said during that exchange:
“The newer techniques... digital mammography has not been shown to be any better than the older techniques [i.e., film mammography].”
“Mammography has never been shown to work in women in their 40s.”
[These new guidelines] “...are not depriving young women of their god-given right to be radiated…”
[In response to Dr. Weiss’s suggestion about digital mammograms being better for younger women]: “Digital mammography is not better in the study.”
“Mammography causes as many cancers as it cures.”
++++++end of quotes++++++++++
I am gravely concerned about the broad scope of these new guidelines. This is not just about mammograms. The recommendations impact every single method that's used routinely for "early detection" of breast cancer. The panel recommends:
...screening mammograms on women in their 40s should be discontinued; the frequency of screening mammography in women between 50 and 75 should be cut in half (to every other year); mammograpy in women older than 75 is of doubtful value, because they'll die of something else before their cancer kills them; doctors should stop teaching women how to do self-exams; women should stop doing self-exams because they are of no value; the clinical exams done by our doctors are of "questionable" value.
I still have to read the actual report, which is very long. At this point, my take on it is that the panel was dominated by statisticians and epidemiologists, who are considered "unbiased" because they do not treat patients who are at risk of or have been dx'd with BC. Their assignment was to sift through years of clinical data from multiple studies and come up with guidelines. Their approach was to use a "mathematical model" that would forecast various outcomes (numbers of deaths etc.) based on different variations of mammography frequency, self-exams, etc. The results are based on statistical formulas and on the usual statistical assumptions. And, the conclusion is that, because the statistical benefit from screening/early detection did not reach some threshold of statistical significance (or was it economic significance?), most of the current screening methods should be discontinued and the rest should be reduced by half. Oh, and the study was sponsored by the U.S. government.
That's what I think. What I suspect is that there is no way the panel could have avoided considering the economic impact of the current guidelines versus any changes. But, as I said, I still need to read the report. It's sitting on my "desktop" (thanks, AnnNYC, for the link).
Oh, and here's something else Susan Love said during the GMA interview:
"We have oversold the notion of early detection… some cancers that are very aggressive; no matter when you find them, they are still going to be bad. Others … are slow-growing, and it isn’t going to matter when you find those....".
Is anyone else here feeling like this whole thing is hopeless, and there is no use in attempting "early detection" of BC because the guidelines (and Susan Love) are saying it won't make any difference anyway?