Some Breast Cancer Overdiagnosed - AP Story
Sorry if this has been posted elsewhere but I found this article to be extremely confusing. The study did not count DCIS diagnosis, so that would mean it is only for invasive breast cancer. 6 out of 10 women should not receive treatment for invasive BC since it won't cause problems in their lifetime? Just wondering how they "know" this....
http://news.yahoo.com/study-finds-early-breast-cancer-overdiagnosed-211809084.html
NEW YORK (AP) - For years, women have been urged to get screened for breast cancer because the earlier it's found, the better. Now researchers are reporting more evidence suggesting that's not always the case.
A study in Norway estimates that between 15 and 25 percent of breast cancers found by mammograms wouldn't have caused any problems during a woman's lifetime, but these tumors were being treated anyway. Once detected, early tumors are surgically removed and sometimes treated with radiation or chemotherapy because there's no certain way to figure out which ones may be dangerous and which are harmless.
"When you look for cancer early and you look really hard, you find forms that are ultimately never going to bother the patient," said Dr. H. Gilbert Welch of the Dartmouth Institute for Health Policy and Clinical Practice, who was not part of the research. "It's a side effect of early diagnosis."
The study is the latest to explore overdiagnosis from routine mammograms - finding tumors that grow so slowly or not at all and that would not have caused symptoms or death. Previous estimates of the problem have varied.
The researchers took advantage of the staggered decade-long introduction of a screening program in Norway, starting in 1996. That allowed them to compare the number of breast cancers in counties where screening was offered with those in areas that didn't yet have the program. Their analysis also included a decade before mammograms were offered.
They estimated that for every 2,500 women offered screening, one death from breast cancer will be prevented but six to 10 women will be overdiagnosed and treated.
Study leader Dr. Mette Kalager and other experts said women need to be better informed about the possibility that mammograms can pick up cancers that will never be life-threatening when they consider getting screened. The dilemma is that doctors don't have a good way of telling which won't be dangerous.
"Once you've decided to undergo mammography screening, you also have to deal with the consequences that you might be overdiagnosed," said Kalager, a breast surgeon at Norway's Telemark Hospital and a visiting scientist at Harvard School of Public Health. "By then, I think, it's too late. You have to get treated."
Kalager and her colleagues looked only at invasive breast cancer. The study did not include DCIS, or ductal carcinoma in situ - an earlier stage cancer confined to a milk duct.
Under the Norway program, screening was offered every two years to women ages 50 to 69.
Researchers analyzed nearly 40,000 breast cancer cases, including 7,793 that were detected after routine screening began. They estimated that between 1,169 and 1,948 of those women were overdiagnosed and got treatment they didn't need.
Their findings appear in Tuesday's Annals of Internal Medicine.
The problem of overdiagnosis has been long recognized with prostate cancer. Darthmouth's Welch said it's also a problem in thyroid and lung cancer, a childhood tumor called neuroblastoma and even melanoma. He considers breast cancer screening a close call.
"The truth is that we've exaggerated the benefits of screening and we've ignored the harms," he said. "I think we're headed to a place where we realize we need to give women a more balanced message: Mammography helps some people but it leads others to be treated unnecessarily."
An editorial published with the study said overdiagnosis probably occurs more often in the United States because American women often start annual screening at an earlier age and radiologists in the U.S. are more likely to report suspicious findings than those in Europe.
Radiologists could help by raising the threshold for noting abnormalities, wrote Dr. Joann Elmore of the University of Washington School of Medicine and Dr. Suzanne Fletcher of Harvard Medical School.
A "watch-and-wait" approach has been suggested instead of an immediate biopsy, but the editorial writers acknowledge that could be a "tough sell" for some women and radiologists alike.
They said most women aren't aware of the possibility of overdiagnosis.
"We have an ethical responsibility to alert women to this phenomenon," they wrote.
Comments
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Researchers like this make me crazy! I'd like to ask them, if it were YOUR or YOUR WIFE'S breast where a tumor were found, would YOU be ok with "watch and wait?"
I had a biopsy in the same area where my cancer was eventually found, three years ago. The results were B9, probably because the doctor botched it and took normal tissue. Yes, my tumor was very small then and maybe non-invasive. But by the time it was finally identified I had 2 involved nodes. Had I gone another year without treatment I believe it would have progressed much more.
So, to these, cut the cost of medical care, researchers I say, don't hype your "watch and wait" crap on patients who KNOW what breast cancer is all about and what it can do to its victims. I for one advocate for treatment ASAP once a tumor, big or small, is found. NO EXCEPTIONS!
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These researchers are not telling me anything new. Even in my case there was a 40% chance that all I needed was surgery (no chemo, rads, herceptin). The problem right now is there is no way to know which women don't need treatment and which do. What and wait for 6 months then what… if no growth they will leave it!
If I still had breasts I know I would still want to be getting mammos. Too bad the mammo missed my tumor all 4 years prior!
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We have already discussed Dr. Welch's research here on this discussion board. I have read his book, Overdiagnosed. Just want to mention again that he believes the data strongly recommends DIAGNOSTIC mammograms rather than screening mammograms for many women. Furthermore, his wife is a breast cancer survivor. A regular screening mammogram did NOT find her tumor. A diagnostic mammogram found her tumor.
The book is excellent. -
This is not new research but I agree that there is an ethical obligation to raise awareness amongst women about the prevalence of overdiagnosis. Some of the emotion can cloud acceptance of uncertainty. At the same time, until we know which cancers kill and which don't the conversation about overdiag nosis remains as frustratingly vague as government terror alerts - define "suspicious."
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"there's no certain way to figure out which ones may be dangerous and which are harmless."
Exactly.
The way I see it, there is no such thing as "overdiagnosis" until medical science is able to identify who is being overdiagnosed. Until then, this is a theoretical discussion with the potential to do more harm than good. The more that this is discussed in mass media (as opposed to medical journals where they are trying to find the answers), the more likely it becomes that some women who are newly diagnosed will choose to under-treat cancers that really are serious.
We already see that happening with DCIS, where the issue of overdiagnosis and over-treatment has been a major discussion point in the medical community for a number of years. I've been hanging around here for 6+ years and I see the impact of those discussions. More and more we have newly diagnosed women coming here who believe that they do not need to treat their DCIS. They arrive here with a recommendation from their doctor that they need to have surgery and they question why anything needs to be done at all, since they've read that "DCIS is overdiagnosed" and "most DCIS is harmless". I never used to see this type of response and now it happens all the time. The truth is that there probably are some cases of DCIS that can be left alone but medical science can't tell us yet which cases those are. And the problem is that most of the women who come here concerned about overdiagnosis and contemplating passing on any treatment have diagnoses that are aggressive and serious - not diagnoses than any doctor would consider to be low risk. But a little misinformation goes a long way. Trying to explain why surgery is necessary to someone who is convinced that she's been overdiagnosed is not an easy thing to do. I'm starting to see women walk away from surgery. Considering the diagnoses that some of these women have, that's truly scary.
With mass media articles like this, I wonder how long it will be before we start to see the same thing happening with women diagnosed with IDC. A little mistrust of the medical community, a few articles about how breast cancer might be harmless and is being overdiagnosed and over-treated, and we are sure to see women who "do all their research" and therefore know better than their doctors and make an "educated decision" to refuse all treatments.
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As usual, I'm with Beesie. How can you possibily claim overtreatment when there is no way to differenciate the cancers that will kill from those that will not?
So, by the article's numbers, if you knew you were in a group of six to ten women and knew one of you would die from breast cancer - and you didn't have any way of knowing which one it would be - how comfortable would you be declining treatment? For me this is too much like spinning the barrel of a gun with one bullet out of six, pointing it at my head, and pulling the trigger. (If you think about it, the odds are similar in Russian roulette.) But take it a step further. The article seems to be arguing against routine mammograms - so that the six to ten women wouldn't even know the gun is pointed at their heads, the trigger pulling, and a bullet about to end one of their lives.
I am afraid that we are entering a period when society lets some women die to save the cost of "overtreatment" - because that seems to be at the core of this trend.
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I highly recommend reading Dr. Welch's book. This is a very complex issue. Has anyone noticed that there have been more and more recommendations lately to move away from regular screening for many types of diseases? Just last week I read that most women may only need a pap smear every three years rather than annually.
I will repeat saying what I have said before.... We have been told all about the merits of annual screening and exams. But the bottom line is that maybe, just MAYBE the types of exams and screenings that we have come to rely on are UNRELIABLE and we DESERVE better. Furthermore, if we don't have this discussion front and center, then we will be fooling ourselves and slowing down the process of finding BETTER methods and tools for screening that DO WORK. -
I think the phrase "cancer that is not life-threatening" bothered me the most.
EXCUSE ME???
My Radiologist told me that after all my dx mammo, ultrasounds, ductograms, and core needle biopsies, she could look back on my 2009 and my 2010 "screening" mammograms and make out "dark areas" that looked suspicious. I was horrified, but she went on to explain that if she gathered the best radiologists in the country and showed them only the "screening" mammos, it would be doubtful that any of them would automatically detect the suspicious areas.
But what if they did? What if my DCIS was just DCIS in 2009, or 2010?
Would they have treated it? Or would this have been considered just one of those "non-life-threatening" cancers and been left alone?
If the DCIS had been treated back then, would that have prevented the IDC that had eventually grown by 2011, neccessitating my BMX?
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What VR said!
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I read this article this morning in my local paper. I find it interested for what it DIDN'T say.
There is no real argument as to why it might be harmful to diagnose cancers that don't need to be treated, which just makes Welch and Kalage sound more than a little cavalier and kind of nuts.
The burden of treatment side effects is very much a part of the prostate cancer discussion, because incontinence and erectile dysfunction are so common after treatment. Granted, the prevalence of serious problems like lymphedema and neuropathy in the post- breast CA treatment group may be less than the prevalence of incontinence and ED in the post-prostate CA treatment group, but it's not even mentioned.
The other, truly ugly, factor is cost. Say the figures are true, that for every life saved 6-10 women are treated unnecessarily. Add the cost of their treatment to the cost of the screening, and that drastically increased the cost of a true cure. Although no one individual sees, it the healthcare system does.
Please don't think I'm saying anyone's life is not worth the cost of screening a larger number, or that since we don't know how to identify tumours that will progress we should just sit around. I actually completely agree with Beesie, but it's hard to have a discussion about this without considering why anybody would bother creating the question.
VR - cervical cancer screening has actually been revolutionized by HPV testing. Doing it less often than every year has also been standard care in some countries for years even prior to that. Diseases for which screening is useful HAVE to be slowly progressive. If the screening tool is improved, the interval can be changed. For example, a normal colonoscopy gets the average-risk person over 50 out of any further colon cancer screening for another 7-10 years, but a normal stool occult-blood test only would get that person out of further colon cancer screening for the next one year. The colonoscopy is such a superior test it can be done much less often.
One of the arguments for recommending yearly intervals is as simple as it's easier to remember.
I hate that really complicated issues are presented in basically a cartoon format. It really makes me wonder about the stuff I know nothing about that I read in the paper, when I see something I do know something about presented like this.
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Isn't this what the Oncotype test partially solves? Granted, the doctors still treat the cancer one way or another, but atleast they don't overtreat Stage 1 with chemo, given one's score.
Recently there has been a hullabaloo over the mutation of tumors, ergo, the sampled portion of a tumor, for instance during an oncotype testing, might show low grade, while the original tumor cells might be high grade. This alone would make me want to "over treat" any tumor and consider it possibly dangerous.
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Speaking about genomics another book worth reading is Eric Topol, MD's The Creative Destruction of Medicine. I think the CNN article is very balanced. IMHO, these medical articles merely skim the surface of covering the issue. Basing opinions on these articles does not do justice to this contentious issue.
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Until they can tell which people would be safe with a wait and watch approach, it just sounds like an attempt to save money. If I had waited and watched, my IDC would have grown into my chest wall and the second (larger & higher grade) tumor would have never been found.
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Again agreeing with VR on using caution when viewing media reports. Especially CNN - oversimplifiers/distorters that they are.
I think it's a good idea to take a more nuanced perspective. If cancer teaches me anything it is tolerance for ambiguity - and I am not someone for whom that comes easily, believe me.
It isn't as simple as what is cheaper or quicker - I think those are assumptions we are jumping to. The industry of health care delivery services isn't the same as the world of scientific research, although of course there is much overlap. Remember that this study took place in a Scandinavian nation with universal health coverage, so our American-centric views of cost and practicality may not hold here.
As has been pointed out, questions about screening for many cancers have been lingering for years, and some reports suggest that people not at risk may only need pap smears every five years , for example - and not because they remember one way or the other. This Norwegianstudy was quite important because of its sheer breadth. Also, you can debate the cost issue both ways. Yes, it may save money to do fewer screenings, but providers also get less - and providers include governments, BTW. In fact, ecomonic interests should logically sway the argument in favor of more screening - not less. And this is probably regardless of the economic system of healthcare delivery, because in government-sponsored systems economies of scale would make screening very cheap (In the US, insurers and the AMA would likely hold sway).
More and more, I become convinced that some of the most formidable obstacles to breakthroughs in breast cancer research are prevailing attitudes by too many doctors and patients who think that throwing everything just HAS to be better than nothing - who think in terms of poles.
No serious researcher who has found that mammograms have no overall benefit on survival has ever suggested that women at risk (ie: probably everyone who posts here and still has breasts) should not be carefully monitored. No serious researcher who cautions about overdiagnosis has ever suggested that once cancer is found it should be ignored, or that the feelings of a person told she may have cancer should be belittled.
Again, nuanced thinking is the key. The fact that my neighbor may have been incorrectly identified as having BC when she did not does not mean I didn't have cancer. I think we are using all-or-nothing thinking and positioning ourselves in absolutes. That does us as individuals and the science of breast cancer research as a whole a disservice, IMO. It perpetuates that sweeping, pink ribbon thinking whereby we all face identical experiences and we should all march in step. That is a recipe for mob rule and against progress.
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1Athena1.... Ditto!
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The "pinking" reminders to get checked, then ladies breathe a sigh of relief when they get the all clear. It's all a crap shoot. My first one, the mammo thought it was a cyst. NOT. Seven years later the second one wasn't even seen on diagnostic mammo. Both were grade 3. And mammo starting at 40? I have NO breast cancer in my family, I might not be writing this today if I waited for 40. Thankfully both were palpable. First dx at age 32 and again almost 40. Yeah it was quite a memorable birthday. Not fabulous 40 but fighting the fight to try to get to 50.
I don't doubt the research, but this is CANCER and completely individual and unpredictable.
The media just takes the news ball every so often runs willy-nilly to spread the word and create "awareness" which can cause people to doubt their instincts. Wait and watch? If you don't feel like that's right, get another dr opinion. Trust your gut, you know your body better than anyone else. -
Several years ago, I started asking my PCP for a screening breast ultrasound. "We don't do those." he said.
I really didn't understand his reasoning, so every year I asked him the same question.
"I have dense, heavy, fibrocystic breasts" I told him. "The mammograms all look like snow on a black and white TV." Again, his answer was "We don't do those."
Fast forward to September 2011, when I had some bleeding from my left nipple. He was all over THAT!!!! Saw the BS the next day, and started having a series of diagnostic tests, including ultrasounds, immediately thereafter.
I asked my Radiologist - who I LOVED - about the screening ultrasound. She said "That just doesn't work. Look at how long we are taking to find this tiny spot we already know about. With a screening US, they wouldn't know where to start looking, or even what to look for. But now that we have a clue, we can exhaust all the possibilities."
I got to thinking about my DH's hobby - metal detecting. Often, people would ask him to find jewelry they had lost. He would try to narrow down the exact place they thought they had lost it, and they were always wrong.
I thought about trying to find a small, early breast cancer on an ultrasound, and how it would be like looking for a wedding ring "somewhere out there on that football field"....in other words, tons of work, and perhaps not worth it. That calmed me down a little bit.
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There is a fair amount of misunderstanding about the term "screening" on this thread. This is a complicated concept.
"Screening" refers only to "the process of identifying individuals with unrecognized diseases or risk factors by the application of tests, examinations or other procedures" (Barker,Burton, Zieve). For it to be screening, there must be no suspicion or concern that the person has the disease. "Screening" mammograms are those done solely because a woman has hit a certain age. If a mammogram is done because of a lump, like mebmarj's, it's not "screening."
Screening can be a major procedure, like a colonoscopy in a healthy 50 year old with no family history. It can be as simple as a question, "Do you smoke?" It usually does not by itself identify disease, but identifies people who need more evaluation.
There are a number of conditions that need to be true for a screening test to be useful, properties of both the test and the disease.
The disease has to be common, it has to be something that causes death or a lot of disability, and it has to make a difference in terms of clinical outcome whether or not it is caught and treated early. Also, the disease must have a long time when it is asymptomatic so that the screening can be done at reasonable intervals (like one year).
Examples of diseases that aren't screened for, one for each of those reasons above (some of them fit more than one criteria, but my creative mind is not perfect thinking of them):
1) Pancreatic cancer - it's not common enough for currently available "screening" tests to be worth the risk of radiation and cost
2) Oral herpes simplex - almost everybody has it, but it doesn't usually cause serious problems
3) Osteoarthritis - there aren't easily implemented ways to slow its progression
4) Multiple sclerosis - there's not a known period where people have the disease and could be diagnosed with available tests before they have symptoms
The test has to be affordable, easy, low-risk, and have reasonable sensitivity (what percentage of people who have the disease will have a positive test) and specificity (the proportion of people without the disease who have a negative test) (Fletcher,Fletcher,Wagner).
It's no secret that mammograms don't have perfect sensitivity or specificity, but they are affordable and easy, with little apparent direct risk from the procedure. But this article isn't talking about the sensitivity or the specificity of the mammogram. It's not focusing on shortcomings of the test, it's focusing on the disease.
The big question they raise is whether all the cancers found by mammogram, which are otherwise completely unsuspected (or else those mammograms wouldn't be screening!), need to be treated.
Screening mammogram is a test that performs poorly in picking up fast-growing tumours. Like mine, those can roar up in the interval between screenings. It's a test that performs better picking up slow-growing tumours.
What happens if a person has a slow-growing tumour? For something ike prostate or thyroid cancer, chances are good they may live a normal life and die of something else. But if the cancer is picked up on screening, they'll have diagnostic procedures, get the diagnosis, then have to consider treatment. Are those good things? Biopsies are pricey, and have some risk. Treatments are pricier and have considerable risk. The concern raised here is that women who would not otherwise ever know they have a slow-growing breast cancer are subjected to pricey procedures and treatments that may cause harm and that they may not need.
But the crux of the question is, what do we decide to sacrifice? This is a huge question in prostate cancer screening, and it may get bigger in breast cancer screening. Completely expectedly, the easy screening tests pick up the subtypes of the disease that least need treatment - the slow growing ones. So are we reacting in the most sensible way to positive screening tests?
What this article is getting at, with "exaggerated the benefits and ignored the harms" is two basic problems of this screening situation, more related to the disease than the test:
1) Aggressive breast cancer isn't well diagnosed by current screenings (like mebmarge, I shudder to think of women being falsely reassured by mammogram results)
2) There is a price to pay as individuals and society to support saving lives caused by this disease. Price is going to be the cost of the screening, but also the cost of the diagnostic tests and the treatment. It's also the effect on a person of knowing they have cancer, whether it's a life-threatening one or not. It's the side effects of treatment, whether it was needed or not.
The problem as I see is that nobody can say that 100% of the cases of disease picked up by these screenings don't need treatment. These researchers don't say that, although I haven't seen the full text yet. Focus all you want on those estimated 5-9 women who didn't need the treatment, but one of them did. Nobody wants to think there is a price-tag put on a human life, but of course there is. What they are pointing out is that price. Athena is wrong that the price doesn't matter - as an extreme example, if that were the case there would probably be a lot more MRI scanners and everyone would get one at age 40. But the financial cost is obviously prohibitive and the human suffering cost of dealing with all the false positives would be staggering.
These are tricky concepts. Doctors struggle with them. People who have a diagnosis that fits this description struggle hearing them. I am sure none of us here who have gone through surgery, chemo or radiation would ever want to hear that it hadn't been necessary, so it can be a personally tough thing to consider. And right now, there would be no way to sort those women out 100% anyway. The Oncotype is helpful, but it's not a black-white you have "bad," get going with treatment or you'll die or you have "good," you can forget you ever had cancer kind of test.
Just so you know where I'm coming from, if this were me, standing in group with 5-9 other women and we were handed gun and asked to play some Russian Roulette, I'd say no thank-you. I have nothing left to squeeze for a mammo, but before my diagnosis I did get a screening mammo. It wasn't relevant to my cancer or how I was diagnosed, but I made that decision to do it and put back in time I'd do it again.
The thing that concerns me the most is that people will read this in the paper and react without thinking fully.
Edited because I was really tired last night when I wrote this.
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Current breast cancer screening methods are not effective, many times missing aggressive cancers that are present and many times identifying 'harmless' cancers that don't need aggressive treatment. ABSOLUTELY AGREE.
Some cancers are slow growing and may never need treatment, or at most, may only need surgery. Most cancers in fact are 'cured' just with surgery alone. Many women are over-treated and some suffer serious side effects as a result of these treatments. ABSOLUTELY AGREE.
Over-treatment comes with a high cost, both in terms of dollars and health. The cost of ineffective screenings and the cost of unnecessary treatments is a burden on the health care system. Plus there are the physical and emotional costs of subjecting patients to treatments that they don't really. We must strive to reduce/eliminate this. ABSOLUTELY AGREE.
I think that's the crux of medical issue. I don't have any disagreements with the medical issue. What I have a problem with is the way that the medical issue is being discussed and presented, and particularly, the way that it is being covered in the mass media. Athena, you said "Again agreeing with VR on using caution when viewing media reports. Especially CNN - oversimplifiers/distorters that they are." Yes, exactly. That's the problem. We here discussing this issue are a very very tiny group (even among those here on this website) who dig into the issues and read the research studies (or at least the excerpts from PubMed). But most people don't. Most people get their medical information from the mass media, from sources like CNN or Yahoo News. All that most people will ever know of this issue is a top-line, watered down, simplified, summarized and sensationalized version of the issue. And some women who read these mass media reports - particularly if they read the same thing a few times over a period of months or years (as has happened with the issue of over-treatment of DCIS) - will come to the conclusion that BC is over-diagnosed, BC is over-treated, BC isn't dangerous and they will decide that if they are ever diagnosed, they will refuse treatment. Because they read about it and they are informed.... and therefore they know better than their doctor who is recommending that they have surgery and radiation.
That's my issue. My issue is not with the many scientists and doctors who are working behind the scenes to figure out how to better segregate different diagnoses of BC so we know which need all the ammunition and which need only minimal treatment. My issue is not with all those who are working to come up with better ways to screen for BC, so that we catch more of the serious cases sooner, and so that we can better identify which cases can be handled with watchful waiting. My issue is not with those who quietly do the research and write the reports and work for years and years to find the answers.
My issue is with the few so-called experts who communicate to the mass media, usually for the sake of their own publicity, and speak publicly about how BC is over-diagnosed and over-treated and in many cases isn't harmful at all. My issue is with mass market doctors who take complicated issues that can't be communicated in a sound-bite and but who choose to speak of those issues anyway, with the inevitable result that they miscommunicate and provide bad and misleading advice. My issue is with the lack of care and concern in the choice of words that these people, and the mass media, use in communicating about these issues. My issues is with the take-away message from these communications. What's the conclusion from an article that says that mammograms lead to over-diagnosis and over-treatment, that says that a significant percentage of breast cancer will never be harmful and doesn't need treatment, that says that most women aren't aware of the possibility of over-diagnosis and that watchful waiting is a "hard sell"? Yes there is one line that also says that doctors don't actually have any way of knowing which cases are serious and which aren't, but that line is pretty easy to miss, isn't it? To some women who read it, that article is a call to action. You be the one who doesn't give in to the medical community. Refuse your mammograms. Refuse treatment. Take control of your situation and don't let yourself be led down the path to over-diagnosis and over-treatment. Anyone who doesn't think that this is what's going to happen if these types of articles continue to be published in the mass media hasn't seen what's happened in the DCIS world. My issue is the irresponsibility in how this is communicated.
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These articles get circulated to the media every year around this peak time when exams are done. All they do is confuse women who are undecided what to do when there is NO better methodology to determine which cancers are life threatening. Shame on the them for causing this confusion just to publish the same articles every year. I'd rather get screened for a false positive as a missed false negatives is the one could kill you,
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I agree with everyone that the one sentence - that the doctors can't tell which cancers will kill versus which will not - will be overlooked.
Until there are better diagnostics tools, articles like this are simply dangerous and irresponsible. I absolutely agree that this issue is oversimplified and misrepresented in the media. Simply put, without screening, more women will die, and that point is either missed or not considered significant.
I think that it would be helpful for the mass public to hear from women like those on this discussion.
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Another fascinating and important topic reviewed by some of my favorite peeps. Thank you for keeping me informed, lots of interesting stuff here re: screening, diagnostic--I still trip up on the nomenclature.
Bottom line is, my screening mammos and ultrasound misdiagnosed my tumor as "probably benign". So let's not forget reader error even if the bugger shows up. I am haunted by the fact I carried this sucker around for years with a misdiagnosis. How I ended up with a Stage 1 after all that at my age is just plain old crazy luck.
I think what I resent here is the idea that "watch and wait" is an alternative. I wish the medical community would just fess up: they don't know what the best protocol is, we are a long way off from that, and it's best to keep with what appears to be lowering death rates (early diagnosis and screening) until further notice.
On the other hand, I think it would be arrogant of me to suggest I know the health implications of overtreatment if that were my case. Tailor X will give me a little more information when that study is concluded. Until then, I was looking down the barrel of a deadly disease at a young age, so "overtreatment" was a risk I was willing to take. But I'm sober there are no clear cut answers out there yet.
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Exactly to the point that some of us have been making, there is a new member on the DCIS forum who is questioning what treatment is necessary for her grade 3 DCIS because she's heard about the Norway report. And she's saying that she regrets having had the mammogram. I'm not criticizing this individual - I completely understand why she's asking these questions - but this goes to show how reports of these sorts are being interpreted and the influence that they have. We're not at the point yet where I'm seeing these types of posts every day, but we're probably at one a week now, if not more. And the real problem is that most of the people asking these questions and raising these issues are not those who are in the low risk category that the articles are talking about.
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Beesie - agree with that 100%.
It's not well-informed decision making. It is completely impossible to understand all the sides to the dilemma from an article like this, but it is very possible for an article like this to reach a vast audience.
LtotheK - your story actually isn't what they're talking about at all. This story doesn't have anything to do with mammograms missing cancers. That's a problem with "sensitivity." What this article is talking about is a problem with "specificity," which is created by lumping a bunch of diseases together and calling them all breast cancer. Really, this is talking about a high false positive rate (false positive = 1-specificity), which is obscured because the confirmatory test - the pathology report - can't distinguish between the disease that will kill and things that look like this disease. So both the screening test and the diagnostic test have high false positive rates, there is at this point no good gold standard for diagnosing potentially lethal disease. It's a completely different issue.
Who is going to understand that concept in a newspaper blurb? It's way too complicated to be flung out into the media like this, with this emphasis.
My contact with breast cancer is all through my personal life, but I have a much different relationship with prostate cancer. This basic question is even bigger in prostate cancer and probably some of you all have read about it. What staggers me is the complete lack of awareness expressed in articles about research like this, which I think addressed valid concerns, have of the experience and feelings of those who suffer and die from these diseases. Really, we wouldn't be having these conversations at all if lots of men and women didn't die from these two common cancers. And I don't know if it's an insensitivity on the part of the researchers, or journalists trying for short attention-grabbing phrases they can extract from a more complicated explanation. I'll read the full text.
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LtotheK was relating her personal connection to BC, mammo and not being dx in a timely manner. It's just the opposite side of the story, which should also be considered relevant. Over diagnosis versus no diagnosis, either way- the damage to the woman or man concerned is done.
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Thanks, mebmarj. Yes, my point is, the system fails us on many levels. I wish I'd gotten a false positive, instead, I got reader error on something that clearly showed up. I get blockaded routinely for my MRI because it yields high false positives--this is an issue for a lot of diagnostics now.
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- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
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- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team