New York Times "Addicted to Mammograms"

I understand/accept/believe the facts/figures/statistics in the report as well. The hard part for me is that I do know women with no family history and no risks factors who's cancer was detected by an annual screening mammogram. Three of them just off the top of my head as a matter of fact. I don't know, maybe it has something to do with where I live or the water or something!

One of them was DCIS, and I do understand the reasoning that most likely it would have been OK for her to wait until she was 50 (approx 6 years in her case), most likely the DCIS would not have progressed to IDC, or even if that happened, that most likely the IDC would not have progressed "too far" to respond to treatment. There is another friend in our circle who just went through the stress of a call-back, so I understand that part of it too. She had a follow-up mammogram, they drained fluid from a cyst, and that was it. But it was certainly stressful, particularly as she has friends with breast cancer, and therefore knows that the worst really can happen to you.

I completely understand that one person's experience (or life in this case) should not dictate public policy. It's just hard to look someone in the eye, or give their kid a ride home from practice, and know that "most likely" may or may not have worked out in her favor.

That's why I think everyone (the media included) needs to be very factual and truthful about what the recommendations do and do not say. I'm "more OK" with it when they come right out as say, "The 3% of deaths is not deemed worth the cost of the mammograms themselves, but more so, the cost of treating cancers that either could have waited to be treated or aren't going to respond to treatment anyway. Most likely."

(And it's still the "most likely" that gets me.)

It saddens me to hear those of us who challenge the judgments made in the USPSTF's 2009 Mammogram guidelines production described as voicing "emotionally-wracked conspiracy theories that doctors, feds, panels, and others are going to let young women die on their doorsteps because of these guidelines". Nothing could be farther from the truth on intent.

Many, including breast experts themselves such as Marisa Weiss, founder of Breastcancer.org, thankfully are speaking up publicly, even as we forum members also are. What is wrong with debate that questions not just the USPSTF's conclusions (given other screening mammogram "evidence based" findings) but also works to discuss the inclusions and exclusions on panel member selection and goal, as well as the timing of these publication? This forum is precisely where active discussion on the merits of breast cancer screening should be discussed, as it has intimately affected our own body's and souls. We women and men are dedicated to seeing that real progress be made in earlier pick up through improved screening for breast cancer. Our suffering and growth stimulates many to publicly speak about their experiences and diagnostic delays, so that our children and grandchildren may avoid the life changing and always heartbreaking words "you have breast cancer and we don't have a cure as yet".

Screening mammograms are the source of diagnostic mammograms much of the times. A finding of grouped microcalcifications, a spiculated mass, small calcifications scattered throughout the breast on first mammogram (my friend had this at age 35!) really happen over and over again each day around the world. These same screening mammograms lead to the designation of BIRADS 4 or 5 (suspicious or highly suspicious for breast cancer), or 0 (needs further study), which in turn lead to biopsy-proven ADH, ALH, DCIS, Invasive Ductal, Invasive Lobular and more. 

Why shouldn't we, given the above facts, be addicted to finding all our breast cancers, rather than not being addicted to such a finding, tolerating instead that 3% waste group of not being accurately diagnosed?  No woman or man here would be willing to throw a sister or brother in that 3% group out with the bath water. Nor too should our government "guideline" makers be willing to sacrifice this 3% for $USD money saved. 

Please, continue with screening mammograms in the 40 to 49 year old age group, and add a MRI to the process too where necessary (eg, dense breasts with white out on mammogram, a not uncommon scenario). This could help to shoot the specificity and sensitivity for breast cancer pickup rocket high, with the (as yet unproven, but now under study) goal of sparing many more advanced disease and death from breast cancer, saving money on early and end stage treatments by avoidance, and equally important, sparing Americans from the all to often personal suffering that befalls a patient and family with breast cancer. 

I suggest let our Stage IV sisters and brothers speak to Congress and the USPSTF committee on their personal evidence surrounding their breast cancer diagnosis and how early disease detection often passed them by. Screening mammogram guidelines need not be remote from day to day American reality, as sterile numbers often are. We need "best evidence guidelines" that merges numbers, highest yield of breast cancer detection, but also real patients' stories, so we all are open-minded and well grounded in penning the guidelines in a humanely responsible way.

Tender

"We women and men are dedicated to seeing that real progress be made in earlier pick up through improved screening for breast cancer. Our suffering and growth stimulates many to publicly speak about their experiences and diagnostic delays, so that our children and grandchildren may avoid the life changing and always heartbreaking words "you have breast cancer and we don't have a cure as yet".

Yes, you're right, Linda. Edit made and thanks.

Tender

Tender - I couldn't agree more, and thank you for so clearly and concisely making that point.

I have tried to be as objective, calm and rational as I can discussing this topic. It's hard for me though, because I am one of the 3%. I had a very aggressive cancer, caught very early, and was very lucky in that the "chemo crapshoot" seems to have worked for me. I am one of the lucky ones that beat the odds. I know all too well that women with my diagnosis often do not fare well.

Absolutely, a woman should have the right not to have treatment for an early stage cancer. She should discuss the risks and rewards of such treatment with her doctor, and then make a decision. I agree that not putting women through cancer treatment that they don't need is an important goal.

That being said, I don't think denying all women 40-49 the right to have an annual screening mammogram to learn of the presence of cancer is a fair way to accomplish that goal. Particularly as sometimes, that screening detects the presence of a clearly life-threatening cancer. And also, because we are not yet at the point that we can determine which of those early stage cancers are "safe" to leave alone, and which will become deadly. And finally, because if the recommendation that a woman 40-49 have a conversation with her doctor about the risks and rewards, and make the decision based on her family history and risk factors makes no sense in light of the fact that 75 - 90%** of women dx with breast cancer have no family history and no risk factors.

**Statistic I heard from Dr Sanjay Gupta, I have not validated this number, but I have heard it's reverse, that only 10 - 15% of women that develop breast cancer have a family history.

The argument that mammograms find early cancers that may have disappeared on their own which may lead to over treatment, to me, isn't right.  If over treatment is an issue, change those guidelines but don't under diagnose.  I agree there is over treatment.  Maybe some cancers should be watched first.  We are grouped together in too big of clumps and more individual treatment is necessary BUT I still want a early diagnosis for women.  They can then decide as individuals where to go from there.

The fact is, we can't screen everyone for every disease every day.  Who, when and how often to screen are judgment calls - hopefully, judgment calls based on evidence.  I think the reason the change in the screening guidelines is so controversial is that it upends something that has become deeply engrained in our culture; I mean, geez, I can't log onto Facebook without seeing an ad for my health system's "pinky swear" campaign, in which I'm supposed to get my friends to promise that they'll come in for mammograms.

But if yearly mammograms starting at 40 are good, wouldn't twice-yearly mammograms be even better?  And why wait until 40 - why not start at 35?  Or 30?  And what about the guys?  Men can get breast cancer, too, but we've left them out of the screening recommendations. 

Doing any of those things would undoubtedly pick up some additional cancers, because that's what mass screening does.  But there'd be a cost - not just in dollars and cents, but in unnecessary biopsies and additional exposure to radiation and aggressive treatment - with lifelong consequences - for cancers that would never have been life threatening.  At some point, you have to conclude that the costs outweigh the benefits. 

We're always going to look at the evidence through the prism of our personal experience, but we at least have to look at the evidence (even if we come to different conclusions).

Linda

Well, I think guys are left out of the screening process because they have fairly flat breasts. However, I know a gentleman with family history, and he does get a mammogram.  He said its embarrassing but oh well.  I know a man who got bc .. and he had a mastectomy without recon and he gets a mammo every year .. !!

Alaina...Yes, I had symptoms but many women DON'T.  My mother didn't.  I was nursing at the time and was told that it was a yeast infection and then it was a plugged duct and then even I was questioned if it was mastitis.  Yes, at the time that I found the lump I pressed on to make sure to find out what it was.  I also know that a tumor of 10 cm of DCIS takes between 4 - 6+Years to grow and would have been seen on a mammogram at 35.

Again, I reiterate the fact that many women do not have any symptoms what so ever when they have breast cancer.  That is no pain, no nothing...until it metastasized to other areas and they develop pain and symptoms...when it is too late.  How can I say this?  Because I have seen it time and time again.  Another experience?  My aunt died of colon cancer...Why?  Because she went to the Dr. for back pain and the Dr. never once did any tests to find out why she had pain.

Stats can be made to say anything that you want them to say...but  personal experiences on how draconic the cancer screening has turned into can't be put into a stat and say the opposite.

Well Colette, again, I am not of the mindset to believe this particular set of recommendations is a part of a miserly government plot to kill young women in order to save money.  I'm just not there yet.  Not based on a set of recommendations.

Nor will I try to link this set of recommendations to the current controversy surrounding the health care debate.  That;s a whole 'nother kettle of fish that few people will change their minds about.

I will end with what I've been telling everyone around this issue of when to start getting mammograms.  Form for YOURSELF a health-care team that is trustworthy and responsive to your needs.  Be intimately aware of changes in your body that you can discern and find a way to get (and/or pay for) whatever test or screen you feel is necessary to maintain your individual good health.   You are the customer and your life is the product.  Choose, decide, and demand accordingly.

We will just have to agree to disagree on the rest. :-)

All God's Best to You & Yours!  Alaina

Colette, I've already responded to your misunderstanding of the Senate health care bill (and its infamous "page 17").  It has nothing whatsoever to do with the "standard of care" for breast cancer or breast cancer screening.  Repeating something that's untrue over and over again doesn't make it any truer.

I do want to respond to your statement that "10 cm of DCIS takes between 4 - 6+Years to grow and would have been seen on a mammogram at 35."  Please believe me when I say that I completely understand why you would believe that, and how sick and angry that must make you feel.  But I can offer myself as a counter-example.  I had a baseline mammo at 35 and annual mammo's from 40 on, until I was finally diagnosed with bc at age 46.  A subsequent MRI turned up a 4 cm x 6 cm area of DCIS in my (small!) left breast.  Despite its size, and the fact that it had surely been there for years, this DCIS *never* showed up on any of my screening or diagnostic mammograms or follow-up ultrasounds. 

So, your personal experience "proves" to you that screening mammograms for younger women are vital.  My personal experience "proves" to me that screening mammograms for younger women are ineffective.  That's the limit of personal experience.  It matters to us, but it doesn't tell us what's best for large populations. 

Peace,

Linda

I have thought for a long time that breast self exams were not worth much and, although I had mammograms as recommended, I also think they are over-sold.  I had a clean mammogram and found the lump myself, just by accident 10 months later. 

am not ready to buy into the emotionally-wracked conspiracy theories that doctors, feds, panels, and others are going to let young women die on their doorsteps because of these guidelines.

You and I have identical Diagnosis Markers. Did you have symptoms? I did, a rash and a swollen lymph node. My dermatologist dismissed my rash as hives (from an antibiotic I had been taking). Thank God my primary care didn't believe him. She ordered a diagnostic mammogram that found a DCIS forming. She also ordered a sonogram of my lymph node. It was 3cm (pathologic in size, and after a fine-needle aspiration, confirmed cancerous). My 2 tumors never showed up on the mammo, but the docs knew something had to be in that breast because the DCIS could not have caused the cancer in the lymph node. An MRI confirmed 2 tumors (8.5cm and 6cm, flat, fast-growing, and poorly-differentiated).

All of this was found due to diagnostic tools to root out what was causing my SYMPTOMS. I'd never had a routine screening mammo, and in my case, it would not have helped. My symptoms showed up literally overnight.
||350-001||640-553||640-802||

I just happened upon this interesting discussion today.....

TenderIsOurMight, thanks for your measured, highly interesting posts.

Also: Lewing wrote: But in other cases, people whose cancers would never have spread and become life threatening will hear those words, and suffer all the heartbreak and physical harm of a cancer diagnosis with *no* difference in their prognosis." 

Alaina wrote: But I also get reality.  And the reality says that we would have never had regular mammographic screening for women 40-49 if it weren't for the political bullying and financially lobbied intimidation of members of Congress to make it so however many years ago.  That's the dirty little secret doctors, oncologists, and other cancer specialists don't want to talk about except in hushed whispers at cocktail parties.  But this panel had the courage to finally let the numbers talk and make a different recommendation.  The media put a twist on the recommendations to make it more "newsworthy" that got everyone in a lather and thinking that women in their 40s will start dying from missed cancers 2 seconds after the ink was dry on the guidelines.

BinVa wrote: "You need to screen 1,900 women in their 40s for 10 years in order to prevent one death from breast cancer, and in the process you will have generated more than 1,000 false-positive screens and all the overtreatment they entail.”       Thanks all 4 of you for continuously clarifying facts throughout this complex issue.