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Old 11-20-2009, 11:24 PM   #21
Debbie L.
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Re: A Message from Dr. Love about the New Mammography Guidelines

Rich said:With all due respect, Debbie, I would appreciate a response to my post. If you disagree with the points, knock 'em down. No worries.

Okay. There are about 10 threads on this board about the USPSTF guidelines and I'm not sure which post you're referring to, but I'll copy/paste the one of yours that's closest to this (geographically) and have at it (smile). I just posted on this particular thread at random because I couldn't figure out which was the more active thread and they are all talking about the same things. I'll put your words in black, and mine in blue.

Rich again: Well..that scenario, process and "science" would apply to all screening at any age. But..if a slow growing tumor is found in a young woman, it could be argued it has a greater chance of killing her since it has a greater head start.

Not really. It's not the slow-growing tumors that are the big threat to life. It's the fast-growing ones, which are more likely to metastasize, perhaps even from day 1 (figuratively speaking) in their life cycle. And those are the very tumors that are LEAST likely to be found by mammography. They are more likely to found as "interval" tumors, between mammograms, noticed by the woman (or man) or her (his) partner in the course of daily life. They are typically the ones at work when you hear of a tumor springing up within a month or two of a "clear" mammogram. Yes, sometimes mammograms miss cancers but sometimes cancers grow so fast that they literally seem to appear within months - and unless one is having mammograms every few months or the timing of one's yearly mammogram is lucky - mammography is not going to help save lives lost to those aggressive cancers. This is true in all ages of women, and is part of the reason they cannot find a difference in deaths between women screened every year vs. every 2 years. And as you say, these more-aggressive tumors seem to be more common in women under 50, another reason (in addition to breast density) that mammography cannot show evidence of benefit for them.

In fact, it is pretty well established that BC in younger patients tends to be the more aggressive types. More aggressive cancer, undetected..over a longer period of time. Hmmm.

See above. If we're talking about these really aggressive cancers, the time-frame, and/or the size of the primary tumor, is of less significance than the biology of the cancer cells. We do not know nearly enough about this, but we know more than they did 20 years ago.

I remember hearing this thinking about older women years ago. Now it's being played out at the other end of the age bracket.

Not sure what you mean by that, but if you can explain more, I'll respond. You will find studies and/or researchers who do maintain that mammography isn't of benefit to anyone, any age, as far as saving lives. Probably that's a little extreme, but just the fact that they can find evidence to support that stance, in a few studies - shows us what a poor a tool mammography is, especially compared to what the life-saving attributes the awareness and screening campaigns would imply.

That's a logical (I think) way to look at it. And it also fits with people's intuition and years of PSAs. Makes it a hard sell from both angles.

Again - not sure exactly what you're getting at but yes, the issues of screening are somewhat similar, between prostate and breast cancer.

And yeah..mammography is oversold in the sense that it also has significant false negatives. I wonder how many women have taken false assurance from a negative mammo and stopped any self-exam. I forgot..those are unnecessary.

I don't know about stopping self-exam (which they are not exactly saying is "unnecessary" - they are saying that teaching a formal regimen of BSE does not save lives). But I personally know of two women who sat there for months with lumps they were aware of, because they'd had negative mammograms and so felt safe. Now did that make a difference to their outcome? Probably not, maybe so.

But..I'm glad it won't get run up the beancounter's flagpole. Might keep an eye on it anyway.

Always! Keep an eye on everything. Advocate for better answers so we can have fewer deaths. I am bleary-eyed and going to bed now but we can talk more in the morning if you want. I didn't realize you were asking the question about being "inflammatory" of me - it was someone else who accused ME of being inflammatory, not the other way 'round. When I look at the posts, they are just one after the other - no way to tell who's responding to whose post unless it's prefaced that way.

Debbie
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3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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Old 11-21-2009, 12:10 AM   #22
Rich66
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Re: A Message from Dr. Love about the New Mammography Guidelines

Thank you for the calm discourse. I agree they don't know everything. And they don't know what treatments in the works now will change the ability to deal with this disease tomorrow.

Futhermore, if it were as simple as cancers that pose no threat or cancers that are untreatable no matter when they are discovered, screening would be irrelevant at any age.
Again..I can see this kind of think at least being floated in older patients with "comorbidities". (I hate that %&^%& word) i have seen frst hand the misjudgement of co-morbidities as well.
Avoiding early detection in younger patients is like saying they have either harmless cancer or cancer that won't benefit from early detection/early treatment. I'd have to see something that spells that out convincingly. And even then it would be based on the equations and paradigms of the past. Let's give young women, and their future treatment teams, the benefit of the doubt. Maybe some better diagnostic tools could help too:

Thermography preferable to mammography
Women with a continued interest in breast cancer screening would do well to choose thermography rather than mammography. Thermography utilizes digital infrared imaging, a safe detection method that analyzes body heat levels in and around the breasts. By analyzing blood vessel circulation and metabolic changes that typically accompany the onset of tumorous growths, thermography is arguably the most effective, accurate, and safest breast cancer detection method.

Her2-ers here were battling against statistical odds long before T-DM1 was a glimmer in anyone's eye.
In terms of the sell of the idea, I was suggesting the general public is going to have some difficulty switching from a being drilled on the importance of mammograms to being told they don't benefit younger patients.
But what do I know? And what will they know tomorrow?
Here's what I saw today:

Cancer Epidemiol Biomarkers Prev. 2009 Mar;18(3):718-25. Epub 2009 Mar 3.
Cost-effectiveness analysis of mammography and clinical breast examination strategies: a comparison with current guidelines.

Ahern CH, Shen Y.
Department of Medicine, The Dan L. Duncan Cancer Center at Baylor College of Medicine, Houston, TX 77030-4009, USA.
PURPOSE: Breast cancer screening by mammography and clinical breast exam are commonly used for early tumor detection. Previous cost-effectiveness studies considered mammography alone or did not account for all relevant costs. In this study, we assessed the cost-effectiveness of screening schedules recommended by three major cancer organizations and compared them with alternative strategies. We considered costs of screening examinations, subsequent work-up, biopsy, and treatment interventions after diagnosis. METHODS: We used a microsimulation model to generate women's life histories, and assessed screening and treatment effects on survival. Using statistical models, we accounted for age-specific incidence, preclinical disease duration, and age-specific sensitivity and specificity for each screening modality. The outcomes of interest were quality-adjusted life years (QALY) saved and total costs with a 3% annual discount rate. Incremental cost-effectiveness ratios were used to compare strategies. Sensitivity analyses were done by varying some of the assumptions. RESULTS: Compared with guidelines from the National Cancer Institute and the U.S. Preventive Services Task Force, alternative strategies were more efficient. Mammography and clinical breast exam in alternating years from ages 40 to 79 years was a cost-effective alternative compared with the guidelines, costing $35,500 per QALY saved compared with no screening. The American Cancer Society guideline was the most effective and the most expensive, costing over $680,000 for an added QALY compared with the above alternative. CONCLUSION: Screening strategies with lower costs and benefits comparable with those currently recommended should be considered for implementation in practice and for future guidelines.

PMID: 19258473 [PubMed - indexed for MEDLINE]
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Old 11-21-2009, 01:02 AM   #23
hutchibk
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Re: A Message from Dr. Love about the New Mammography Guidelines

Quote:
"It was in THE NEW YORK TIMES, hardly a publication lacking respect nor track record for excellent and accurate reporting."
With a well documented recent history of continued plagiarism and fabrication, I find it hard to consider the NYT a credible source about much of anything.

UPDATE, 11/21/2009, 4:30pm CST:
Notice in my above sentence I did not accuse the NYT of political bias. I referenced the well documented plagiarism and fabrication in their reporting. No need for anyone (2 in particular in other threads) to fallaciously connect my opinion of the NYT to incoherent posts about the perceived political bias of Fox News... wow. Odd. Interesting. Silly.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 11-21-2009 at 03:37 PM..
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Old 11-21-2009, 01:11 AM   #24
hutchibk
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Re: A Message from Dr. Love about the New Mammography Guidelines

That said, of course everyone wants better diagnostics and wants to keep an eye toward innovation, but we aren't there yet and mammo's save lives. I am always suspect when reconsidering testing recommendations or proposing not testing because of the "emotional toll" that diagnostics might take due to false positives. I would rather have a lifetime of false positives than not have access to the test that ACTUALLY gave me an ACCURATE positive at age 44 and afforded me at least an extra 6 years as of this week... and still counting.

It's not surprising that this is getting very emotional for women, as this week it seems we are experiencing an all out assault on women's health.

The same Task Force also cited new recommendations to pull back heart health screening for women based on data ending in 2002, ignoring newer studies that seemed to fly in the face of the recommendation to pull back from current heart health screening practices.

And then to hear today about the new pull back for pap smear/exam recommendations to every two years beginning at age 21.

There is a MUCH bigger picture here and I won't pretend that there isn't. This is all very suspect, and the timing is tremendously curious.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."

Last edited by hutchibk; 11-21-2009 at 02:54 AM..
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Old 11-21-2009, 07:58 AM   #25
swimangel72
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Re: A Message from Dr. Love about the New Mammography Guidelines

Debbie, Rich, Hutch, Sherry, Rhonda - and everyone else who has taken the time to do research and post replies - I want to thank you all, no matter what your opinion, for your intelligent words.......for your caring concern and for helping me to keep an open mind. It's interesting to me that my mother (85 years old like a Timex - takes a licking but keeps on ticking) has never had a mammo or a pap smear. My MIL also never had a mammo - and has never been to an ob/gyn since giving birth to her last child 44 years ago. I also recall a study showing that many small bc tumors really "disappear" over time........but even so, I reassure myself that I didn't get overtreated for my small .9cm Stage 1 tumor because it was NOT in that category since it was Her2++++ . I think in many ways, the new guidelines and the firestorm is has created will bring renewed attention to the problem we ourselves have been addressing for so long...........why are the rates of death from BC not decreasing? And ultimately, as I said before, I hope that our donations will go towards PURE research towards better screening methods (where's Dr. McCoy and his tri-corder when we need it?) and towards a cure for ALL cancers. Thank you again - and have a good weekend everyone.

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Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%

Last edited by swimangel72; 11-21-2009 at 08:29 AM.. Reason: add an emoticon
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Old 11-21-2009, 02:56 PM   #26
StephN
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Re: A Message from Dr. Love about the New Mammography Guidelines

Dear Kathy -
What a great picture. And I love the "Stand Together" message.

To your question on the NOT decreasing death rate. We also have an increasing diagnosis rate and higher in younger women, to counterbalance the lives saved by newer and more individualized treatments.

It has also been proven that the beast is much more complicated than thought 5, 10 or 15 years ago. I can't count how many times I heard "the more we find out about breast cancer, the less we KNOW" at the AACR conference last April.

If the researchers could invent bionic breasts, might that solve the breast health screening questions?
Wonder where on the genetic thread this would go?
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 11-21-2009, 06:24 PM   #27
WolverineFan
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Re: A Message from Dr. Love about the New Mammography Guidelines

Debbie,

While I respect the right for each person to voice their opinion, I obviously don't share the same opinion as you. Honestly, it is amazing to me that anyone who has or had bc (or loves someone that has or had bc), particularly someone with HER2 bc, could be in support of these guidelines.

While my situation pales in comparison to many who have posted on this board already, had I waited until age 50, I would be dead. I have no history of bc in my family and was in, what I thought, great health. While my lump was found on my own because I hadn't even reached the age of 40, it would have been found on one when the time came because it did show up. I have two small children that I absolutely have to be here for, and I am grateful every day that mine was caught at an early stage. I am also now thankful that I do have bc, because my sisters, ages 47, 46 and 33 will meet the new guidelines and be able to have the necessary screening to at least offer a chance at catching it early should they develop this wretched disease.

I realize there is no guarantee that the mamms will find cancer, and I also understand that it can yield false results, but the flip side is it also DOES find cancer and as a result, DOES saves lives. Maybe not to the degree that the insurance companies would like, but try telling that to the women and their families whose mamm showed the cancer.

I was one that didn't sign my name on an earlier post, which is odd because I normally do sign my name. The only reason I could think of that I didn't sign it is because I was so flaming mad after reading Dr. Love's blog.

Gladly...here is my name,

Hayley Rose
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Oklahoma

3/35/2009 - Diagnosed, age 39
5/7/09 - Mastectomy and reconstruction started. Two tumors found. Tumors were side by side. DCIS tumor was 2.8 cm, ER-, PR-, grade 2. Invasive tumor was 1.1 cm, poorly differentiated, grade 3, ER+90%, PR+95%, HER2+3. Thankfully, no node involvement.
5/29/09 - Second surgery resulting from difficulty healing from mastectomy.
6/2/09 - Began Herceptin treatments
6/23/09 - Began Taxotere and Carboplatin treatments along with Herception every 3 weeks.
10/06/09 - Completed Taxotere and Carboplatin - Yeah!!!
10/27/2009 - Herceptin maintenance and began Femara
12/10/2009 - 2nd stage reconstruction surgery
2/2010 - Body rejected saline implant
3/18/2010 - Second stage reconstruction using silicone implant
5/4/10 - Completed Herceptin - YEE-HAA!
May '10 - Body rejects silicone implant...taking a break.
11/29/10 - Hysterectomy
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Old 11-21-2009, 07:18 PM   #28
Jackie07
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Re: A Message from Dr. Love about the New Mammography Guidelines

Found this statement on an Irish Health care site. I think it is the type of information most of us are familiar with. Mammogram had contributed to a 2.3% annual decline for 'all' women and had greater decrease for women 50 years and older.

"A mammogram is a safe, low-dose X-ray that can detect irregularities in the breast, sometimes even before you or your doctor can feel a lump. A high-quality mammography has the ability to detect cancer before the physical signals are present. Multiple studies have shown that they save lives and increase treatment options. Women that have their annual mammogram screening are 30% less likely to die from breast cancer when compared to unscreened women. From 1990-2000, mortality rates declined 2.3% per year for all women and an even greater decrease per year for women 50 years and under. This is the result of both early detection and improved treatment."

Why has it suddently become 'unsafe', 'unreliable', and 'do it only when you feel a lump' is hard to understand. I will welcome any new, improved method whether or not it was developed by special interest group or benefit certain promoter. But before we've got another reliable (and hopefully as inexpensive as mammogram) method, I would think it's prudent to continue the type of guideline that encourages early detection. Because it saves lives. '30% less likely to die' is not a statement to be ignored.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
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