Giuliana Rancic early stage BC

Beeb, sorry I snapped-- I didn't mean to make you feel bad about your post. I wasn't trying to target a specific poster, but realized that I did by quoting your post. I apologize!

I was first diagnosed with DCIS. Two years later, I was Stage IV. I'm one of the 2%, and I think I do feel like I understand both sides-- the frustrations of the early-stagers and the late-stagers. And the frustration with the media portrayals of breast cancer being "beatable" if just caught early.

I constantly remind friends and family that early detection is a tool. Early detection is NOT a cure. 

BREAST  MRI's!..i was on a rampage when i first joined here (stage IV at dx) (i have dcis and idc and bone mets) after researching screening tools, but as i was new, i wasnt aware of how people can take offense, and posted a huge speel in the stage IV forum   BUT i will say it again here, PLEASE, i would ask us all, early stagers too, to research breast MRI's..read between the lines...they CAN be used as an early detection tool....way early...There are women on this board who have used MRI's as a preventative tool...micro calcifications can be watched or treated/removed. It hurts to be stage IV in my 40's. It hurts to know there is a tool that could have detected BC in it's development. But I feel that is what we should be fighting for!...cheap standard breast MRI's from a young age. Like pap smears...early detection of altered conditions in the breast is possible...Mammos arent all we have. Its just MRI's are expensive. (but not in Japan!) I know nothing is perfect!..and there are false positives etc...but i would prefer to make an informed decision early than have no control later. A breast MRI has NO RADIATION ISSUES...i believe breast MRI's are the best tool we have..mammo didnt see my cancer! (dense breasts)...i tell every woman i know (including my daughter) that to help you stay one step ahead of BC..demand, or pay for, a breast MRI.every 2-4 yrs. we are debating because we are frustrated that BC is portrayed as an easy disease to 'fight', yet we well know screening is less that perfect, and that the disease can be far more serious. Giuliana is young, (gorgeous) dignified, a public figure, yet in shock. Its not her responsibility to be our advocate as a newly dx'd woman. WE can advocate for facts!..if you read up on MRI's you will see it worded as "breast MRI's as a preventative tool is still under study, or currently being researched'....yeh right, that is code for 'they cost too much, training people to read them costs too much, the time it takes to read them costs the hospital more...mammos, imperfect as they are, are a much more cost effective option, and what's a little squishing and radiation?..' (my interpretation) (check out how affordable a breast MRI is in Japan) of course we are all frustrated and angry. I am too.

We all remember the first occurrence vividly, right? I was one who preached how curable BC can be. Partly it was what I heard the docs saying to me. They try to get new pts off the ledge. And then I tried to convince others so they would come off the ledge.



But truly what they said was I had a 98% chance of no recurrence in 5 years if took all treatments. And they said, we caught it early.



Maybe that's why the newly diagnosed come out sort of preaching, partly to assure themselves and others around them. And you warn others to catch it early, as if whatever any woman is doing now for screening she must do more. Why not scan teenagers to catch this thing, you might start thinking in your crazy new world of fear. I'm saying those early ideas are confusing and you grab all the hopeful and reassuring sound bites and repeat them.....

I'm glad they put it that way and I went about living without fear (except during mammogram). you know, you could get hit by a bus, move on, etc. Sounds callous maybe but I had some really great years and I know I tried to sell the same sunny picture to any newly diagnosed, to get them off the ledge!

My surgeon said the ultrasound saved my life not the mammo...though I fully realize there is a 14 percent chance I will get mets.

I do think that early detection saves quality of life. If I had caught mine before it spread to a node, maybe I could have been spared lymphedema. I realize to stage four women that might sound like a "luxury problem"

I know many tumors never leave the breast, but I would assume once it moves to the nodes, it keeps moving. As my oncologist says "cancer cells like to move around".

 I wrote previously on this thread about Dr. Welch's book Overdiagnosed and explained that he devotes chapters to prostate and breast cancer screening.  As you all know, last week, there was a recommendation made to reduce prostate screening.  Likewise, I recalled while reading his book, the following study, which by coincidence mentions that Dr. Welch wrote the accompanying editorial.  The study was published in The New England Journal of Medicine, last year:

Screening Mammography Associated With Modest Decline in Breast Cancer Mortality

Roxanne Nelson

September 22, 2010 - Another study has found that screening mammography   does reduce the mortality rate from breast cancer. However, the reduction was   considerably smaller than was expected, and lower than that seen in previous   studies.

The data come from Norway, and are reported in the September 23 issue of   the New England Journal of Medicine.

Participation in the Norwegian breast cancer screening program was associated   with a 10% reduction in the rate of death from breast cancer among women 50 to 69   years of age, said lead author Mette Kalager, MD, from Oslo University Hospital in   Norway.

However, only part of this reduction can be attributed to the screening program,   she said, because during the period that the study was conducted, Norway built   multidisciplinary teams to treat breast cancer, which also had an impact.

"One third of the mortality reduction we observed in the 20-year period -   1986 to 2005 - can be associated with the screening program, while two thirds   can be attributed to enhanced breast cancer awareness and improved diagnosis and   treatment for breast cancer," she told Medscape Medical News.

Lower Than Previously Seen

Previous studies with a follow-up period of 10 years or less have shown a   relative reduction in the rate of death from breast cancer (from 6.4% to 25.0%).   The mortality reduction in the current study is also much lower than the 15% to 23%   estimated by the US Preventive Services Task Force.

There are several possible explanations for these differences, explained Dr.   Kalager. "It is quite plausible that today, the effect of increased breast cancer   awareness and improved therapy have outweighed the effect of screening on reducing   mortality from breast cancer."

"Thus, screening may be less important than it was 20 years ago," she added.   "Further, our study is a population-based cohort study, and sometimes results from   the randomized controlled trials are not reached in a population setting."

Even though the reduction in mortality was less than expected, Dr. Kalager   emphasized that the screening program reduced death from breast cancer for women 50   to 69 years of age.

Importance of Optimized Care

Another surprise was that in women who were in the nonscreening age group (70 to   84 years), the reduction in breast cancer mortality (about 8%) was largely the same   as in the screening group (women 50 to 69 years of age).

"This can be explained by treatment by the multidisciplinary teams of highly   specialized radiologists, radiologic technologists, pathologists, surgeons,   oncologists, and nurses that managed the care of the patients," Dr. Kalager said.

Thus, the 10% reduction we found in women in the screening age group  "is   attributed to both the mammograms and management by multidisciplinary teams," she   said.

The program began in Norway in 2005, and all women 50 to 69 years of age   received an invitation to undergo screening mammography every 2 years. Each county   in Norway was required to establish multidisciplinary breast cancer management   teams and breast units before enrolling in the national screening program, Dr.   Kalager explained.

For women outside that age group (the nonscreening cohort), the change in   mortality could be related only to the establishment of multidisciplinary teams,   she said. "The importance of optimized patient care is often missed."

A Delicate Decision

In an accompanying editorial, H. Gilbert Welch, MD, MPH, writes that screening   mammography has become one of "the most prominent measures of healthcare   performance." Dr. Welch is from the Dartmouth Institute for Health Policy and   Clinical Practice, Dartmouth Medical School, Lebanon, New Hampshire.

The decision about whether to undergo screening   mammography is, in fact, a close call.

Healthcare "report cards" have focused on ensuring that all women undergo the   procedure, he writes. However, in highlighting the fact that the mortality benefit   is modest, the current study helps confirm "that the decision about whether to   undergo screening mammography is, in fact, a close call."

"Many observers will argue that because it is a delicate decision -   involving trade-offs among noncomparable outcomes - it must be left to   informed individuals to decide," writes Dr. Welch.

However, there are those who will argue that physicians should continue to   persuade their patients to be screened, and that the modest benefit is worth any   associated harms, he adds.

"No one can argue that screening mammography is one of the most important   services we provide in medicine," explains Dr. Welch. "But the time has come for it   to stop being used as an indicator of the quality of our healthcare system."

The Norwegian Protocol

In the Norwegian study, 40,075 women received a diagnosis of breast cancer from   1986 to 2005.  Of the 4791 women (12%) who died, 423 (9%) received their diagnosis   after the screening program was introduced.

The study consisted of 4 groups of women: a screening group of women who lived   in counties that had a screening program (1996 to 2005); a nonscreening group of   women who lived in counties that did not have a screening program (1996 to 2005);   and 2 historic groups from before the implementation of the screening program (1986   to 1995) that mirrored the screening and nonscreening groups.

The analyses showed that the death rate in the screening group was 18.1 per   100,000 person-years, compared with 25.3 per 100,000 person-years in the historic   screening group, for a difference of 7.2 deaths per 100,000 person-years (rate   ratio, 0.72; 95% confidence interval [CI], 0.63 - 0.81; P <   .001). This amounted to a relative reduction of 28%.

In the nonscreening group, the mortality rate was 21.2 per 100,000 person-years,   compared with 26.0 per 100,000 person-years in the historic nonscreening group.   This amounted to a difference of 4.8 deaths per 100,000 person-years (rate ratio,   0.82; 95% CI, 0.71 - 0.93; P < .001), for a relative reduction   of 18%.

Criticism from ACR

The American College of Radiology (ACR) has criticized the study, noting that   there are "many problems with the article."

In a statement, Daniel B. Kopans, MD, chair of breast imaging at Massachusetts   General Hospital in Boston, notes that although the study authors agree that   screening for breast cancer saves lives, the issue is how many lives saved does it   take to make screening "worthwhile."

The current study also suggests that most of the decline in breast cancer deaths   is due to improvements in therapy, and the contribution from screening is lower.   Dr. Kopans points out that "there are large published studies from Sweden and the   Netherlands that disagree with these results and show that most of the decrease in   deaths is due to screening and not therapy."

Although there are several reasons for the differences in results, a notable one   is the extremely short follow-up period of the current study. He questions why the   figures are not more up to date, being that they were drawn from a registry.

"It is clear that when screening programs begin, not everyone starts being   screened on day 1, but one has to wonder why, if screening began in 1995, they   only have an 'average of 2.2 years' of follow-up," he states. "The more important   question is why did they stop at 2005? It is now 2010."

The ACR has launched its own interactive source of information - MammographySavesLives.org. It will be launched this week, along   with a series of public service announcements that will be broadcast on television   and radio stations nationwide.

The purpose of this campaign, according to the ACR, is to "clear confusion,   reduce unnecessary breast cancer deaths, and help women avoid extensive treatment   for advanced cancers that went undetected because they did not get annual   mammograms."

The study was supported by the Cancer Registry of Norway and the Research   Council of Norway. The researchers have disclosed no relevant financial   relationships.

N Engl J Med. 2010;363:1203-1210; 1276-1278.

Cookiegal...What you are referring to is the Cochrane Reviews' data.  Dr. Welch also discusses that in his book.  He quotes Iona Heath, MD - a physician who is now the president of the Royal College of General Practitioners:

"The evidence review suggests that for every 2000 women invited to screening for 10 years one death from breast cancer will be avoided but that 10 healthy women will be overdiagnosed with cancer.  This overdiagnosis is estimated to result in six extra tumorectomies and four extra mastectomies and in 200 women risking significant psychological harm relating to the anxiety triggered by the further investigation of mammographic abnormalities"

According to Dr. Welch, Dr. Heath CHOOSES NOT TO DO SCREENING MAMMOGRAMS ON HERSELF:

" She worries that she made the decision not to pursue mammography on the basis of information that is not readily available to her patients."

In his book he also states:

There is another harm to mammography that is less often mentioned:  the harm of advancing the time of cancer diagnosis without ANY INFLUENCE ON LONG-TERM OUTCOME.  A mammographically detected cancer can fall into one of three buckets:  (1) a clinically important cancer that is more curable because it is caught early (that's the benefit of mammography); (2) an overdiagnosed cancer (which I'll get to in a minute); or (3) a clinically important cancer that is NOT more curable when caughter early.  Actually, most-over 90%, in fact---of mammographically detected cancers fall into one of the two last categories.  The patient in the final category may be cured of her disease regardless of whether it is detected clinically (after symptoms arise) or by screening, or she may be destined to die from her disease regardless of when and how it's caught.  The effect of mammography in this category is straightforward:  women are told they have breast cancer and are treated for breast cancer earlier than they would have been without mammography.  They don't benefit from this early detection; instead, they are simply turned into breast cancer patients at a younger age."

 This was published in September!

Tumor Characteristics Associated with Mammographic Detection of Breast Cancer in the Ontario Breast Screening Program

Victoria A. Kirsh; Anna M. Chiarelli; Sarah A. Edwards; Frances P. O'Malley; Rene S. Shumak; Martin J. Yaffe; Norman F. Boyd

Authors and Disclosures

Posted: 09/12/2011; Journal of the National Cancer Institute. 2011;103(12):942-950. © 2011 Oxford University Press

processing....

• Abstract and Introduction

Abstract and Introduction

Abstract

Background Few studies have compared the prognostic value of tumor characteristics by type of breast cancer diagnosed in the interval between mammographic screenings with screen-detected breast cancers.
Methods We conducted a case-case study within the cohort of women (n = 431 480) in the Ontario Breast Screening Program who were aged 50 years and older and were screened between January 1, 1994, and December 31, 2002. Interval cancers, defined as breast cancers diagnosed within 24 months after a negative screening mammogram, were designated as true interval cancers (n = 288) or missed interval cancers (n = 87) if they were not identified at the time of screening but were identified in retrospect. Screen-detected breast cancers (n = 450) were selected to match interval cancers. Tumors were evaluated for stage, grade, mitotic index, histology, and expression of hormone receptors and odds ratios (ORs) and 95% confidence intervals (CIs) were calculated by conditional logistic regression.
Results Both true and missed interval cancers were of higher stage and grade than matched screen-detected breast cancers. However, true interval cancers had a higher mitotic index (OR = 3.13, 95% CI = 1.81 to 5.42), a higher percentage of nonductal histology (OR = 1.94, 95% CI = 1.05 to 3.59), and were more likely to be both estrogen receptor-negative (OR = 2.09, 95% CI = 1.32 to 3.30) and progesterone receptor-negative (OR = 2.49, 95% CI = 1.68 to 3.70) compared with matched screen-detected tumors.
Conclusions In this study, interval cancers were of higher stage and grade compared with screen-detected cancers. True interval cancers were more likely to have additional adverse prognostic features of estrogen and progesterone receptor negativity and nonductal morphology. The findings suggest a need for more sensitive screening modalities to detect true interval breast cancers and different approaches for early detection of fast-growing tumors.

You certainly live up to your name. Preach on, sister.  No mammograms.  No pink.  Your fate is pre-determined.

I'm really confused: lrr4993, are you referring to Voracious Reader?  I understand you may not agree or it pushes buttons, but this is great information regardless of the topic at hand.  She is a really respectable member of this community, I've learned a ton from her even though we haven't agreed on every single topic.

I think the point here is we should be pushing for MRI and better diagnostics.  How cool would it be if a celeb stepped up to the plate to differentiate what MRI does for young women with dense breasts. This is the level of nuance and attention the disease needs to catapult us to the next level. 

Anyway, I still feel horrible anyone would think I attack them or their disease here, and really want to participate in these boards in a constructive way to learn.  

The studies I refer to were published in our country's leading medical journals... The New England Journal of Medicine and the NCI's Journal of the National Cancer Institute. Along with JAMA, they are the gold standard in the scientific community.

Yes, they are well-respected publications.  But simply being published in them does not mean the thesis of the article is generally accepted in the scientific community, nor does it redefine the applicable standard of care.  It takes a hell of a lot more than one study and one article to get to that level. 

The reason MRI was provided by my insurance company is because fortunately a big swath of the medical field understands mammography is insufficient in high-risk, dense breasted women.  areyoudense.org gives voice to the campaign to make it standard of care.  The cool thing is, studies like this are helping oncologists fight on behalf of their patients to get better testing.  The ugly side:  an oncologist told me they take about 4x longer to read, and hospitals don't get compensated for that time.  Pressure also comes from radiology departments who have too many of us to contend with.

Not to be all Pollyanna or whatnot, but I forced the issue on my MRI because of you all as a community.  That includes lrr4993, VoraciousReader, Member, Chickadee,and a whole lotta other cool people here.  So, respect to all.

Kathy - I completely agree with you.  The problem, as I see it, is that every time a public figure announces she has a good prognosis from early stage cancer, she is berated on this board for saying she has a good prognosis.  Letters are written to her.  Her facebook pages is bombarded.  All for the purpose of pointing out to someone (who is probably already scared to death) that early detection is not a guarantee, that she could easily end up stage 4, and that this is the message that should be sent to the public, instead of the current message of early detection through screening is important.  That is my issue. 

I think educating yourself is very important, as long as you recognize that finding a needle in the haystack article that says one thing where there are a million other saying the opposite (that is where the standard of care comes from), does not redefine what people should or should not be doing for their health.  I personally walked into my oncologist's office with a stack of research at every appointment when I was first diagnosed and was going through treatment.  I questioned her about everything.  I owe that to myself.  

That said, I find it mind-boggling that anyone would argue that early detection is not important and yet, every time a public figure makes an announcement, the same group starts going off about no more awareness and no more early detection because it does not work - find a cure.  A cure is very important, and I know people are working it.  However, the reality is that there is no cure right now and given teh nature of this disease -- a cellular malfunction that continuously mutates, making it a moving target and allowing it resist and survive treatments -- makes finding a complete cure incredibily difficult.  And even if a cure is found, I do not see that early detection will go away.  Better to apply the cure sooner rather than later before it can cause collateral damage (liver damage, brain damage, etc).

voracious - you post makes my point for me.  growing momentum is not scientific acceptance.  Maybe it is headed that way, but it is not there yet.  If it were, no doctor would recommend and no insurance company would pay for the out of date treatment.

 Seriously, this topic is irresistable to me, but I really have to stop.   I am going to get to get fired if I do not get some work done.

Sorry to harp on this point, LtotheK, but what YSC statistics are you talking about? I've now gone to their statistics page twice and I don't see any mention of the prevalence of more advanced cancers among young women. (though I know that, comparatively speaking, more young women are higher stage compared to their older counterparts because we aren't screened regularly.)

But you said they are "often" diagnosed at Stage IV (which is different from advanced, which might mean Stage 3, or large tumors, or any lymph node involvement.)

What's "often"? If used comparatively, it's typically used in the context of "rarely", "sometimes", "often", or "always." Which suggests it might mean, at least, more than half the time. But the actual stat for percentage of young women dx with breast cancer at stage IV is around 10 percent.

10 percent sounds more like "rarely" in the grand scheme of things. Or maybe even "sometimes." But not "often."

I don't mean to pick on you, LtothK, because I know your heart is in the right place. But one of my beefs about the way we -- and doctors too -- talk about breast cancer is that we use words that we don't define well. And they can really end up scaring people.

When I was first diagnosed, I kept encountering the words "poor prognosis" for younger women, for positive lymph nodes, for those with LVI, and high K--67 -- all of which I had. And it really freaked me out until I pinpointed exactly what "poor prognosis" actually meant, which was relapse rate of more than 10 or 20 percent. But still, 70+ percent of the patients were surviving which, when you looked at it that way, didn't seem so poor after all. The odds are still in everyone's favor.   

All I'm saying is let's define our terms, and use links to support our stats, and try not to unnecessarily scare people with poorly-chosen or incorrectly-defined words.