Critical Thinking Not Fear Based

I don't agree with you at all.  I don't think it is panic driven fear from the medical community either. 

I think the only type of critical thinking that is going on with these new guidelines is a cost-benefit analysis. 

I note that you are retired.  I therefore assume you were not young when you were diagnosed with your cancer. I was 36 and my children were four years old.  My cancer was found through BSE and then confirmed with a mammogram. It was grade three, around two centimetres and thankfully my nodes were clear.

When I met my oncologist she congratulated for finding my cancer at an earlier stage.  She said "My younger patients usually have much more advanced cancers."  I wonder why that is?  I assume it is because of this pervasive view that breast cancer does not affect younger women. It does, and when it does it is more deadly than in older women for a variety of reasons.

I am tired of young women dying and leaving their children behind. It breaks my heart everytime.  I haven't left BC.org and got on with my life.  I am here for the Mums who are fighting for their lives and desparately trying to remain here for their children, their babies, their entire reason for living.

I was very calm and thoughtful as I wrote this.  I just don't agree with you at all.

Kind Regards,

Sandy

Amen to that Sandy!!!!!!!!!!!!!!!!!!!!!!!

I've been thinking about this too...Dr. Nancy Snyderman says we irradiate 1900 women in their forties to save 1...and I think we'd all agree here that that one life is worth it!  I think for women in their fifties, it's 1300 screened to save one life...hmmm...how come scientists are thinking 1900:1 is too great but not 1300:1?  I'm asking sincerely here...no sarcasm.  Who picks the number for the cut off?

I mean...couldn't some lives be saved if we screened women beginning at 30?  at 20?  We all know stories of women in their twenties who have died from breast cancer.  How do we in our society decide when the ratio of screenings to lives saved is too great?  Is it just an arbitrary number? 

Are there men diagnosed with prostate cancer at 30?  25?  Wouldn't it be good to start those screenings at 20 to save that one man's life whose cancer could be caught?   Same thing for colonoscopies.  I think Katie Couric's husband was in his forties when he died...I wonder what she thinks of the guidelines calling for screening at age fifty.

And the argument could extend even further:  If one child's life could be saved by an MRI at age 5 screening for brain cancer, could we argue that all children should be screened to save that one precious child whose cancer could be caught early?  I wonder what that ratio would be, and what science would think of it...what we would think of it.  In all these ratios, whether 1900:1 or 19,000: 1, the number 1 is a constant...the number 1 represents one important, beautiful, beloved life.  Where is our cut-off for health screenings and how do we choose it?

Just thoughts I'm turning over in my head.  In my gut, it just seems that mammography at 40 feels right because we all know so many people who were diagnosed in their forties.  I wonder if that 1900:1 ratio understates things.  And I wonder if Dr. Snyderman saying "irradiated" instead of "screened" kind of skews her argument--I mean, is there really a significant risk factor in yearly mammogram radiation?  Seems safe to me...and jeez, I'm being heavily "irradiated" right now (35 treatments) because my DCIS was focally positive in two spots just a tenth of a millimeter from chest muscle and chest wall and I had very close margins at the skin. A panel of doctors determined that for me, the benefit of radiation outweighed the risk.  In that sense, my radiation is "good" radiation.

No answers, just thoughts.  Thanks Blundin2005 for your post.

I was interested to see that HHS Secretary Sibelius has said that the proposed guidelines will not affect federal guidelines.

I agree that calm and thoughtful discussion is more productive than knee-jerk panic-based reactions. BUT I'm really struggling with the suggestion to ignore the fear part of it.

Yes, I'm afraid.  I'm horribly afraid, and I believe we all should be afraid of this new guideline!  Far from fearmongering or lashing out in a blind panic, I have every reason to be afraid.  My very aggressive triple negative tumor seemed to come out of nowhere, overnight.  I had no known risk factors, no family history, and I'm BRCA negative.  And I was 39 at diagnosis.  I can't help but wonder if something would have been seen on imaging earlier and diagnosed before it became 5 centimeters, but I wasn't yet "old enough" to even have my first mammogram!  Screening needs to be earlier, not later.

I don't know if you saw my other posts, but I did some critical thinking and gave links to some pretty scary facts about triple negative breast cancer.  Bottom line is TNBC is prevalent in young women (under 51!) and is very aggressive and difficult to treat.  Recurrence rate for TNBC is 32% and average life expectancy after recurrence is only 9 months.  

In my reality and that of my 3 young children, those numbers are indeed fear-inducing.

This is an EXCELLENT thread.  I hope it stays as calm as it has been, so far.  ('Course, it's only been here for 5 or 6 hours!)

At this point, I oppose the new guidelines; but I really can't explain why.  I am a scientist by training and profession (biomedical sciences), and everything scientists do is evidence-based.  If we can't think critically, we can't do our jobs.  So, I probably should support the USPSTF guidelines and argue in their favor.  But, I can't, at least not yet, because my own, personal situation keeps getting in the way.  And, of course, I can't help thinking about all the other women here at BCO and elsewhere who will be affected by a change in the screening guidelines.  I also think that any recommendations guiding heathcare decisions ought to be reached by consensus of a variety of groups (American Cancer Society, College of Radiology, ASCO, the breast surgeons, family care practitioners, etc.).  No one should listen to this one single organization's recommendations without receiving input from the others.  And, so far, the input from the other groups has been knee-jerk -- they've just read the same papers some of us have read.  They haven't conducted their own studies and analyzed their findings.

Anyway, I need to log off now, because I'm going to a BC support group meeting in a nearby town.  The USPSTF guidelines are the topic of discussion for today's meeting.  I'll let you know what happens.

otter 

I was dx before age 50, but I found the lump myself.  I've had to refuse  mammograms due to my high cumulative rad exposures-  but with  ultrasound and MRI,  the docs are proceeding with my tx without a problem. 

Yesterday on NPR I heard a story about the cost of MRI in the US vs Japan -  and it was jaw dropping difference. 

MRI's seem to be an excellent tool,  without the risks of rads - why arent' folk up in arms that MRI is not the screening tool of choice? Especiallly because main argument I've heard against MRI, is cost. 

The younger you are, the odds go up that mammo will actually CAUSE breast cancer. I'm really surprised how many women do not seem concerned about those risks.  

When I had my MRI (after my first mammogram found high grade DCIS), my surgeon told me that the false positive rate with MRIs is very high.  I had the sense that it was higher than with mammograms.  Perhaps I misunderstood, but if this is correct, it is another reason that MRIs are not used for screening of all women.  Also, for me at least the MRI was a much more difficult procedure than the mammogram -- took a long time, stressful, etc.  This may factor in as well.  (I'm sure cost does too.)

Pill...Not all breast cancers will show up on MRIs such as DCIS which will only show up on a mammogram.  That is why you will have BOTH an MRI and a mammogram when you find a lump.

All three of the tests have their frustrations:  the diagnostic mammogram did not show anything but a generalized "increased density of breast tissue" the day after my physician found the lump during a routine exam.  The ultrasound that I had that same day showed the 2.5 cm lump but nothing else.  The MRI didn't show the lump specifically but found the whole field of DCIS to be 6 cm x 4 cm x.4 cm...filling the whole bottom half of my breast.  I wish we could all have all three tests each year!

After the biopsy showed carcinoma, my BS called my physician to tell him how impressed he was that he found the lump in the first place and acted on it.  I"ve been surprised to hear that the new recommendations not only discourage the teaching of self-exams, but also insist that annual clinical exams are questionable in their effectiveness too.  Why discourage these very practical procedures?  Makes no sense to me.

The thing is, that even though a mammogram diagnosed my cancer, I knew that mammograms were not a benign nor terribly accurate test. What these guidelines seem to be saying is that nothing we're doing right now to screen for bc is very good at doing it and that as a result a lot of women are having what turns out to be unnecessary medical procedures. Now, since mine wasn't unnecessary, I'm all for biopsies and figure if yours turns out to be not cancer that's good. But if you've had repeated benign biopsies and perhaps suffered some complicating infection, etc., you don't think of it as a good thing. You're likely to wonder why the doctor keeps putting you through this unnecessary, painful experience. If you are the 1 in 2000 (and I am one of them) it seems worth it you you to treat all these people who didn't need it, but if you are one of the 1999, maybe its not to you.

Sort of like how I feel about chemo. Being ER+ the chances are good that it really didn't help me -- only something like 10 out of 100 women in my situation benefit -- but I wasn't willing to risk being the one that it would help. And every woman facing the chemo issues has to decide what degree of benefit makes it worth the risk that they are undertaking a painful treatment with it's own risks that doesn't help them at all.

I've been amazed at how many things I had to decide for myself in this cancer experience and it sounds like screening is going to become another one of those for women under 40. The doctor will say, "here are the risks and here are the potential benefits. Do you want a mammogram?" And I would have said no, and my cancer would still be growing in there probably. (I mean, it might have gotten big enough and in a position where it could be felt by now! )

Let me just say AARRRGH. This is hard. Otter, could you clarify it all for me?

READ THE FINDINGS 

Having a science background (nerve and muscle cells) I find the task force findings or methodogy questionable.  I don't agree with their statistical analysis and I find it very questionable that they used studies in China and Russia to determine that teaching self exam was "useless."

Having worked for the insurance industry, I can guarantee that unless the other groups continue to disagree with the task force, it WOULD eventually be used by insurance companies as a reason to disagree.  Currently, the firestorm is what is preventing anyone from being seen as "the bad guy."

The task force is correct to look into the effect of the rads.  No test is without it's negatives.  I just don't think the people who made this decision were the best qualified for this particular topic and certainly find their decisions on which studies to include and use as woeful.

Most women have no idea if they are high risk and there is a concern that often their doctors are not fully informed as to the latest information.

Great thread and good discussion!  I agree, critical thinking is necessary.  So much of the reaction in so many of the other threads on this site, and all over the internet and on the news, has been fear based and/or anecdotal.  Breast cancer is personal, so it's understandable that many of us would respond so personally, but we need to realize that the new guidelines are not recommending what would be right for any one of us; they are recommending what would be right for the population as a whole.  So you need to look at the impact on the population as a whole (all women aged 40 - 49) to assess whether the new guidelines are reasonable or not.  

Personally I understand the rationale behind the recommendations, but like flash I think that the science, and many of the assumptions, were flawed.  I also think that while some changes might be appropriate in the mammogram guidelines, the proposals simply swing the pendulum too far. 

First, about the assumptions.  Here's how Forbes very simply explain the rationale:  "Overall, they found that starting screening at age 40 instead of age 50 would save relatively few additional lives. To prevent one additional breast cancer death, 1,000 women would have to get mammograms starting at age 40 vs. age 50. But doing this would result in roughly 500 of the 1,000 women getting false positive results at least once, and 33 of them getting unnecessary biopsies..."  http://news.sg.msn.com/forbes/business/article.aspx?cp-documentid=3709688    Related to this point, the concern, to my understanding, is the extra testing that women are put through and the unnecessary anxiety related to all those false positives.

So that's how the decision was made:

One side: 500 false positives, 33 biopsies  The other side: 1 life saved per 1000 

Looking at this from the standpoint of assessing the benefit to the population as a whole, I can understand why it might be felt that mammograms for women aged 40 - 49 are doing more harm than good.  500 (480, actually) false positives per 1000 women over 10 years?  That seems significant.  However, I think that there is a lot that was not considered. 

• On the one side, if all women get mammos starting at age 40, we have 480 women who experience one false positive over the 10 years from age 40 - 49, and we have 33 women who have unnecessary biopsies.  Perhaps I'm not interpreting this correctly, but does this mean that in 447 of these cases (480 false positives less 33 biopsies), all that is necessary after the false positive is another test such as a diagnostic mammo or an ultrasound?  And then the women get the "all clear"?  Of course anyone who has a call-back will have some anxiety, but in the scheme of things, it's a blip.  For most women, it's a bit of tension and stress for a few days.  And that's it.  Sure, there are some women who go ballistic when they have a call-back, but hopefully this recommendation has not been made to address this small minority. As for women who suffer long-term negative effects and on-going anxiety from this one call-back, they need help, but stopping screening for all women in their age group is not the answer.  Then there are the 33 women who have unnecessary biopsies; yes, their stress level and anxiety is greater, but still, it's temporary.  And of the 33, are all truly benign?  Or do some provide helpful information about future risk?  Are biopsies that show ADH, ALH and LCIS considered unnecessary biopsies?
• On the other side, while there may only be one death per 1000 women, what about the many other women who, because they get mammograms starting at age 40, are diagnosed at an earlier stage, thereby requiring less severe treatments?   Why was there no consideration of the pain, anguish and possible life-long side effects suffered by those diagnosed at Stage III vs. Stage I?  Or Stage II vs. DCIS?  Or with lymph node involvement vs. without?  All of these women may survive, but with the later diagnosis their treatment plan might vary drastically.  How many extra cases of lymphedema will result?  How many more women will require chemo?  How many more women will require Herceptin?  How many more women will require hormone therapy?  How many of these women will suffer the effects for months, years or even their lifetime?  Since the "anxiety" of unnecessary treatment was one of the major considerations for this recommendation, why was none of this considered?

Don't these additional considerations change the weighting on both sides of the scale?

Then there is the issue of overtreatment.  This seems to be another concern that has lead to these new recommendations.  Blundin, the article that you linked includes the following statement:  "Mammograms produce false-positive results in about 10 percent of cases, leading to anxiety that can last for years, unnecessary and sometimes-disfiguring biopsies, and unneeded treatment, including surgery, radiation and chemotherapy - each of which present their own complications and health risks, including an increased risk of other cancers and heart disease."

Unneeded treatment such as surgery, radiation and chemotherapy?  I can only assume that anyone who gets these treatments has in fact been diagnosed with breast cancer (excepting those who have surgical biopsies) - so the issue isn't that the mammo was unnecessary, the issue is that some in the medical community feel that some patients receive more treatment than necessary for their particular diagnosis.  Is the solution therefore to not diagnose the cancer until it is later stage (and then the treatment really is necessary)? Or is the solution to better educate doctors and patients about risk levels and treatment options for each type of diagnosis and particularly, for early stage breast cancers?  Certainly if mammos aren't done on women aged 40 - 49, then fewer early stage BCs will be detected and there will be less overtreatment of early stage BC.  But is that really the answer that the medical community, and those behind this recommendation, want?  If overtreatment is the issue, doesn't it make more sense to address overtreatment rather than address screening?

Lastly, there is the issue of the effectiveness of mammograms in younger women.  There is no question that mammos are not as effective as anyone would like, but the authors of this study neglect to mention that mammos are not ineffective either.  A mammo at age 48 found my BC - although by the time it was found, DCIS had spread throughout my breast and broken through the duct (a microinvasion).  So I can vouch for both the effectiveness, and ineffectiveness, of mammos (oops, that's a personal anecdote, isn't it?).  I agree wholeheartedly that a better screening method is necessary for younger women.  And when a new & better option becomes available, it would make perfect sense to change the guidelines.  But until then, isn't it irresponsible to tell women aged 40 - 49 to forgo mammos and BSEs, when in fact 1.4% of these women will develop BC while they are in their 40?

Given all of the above, would it not have made more sense for this group of experts to recommend a less drastic change?  What about saying that women should have a base-line mammo at age 40; if there are no problems then perhaps another mammo should be done at age 45, with periodic ultrasounds in between?  Or if the base-line mammo is inconclusive (due to dense breasts), then a one-time screening MRI might be recommended?  This would make the point that screening is still important although annual mammograms might not be necessary or the right approach for everyone.

One last point.  Supporting what Elizabeth said, I live in Canada, where the current guidelines are that women should start having mammos at age 50.  However, younger women regularly get mammos, paid for by government healthcare.  All that is necessary is a requisition from your doctor; no further approvals are required.  My fear for women in the the U.S. is that with these recommendations, over time the insurance industry will move away from funding mammos for women aged 40 - 49.  Having a guideline that is flexible and left up to the doctor and patient, as it is in Canada, is one thing.  Having a guideline that becomes a criteria for approval by insurance companys, as may happen in the U.S., is something else all together.

Beesie...No, it isn't stating just society as a whole.  They are telling the new Dr. what the standard of care should be.  That is why I was refused for a Mammogram when I turned 35 even when I explained my mother cancer when she was young...the GYN told me to wait till I was 40.  I would have been dead had I not done a self breast exam and found the lump.  As it is, I have zero choices in what to do to fight this cancer because of the late diagnosis.

This will sacrifice many women just to save money.  It is still true that the best way to save people is by EARLY DETECTION...which now women will not have the opportunity to have available to them.

As a side note they are doing the very same thing with mens prostate and when to start testing for prostate cancer in men.

If this was an independent panel of experts, then why is there not ONE Oncologist or Breast Specialist on that panel?  Any study can say anything that a person wants it to say by just tweaking the numbers with the statistics to do it.  

Beesie - so good to see you posting!  I can understand the critical thinking and agree with all that there may need to be better testing, but to change the guidelines to no testing until 50 is not the answer.  Once there is better technology then by all means revisit the guidelines.

I am one, of many of us that has no family history and really few if any of the risk factors.  My tumor was non palpable. At 44 years old a routine, annual mammogram (non digital) found mine.  If I had followed these guidelines my tumor would not have been found when it was.  It was quite deep, so by the time it was palpable I am sure it would be a later stage, and my prognosis not as good.   

I would have followed the guidelines you see because I had a false sense of security in my non cancerous family history.

I do think my life and the mammogram picking up my invasive tumor is worth the risk of false positive mammograms that lead to biopsies.  As my oncology nurse said to me today "when we tell women we aren't sure so they need to have a biopsy, no one ever yells at us to make up our minds - they are thankful that we are diligently double checking".

I don't think I am over reacting, or over emotional.  My life is worth it, and so is yours.