Inkwell: Authors and Artists

    
This week, because October is Breast Cancer Awareness month, we
welcome Carole Berlin to Inkwell.vue.

Carole Berlin is a teacher, writer, artist, and breast cancer survivor
who has spent the last 13 years since diagnosis in studying the
available research on breast cancer and sharing what she learns with
other members of AMAZON, the breast cancer listserv she now
co-moderates.  Carole and others in her group often seek additional
clarification from researchers, pathologists, and medical
practitioners.

Carole is not a medical professional. She is a self-educated e-patient
who has come to the conclusion that the time to learn about breast
cancer is before you are diagnosed. Carole lived for 37 years in New
Orleans until Hurricane Katrina drowned her street. She now lives in
Asheville, NC.

I <juliesn> will be serving as the interviewer for this discussion.

Julie Sherman is an educator as well as a cancer survivor. She worked
for twelve years in the AIDS/HIV field as an AIDS educator and health
education and prevention director. She also worked in the women's
health field, directing a breast cancer prevention program in Santa
Clara, CA. She also now lives in Asheville, NC.

Welcome Carole to the WELL and Inkwell.vue.
  

    
So Carole, what SHOULD I know before my next mammogram?
  

    
Thanks for the welcome, Julie. I'm glad to be here.

What I’m going to say may seem unusual to you,but if you were my
sister – and especially if you were between 40 and 50-- I’d tell you to
get a thermogram instead of a mammogram.  

A breast thermogram is a special kind of photograph of the breast that
uses color to show temperature variations in the underlying tissues.  
 It’s totally painless, and it’s much safer than a mammogram because
there’s no radiation involved.   You stand over here, and the camera’s
way over there. 

So you know what I’m talking about, there’s a picture of a breast
thermogram  at 
http://www.dailymail.co.uk/health/
article-412259/Could-heat-scans-replace-mammograms.html

The different colors show different degrees of heat.    As I
understand it, one of the ‘givens’ is that each person’s body has its
own unique heat-patterns.  For this reason,  one’s first two
thermograms are given three months apart; that establishes the
baseline.  At each yearly thermogram thereafter, the computer looks for
changes in the basic, underlying heat pattern.  Where it finds an
unexplained increase in heat, it points that out for the person reading
the  thermogram to put  in his/her report.  

Since heat implies inflammation, and inflammation in the breast CAN
indicate the beginnings of a cancer, that’s the time to get a
mammogram.  Not before.  (And in fact, the only reason to get a
mammogram at that point is because breast surgeons know how to use
them, but they don’t yet know how to use the data from a thermogram.) 

The UPside of thermograms is that they’re painless and much safer than
mammograms because they’re compression- and radiation-free.   The
DOWNside is that insurance doesn’t yet pay for them.   Even so, because
of the rising demand for thermography,  they’re increasingly available
all over the US. 
  

    
Here is a better link for that Thermogram link:

<http://www.dailymail.co.uk/health/
article-412259/Could-heat-scans-replace-mammograms.html>
  

    
So, since insurance does not yet pay for thermograms, most of us will
end up getting mammograms. So suppose I get a mammogram and the doctor
calls and says there's a problem. Now I'm worried and what should I
know and what should I do?
  

    <scribbled>
  

    
Here's the short version:

1. Don't panic.
2. For the time being, do what they tell you, AS LONG AS IT'S NOT
INVASIVE. If they send you for an ultrasound, go.  Why not?  There's no
radiation involved and it doesn't hurt.  Besides, you can learn a lot
during an ultrasound, if you pay attention and ask questions.
3.  If they want you to do anything invasive --however minimally- just
say NO until you've done your own research and chosen the kind of
biopsy you think will serve you best, and leave you with no residual
problems down the road.  

Here's the longer version: 
1. Don't panic.  Mammograms are imperfect, and false positives are
more common than you’d think. Even if you had a palpable lump in the
middle of your breast, the overall odds would still be in your favor,
since about 80% of those lumps turn out to be benign.  And at the VERY
worst, even if that palpable lump were cancerous, it's already been
there from six to ten years, so there’s no need to panic or to rush
into anything. Yet that is one of the biggest mistakes women make.

2. They’ll probably suggest that you come in for an ultrasound. It's a
good idea.  It's useful for them because the ultrasound report will
determine what THEY will want you to do next. It's useful for you
because, if you pay attention during the ultrasound and you ask
questions of the tech while she's using the ultrasound wand and
clicking her mouse on various parts of the screen, you're going to
learn something about what's in your breast. That, in turn, will help
you determine what YOU want to do next.

Note that an ultrasound isn’t “better” than a mammogram; it’s just a
different kind of imaging.  There's no radiation involved; it’s just
high frequency sound waves that go into the breast and then bounced
back to the computer to form onscreen images. If there's any 'bad
news'about ultrasound, it's that, like a mammogram, a lot depends on
the tech who holds the wand and the radiologist who interprets the 
images.

3.  When you go for that ultrasound, ask the technician to position
the screen so that you can see it, and ask questions.  You may not get
answers (techs aren't supposed to explain to patients what they see
onscreen), but it’s worth the attempt. You might get a friendly tech 
who's willing to explain what she sees.  Even if she doesn't, though,
you'll still pick up more than you think.  What you see on that screen
can  help you later.  

If I were at your  ultrasound with you, I’d look onscreen for three
things: sparkly sprinkles (sometimes multicolored) -- flecks that come
and go as
the ultrasound wand moves; round, black ‘holes';  and  blurry-looking,
asymmetrical shapes.  Those flecks are often (not always) the
microcalcifications which in the aggregate are called DCIS (Ductal
Carcinoma in Situ).  (I think DCIS needs a post of its own, since it’s
the most commonly-diagnosed form of breast cancer.)  The 'black holes'
are almost always just harmless, fluid-filled cysts.   And the
blurry-looking, asymmetrical shapes? In my case, as with others on my
listerv, those blurs turned out to be ILC (Infiltrating Lobular
Carcinoma). (This, too, needs a post of its own, because it's so
seldom
seen clearly on mammogram or ultrasound.  Mine showed as a blur on
mammo after mammo, year after year, but they never saw it as
suspicious. It looked like just a blur until they realized it was
cancer that had been growing for quite a while.) 

I wish I could put this in boldface type:  The combination of the
ultrasound report itself (a copy of which you should ask for)  plus
your own observations during the ultrasound will put you at at a
critical crossroads in (what we hope will NOT be) your breast cancer
journey. 

The decisions women make at that juncture, the decision about what
kind of biopsy to get, can actually set the course for the rest of
their lives, but they don't even know it. It's only in hindsight, when
they start looking back, that they realize it was a mistake to rush
for
the kind of biopsy their doctor suggested instead of looking around
for other kinds.  There's nothing wrong with the physician's
suggestion; it's just that what's easy and routine for a physician can
have devastating results for a patient down the road.  Each woman has
to stop and look into her options, to take the time to consider what
will be best for her. 

So here’s the bottom line, straight from the 'retrospectoscopes’ of
several hundred women over the years:  If your observations during the
ultrasound  AND your own intuition AND the ultrasound report all say
that the lump in your breast is very likely cancerous, STOP RIGHT
THERE. Do NOTHING -- ALLOW NO INVASIVE PROCEDURE, however 'minor' it
seems, until you've taken the time to do your own research and decide
which procedure makes the most sense for you, personally. Read about
it, discuss it with your doctor and with other women who've had the
same procedure, and think about it.  Wait for the late returns from
your heart-of-hearts.  THEN decide.

Just know that, as long as that lump remains intact, untampered-with,
you have time to do your own factfinding, discussing, and thinking.
  

    
What kinds of options are there when it comes to breast biopsies?
  

    
Ohboy.    They are legion.  It seems that every year  there’s a newer,
faster, less-invasive way of doing a breast biopsy.    I think that,
instead of  answering  your question myself, I'll start by giving you a
definition to work with, and then offer a number of websites that
cover the various types of biopsies available today.  

With that out of the way, I’ll be able to use the space for something
perhaps more useful, like  suggestions for how to choose amongst the
different  options so that you wind up doing what is best for you, plus
a number of websites that illustrate some of the down sides of those
‘simple little’ needle biopsies that have become increasingly popular, 
plus the best suggestion I ever got.   

* * *

DEFINITION:   A biopsy is a medical procedure during which tissue is
removed from a living body  for the purpose of microscopic examination
and identification.     There are always at least two people involved: 
the one who removes the tissue, and the one who examines i t.   The
one who removes the tissue might be a breast surgeon or a radiologist. 
In some facilities, it might even be radiology technician.  The one
who examines and identifies the tissue sample is the pathologist. 
Remember that person, because I’m going to come back to him/her later
in this post.  

 WEBSITES EXPLAINING TYPES OF BREAST BIOPSIES:

<http://www.imaginis.com/breast-health-biopsy/methods-of-breast-biopsy>

<http://www.medicinenet.com/breast_biopsy/article.htm#1whatis>

< http://www.nlm.nih.gov/medlineplus/ency/article/003920.htm>


WHY DO YOU NEED A BIOPSY, ANYHOW?

Well, you don’t, if you can live with the fact that there might be a
tumor growing in your breast.    That wasn’t meant to be flip.  There
are several women on our listserv who refused any type of surgery and,
so far, they’re doing fine –juicing, doing vitamin C infusions, eating
right for their blood types, staying alkaline, etc.    For them,
keeping a possible  (or even a growing) cancer at bay is almost a
fulltime job.    The funny thing is, it really can be done (though it’s
time-consuming and usually costly).    Some of us who’ve had lumps 
have been able to shrink (and in one case, completely erase) them,  but
it’s a gamble most of us are not willing to take.  

So let’s assume we’d rather know what’s in that lump and just accept
the fact that, at  this time, the only way to know for sure what’s in a
breast lump is to either remove the entire lump or remove some of it
and then have that tissue examined under a microscope by a trained
pathologist.  


DECIDING WHAT KIND OF BIOPSY TO GET:

1.       Talk to several other women who’ve had the same kind of
biopsy you think you might choose.  Ask them what it was like, how long
it took to recover,  if it was more (or less) painful than they
thought it would be, and what they’d choose instead, if they could undo
the choice they made.  

You can find them online – there are a number of listservs that
welcome such questions (you can join ours at
<http://www.amazon-alternatives.org/> ), you can talk to the women at
your local hospital’s cancer support group, and , as I'm coming to see,
you can find them on TheWell..   

2.       When women start talking about what they most regret about
their earliest decisions, the thing you hear most often is  “I wish I’d
asked more questions beforehand, questions like …” 
        a.       Where are you going to cut?
        b.       Is it going to hurt for a long time? 
        c.       Does this kind of biopsy give a lot of false negatives (or
false positives)? 
        d.       How many such biopsies do you do each month? 
        e.       Are you a general surgeon or a breast surgeon? 
        f.       I wish I’d made clear to the others on my listserv that I
didn’t even know what questions to ask.  I was too embarrassed to say I
needed a list of questions to bring with me to the doctor.  

3.       Finally, when you’ve done as much reading as you can bear to
do and gotten as much input from other women as you can get; when
you’ve gotten every single tiny detail about the procedure from the
doctor (I asked my mine to draw directly on my body exactly where he
was planning to cut),  then you’ll know where you balk and where you’re
willing to go ahead because you think it’s in your best interests. 
It’s funny how those decisions seem to make themselves when you finally
have all the information you need.     Just make sure it’s YOUR
decision, not your partner’s or your doctor’s or your best friend’s.   

OKAY, THIS IS A TEST:

Imagine that you have a palpable lump in a C- or D-cup  breast,  a
lump relatively close to the surface of your breast, on, say, the top
or bottom surface, and not near the nipple.  Let’s say your breast
surgeon (and you should see a breast surgeon, as opposed to a general
surgeon) offers you two biopsy choices, based on the size of your
breast and the placement of the lump.  You can….  

·         Be sedated (or even have general anesthesia) and let him
remove the entire lump plus a small margin  (think ‘brown spot on an
apple’).  Recovery time:  give it at least ten days, more like two
weeks.   OR

·         Get just a local anesthetic.  Let him insert a fine needle
through your skin into the lump and draw out some of whatever’s in the
lump –a FineNeedleAspiration, or FNA.  Recovery time:  3 days.  


Which one would YOU choose?   


It’s really not a fair question.  I know most of you will choose the
FNA. 

I hope you don’t mind my telling you that –as good as it sounds­--it’s
not necessarily the best choice you can make.   There’s a growing body
of research suggesting pretty strongly that sticking a needle into
what might be cancerous tumor is a bad idea for many reasons. 


·         For one thing, needle biopsies of any type can seed the
tumor along the needle track.  (See
<http://findarticles.com/p/articles/mi_m0ISW/is_251/ai_n6112675/>, for
example.)

·         Worse yet, they can create a situation in which cancerous
cells wind up in the axillary nodes, particularly the sentinel node.
(Nodes are whole other post.  Lord, I hope I’m not overwhelming you
with information.  It’s just that there’s so much to tell you…)  
What’s bad about that is that it can lead to your being incredibly
overtreated.  (See  <http://breastcancerchoices.org/faqbiopsies.html,
which includes Ralph Moss’s comments.)

·         FNA’s can yield false negatives – the needle can miss the
cancerous part of the lump altogether- so the pathology report comes
back saying ‘benign,’ and you’re sent home with a now-pierced cancer
that can spread quietly, and all the time you think you’re fine.   It
happens.



Whatever kind of biopsy you choose, remember that removing the tissue
is just the first step.  The second step is getting the tissue
analyzed.

Do you remember the second person I mentioned at the beginning?  The
pathologist?  The other half of your biopsy?   Well, the tissue removed
at biopsy is going to get put into paraffin blocks which get sliced to
incredible thinness, and the slices will go to a local pathologist for
examination under a microscope.

Now, I’m sure your local pathologist is a wonderful person, and I’m
sure your surgeon trusts him absolutely.  But I want to tell you that
everything from this moment on will hinge on what the pathology report
says, so it’s imperative that the report reflect reality.     It HAS
to, because the oncologist is the person who’ll work out your treatment
plan, and s/he will base the entire plan, 100% of it, on that path
report.   

Oncologists read path reports the way extremely religious people read
the Bible:  they take it as absolute truth, and any suggestion that it
might be imperfect is taken as kind of heresy.
But pathologists are only human.  They can make mistakes.   Nobody
ever tells you this, but pathology is probably as much an art as it is
a science.  Sometimes it’s easy to spot a cancer cell, but there's a
broad spectrum for "what a cancer cell looks like," and so determining
if this cluster of cells is cancerous is very often a judgment call. 
That's an OPINION.  So here’s the best advice I ever got on this breast
cancer journey:

GET A SECOND-OPINION PATH REPORT.   And get it from a cancer center in
a totally different region of the country.  You want it from a
pathologist who sees hundreds, maybe thousands,  of breast cancer
slides every year, and preferably one from a teaching hospital. 

When I lived in New Orleans,  I had my slides sent to Sloan Kettering,
in NY,  for a second opinion.  When Sloan’s path report differed
widely from my local one,  I had the slides sent to M.D.Anderson, in
Houston for a THIRD opinion.  Then I went  with the areas in which they
overlapped and totally ignored the rest. 

One last note:  Get a second opinion path report even if the first one
comes back saying “It’s benign.”    I know how great that is to hear,
but what if it’s not true?  We’re talking about judgment calls,
opinions, here.   So, no matter what the first path report says, always
have your slides sent to a cancer center in another area of the
country for a second opinion.  And if that one, too, comes back saying
"It's benign," THEN you can break out the champagne.  

 
  

    
Useful stuff.

I had a needle biopsy (which is really a misnomer; it's more like a
hole punch) of what turned out to be benign, and then the next year had
a bad mammogram again, and that time I had surgery to just cut the
fucker out and be done with it. Perhaps I should have just done that in
the first place. I have a wee bit of a divot in my breast -- just
enough, ironically, that some mammogram techs get worried that it's a
'depression' that can itself be a sign of cancer -- but the doctor was
careful and the scar lines up with the aureola and you really can't see
it at all. And I've had no bad mammograms since then. 

(Funny story about that surgery, too. The lump was pretty close to the
surface, and I hate having to recover from anesthesia, and I said,
look, how about doing it as a local? and they hemmed and hawed and said
maybe, talk to the anesthesiologist, he can just sedate you instead of
putting you out. So I talked to him, and he was a dick, and said it
didn't work that way, I'd be either awake or asleep. And I said, fine,
local it is. And he went out to the surgeon and said, it's all yours,
and I had both the doctor and nurse try to talk me out of it, but I was
adamant. And it worked out just fine. When I could feel things I would
say, I'm feeling things, and they'd stick another needle of novocaine
in, but I didn't move and everything was just fine. The one weird thing
is they put up a screen so I couldn't watch what they were doing but
it meant I couldn't see *anything* they were doing, but one of the
scrub nurses tended to stand pushed right up against me, so it was good
to have that contact. And they complimented me afterwards and said I'd
been a real trouper. The other ironic thing is that I had a brown mole
on my other breast -- to the extent that my daughter tried to nurse on
it thinking it was a nipple, and I said, as long as you're over there
with sharp things, you want to take that off? and they did. *That* one
keloided but the scar on my nipple didn't.)
  

    
Can we go back to the first question on thermograms?  I have never
heard of them before.  Are they as reliable and as sensitive as
mammograms when it comes to detecting potentially cancerous masses that
might need to be biopsied?  Is there research that shows the level of
false positives and false negatives in comparison with that of the most
advanced digital mammography?
  

    
Sharon, I'm glad you found the information useful.  

You wrote "and that time I had surgery to just cut the fucker out and
be done with it. Perhaps I should have just done that in
the first place." 

Maybe; maybe not.  You couldn't have known in advance how it might
affect future mammograms.  (That would've been a good question to ask,
had you known to ask it.)   

You also wrote, "a divot in my breast -- just enough, ironically, that
some mammogram techs get worried that it's a 'depression' that can
itself be a sign of cancer" 

'Ironically" is right.  What protects you is your knowledge that it's
just an artifact. What can protect you in future is having all the
medical records pertaining to your breasts in a single file -- I mean
all procedures, mammogram reports, pathology reports, physicians
consulted, etc.  That way you have the exact dates of procedures, since
we tend to forget over time ... and even keloided scars will change as
the years go by.  More about scarring below, under SCARS. 

You also wrote,  "... it worked out just fine. I didn't move."   You
ARE a trooper!  And good for you for sticking to your guns.

I'm for anything that gives a patient comfort and reassurance during
any procedure, so I'm glad you mentioned the comfort you got from the
nurse who stood pushed right up against you during surgery.  I'm going
to add it to my list of "Things to ask for next time I agree to
surgery," because I suspect we're aware of such things even under
general anesthesia.    

SCARS:
Did you know that even keloided scars will soften and fade over time
with twice-daily applications of 100% cocoa butter?  You can get it at
the drugstore. You'll find it in hard sticks there, and in chunks from
the health food store. I melt a little with my hair dryer and slather
it on my scars (and on my face, too, because it soaks in pretty fast). 
 The scars are mostly invisible now.  
  

    
David, you asked some good questions about thermograms. Give me some
time to seek the research papers or articles that you asked about,
since I think that'll give you the most complete answers. 

Until then, here are the answers from the top of my head:

Q:  Are they as reliable and as sensitive as mammograms when it comes
to detecting potentially cancerous masses that might need to be
biopsied?  

I'm not sure the question is answerable.   Mammograms can find
precancerous lesions and even small cancers that aren't yet palpable. 
That's their job. 

The thermogram, on the other hand, is not a cancer-finder; it's a HEAT
finder.  The breasts being on the surface of the body outside the rib
cage, thermograms find it easy to image the heat-patterns of breasts.  

Since heat goes with inflammation, and inflammation both precedes and
accompanies breast cancer, then certain kinds of changes in a breast's
heat pattern have already been shown to accompany cancerous changes.
(If memory serves, the original research was done by finding such a
heat change and then sending the woman for an immediate mammogram.  The
data from both imaging techniques was then coordinated and the
thermogram images were seen to be valid alongside the mammograms.)

As to coordinated studies --thermogram vs. mammogram-- other than the
earliest ones, I'm not sure yet how many of those exist.  I will look. 
Thermography is new enough that they might not exist at all.   I've
seen sketchy salespitch 'studies' saying they're as accurate as
mammograms, but, while I don't toss them into the trash, I don't think
of them as hard evidence, either.  

The thermographer I go to is quick to point out that thermograms don't
try to pick up cancer. They're HEAT-viewers.  The connection is that
cancer is preceded and accompanied by heat/inflammation (one current
theory is that inflammation is one of the steps on the way to cancer). 
Thus, the minute you see an increase in heat, inflammation in the
breast, you are probably looking at the beginnings of cancer. 
To that extent, they can't help BUT be reliable.  All they can
actually show you, though, is heat.  

The technology's been around for the last decade at least.  What
WASN't around was the information that mammograms might be causing the
very disease they're supposed to detect because the breast is so
sensitive to inflammation.

None of this constitutes proof, however, so I wouldn't throw out the
mammogram machines just yet.

FYI,  If you read Sam Epstein, MD (author of "The Safe Shopper's
Bible," among other books), mammograms present us with so many false
positives and false negatives that you could get the impression they're
almost worthless.  I wouldn't go that far, but here's how Epstein sees
it: <http://www.whale.to/a/epstein_h.html>

 For the time being, here are some more mammogram stats for you:
<http://www.vitalgate.com/mammogram-new-york>

I'll keep going for thermograms every year because they are 100%
UNlikely to cause new cancers or to spur the growth of cancer cells
that are already present.  The camera doesn't even come near the
breast, and besides: it's just a camera.  It sends out nothing. It just
makes pictures of heat when it's connected to a computer. 

The younger the woman, the more sensitive her breast cells are to
damage from radiation .  The older the woman, the more likely she is to
have breast cancer cells that aren't doing anything, aren't going
anywhere ... until they get that one-radiation-hit-too-many. THEN they
become malignant, or at least that's the prevailing theory of how
radiation causes cancer to start (too many hits to DNA) and to
proliferate (already-extant cells that had been dormant get hit one
time too many and become  invasive). 

The fact that, more than any other organ, the breast is sensitive to
radiation exposure and environmental toxins applies to men, too, btw. 
(Y'all don't get breast cancer nearly as often as we do, but it isn't
just for women any more.)  

One more thing, Dave:  Multi-hospital autopsy studies looking at the
breast tissue of women over 65 indicate an extremely high percentage of
women with cancer cells in their breasts.  Not breast CANCER, just
breast cancer CELLS sitting there and doing nothing harmful. Few of
those women had ever been diagnosed with breast cancer.  Very few had
died of that disease.  They died of what they call "all-causes."  They
had no other breast cancer cells anywhere in their bodies except in
their breasts (i.e., no metastases).  

That tells us that the presence of breast cancer CELLS in tissue is
not the same as the presence of invasive breast CANCER.  But with
mammograms picking up every stray cluster of cancer cells over, um,
three millimeters, women are scared into thinking they're going to die
of breast cancer.  They're being over-treated because mammograms pick
up so much detail -- detail of things never destined to do anything
except be destroyed by the immune system.  The problem is, of course,
that nobody knows what those cells are going to do.  The other problem
is that --although my group has come across some good ways of shrinking
breast cysts and other abnormalities using nontoxic therapies that
work for many but not for all-- there's no definitive way to change
those cancer cells back to being normal once again.

Q: Is there research that shows the level of false positives and false
negatives in comparison with that of the most
advanced digital mammography?

Probably not, for the same reason:  the thermogram isn't looking for
cancer; it's looking for heat.  A thermogram can't replace a mammogram.
It can be used to avoid mammographic radiation until an abnormality
shows up.  THEN you get a mammogram.

Whew. I don't seem able to write short little posts. 
  

    
Yes, I mentioned to the nurse how much I appreciated it and she said
people teased her about how she snuggled right into patients.

My keloid is actually a lot smaller than it was. I was giving it
vitamin E cream once a day for a while but I haven't bothered. This is
going on ten years ago now.

The other nice thing about no anesthesia is that as soon as I was
done, I was ready to go home and they didn't have to watch me and I
didn't have to arrange for a driver and so on. 

I don't have any of my own files. It's all computerized, though, and I
think they have that stuff together, when the techs actually look at
it.
  

    
That last paragraph of Sharon's that's a whole 'nother subject. I
think it's the case for many of us and when I was doing some eldercare
in my family year before last I found it problematic. 

So if we were going right out to shop for a thermogram how would we
find one?
  

    
> A thermogram can't replace a mammogram.
> It can be used to avoid mammographic radiation until an abnormality
> shows up. 

Right, but that's why I asked the first question.  I would love to
know that it is possible to "avoid mammographic radiation until an
abnormality shows up", but that is only the case if thermograms do not
miss all/most/too many cancers.

If you can never have cancer without an abnormal thermogram, then it
should obviously be used as a first line of testing.  If on the other
hand most people who get cancer have normal thermograms, then it's
useless.  I assume the truth is somewhere in the middle, in which case
it becomes, as you suggest, another choice one can make.

Sometimes having too many choices is the problem....
  

    
David:

You're right; the truth does lie somewhere near the middle.

Sometimes it depends on who you ask.  

Ask the guys whose spend their days improving thermography's accuracy,
and you'll hear that they're as good as mammograms for everything
except microcalcifications, but they're working on that.  

Otoh, the guys whose days are spent improving digital mammography will
be just as quick to tell you that it's still the gold standard, that
thermograms are too new (well, they're about fifty years old, but the
technology got left behind early on.  Now it's back in full force, but
it's so different now that it is 'new' <10 years or so>).

And if you ask me, I'll tell you two things:  
(1) Mammograms are known to cause breast cancers over time, and any
technology that creates the very thing it tries to catch early is, I
think, not the best thing to use on a yearly basis.  

(2) I know this'll sound strange, especially coming from a woman
diagnosed with breast cancer herself, but I'm not sure it matters if
thermograms can pick up the tiniest beginnings of a possible cancer. 
I've learned over the years that "possible" may be gone by next year. 
Even small tumors picked up by mammograms are often gone several years
down the road.

Just for the record, it was only in retrospect that I learned my
cancer had been visible as a vague blur on five consecutive mammograms,
but the radiologist just ... missed it.   That's partly because I had
denser breasts at the time, and partly because it was one of those
'less-often-seen' cancers that is known to show up poorly on a
mammogram.  Lobular cancers account for anywhere from 17-25% of ALL
breast cancers (and there are many kinds), so the guys who read the
mammograms see lobular so seldom and DCIS so often that they honestly
don't recognize infiltrating lobulars "look" as a cancer.  Shoot; even
the ultrasound tech couldn't find my lump; I actually asked her for the
ultrasound wand and made it come up onscreen myself.  

I mention this so you know that it's not just a shell game with
numbers:  Mammograms are good, but even though they might be excellent
at picking up the basically precancerous lesions of DCIS, they're not
so good at picking up the other kinds of breast cancer women develop. 
And even if the mammo gets it, the radiologist can miss it.  

What mammos DO show exceedingly well is DCIS, ductal carcinoma in
situ, which used to be considered just a precancerous condition and is
now included as a cancer (since it's usually multifocal, and they can't
tell where it's going to go malignant, if it ever does.) 

My listserv sees the fallout from overkill -- women who've panicked at
the thought of precancerous 'sprinkles' in one breast and rushed into
mastectomy for fear of dying of this disease.  It's only afterwards,
when they see others do nothing about DCIS, leave it alone for at least
six months, and then get another mammo to see if there've been any
changes.  When they realize that they weren't exactly dying, that the
chances were good that those DCIS sprinkles never would have turned
into anything at all -- that's when the regrets start setting in.  When
they can't lift their new grandbaby.  When they can't sleep on that
side or on their stomachs or wherever they were used to sleeping. When
the husband or lover turns away from them in bed. 
* * * 
=======================

Below are the links and papers I said I'd send.  
Hope they're useful to you.  A few say that thermo's beat mammo's by a
mile.  A few say thermo's have a lot to do to catch up,  There are
many more out there, too. 

For now, take two and call me in the morning. 

================================================

Media articles:

<http://www.wddty.com/a-safer-way-to-screen-for-breast-cancer.html>

Just a snippet:
Consider thermography, which measures skin temperature. Cancer ‘heats
up’ the temperature of skin adjacent to a tumour, largely because of
the increased blood flow and metabolism (Can Med Assoc J, 1963; 88:
68-70). 

Thermography may pick up cancers as much as eight to 10 years earlier
than mammography; in one study, it picked up half of all early cancers
while mammography identified only up to 10 per cent (Thomassin L et
al., Proceedings of the Third International Congress of Thermology, New
York: Plenum Press, 1984: 575-9). The accuracy of the test is similar
to or better than that of self-exams and mammography (for thermography,
contact The Chiron Clinic, 121 Harley Street, London W1G 6AX (tel: 020
7224 4622; www.thechironclinic.co.uk).

=======================

<http://healthfreedoms.org/2009/11/19/mammogate-and-thermography/>

“Mammogate” And Thermography
Submitted by Drew Kaplan on November 19, 2009 – 11:17 am 
 With the continuing controversy and debate surrounding “Mammogate”
here is an interesting alternative that can spot breast cancer years
before mammograms and is much safer. Thermography can detect disease
and injury by revealing the thermal abnormalities present in the body.
Can assess pain and pathology anywhere on the body and is very helpful
in monitoring therapy. No radiation – 100% safe for everyone
Non-invasive, no injections. Offers privacy – no bodily contact.
Thermography is cost effective, risk-free and provides instant images
through digital technology. A device developed for Cold War spying
might help women detect breast cancer four to six years before it
appears on a mammogram. Shelley Gilliland, a certified clinical
thermographer for Radiant Health Imaging, uses digital infrared thermal
imaging to detect and monitor a number of diseases and physical
injuries, including breast cancer.
“It works by showing the thermal abnormalities present in the body,”
Gilliland said. “In a single click of my camera, I take over 80,000
temperature readings of the body.
“While not all abnormalities are cancer, all cancers start as an
abnormality.”
Medical digital infrared thermal imaging is a non-invasive diagnostic
tool that pictures and analyzes changes in the skin’s surface
temperature without the use of radiation. While X-rays, ultrasound, and
mammography show the structure of the body, thermal imaging shows the
physiological activity, such as active inflammation and increased blood
supply found in many illnesses.
Gilliland said more than 50 percent of her business is from women
seeking an earlier form of detection than a mammogram can offer.
“It is radiation free and there is no contact with the body,” she
added. “There is no squashing or compression.”
A scanning device – think an advanced digital camera – is used to
convert infrared imaging from the skin surface into electrical impulses
that are shown in color on a monitor.
The visual image maps the body temperature and is referred to as a
thermogram. The spectrum of colors indicates an increase or decrease in
the amount of heat being emitted from the body surface.
Gilliland said since there is a high degree of thermal symmetry in the
normal body, subtle abnormal temperature differences are easily
identified, and because infrared thermal imaging is highly sensitive to
variations in the vascular, muscular, neural, and skeletal systems, it
can contribute invaluable information to a diagnosis made by a
physician.
The images are then checked by a group of more than 30 doctors for
abnormal vascular activity.
“Initially, we take a baseline image. After 90 days, a second image is
taken and compared to the first,” Gilliland said. “The doctors look
for changes over time.”
Like fingerprints, Gilliland said without a pathological change or
injury, the images should stay the same.
In order for a mammogram to detect a breast cancer tumor, Gilliland
said the tumor is between six and eight years old and has over a
billion cells. However, a thermogram can detect the heat given off by
cancer cells multiplying at two years, or 256 cells, before it is even
a lump.
“This can give a woman four to six years to get healthier with life
style changes and monitor the area,” she said. “In a nutshell it is
earlier detection and screening or well care versus sick care.”
Plus a thermogram can be used to help doctors monitor how well
radiation treatment is working on a specific tumor, which could mean
the difference between a partial lumpectomy and a mastectomy.
Gilliland became interested in the technology after meeting Radiant
Health Imaging founder Pam Ryerse. Gilliland has been a nurse for more
than 30 years and said overtime she has developed a more holistic and
preventative approach, and thermography has become a mission for her.
“I have four daughters; that’s eight breasts that I need to worry
about,” she said. “And young women are kind of falling through the
cracks.”
While insurance doesn’t cover thermography, Gilliland is quick to
point out that mammograms for women younger than 40 years of age are
not generally covered either.
“It’s about peace of mind. Knowing that nothing is growing, what is
that worth?” she said.
<http://www.southwestiowanews.com/articles/2009/11/15/council_bluffs/news/busin
ess/doc4aff50de55490969415474.txt>



SCIENTIFIC ARTICLES: (This is where the info is a little sparse. cb)

<http://www.ncbi.nlm.nih.gov/pubmed/18002704>

IEEE Eng Med Biol Soc. 2007;2007:3312-4.
Infrared imager requirements for breast cancer detection.
González FJ.
Universidad Autónoma de San Luis Potosi, San Luis Potosi, Mexico.
javier@cactus.iico.uaslp.mx

Abstract
Infrared imaging was introduced into medicine in the late 1950s, early
studies suggested there were applications of the technology in areas
as diverse as detection of breast cancer and malfunctions of the
nervous system, however the early instrumentation was not sensitive
enough to detect the subtle changes in temperature needed to accurately
detect and monitor disease. In recent years the sensitivity of
infrared instruments has greatly improved. In this paper the bioheat
transfer equation is solved for a simplified model of a female breast
and a cancerous tumor in order to quantify the minimum size of a tumor
or the maximum depth of a certain sized tumor that a modern
state-of-the-art imager can detect. Finite Element simulations showed
that current state-of-the-art imagers are capable of detecting 3 cm
tumors located deeper than 7 cm from the skin surface and tumors
smaller than 0.5 cm can be detected if they are close to the surface of
the skin.
PMID: 18002704 [Pub


========

<http://www.ncbi.nlm.nih.gov/pubmed/18809055>

Am J Surg. 2008 Oct;196(4):523-6.
Effectiveness of a noninvasive digital infrared thermal imaging system
in the detection of breast cancer.
Arora N, Martins D, Ruggerio D, Tousimis E, Swistel AJ, Osborne MP,
Simmons RM.
Department of Surgery, New York Presbyterian Hospital-Cornell, New
York, NY, USA.

Abstract
BACKGROUND: Digital infrared thermal imaging (DITI) has resurfaced in
this era of modernized computer technology. Its role in the detection
of breast cancer is evaluated.
METHODS: In this prospective clinical trial, 92 patients for whom a
breast biopsy was recommended based on prior mammogram or ultrasound
underwent DITI. Three scores were generated: an overall risk score in
the screening mode, a clinical score based on patient information, and
a third assessment by artificial neural network.
RESULTS: Sixty of 94 biopsies were malignant and 34 were benign. DITI
identified 58 of 60 malignancies, with 97% sensitivity, 44%
specificity, and 82% negative predictive value depending on the mode
used. Compared to an overall risk score of 0, a score of 3 or greater
was significantly more likely to be associated with malignancy (30% vs
90%, P < .03).
CONCLUSION: DITI is a valuable adjunct to mammography and ultrasound,
especially in women with dense breast parenchyma.

==================================

<http://www.ncbi.nlm.nih.gov/pubmed/20332715>
Pol Arch Med Wewn. 2010 Mar;120(3):89-94.
The benefits and harms of screening for cancer with a focus on breast
screening.
Brodersen J, Jørgensen KJ, Gøtzsche PC.
Department and Research Unit of General Practice, Institute of Public
Health, University of Copenhagen, Copenhagen, Denmark.
john.brodersen@sund.ku.dk

Abstract
The balance between benefits and harms is delicate for cancer
screening programs. By attending screening with mammography some women
will avoid dying from breast cancer or receive less aggressive
treatment. But many more women will be overdiagnosed, receive needless
treatment, have a false-positive result, or live more years as a
patient with breast cancer. Systematic reviews of the randomized trials
have shown that for every 2000 women invited for mammography screening
throughout 10 years, only 1 will have her life prolonged. In addition,
10 healthy women will be overdiagnosed with breast cancer and will be
treated unnecessarily. Furthermore, more than 200 women will experience
substantial psychosocial distress for months because of false-positive
findings. Regular breast self-examination does not reduce breast
cancer mortality, but doubles the number of biopsies, and it therefore
cannot be recommended. The effects of routine clinical breast
examination are unknown, but considering the results of the breast
self-examination trials, it is likely that it is harmful. The effects
of screening for breast cancer with thermography, ultrasound or
magnetic resonance imaging are unknown. It is not clear whether
screening with mammography does more good than harm. Women invited to
screening should be informed according to the best available evidence,
data should be reported in absolute numbers, and benefits and harms
should be reported using the same denominator so that they can be
readily compared.

J Med Eng Technol. 2009;33(4):274-80.
Detecting early breast tumour by finite element thermal analysis.
Lin QY, Yang HQ, Xie SS, Wang YH, Ye Z, Chen SQ.

<http://www.ncbi.nlm.nih.gov/pubmed/19384702>
Key Laboratory of OptoElectronic Science and Technology for Medicine
of Ministry of Education, Institute of Laser and OptoElectronics
Technology, Fujian Normal University, Fuzhou, PR China.

Abstract
Thermography has been proved to be an effective technique for
indicating breast disease abnormalities or risks. However, the
abnormalities might not express clearly due to various factors, such as
when a small tumour is located in a deep region, or environmental
influences that make breast disease difficult to find. This study aims
to solve these problems for early detection of breast tumour. A
three-dimensional breast model is presented to investigate the
relationship between an embedded tumour and the surface temperature
distribution. Then a subtraction technique is used to enhance the
thermal signature of breast tumour. It was showed that the surface
thermal characteristics of a small tumour even in a deep region could
be found easily by this method. Furthermore, it was also found that the
surface thermal characteristics of tumour obscured due to
environmental cooling effect can be clearly displayed. The results are
very useful for analysing breast thermograms.
PMID: 19384702 [PubMed - indexed for MEDLINE]
=================

<http://www.ncbi.nlm.nih.gov/pubmed/19223370>
Integr Cancer Ther. 2009 Mar;8(1):9-16.
A comparative review of thermography as a breast cancer screening
technique.
Kennedy DA, Lee T, Seely D.
Department of Research and Clinical Epidemiology, The Canadian College
of Naturopathic Medicine, Toronto, Ontario, Canada.

Abstract
Breast cancer is the most frequently diagnosed cancer of women in
North America. Despite advances in treatment that have reduced
mortality, breast cancer remains the second leading cause of cancer
induced death. Several well established tools are used to screen for
breast cancer including clinical breast exams, mammograms, and
ultrasound. Thermography was first introduced as a screening tool in
1956 and was initially well accepted. However, after a 1977 study found
thermography to lag behind other screening tools, the medical
community lost interest in this diagnostic approach. This review
discusses each screening tool with a focus brought to thermography. No
single tool provides excellent predictability; however, a combination
that incorporates thermography may boost both sensitivity and
specificity. In light of technological advances and maturation of the
thermographic industry, additional research is required to confirm the
potential of this technology to provide an effective non-invasive, low
risk adjunctive tool for the early detection of breast cancer.
PMID: 19223370 [PubMed - indexed for MEDLINE]
==========
<http://www.ncbi.nlm.nih.gov/pubmed/20198744>
IEEE Eng Med Biol Soc. 2009;2009:5360-3.
Improved infrared thermography based image construction for biomedical
applications using Markov Chain Monte Carlo method.
Umadevi V, Suresh S, Raghavan SV.
Network Systems Laboratory, Department of Computer Science and
Engineering, IIT Madras, Chennai, India. umadevi@cs.iitm.ernet.in

Abstract
Breast thermography is one of the scanning techniques used for breast
cancer detection. Looking at breast thermal image it is difficult to
interpret parameters or tumor such as depth, size and location which
are useful for diagnosis and treatment of breast cancer. In our
previous work (ITBIC) we proposed a framework for estimation of tumor
size using clever algorithms and the radiative heat transfer model. In
this paper, we expand it to incorporate the more realistic Pennes
bio-heat transfer model and Markov Chain Monte Carlo (MCMC) method, and
analyze it's performance in terms of computational speed, accuracy,
robustness against noisy inputs, ability to make use of prior
information and ability to estimate multiple parameters simultaneously.
We discuss the influence of various parameters used in its
implementation. We apply this method on clinical data and extract
reliable results for the first time using breast thermography.
==============
  

    
Kathy,


(I just blew away the whole post I wrote to you.   This is the
do-over.) 


Tell me more about this:
"That last paragraph of Sharon's that's a whole 'nother subject. I
think it's the case for many of us and when I was doing some eldercare
in my family year before last I found it problematic." 

If you're talking about differences between what the patient wants and
what the doctor wants, and walking the line between them, it's as
applicable to breast cancer as any other topic.  I'd like to hear what
the problem was , what you wanted, what the patient wanted, what the
doc or nurse wanted, and how the problem was resolved. 

You wrote,

"So if we were going right out to shop for a thermogram how would we
find one?"

Go to your favorite search engine and type in "breast thermogram" with
the quotes, followed by a space, followed by your city, a comma, and
the abbreviation for your state.  Then hit enter.

If you live in a tiny town, use the name of the nearest large city in
your area.  

Also, here in Asheville, Doc Biddle (one of the thermographers) has a
truck that takes the imaging hardware/software to the rural areas
surrounding the city.   If that's happening here, it might be happening
in your area too, so call and find out if the thermographer whose
office is far from you  might have a traveling thermography 'office.'

Hope you find one very near your home. It's so easy to DO and to READ
that you'll wonder why any woman who can afford a thermogram would
choose a mammogram instead.
 
  

    
David, one more thing (Boy, have you got your homework cut out for
you!)

You wrote:
"If you can never have cancer without an abnormal thermogram, then it
should obviously be used as a first line of testing."

We know that there's no cancer without heat; that 's the rationale for
using the infra-red camera in the first place.  

But if you have exceptionally large breasts, say a DDD cup, I don't
know if it would work as well for you as it would for for a woman with
a B cup. 

(I know it works for women who wear a D cup, because I'm one of them
and they never said my breasts were too large for a valid thermogram
reading.)  
  

    
Hi Carole.  This is fascinating.  When I got my bad mammogram some
years back, the new exciting alternate way to see breast cancer was an
MRI -- but in the case of DCIS, anyway, it was very hard to actually
see what was happening in the magnetic images. There was a lot of
squinting and guessing about the extent of the involvement.  

The thermography examples you linked to are much more vivid and easy
to understand!  

I was wondering about deeper tumors... do they still cause surface
heat?   Also, are the example images large tumors, tiny ones, or
disorganized DCIS cells muttering and maybe plotting?
  

    
Hi Carol, sadly though I live near the "small town" of Boston, MA
nothing relevant seems to come up. (I had already done a similar
search.)

I'm going to look at your other q in a bit, need to scoot out of here
now. But it wasn't about wanting something diff. than the MD it was
about the difficulty these days of collecting medical records all in
one place / getting MD's to talk to one another. 

Meanwhile, I haven't been able to really listen right not but Talk of
the Nation, in my market was airing as I was typing: 

"Sorting through the Mammogram Confusion" interesting: 



 
  

    
Hi, Gail,

You wrote, 

“The thermography examples you linked to are much more vivid and easy
to understand!”  

Great.   I’m glad you see the advantage to the enduser – the patient! 

BTW, if you liked that, you might like the pix at the following
website even better, because this site below offers some explanatory
notes, which are always helpful.

Also, the site’s got pix not just of the breast but of the lower back,
someone’s hands, and various other bodyparts as well. Thus, it offers
a graphic ‘walkhrought” that shows off thermography’s versatility.
        
         <http://www.thermogramcenter.com/Images.htm>

You also wrote,
“I was wondering about deeper tumors... do they still cause surface
heat?”

I hesitate to say yes because I think only a thermographer would be
qualified to answer so specific a question.  I wouldn’t want to
misinform.

HOWEVER, if you skim through the thermography info I posted to David
earlier today, you’d probably conclude as I did that deep tumors have
to show in SOME way on the surface-heat of the breast.

The best person to answer your questions is the person who does the
thermogram.  If there’s a thermo facility in your area, why not phone
and ask them?  

And if you did that, you could find out how much they charge for the
first thermogram and the subsequent ones. (Here it’s $150 for the first
one, and $100 for each one thereafter.)  It might also be useful to
ask how many thermograms they use for a baseline (Here it’s 2), how
much time they want elapsed between Baseline#1 and Baseline#2 (some
places use only ten minutes; mine wanted three months, others want
six). Then you’d be all set to think about it …and schedule your first
thermogram.  

“Also, are the example images large tumors, tiny ones, or disorganized
DCIS cells muttering and maybe plotting?”

I’m Soooo not an expert in thermograms, Gail.  The only thing I’m
certain I know about those pix is that there is no way a thermogram can
distinguish DCIS from any other form of cancer.  All it can ever see
is HEAT.  

Except that… well, y’know what?  That one’s colors look enough like
the one on my own thermograms that I’ll give it a shot, as long as you
promise not to take what I say as gospel, all right?
 
On mine, blueblack is the coolest, blue is slightly warmer than
blueblack, and green is neither hot nor cold; it’s just normal. Red =
hottest.  Red-orange a little less hot.  Yellow-orange, least hot but
still warmer than green normal. 

                ** * 
So, y’all, what can we conclude from all this? 

For me, the bottom line is that the more radiation and / or
radioactive tracer an imaging test uses, the more dangerous it is 
(cumulatively, over time) and the more likely it is to lead to
overtreatment -------but  the clearer, sharper, and more definitive the
images will be.

To my knowledge, the only technology in use today that’s  capable of
showing actual cancer cell activity (I.e., mitochondrial division in
real time) is the PET scan plus radioactive tracer, but even that
leaves much to be desired, and the images are in black and white.
 
The guy who  took that one step further, putting  PET technology
together with cardiac imagery and came up with what amounts to a
perfectly-clear  PET scan in colors as vivid as a thermogram’s  is
Richard Fleming, a cardiologist-turned-breast-imagery expert in Omaha,
Nebraska.  He can actually count the cancer cells based on their
mitochondrial activity.  The scan was amazing,  and the images set my
mind to rest for several years (since according to Fleming what his
scan picks up won’t be visible to a mammogram for 3-5 years). 
Unfortunately, he charged $3,000 back then, and insurance didn’t pay
for it.  Now, he’s so involved in research that I don’t see any of his
images online in a quick search.  

Anybody have time to hunt him up?  Richard Fleming, MD, Omaha, NB,
cardiologist who does fabulous breast imaging using a radiotracer
called SESTAMIBI.  
 
  

    
Kathy,

I cannot believe that a city the size of Boston doesn't have a single
thermography facility, but I couldn't find one either.

I did find this one, though. 
<http://www.examiner.com/wellness-in-boston/local-nurse-supports-breast-health>

How far are you from Byfield, Mass?

* * *
About this:
"it wasn't about wanting something diff. than the MD it was
about the difficulty these days of collecting medical records all in
one place / getting MD's to talk to one another. "

Oh, ARGH!  I HATE that!  And I'm doing it for myself, not for someone
else, which then gets into that whole HIPA thing. 

FYI, most of the docs here in Asheville have what amounts to a
paperless office.  They've got a website you can use to make
appointments, ask the doc a question u forgot to ask, etc.  

You set up an account and all your lab results are both stored on
their server and emailed to you. Then you can email them to any other
doc you think will need yr lab results.  It definitely makes things
easier.  
  

    
Carole, when I used to work in the area of women's health, we talked
in terms of "breast cancer prevention" but what was mainly meant by
this was getting women to get mammograms. It always felt a little odd
to me since mammograms do not prevent breast cancer in any way. What
kinds of actions do you think of when you think of the term "breast
cancer prevention?"
  

    
It is interesting that the current prevailing wisdom for women
continues to be "get tested as often as possible" (witness the backlash
against the suggestion that it might NOT always be the wisest course
and that women should discuss it with their doctors) while for men, the
prevailing wisdom about prostate cancer is moving very rapidly in the
direction of "don't test" without anything like the same sort of
backlash.

I wonder why that is.
  

    
The difference in mortality and morbidity, for starters.