Inkwell: Authors and Artists
Julie Sherman (julieswn) Mon 11 Oct 10 19:04
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.
Julie Sherman (julieswn) Mon 11 Oct 10 19:07
So Carole, what SHOULD I know before my next mammogram?
Carole Berlin (caroleberlin) Mon 11 Oct 10 20:33
Thanks for the welcome, Julie. I'm glad to be here. What Im going to say may seem unusual to you,but if you were my sister and especially if you were between 40 and 50-- Id 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. Its totally painless, and its much safer than a mammogram because theres no radiation involved. You stand over here, and the cameras way over there. So you know what Im talking about, theres 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 persons body has its own unique heat-patterns. For this reason, ones 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, thats 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 dont yet know how to use the data from a thermogram.) The UPside of thermograms is that theyre painless and much safer than mammograms because theyre compression- and radiation-free. The DOWNside is that insurance doesnt yet pay for them. Even so, because of the rising demand for thermography, theyre increasingly available all over the US.
Julie Sherman (julieswn) Mon 11 Oct 10 20:36
Here is a better link for that Thermogram link: <http://www.dailymail.co.uk/health/ article-412259/Could-heat-scans-replace-mammograms.html>
Julie Sherman (julieswn) Mon 11 Oct 10 20:40
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?
Carole Berlin (caroleberlin) Tue 12 Oct 10 00:19
Carole Berlin (caroleberlin) Tue 12 Oct 10 19:06
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 youd 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 theres no need to panic or to rush into anything. Yet that is one of the biggest mistakes women make. 2. Theyll 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 isnt better than a mammogram; its just a different kind of imaging. There's no radiation involved; its 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 its 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, Id 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 its 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 heres 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.
Julie Sherman (julieswn) Tue 12 Oct 10 19:43
What kinds of options are there when it comes to breast biopsies?
Carole Berlin (caroleberlin) Wed 13 Oct 10 04:48
Ohboy. They are legion. It seems that every year theres 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, Ill 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 Im 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 dont, if you can live with the fact that there might be a tumor growing in your breast. That wasnt meant to be flip. There are several women on our listserv who refused any type of surgery and, so far, theyre 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 its time-consuming and usually costly). Some of us whove had lumps have been able to shrink (and in one case, completely erase) them, but its a gamble most of us are not willing to take. So lets assume wed rather know whats in that lump and just accept the fact that, at this time, the only way to know for sure whats 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 whove 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 theyd 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 hospitals 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 Id 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 Id made clear to the others on my listserv that I didnt 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 youve done as much reading as you can bear to do and gotten as much input from other women as you can get; when youve 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 youll know where you balk and where youre willing to go ahead because you think its in your best interests. Its funny how those decisions seem to make themselves when you finally have all the information you need. Just make sure its YOUR decision, not your partners or your doctors or your best friends. 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. Lets 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 whatevers in the lump a FineNeedleAspiration, or FNA. Recovery time: 3 days. Which one would YOU choose? Its really not a fair question. I know most of you will choose the FNA. I hope you dont mind my telling you that as good as it sounds--its not necessarily the best choice you can make. Theres 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 Im not overwhelming you with information. Its just that theres so much to tell you ) Whats bad about that is that it can lead to your being incredibly overtreated. (See <http://breastcancerchoices.org/faqbiopsies.html, which includes Ralph Mosss comments.) · FNAs can yield false negatives the needle can miss the cancerous part of the lump altogether- so the pathology report comes back saying benign, and youre sent home with a now-pierced cancer that can spread quietly, and all the time you think youre 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, Im sure your local pathologist is a wonderful person, and Im 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 its imperative that the report reflect reality. It HAS to, because the oncologist is the person wholl 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 its 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 heres 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 Sloans 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 Its benign. I know how great that is to hear, but what if its not true? Were 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.
Sharon Lynne Fisher (slf) Wed 13 Oct 10 05:29
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.)
David Albert (aslan) Wed 13 Oct 10 08:49
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?
Carole Berlin (caroleberlin) Wed 13 Oct 10 14:30
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.
Carole Berlin (caroleberlin) Wed 13 Oct 10 18:15
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.
Sharon Lynne Fisher (slf) Wed 13 Oct 10 19:36
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.
Kathy L. Dalton (kd) Wed 13 Oct 10 22:13
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?
David Albert (aslan) Thu 14 Oct 10 06:36
> 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....
Carole Berlin (caroleberlin) Thu 14 Oct 10 10:18
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 skins 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; thats eight breasts that I need to worry about, she said. And young women are kind of falling through the cracks. While insurance doesnt cover thermography, Gilliland is quick to point out that mammograms for women younger than 40 years of age are not generally covered either. Its 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. firstname.lastname@example.org 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. email@example.com 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. firstname.lastname@example.org 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. ==============
Carole Berlin (caroleberlin) Thu 14 Oct 10 10:28
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.
Carole Berlin (caroleberlin) Thu 14 Oct 10 10:38
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.)
It's all about the margins (gail) Thu 14 Oct 10 11:28
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?
Kathy L. Dalton (kd) Thu 14 Oct 10 12:09
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:
Carole Berlin (caroleberlin) Thu 14 Oct 10 19:09
Hi, Gail, You wrote, The thermography examples you linked to are much more vivid and easy to understand! Great. Im 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 sites got pix not just of the breast but of the lower back, someones hands, and various other bodyparts as well. Thus, it offers a graphic walkhrought that shows off thermographys 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 wouldnt want to misinform. HOWEVER, if you skim through the thermography info I posted to David earlier today, youd 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 theres 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 its $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 its 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 youd 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? Im Soooo not an expert in thermograms, Gail. The only thing Im 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, yknow what? That ones colors look enough like the one on my own thermograms that Ill 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; its just normal. Red = hottest. Red-orange a little less hot. Yellow-orange, least hot but still warmer than green normal. ** * So, yall, 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 thats 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 thermograms 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 wont be visible to a mammogram for 3-5 years). Unfortunately, he charged $3,000 back then, and insurance didnt pay for it. Now, hes so involved in research that I dont 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.
Carole Berlin (caroleberlin) Thu 14 Oct 10 20:21
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.
Julie Sherman (julieswn) Thu 14 Oct 10 20:53
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?"
David Albert (aslan) Fri 15 Oct 10 02:18
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.
Travis Bickle has left the building. (divinea) Fri 15 Oct 10 02:35
The difference in mortality and morbidity, for starters.
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