Wednesday, July 22, 2009

Breast Cancer, the truth about mammograms

Katherine Langley
Copyrighted 2/3/2009

Every two-and-a-half minutes a woman is diagnosed with breast cancer. Late in 2008, I became one of them. In the near future, I will have my left breast tissue plus nipple and possibly, later, areola, removed by what is now called “simple” mastectomy. The plastic surgeon will begin reconstruction immediately, followed by many office visits over a year’s time to complete. It appears there is no lymph node involvement and I do not expect to need radiation or chemotherapy. I thought I knew something about breast cancer. I could not have been more wrong, because what we most need to know is not released through the mainstream media, only through medical journal articles. Breast cancer articles in popular media tell us little. It appears to me now that cancer organizations release only what they want us to know and when they want us to know it. In this way, they also control what questions we ask and what we ask for. I will share with you what I have learned from my experience and research. My story is long, but will be worth your time to read it.

In February 2008 a radiologist saw some calcifications on my annual mammogram and I was called back for an ultrasound. I was told the edges looked flat and smooth (good), but that I should return in six months. I wasn’t particularly worried. I knew other women who had had breast calcifications and knew they could happen for a number of reasons, such as fibro cysts settling there. Often they were observed for years and never amounted to anything. I had just seen my gynecologist who ordered the mammogram, so I ‘phoned his office. His nurse ran interference and spoke to something, it turned out that she didn’t know enough about, and dismissed it: “Oh, calcifications can mean an-y-thing, such as…” (she named a few). “I’m sure it’s n-o-o-thing!” she chortled. Great! I hung up happy, did a (too) quick search on “breast calcifications” and found nothing to worry me. I made a note to schedule another sonogram in August and forgot about it. You have to have a growth to have a breast concern, right?

In August I returned for another sonogram. A few days later I was called back for another mammogram as well. The radiation technologist said she was “just a perfectionist” and that she convinced the radiologist they should do that, too.
I went back for it, again not worried. After all, I was 57 and had never had a problem. Soon they called me again, wanting “better, close-up pictures.” The tech looked concerned, but would only tell me that my calcifications had “changed dramatically.” So, what? I thought. They were still just calcifications, weren’t they—no big deal, right? I had heard that a radiologist came rushing from their office while you were at the facility if there was a real concern. Conveniently, radiologists at this hospital’s imaging center were always “at another location.”
I have since learned that one of them must always be there, but in nine years of using that facility I never saw or spoke with one of them. Your life is turned over to a nameless, faceless doctor whom you haven’t chosen and don’t know. Then the usual protocol is that your gynecologist follows and does not question the radiologist’s recommendations. Your report is just dropped or scanned into your file. S/he doesn’t suggest a biopsy or anything else before the radiologist does, even though in my case it should have been done. I was confused by a convoluted, CYA form-letter/”layperson’s report that referred to a visit prior to the latest

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callback, so I did not understand there was a problem. It referred me back to my doctor, the one whose nurse thought she knew something about mammograms. My gynecologist’s office never contacted me. Imagine my shock when my primary care doctor’s office called to refer me to a surgeon for a biopsy! (They were communicating with everybody except the patient—a big sticking point of many to come. Now I go medical records after any diagnostic test and request a copy of the same report they send to my doctor.)

The medical assistant who called didn’t know anything, didn’t seem to care, and my doctor wasn’t available. She just called to send me from here to there like a slip of paper. “I don’t know, it just says here…” she said. I was irritated, but still worried only a little. I have known women of all ages who had precautionary, but benign, breast biopsies. I ‘phoned the imaging tech I had seen at the facility. She assured me that “19 times out of 20” a biopsy indicates nothing.
No big deal.

A core needle biopsy requires first injecting a numbing nova- or other “caine” medicine, which is the most uncomfortable part depending on where it goes. It hurt some, mostly it burned, but the numbing effect quickly followed. That and the removal of fluid and small shreds of tissue from two spots were guided by the surgeon while viewing the mammogram. As she finished and left the room (she never even introduced herself to me), she said, “I think it’s nothing, just something you’re inclined to do.” In a preliminary visit to her office, I had to see the nurse practitioner for calcifications. She gave me a pre-printed prescription for Valium, but told me I had to wait 5 weeks for a biopsy. (I have since learned that it should be done within 1-2 weeks.) The doctor, who was out, saw only patients with lumps. (I felt as if I were on a conveyor belt!) The 20-something NP referred to it as a “pre-cancerous” condition and said (erroneously, it turned out) the worst-case scenario would mean a golf ball-size lumpectomy and “some” radiation. I didn’t understand: There was no lump! I figured maybe they were just a few free-floating cancer cells. I had more questions, but the NP didn’t want to answer them. She flipped her long blonde hair over her shoulder (when did they get so unprofessional looking?) and said, “Don’t worry! Let’s just take this in little, bitty baby steps.” (The next time I saw her it would be GIANT leap.) Pointing to the mammogram on the light box, she added, “The calcifications haven’t formed
a worrisome pattern, so it’s probably no-o-thing!” She repeated the “19 times out of 20” scenario. (It has become clear to me that we must get nurses out of the practice of medicine. I can no longer tolerate dealing with them in the role of a doctor.) Keep reading and you will understand.

I returned to the surgeon’s office a week after the biopsy braced for the worst case-- a lumpectomy--but fully expecting to be in the “19 in 20” majority. After all, now 58, this was my first sign of trouble. And No Lump! The doctor was delayed coming to the examining room so she sent in the NP—another good sign, right? Wrong, again. She brought in with her a young woman with a laptop attached to her shoulder who furiously typed everything that was said. The NP dropped the first part of the news on me, that I was, “unfortunately,” the 1 in 20 whose

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biopsy showed cancer. I put my hands to my face and screamed: “No! No!
No-o-o-o-o!!” I have never felt so blindsided. How could this be? I didn’t think it happened this way! I thought they would have called me or something! The nurse continued, standing before me, reading from a script: The cancer was so pervasive that the doctor recommended removal of my breast. What?? What??? What happened??? I couldn’t believe it! She half reached toward my knee, but otherwise expressed no kindness or sympathy. She might as well have punched me in the stomach (I wish I had done that to her): I had stopped for a light lunch en route to their
office. I had to jump up and run to the bathroom, sick. I have never been so shocked. (Other patients have told me they reacted the same way.) The NP denied having told me—three times, including once on the ‘phone (I should have taped it)—her previous lumpectomy opinion. (I wonder if “YOU’RE LYING!!!” found its way into the transcript.) I demanded to see the doctor. She came in, acted very jolly, patted me on the knee, but had little time or sympathy, said there were worse things, and the GOOD NEWS was, I could be CURED!--with a mastectomy. I pointed to the mammogram and asked, again, “How did this happen?? Should I have had a biopsy in February?” (Yes!)

It should have been obvious from the beginning that there was too much secrecy about all of it, then they dropped it on me like a bomb to make sure they were covered. I wanted to take the remaining 17 Valium tablets in one swallow. I had no idea I could be so vigilant about mammography and then hear such news.
I thought “early detection” meant early and that you could get it with a tiny lumpectomy or even just zap it with a series of radiation. The most shocking thing was to find out that I had been walking around with breast cancer for a decade, unknown. I had a lot to learn, but first I found a better hospital and a doctor (and nurse) who could at least pretend they cared. And a breast center whose radiologist will TALK with a patient as much as she wants and not hide behind a door! I kept thinking, this can’t be as good as it gets in breast cancer detection in 2008! (Guess what? It wasn’t!) How I went in six months from calcifications that were dismissed to being told I needed a mastectomy has to do with what is called a “standard of care.”

In the most shocking way, I learned that micro calcifications can be an indicator of cancer. There are different types of breast cancers. The type I have is DCIS—ductal carcinoma in situ (Latin for “in its place”). It is the most common type of non-invasive breast cancer, accounting for roughly 70 percent of first-time breast cancer diagnoses. (The rest begin in the milk lobes.) DCIS is, therefore, the type that women are most likely to get first and, I was also shocked to learn,
I was in the exact average age range when it is diagnosed—between 56 and 58. In 35 years of seeing gynecologists, none of them had told me anything. The cancer is presently confined to my milk ducts (or so we thought), but by the time the calcifications showed cancer, it had spread from one quadrant into another. The cells are intermediate-to-high grade, which is more serious than low grade. It is predicted they will move through the milk ducts and become a more invasive (Stage I or higher) type of cancer if not removed within months. (The newer digital mammography allows a radiologist to see calcifications better, but it still has often progressed and spread significantly by that time, like a straw that becomes clogged.)

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Most of us don’t realize that mammograms read only through soft tissue, which comprises the milk ducts; it does not see into them. Mammogram machines are mostly
designed to read changes in density, as in a more solid, Stage I or higher tumor. Now they can reveal “flecks”—micro calcifications—which look like tiny dots or dashes on film. When the flecks increase in number, change or begin to cluster into patterns—like a holiday tree—only then does a radiologist recommend a biopsy.
I learned to even greater shock that the flecks show up only when old cancer cells have progressed and begin to die off (called necrosis). This process takes up to eight-to-ten years (or more, the radiologist later told me). In fact, mammograms never read this type of cancer; they only see the by-product of it. So by the time calcifications are seen, the cancer has been there a long time. Unlike healthy cells, the dead cancer cells give off a milky substance which reacts with blood flow to the area, and “calcifies.” I. Had. No. Idea.

The process begins with a single cell in the lining of a milk duct that, for any of a number of reasons, mutates when it reproduces itself, and actively divides and multiplies until the unhealthy cells overtake the healthy ones. During the decade in which old cancer cells progress toward necrosis--and “detection”--DCIS has often spread into another quadrant. No breast cancer happens overnight, but this most common type is particularly insidious and undetectable. I am beyond outrage: During the decade in which my cancer progressed, my mammograms showed nothing. This was a default, archaic way to detect my breast cancer. There was an alternative. This standard of care will cause me the loss of my breast and a whole lot of trouble. Let me explain.

My new breast specialist was kind and patient and sat with me for two hours. She explained a lot about DCIS, but she left out one BIG piece of information. She, too, gazed at my mammogram and didn’t answer my “How-did-it-get-to-this-point?” questions. She said she needed more information and recommended a contrast-dye breast MRI scan. I had never heard of it and didn’t understand why it was needed, but was glad for a delay that would give me time to process the matter: A thick hematoma had developed from the biopsy and needed a month to dissolve before the scan would be clear.

I began meeting and consulting plastic surgeons about the different types of breast reconstruction. I never dreamed I would be in a doctor’s office deciding between a silicone implant in one hand and a saline-filled one in the other.
I wondered aloud to one of them about why I would be having an MRI scan: My right breast mammogram showed nothing of concern and didn’t they already know everything there was to know about the left one? (Wrong, again.) Could there be invasiveness still not detected, or what? He kindly tipped me off: “They’re looking for DCIS in your right breast, too,” he said. “That happens in about one in one hundred of the patients I see” (and would take much longer to show up by mammogram). Now they wanted to know everything possible, in case I wanted to opt for a bilateral job while they were at it! It wasn’t a great leap to figure out that if MRI could detect DCIS in my right breast when it still looked fine on film, it could have detected it in my left breast earlier, too.

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Copyrighted 2/3/2009

I showed up at Imaging a few weeks later wondering, Could I have been the victim of a healthcare secret? Surely, surely not. Such things don’t happen in American health care! I told the MRI technologist how upset I felt realizing my cancer could have been seen earlier by MRI. I was testing her: Surely she was going to explain that it doesn’t work that way. I slowly realized that I had been duped. The tech didn’t argue with me, but instead muttered something about how “doctors want to be paid.” I asked her, “What do you mean? They aren’t paid for ordering or not ordering MRI.” Half-turned away from me, she shrugged and kept repeating, softly, “Doctors just want to be paid, that’s all. They just want to be paid.” I felt as if I had stumbled into the strangest dream I ever had. What was she trying to tell me? The nurse who started my IV said women need to call and write their insurance companies asking them to pay for breast MRI scans. In round numbers, these are the comparative diagnostic costs: A routine mammogram costs about $200 or less, with higher costs for diagnostic and close-up, but the intravenous contrast dye MRI scan that I had costs about $1,700, depending on the facility. My insurance covered it. A sonographer technologist commented that women “would be up in arms” if they knew about mammography versus MRI. Well, thank you, Sherlock!! I began to think this had happened to me for a reason. (You may have guessed that I am a writer.)

I left Imaging and marched over to the breast center’s nurse liaison’s office and asked to see her. I had had a couple of lengthy ‘phone conversations with her when she told me a lot about DCIS, except that she, too, had left out a BIG piece of information. I remembered asking her why I had never heard about DCIS through mainstream media. In an unguarded response, Nurse L. blurted out, “It’s because most women just wouldn’t understand it.” I reeled. We live in a well-informed society (or so I thought). I have a master’s degree plus 12 other courses and 20 years’ work experience and she’s telling me what I can understand? One more time somebody was thinking for women! I told her I felt outraged and misled realizing that my cancer could have been seen earlier by MRI, in time for a small lumpectomy to get it. “Oh-h-h, now, you don’t k-n-o-o-o-w that!” she chided me. “Oh yes, I do know that!” I said. “If MRI can show it now, it could have shown it earlier.”
I thought I had to take my only chance, so I blamed her, along with everyone else, for protecting the information and helping restrict the use of MRI. She named many excuses for MRI not being ready to use for breast cancer screening, although I later learned that it was already being used: “It is too sensitive which leads to false positives, which lead to unnecessary biopsies, which lead to staph infections and deaths and, besides, it would overload the system and...” I broke in, “And ONE of those problems is that ordering MRI scans puts doctors at odds with insurers who contract with them! She had to acknowledge that, yes, insurance coverage is an issue. “But YOU are going to be another SUCCESS STORY!” she rallied. “YOU will be CURED!” “WHAT??? Bull!! A mastectomy is the same old “cure” they used a hundred years ago!” I said. She started talking about “refinements” in mastectomy and reconstruction and mammography being the “gold standard” for breast cancer screening. (Circular logic: MRI can’t be the “gold standard” because it isn’t openly available to everyone.) I stopped her: “A “refined” mastectomy is STILL a mastectomy!” She finally admitted, “All mammography promises is to catch cancer

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in time to save your life.” (Maybe. With mastectomy, radiation, chemotherapy, etc.) Well, I would have liked to know that! I thought things had come a whole lot further. It is certainly implied by all the pink-ribbon rah-rah and fundraising that go on. “Look at all the money that Susan Komen and the American Cancer Society raise--and it’s the same old thing??” I cried. “What are they doing with all that money??” She used an incoming call to get me out of her office. It was obvious that I was uncovering things she did not want to discuss.

It is shocking to realize I could have gone ten years plus without a mammogram and had the same result (my doctors reluctantly admitted it). LET ME EMPHASIZE, as they did, however, that women over age 40 should get some type of breast cancer screening every year. You should never skip a mammogram or any other recommended diagnostic. Playing Russian roulette with it means you don’t know where you may be in the progress of the disease and that could spell serious trouble for you.

I returned to my new surgeon’s office a week later to learn the results of my MRI (now December 2008). I sat across her desk as she opened my file and turned the monitor so I could see the pictures. My right breast had small shapes of various colors and indicated several tiny nodules that had not been seen by mammogram. (Upon later sonogram, they were judged to be non-threatening, fluid-containing cysts.) Then she pointed to my left breast: There they were—wide, fan-shaped red streaks dominating dozens of pictures. They indicated great blood flow feeding the cancerous area, now measured at 30 % involvement. My husband sat next to me as stunned as I was. It was obvious to both of us that MRI could have detected the cancer at a great deal less. I said, “What bothers me is, my cancer sat there
(I gestured to the screen) and progressed for a decade or more undetected by mammography when it could have been seen earlier by MRI.” I sat back in my chair, looked directly at my doctor and waited for her to explain it differently. (Surely, surely, I could not have been the victim of a secret.) Instead, I heard the same words I would hear over and over: Softly and slowly she said, “That’s the standard of care.” I was ready. I leaned across her desk: “This is a completely unacceptable standard of care, but what’s even more unacceptable is that we are not told about it!” She just looked at me expressionless. (By the way, "Uh-huh" is not an answer that you can hold them to. Insist on "yes" or "no" as lawyers do.)

My issue with my gynecologist is another matter. He knew, as doctors have known for decades, that DCIS is an extremely likely thing to happen to a woman in her 50s and that mammography does not detect it early, yet he never mentioned it to me or even handed me information about it. He knew I had risk factors, as most of us do. Even in elementary school I could have figured out that several correlative factors could equal a causal factor! In this case, there was a BIG difference between a standard of care and doing the right thing for a patient. By the way, the standard is a minimum guideline; a doctor can always do more. I wrote him a nasty letter detailing how betrayed I felt, but am too angry to see him. I trusted him,
I trusted the health care system and I trusted mammography. I feel betrayed by all. Reminders about breast self exams did nothing for me—there was nothing to

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feel! I did not have symptoms of pain or discharge. If they appear at all, it is at a later stage. And mammography showed nothing until it was pervasive. If my doctor explained DCIS and MRI to one woman in her 50s, he would have to mention it to all. And that would take time and lead to requests for MRI scans which, I have been told, would cause conflict with insurers and jeopardize his relationships with them. I would have willingly paid for it, but was not offered the opportunity. It takes time and trouble to fight with them, so better to just not mention it. And so it is circular. Better for me to suffer through three hours of major surgery and recovery, the loss of my breast plus all the folderol of reconstruction than for him and my insurer to go beyond the standard of care. I cannot believe American women are being treated this way! Our health care system knows that if women are vigilant about mammography, it will usually detect cancer just in time to save our lives (maybe). No reason to detect it earlier if it means paying for all those “unnecessary” MRI scans. Meanwhile, unnecessary mastectomy and reconstruction remain a huge industry. And chemotherapy. Like many plastic surgeons, mine does only breast reconstruction and is booked four-to-six weeks in advance. With this “standard,” your doctors are the only ones protected. I have talked with former DCIS patients who were surprised to learn these things even a year after their own surgery. If you don’t ask or research it yourself, they won’t tell you. Better to keep it secret.

My online research led me to the October 2007 issue of the Harvard Women’s Health Watch which notes the current American Cancer Society’s guidelines regarding breast MRI: It is, in fact, recommended for women whose lifetime risk of breast cancer is greater than 20%. If you take the breast cancer risk assessments indicated there and in medical journal articles, you see that getting into that 20% is mostly determined by having a causal factor, usually a first-degree relative (mother, daughter, sister) who has had breast cancer, and that determines your referral to MRI. However, there is nothing preventing a doctor from ordering MRI for a patient, even if an insurer won’t cover it. My oncologist says that everything done or ordered in a doctor’s office goes directly from their computer to the insurer’s computer. There is no easy way to “stop the presses” and arrange for a patient to pay cash for something. Doctors can’t spend all their time on the ‘phone arguing with insurers so they give up and let them have it their way.

Drawing a line about a “higher risk” group is nonsense for several reasons: First, the majority of women who are diagnosed with breast cancer do not (knowingly) have a first-degree relative who had it. Second, we are all at high risk, especially by age 50. Third, before the close-up detection of recent years, many women, Nurse Liaison told me, died from other causes and upon autopsy or research it was found they had DCIS unknown. Mammography came into popular use only in 1969. It is well known that it didn’t catch on with my mother’s generation. Many women in my age range tell me they can’t say for sure that their mother ever had a mammogram and the same is true about mine: She died from an aortic aneurysm at age 80 in
1997. Since it takes a decade to show up and breast MRI was not possible then, I cannot say for sure that she did not have breast cancer. Often, they saw a doctor

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regularly (maybe), “felt for something” themselves and skipped what they thought was too much trouble. My mother was adopted and her mother’s cause of early death in
a rural area in the 1920s was not completely known. One patient told me her 71-year-old mother was diagnosed with DCIS six months after she was. Our 1 in 8 odds of having breast cancer are lifetime odds. The risk goes up to that point with age and DCIS is the type of breast cancer a woman in her fifties will most likely get.

I started another search on “MRI-guided breast biopsy” and found that it is being done frequently at several hospitals in the big city in which I live. In fact, I discovered that it has been done since SEPTEMBER 2004 in my hospital, just one floor below the nurse liaison who tried to cover it up. My head kept spinning. Surely such deception couldn’t be going on! I began making contacts and was shocked to be connected to many women who have been getting breast MRI scans for years: “Patient A” is 39 and has had a scan every other year for several years, because her mother had a non-DCIS breast cancer. She alternates screenings with mammograms, which makes sense, because mammography can detect some breast cancers other than DCIS. “Patient B” is 53 and has been doing the same: Following her sister’s diagnosis of breast cancer, she learned they both have a BRCA gene, although that does not necessarily mean that Patient B will ever get breast cancer. “Patient C” is 38 and has a breast MRI scan every other screening, because she has an autoimmune disease that causes fibrocystic breasts which may or may not lead to cancer. “Patient D is 46 and alternates mammography and MRI every six months at a local medical school. Her mother had breast cancer which originally involved one lymph node and she died 20 years later from the second recurrence.
I have been led to many patients whose doctors are quietly referring them to breast MRI, alternating with mammograms or sonograms, which may determine whether a nodule is a fluid-containing cyst or a growth consisting of harder material.)

At best this is an unequal standard of care: DCIS is extremely common and random whether or not you have a first-degree relative who has had breast cancer. It never occurred to me that I was not getting as high-tech and best-possible screening as any other woman. No matter what else is true, it is not acceptable for one woman’s cancer to be detected early and mine detected by an archaic tool after it has progressed and spread for ten years. It is uneven as well: Everybody closely associated with health care knows MRI is much better than mammography, but they are advised to not tell the rest of us. That way we don't ask for MRI.

Yes, I have consulted attorneys. What it comes down to is this: Gynecologists are off the hook as long as this is the standard of care. It is up to us to push this “standard”. Do your own research online or through a hospital library service. Contact medical school researchers who are studying the use of MRI for early breast cancer detection to see how you can influence their grants and publishing. If we get the “buzz” going, the system will have to address it more truthfully. Medicine moves slowly from research to practice. It can take five years from the time a researcher proposes a project, gets funding, completes a study and gets results and recommendations published in a journal.

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Only as practitioners and insurers read the articles do things slowly change. In this specialty they are usually guided by the American College of Obstetricians and Gynecologists (ACOG) and the American College of Radiology (ACR) in Washington, DC, so contact their presidents and board members, too. However, I have written ACOG twice (the president changes each year), and they have never answered me. ACOG avoids making recommendations about the use of MRI and allows the ACS and doctors to make their own decisions. This makes for a more uneven situation. Whether you live or die from breast cancer depends on the luck of who your doctor is. Talk about it with other women and ask your doctor why s/he has not mentioned DCIS and MRI to you. If you insist that they order MRI, they have to do it (CYA rules). Request that your insurance company cover a breast MRI at age 50 (take the average age range when DCIS is diagnosed—56-58--and back up 8-10 years to when it would have begun) plus others at regular intervals. Listen for “spins” and be prepared to argue. There is no excuse these days for letting cancer sit around for a decade and being “detected” only after there is pervasive involvement. There is an alternative. Contact your U.S. representatives in their local offices, particularly those who are physicians and women, about how ACOG should require doctors to inform women about MRI. (However, I have written my, ahem, Republican congress man twice and have never received an answer.) Implore them to lead and not play it safe and follow. The Women’s Health and Cancer Rights Act (WHCRA) of 1998 required health insurance companies and self-insured group health plans that cover mastectomies to also cover benefits for related services, including breast reconstruction. It was supported by then New York Senator Alfonse M. D’Amato, who had targeted more than $900 million in federal money for breast cancer research between 1982 and 1998. D’Amato sponsored WHCRA in Congress and helped push it through and signed into law in 1998. Congress can do more for us now.

Basic economic laws tell me that if we push for wider use of MRI for breast cancer screening, supply will meet demand and the cost will lower. Secrecy isn’t moving it anywhere. If we drive the state of the art to become an equal standard of care, insurance will cover it and other issues will be resolved: MRI scanners can evolve so they are not so sensitive as to result in false positives. (FYI: Mammograms also result in false positives—and negatives--and lead to “unnecessary,” “risky” biopsies.) I trusted the health care system to detect my cancer as early as possible, not as early as what was quietly, selectively (not) “available” to me. This is not “early” nor is it any “great stride.” Even women who get out and raise money for breast cancer are being misled.

Spokespersons for various cancer organizations refer to mammography as the “best” “screening” “test” “available:” This is A MAJOR spin: Available to whom?
Mammography is the only thing available to all women. Think about it: Why even add that word if not to spin it? Remember, they define success only as five-year survivability, ignoring that for many women that means extensive chemotherapy, or radical surgery and drawn-out, complicated reconstruction. This is not my definition of success. They can make you “survive” five years, losing much of that time to stress and complications of treatment. And if “best” is defined as

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“cheapest,” “available worldwide,” “low-tech” or “simple”—then mammography fits the bill. If, however, you define “best” tool as the best thing possible for detecting early stage breast cancer, mammography isn’t even in the “Race.” MRI has clearly been demonstrated to find breast cancer much earlier. Is there evidence that MRI improves the 5-yr survivability rate? We don’t know, because the use of it has been so limited that the system hasn’t gathered enough data. We do know that earlier detection results in significantly less radical treatments, conservation of the breast more times than not, and much less risk and stress for the patient. It certainly makes the quality of those years better. Nancy Brinker, who started the Susan G. Komen Foundation in memory of her sister, also praises mammography and doesn’t mention MRI, yet this set-up makes MRI openly “available” to her due to her sister’s breast cancer. (You may form your own opinion about whether or not she takes advantage of such a high-tech offer.) The Komen Foundation and the American Cancer Society have raised $1.5 billion each. However, you get the impression that the best thing you can do is to give them more money to “find a better tool.” They don’t tell you the better tool already exists. Something so insidious should not happen when there is an alternative. Not to American women. Not in 2011.

I shared my story with my 66-year-old friend, S., who I learned has had breast
calcifications for years, but no one has ever told her about DCIS or MRI. Her mammogram was coming up (at a medical school), so I asked her to print my earlier story, show it to her doctor and ask for an MRI scan. Her doctor was not surprised and said sweetly, “Well, S., I’m per-fec-tly will-ing to order an MRI scan for you, but I can tell you right now that your insurance won’t pay for it, because you are not in the 20% higher risk group. You will have to pay for it yourself.” (Not. True.) As we were talking, S. recalled for the first time in many years that her maternal grandmother did, in fact, have breast cancer 45 years ago, but she thought it happened after a fall. “Does that count?” she asked me. However, her mother’s situation wasn’t clear. Now 90, she has decided, like many older women, to no longer “fool” with breast imaging. So who knows? Another 52-year-old friend was told by her doctor that her half-sister’s having breast cancer didn’t “exactly” put her in the “higher risk” group. Talk about splitting hairs! Breast cancer is entirely too common to draw such a line about it. And, as S. pointed out, this setup encourages patients to lie about their family health history to get the MRI scan covered. If I had known what a difference it makes, I would have done it. And such a practice would render statistical analysis inaccurate, which would affect everything. But then, if the system isn’t going to be transparent with us…

Since S. and I are with the same health insurance company which covers retired teachers and current state employees, I asked her to ‘phone them. She spent an hour on hold and being passed from one person to another. A nurse first questioned her
as to why she wanted an MRI: “Aren’t you getting a mammogram?” she asked. S. told
her, “Yes, but I hear that MRI can detect breast cancer earlier. The nurse had to agree. Eventually, S. was told her plan would cover it: It could come out of her $2 million lifetime coverage, she could divide it with her secondary insurance or she could pay for it and it wouldn’t count. As the wife a state employee, I called the

Katherine Langley
Copyrighted 2/3/2009

company, too, and was told a different story. They told me I would first have to get from my doctor a CPT Code for “Current Procedural Terminology.” From that point they would see if my request needed “more medical attention” or “predetermination.” They don’t make it easy, but your doctor knows that if s/he codes it properly, insurance will cover it.

If we don’t push this matter along, it could take more many years. Like many patients, I was not—to my knowledge--in the 20% “higher risk” group, yet I obviously have DCIS. Because breast cancer is so common and random—1 out of 8 women--all women should have equal access to the earliest possible detection of cancer, not quiet, restricted, “available” access. I have been even more shocked to meet women who are in the “higher risk” group whose doctors have never mentioned MRI to them. Are we just conduits to haul money into a practice, or what? We should insist that cancer organizations be transparent and release specific, not misleading, information to us that we need to know and have the right to know. My experience has been surreal.

Warning: The following information is graphic, but includes things you need to
know and have the right to know: After pre-op but prior to surgery, I will be wheeled to nuclear medicine to have a radioactive dye injected into my breast and then wait an hour for it to work. (“Don’t worry,” I was told, “you’ll be so Valiumed-up you won’t care.”) This will enable the surgeon to more easily identify, remove and test a sentinel lymph node when she goes in. It can be done during surgery, but would require a longer incision to use a light and search. If the sentinel node has been invaded by cancer, she will remove more nodes until one tests negative. If the sentinel node has no cancer cells, she will stop there. The internal nerves come out with the breast tissue, removed as one unit, like an orange. Therefore, a mastectomy patient loses most sensation in the area. Total time in surgery is three hours, about 1-1/2 hours each for the breast and plastic surgeon. I will spend one or two nights in the hospital and leave with tubes to drain fluid that moves in to fill the vacuum. This is an absolutely disgusting betrayal and I deeply resent it. After a week, the follow-up visits to the plastic surgeon’s office begin. I will be on muscle relaxants while the bruising and swelling heal and the tight chest (pectoralis) muscle is gradually expanded by a temporary implant. I will feel bad for the weeks it takes to recover from major surgery and my activity will be limited until the drainage decreases. After three months, I will have another outpatient surgery to reopen the incision and place the permanent implant under the muscle. There will be a third surgery to construct a nipple and a fourth to transfer abdominal fat to the indentation the mastectomy left above the breast. (Breast tissue can reach as far as the collar bone.)

Meanwhile, they all keep secrets about MRI. A nurse who is a former breast cancer patient kindly offered to let me to see and touch her work of a year ago to help assure me that it will turn out acceptably. Her silicone implant feels like breast tissue, but firmer. However, it isn’t as “fluid,” in that it doesn’t move much from side to side. Just as well.

Katherine Langley
Copyrighted 2/3/2009

To be fair to her, my surgeon is willing to do a lumpectomy if I want. It would be J-shaped across the outside half of my breast. 30% plus the required half-inch clean margin all around. There is no reconstruction possible for a lumpectomy, so the result wouldn’t be pleasing. It could have, should have and would have been a small lumpectomy in a 1-1/2 hour outpatient surgery—were it not for the standard of care decided for me, secretly. At least, I would have had a reasonable choice. To be more fair, my doctor reminded me that I can choose to do nothing at all if I want. Sure.

If you are doing mastectomy for DCIS, there is no point in leaving a chance of cancer cells inside. Milk ducts flow into and through the nipple, so she will remove my nipple from inside (like an inversion) attached to everything else. I may even lose my areola later: My surgeon believes she can save it, but one spot looks close. During surgery she will remove tissue from under the skin there and send it to pathology. In a week, she will know if she should go back and take the remaining “hardware,” patients call it. If so, her initial two-inch incision from the areola out will be extended by an incision across the middle of my breast. The skin will be closed like a clam shell until my plastic surgeon can make a nipple and tattoo an areola on. This is the hard—nonsense--truth about even simple, “refined” mastectomy. I never wanted to know these things. I can’t believe my generation of women is being so BS-ed about our health. I would not believe for a minute that women doctors or doctors’ wives follow this standard. This happened to me despite showing up for mammography every year right on schedule. For 17 years.

We have the right to insist on transparency about this issue. We must take a hard look at what is going on and not wait for someone else to decide when and to whom advances are made “available.” We must be our own advocates and demand accountability and complete, specific disclosure of information. It did me no good to not want to know much about breast cancer. If you talk to other women about it, you will be surprised by what they tell you, even inadvertently. Get really involved in breast cancer groups instead of just throwing money at them. Read more. If I had known more, I would not have let this happen to me. It should not happen to you.

Postscript April 2010

There was no lymph node involvement and my surgeon was able to save my areola (sort-of), as the cancer cells were not too close to the underside. I still need a tattoo, however. I have had 3 outpatient surgeries after mastectomy and have made 30 visits to the plastic surgeon’s office. The visits are short, but this is
a ridiculous way of doing things. I had better things to do. I thought mastectomy was a thing of the past, unless you skipped a mammogram, had an aggressive type of cancer, or chose it. For a while I was treated for an infection that turned out not to be—I just bruised very red--then a few tiny places on my skin needed stitches, since they would not heal over: My skin is fair and thin and blood flow after mastectomy must reroute itself to nurture the skin, so it doesn’t always reach all places. Way too much folderol and way too much risk.

Katherine Langley
Copyrighted 2/3/2009

The pathology report contained the biggest shock: The lab that analyzed my breast found a cancerous Stage I tumor that was 1.3 cm, bigger than a chick pea.
At that size, it had been growing 3-5 years and contained more than 1 billion cells, any of which could have and would have drifted into my lymph nodes. In other words, it was sitting there for 3-5 years at Stage I before it was “detected” at Stage Zero by mammogram. Neither my doctors nor I felt it. In 2008 alone, the tumor was missed by two sonograms and three mammograms, including a routine, diagnostic and close-up. Why? Because it was soft, embedded in soft tissue, and mammograms don’t read soft tissue well. Many women have told me of having a Stage I tumor that was not detected until it was 1.5 or 1.6 cm or larger. That is too close to Stage II—2 cm. My cells were found to be estrogen-receptor positive. Because the tumor was bigger than 1 cm, I have been advised to take Tamoxifen for five years to modify estrogen from my adrenal gland that could feed stray cancer cells in my system.
(I no longer have ovarian-produced estrogen.) That lowers my risk of recurrence to 10-15%. If it recurs anyway, it can’t be detected until it reaches Stage IV and has spread to other organs. This is S-L-O-P-P-Y! For a decade or more nobody cared what I was taking or not taking to affect the cancer. Like many women, Tamoxifen makes me so “wired” that I have to take a different pill to sleep most nights.
The only alternative is bad for my bone health. The health care system places us in
a very risky situation. I will have my imaging the way I want it from now on. My new gynecologist has agreed and my insurance will cover it. I will alternate MRI screenings with mammograms, like the “higher risk” group. No more arguments and no more lies!

Our health care system must stop deluding women about mammography. They tell you, “Mammography detects the majority of all breast cancers.” They don’t add the word “e-v-e-n-t-u-a-l-l-y.” And, most breast cancers are diagnosed only after they become invasive, as mine turned out to be, and mammography can do that (maybe). Plus, MRI is openly “available” to only 20-30% of women, so it can’t possibly detect the majority of breast cancers. Do you “get” how they spin things? Doctors may tell you, “Most of the time when breast MRI is done, it has no point anyway.” Well, for 17 years my mammogram had no “point,” but that doesn’t mean it wasn’t done!

Radiologists warn that mammograms miss some things, particularly in dense breasts like mine. Right, but this isn’t about that 10-15% caveat. This most common type of first-time breast cancers is never detected by mammography until up to a decade or more has passed and necrosis and calcifications occur. By that time, it has often spread enough that a lumpectomy is not a real option. We have the right to know these things! By the way, mammography misses a lot of things: Many women have told me of finding a lump just days or weeks after a mammogram missed it. You will be told, “The health care system can’t possibly affo-o-o-rd for every woman to have an MRI scan every year!” Meanwhile, they make sure they or their wife get one! No one should be heard to say that we can’t afford to diagnose breast cancer early. We should afford it for every 50+ woman at least, because that is when DCIS usually begins. Once in 2004 would have caught my cancer at half the eventual life of it, before it spread and a tumor developed.

Katherine Langley
Copyrighted 2/3/2009

The next time I saw my primary care doctor I explained how I had put things together, including the risk that the tumor’s cells could have drifted into my lymph nodes. Not yet sure of all of it, I looked directly into his eyes two feet away and said, “Tell me if I’m wrong.” He looked at me, expressionless, for a long moment then finally said, “You’re not wrong.” He tried to explain the matter in terms of cost-benefit: Most patients believe their life is worth the $2 million lifetime cap on most insurance plans. But when it comes to whether or not to use a particular diagnostic, insurance companies give a life a $100,000 value: When researchers try to predict the value of a diagnostic for a patient, they consider one, such as MRI, and the population involved. They consider how many people would get the test (say X=10,000). They look at the total cost of doing the test for that group, say, $1,700per person for MRI (Y then = $1.7 million). Then they determine how many lives it would save. If $17 million saves 10 lives, the cost of using MRI to do it would be $170,000 per person and not recommended over a cheaper test such as a mammogram. Little value is placed on finding it earlier and preventing risk of lymph node involvement or the stress of mastectomy, reconstruction or chemotherapy.

If this were the 1970s I would be happy just to be a survivor. However,
I believed things were (much) better now--and they were--but it was covered up and not made “available” to me. This is not acceptable. There were more than 67,000 cases of DCIS diagnosed last year. MRI can detect them earlier than mammography (the articles on my reference list prove it). Breast cancer is the second leading cause of cancer death in women. 40,000 women still die from it in the U.S. each year and it is not because they all skipped mammograms. In many cases, mammography was simply inadequate to detect it early enough to save them.

Postscript 2: August 4, 2010

I have had the BRCA test and don’t have the gene. Despite that fact, I went for my now-yearly breast MRI scan today. I was walking out of the locker to go to my scan when another woman returned from hers. She had the same slumped-forward, deeply sad look I had the first time I entered the MRI center. It read, “I can’t believe what I am having to face.” There were two chairs, so we sat and talked.
I learned that her situation was worse than mine. She was a 66-year-old widow who had an involved lymph node(which means that cancer is being carried to other parts of her body). I asked, "How do you know?" She showed me a hard, red knot that protruded under her arm, a little bigger than a moth ball. Like me, she was never late with a mammogram. However, without ever being seen on film, her cancer cells pushed through the milk duct and moved to invade her lymph node. (I learned that
6% of all breast cancer diagnoses occur this way.) She was going to have chemotherapy, then mastectomy and reconstruction. (I have looked at many swollen, bald-headed women in my doctors' offices. Despite chemo, even 1 involved lymph node lowers your life expectancy.) Her doctor had told her there could be other lymph nodes involved as well. “I trusted mammography!" she cried. I understood. I felt so sorry for her and knew that could have been me. (My doctor lucked out.)

Her gynecologist never mentioned MRI to her. She had no risk factors that she knew of. Her mother lived in a remote, rural area, never even saw a mammogram machine and died from other causes; therefore, she doesn’t know that she did not

Katherine Langley
Copyrighted 2/3/2009

have breast cancer. Her daughter lives nearby and wants her to stay with her. However, there are two small grandchildren and she already has an anxiety disorder, so that may not work. I gave her my ‘phone number, but haven’t heard from her (now January 2011). (I also learned that 50% of breast cancer diagnoses occur in women age 65+. It is obviously age related.) I don’t know if she survived all of it or if I would have survived it. This was no way to treat either of us. I do not believe her gynecologist’s wife practices exclusive reliance on mammography.

** Today I started yet another conversation about breast cancer with a stranger while waiting in a cafe. (I pick women who look 45+ and, as often happens, I learned that she is also a survivor.) She informed me that there are now some suburban imaging centers that will do walk-in breast MRI scans for $400 cash. (You have to look for them.) Her medical school facility told her about them when she complained of having a $1,500 insurance deductible. The encounter showed me how important it is that we ask and research and talk with each other. You can find out more for yourself than your doctor or the ACS will tell you. Feel free to print my story and take it to your doctor and ask him/her if these things are true or possible.

My shy, reticent nature kept me from being as assertive about this matter as
I should have been. Despite my shyness, I have told you my most private business, because I firmly believe we have the right to know these things and because I want you to help me tell other women. Please make your own business cards with this blogspot address and hand them out, as I do. We must stop this betrayal. These secrets are all about number-crunching and they can cost you your life. Thank you.

**(Please read these and other articles online and through your hospital’s library service.)

Boetes C., Mann RM, “Ductal carcinoma in situ and breast MRI: Lancet Oncology,
2007; 370:459-460., “The Basics of DCIS.”

Conference Report, Winter Symposium – Continuing Medical Education – 21 February
1998, Breast Disease, Maltese Medical Journal, 1998; 10(1):36.

Goscin, Christopher P., B.S., Berman, Claudia G., M.D. and Clark, Robert A., M.D., “Magnetic Resonance Imaging of the Breast,” Cancer Control, September/October 2001, Vol. 8, No. 5.

Harvard Women’s Health Watch, “MRI’s Emerging Role in Breast Cancer Screening,” October 2007.

Hwang, E. Shelley, M.D., “New Strategies for Managing DCIS of the Breast,” San Francisco Medical Society.

Ibarra, Julio A. M.D., “Understanding Your Pathology Report,” Breastlink Optimal Breast Cancer Care.

Kuhl, Christiane, “MRI I Better for Early Breast Cancer Detection, Lancet Study, August 14, 2007.

” Mayo Clinic Health Solutions staff, “Breast MRI: Imaging Test to Detect Breast Cancer,” July 23, 2007., “BSGI (Breast-Specific Gamma Imaging) posts higher sensitivity than mammography or MRI for the detection of ductal carcinoma in situ,” August 13, 2007.

Katherine Langley
Copyrighted 2/3/2009

Samanta, Ash and Samanta, Jo, “Legal Standard of Care: A Shift from the Traditional Bolam Test,” Clinical Medicine, Vol. 3, No. 5 September/October 2003.

The American College of Radiology, “Practice Guideline for the Management of Ductal Carcinoma in-Situ of the Breast (DCIS),” 2006 (Res. 21).

Vega, Charles, M.D., “MRI Better Than Mammography at Detecting Early Breast Cancer,” Medscape Medical News, August 14, 2007.


  1. Hi,

    I am so sorry for your experience. It is, according to much reading that I have done, not accurate that MRI is more likely to pick up the calcifications associated with DCIS. According to Dr. Susan Love and others digital mammography is the best bet for picking up calcifications when they are small.

    My radiologist found a new calcification after comparing last year's images with this, and while he too thought it unlikely to be cancer, he recommended that we be conservative and do a biopsy. It was a very small DCIS.( 3mm) contained in one duct. I was grateful that the radiologist spent a good deal of care evaluating my images and encouraged the biopsy.

    I wish you well.


  2. Hi Lois:
    Yes, by the time the calcification appears mammogram can see it better as defined by calcification. However, MRI can see earlier that there is cancer in the area prior to the calcification of it. Calcification occurs only after DCIS has been present for up to 8-10 years or more. Then old cancer cells die off and "calcify." Please read it again. It's a little difficult to understand. Mammography doesn't read DCIS; it only reads the by-product of it when the cells die, the calcification.


  3. Dear Katie,

    I take like an hour to read your full article but it worth! I´m a 30-year pharmacist from Brazil and see your blog link from a New York Times post.
    I apreciate your efforts to share with us your experience and I´ll defenitely tell other women, specially 50´s and greater like my mom, to ask their gynecologists for a MRI scan. I also don´t rely on their "standard" procedures. I´m pissed off actually about these "standards" that we are supposed to agree and live with it.
    I´m not sure about coverage of this image from health insurances here in Brazil but if I heard a experience I´ll post here for others.
    Take care and hope you keep fine!

  4. Hi Cecelia:

    I am so pleased to know that my story has reached you in Brazil and that you understand it. I must have put in 100 hours researching, writing and revising it many times so that almost anyone who can read English could understand it. In fact, I have added a few things on the last page that you and your mother may want to read. And yes, it has been more than 2 years since my diagnosis and I am fine. I take a Tamoxifen tablet every morning and hope for the best. Please tell your mom to not wait until her next checkup to ask for the MRI scan--do it now! This is a battle that we have to fight for ourselves.


  5. Hi Katherine: Almost the same thing happened to me. After I felt the calcification I had two mammagrams and then a biopsy a year and half later. By then, I had to have a lumpectomy and now I have had a mastectomy and reconstructive breast surgery and have been told one of my lymph nodes is cancerous. I mentioned to my Dr. if this happened to me it must be happening to many women. Our situation can be multiplied by thousands of unsuppecting women. There is definitly a big problem which needs to be addressed. Women are as you said walking around for years with breast cancer which could be detected.

    Pam Huff

  6. Hi Pam:
    Thank you. So few women comment that I don't really know how my story is received. I want women to read it who have had breast ca as well as those who have not, b/c you can share your experience of it. I praise MRI not just because it is modern and high-tech, but because mammography is sloppy and slow to detect it. I was blown away about what we are not told. Please help me tell other women these things. Thanks.


  7. Hi Katherine,

    Thanks for this blog, please contact me. I would like to help get the word out internationally.

    I really believe you need to share this experience, it is truly powerful.


  8. Thank you for this, Katherine. I am definitely going to push for an MRI when I get screened.

  9. Katherine - I have some important related information you may need, but that I cannot share here. If you agree it is relevant, you may share some aspect after speaking with me. Please contact me at KL

  10. Thank you taking the time to write this. I have shared on my facebook page and will on my blog too. I'm going to be turning forty one and am scheduled for my 2nd mammography (my first was at 35)-- should I be asking for an MRI instead?
    My maternal Aunt passed from passed cancer.
    thank you

  11. Hello:
    Thank you so much for reading my story and for helping me tell other women these things. Based on my research, it seems to me that your maternal aunt's having and dying from breast cancer would place you at higher risk for the disease. I think you should discuss this with your doctor, but before you see him/her, try to learn as much as you can about your aunt's experience of the disease; i.e., did she have the BRCA gene, what cell type did she have (triple negative is of more concern and harder to treat than estrogen-receptor positive (E-RP), how old was she when it was diagnosed, at what stage was she diagnosed? etc.

    The BRCA blood test costs about $500 (your insurance should cover it) and takes about a month to get back from the lab, because it is complicated and must be processed in stages. That may be a start; however, the BRCA gene accounts for only about 5% of all breast cancer diagnoses, so NOT having it doesn't mean you don't have a concern.

    Go to your doctor with as much information as possible so you won't be dismissed easily and take notes so you can sort it out later or formulate more questions.

    You did not mention your mother. Has she had any screening for breast cancer? What about your grandmother? Do you know for sure if she had breast cancer screening? If you have further questions, please leave them here again. Thank you.


  12. Hi Bert,

    I have a quick question for you regarding your blog, but I couldn't find your contact information. Do you think you could send me an email whenever you get a chance?




  13. My wife has been considering getting a mammogram here in Richmond, but we where also both wondering, how important is it?

  14. Hi Jason:

    I didn't really get enough information from you. If your wife is age 40 or has other reasons to suspect that she is at risk of developing breast cancer, then yes, she should get a mammogram. Even for women who are at high risk of getting the disease and are already getting an annual MRI scan, doctors still recommend a yearly mammogram, too, alternating every six months. The system is not yet recommending leaving mammography behind altogether, although they say they are moving in that direction. All women age 40-- or younger with risk factors---should get a yearly mammogram. They should know about the use of MRI and decide if they want one as well.


  15. What a nice list you have compiled here! My sister has been looking into mammography near Chandler, AZ and has been looking for a doctor.

  16. I thought much of this was extremely well-written and really made me feel like I was there. On my first mammogram at age 40, they found infiltrative ductal carcinoma, which means DCIS that has grown out of the duct and into the next tissue. I'm having a b/l mastectomy in 9 days. I had a great experience with excellent practitioners the entire time. Perhaps me being an RN and a nurse practitioner grad student helps me know when and what to ask. I would caution you from making blanket statements about all nurse practitioners. They are everywhere now and aren't going anywhere. Many of them know what they are doing and some do not. Just like many MDs know what they are doing and some do not. Sounds like you had some issues with your radiologist and surgeon as well (MDs?) so no need to bash nurses. Good luck and best wishes!

  17. Hi Alexa:

    Thank you for stating your case so politely. As I calculate it, your surgery was yesterday or today. I am so sorry about your diagnosis at such a young age. I hope you have come through your surgery well. Please leave a comment letting me know.

    I realize now that I was too harsh about nurses and, as I mentioned, was taking my anger out on the keypad. Nursing is a wonderful profession and I have admired and appreciated many dedicated nurses over the years. I still object, however, to having one deal with cancer. In fact, I suspect that the doctor I referred to charges insurance as much for the nurse using that room to see patients as for herself; i.e., it is better to keep the examining rooms full than to treat a patient as she would want to be treated.

    I now believe it is good to relieve the strain on health care practitioners by having nurses see and treat certain categories of patients. However, another problem in my case was that the NP could see me but could not discuss anything with me. I felt "processed" and used just to fill that room for a visit. Since breast cancer is so common, the whole approach to it has become opportunist and big business.

    I wish you a successful recovery and much satisfaction in your studies and in your career as a nurse practitioner. I really do value you.


  18. I always had mammograms from age 40 and when I turned 55 was diagnosed with ductal cancer. When in the preliminary stages of what path I would take I was offered an MRI prior to the biopsy for numerous calcifications. I was told that cancer can sometimes hide in these calcifications. So perhaps I should have had a MRI when my breast tissue showed calcifications approx. 3 years prior?

    1. Perhaps; it's hard to know. However, MRI is light years more advanced than mammography. I would never trust mammography alone. It detects breast cancer only after DCIS has progressed for a decade or has become only a solid, very visible, Stage 1 tumor. "Hide in calcifications" means the ductal cancer cells have progressed to calcifications.

  19. Answer: ABSOLUTELY!!! The delay was an example of following the standard of care and the cancer could have gravitated to your lymph node (the first one being right under your arm). Even one positive node would have meant chemotherapy and would have shorted your life expectancy. Chemo is NOT a cure; it only keeps cancer at bay for a varying period of time. My overall point is that we should be told our options and allowed to participate in our own health care decisions. None of these things should have been kept from you three years prior.


  20. Katherine!
    There are wonderful movies available on youtube and netflx such as Cancer: The Forbidden Cures, Food Matters, Forks Over Knives, Gerson Miracle, lectures by Charlotte Gerson, Dr. Nicholas Gonzalez, and many others. They talk about the importance of nutrition to cure degenerative diseases like cancer and diabetes. Please watch them and comment if you have time and desire.

  21. Hi Katherine,

    I am have been referred multiple times by my Gyn to be tested for BRCA gene, because my maternal aunt had breast cancer multiple times and she died of brain cancer, my other maternal aunt had esophageal cancer, my sister had cervical cancer, my mother died of pancreatic cancer. I have not actually had the BRCA test because my insurance will not cover it. Before the breast problems, I have had many gynecological problems. After my second child (35), I had to have a hysterectomy kept my ovaries because of female problems. When I was 36 years old. I had a lumpectomy for a lump in my breast and ever since, I have had a mammogram every year. At 41, I had to have my ovaries removed because I had two huge cysts on both ovaries and everything was stuck together with adhesions. She said it looked like a bomb went off in my abdomen. She decided that since everything was involved and that it may be good to take my ovaries so I would have a lower risk of getting breast cancer if the ovaries were gone. Well, they are gone but not really...because she accidentally left some of it. Don't actually know for sure but I know that I have yet to go through menopause. So, I am still producing hormones like I never had the surgery.

    Every time I have a mammogram, in every one of my reports it has said -- "The tissue of both breasts is heterogeneously dense. This may lower the sensitivity of mammography. There are benign calcifications in both breasts. There are also benign densities in both breasts.” Also, this – “4-8% cancers of the breast are not identifiable by x-ray. A negative report may reinforce the clinical impression. Adenomatous and dense breasts may obscure underlying neoplasm."

    Six months ago, I had a diagnostic mammogram because my gynecologist and GP both felt a lump. After my mammogram they did an ultrasound but it was gone, the mammogram busted the cyst, because they squeezed down on me so hard.

    I just had a mammogram on last week, it hurt so bad. I was hurting for two days later into my chest wall, because they squeezed me so hard I was bruised on the inside. I do not remember mammograms hurting this much. I am wondering if you think I should ask my doctor for a MRI each year as a back-up to the mammogram, since I have densities and calcifications? I worry that might anger the doctor and I do not want to do that. But I just do not want to be blindsided by CANCER as so many have been in the past.

    I would greatly appreciate your input.


    1. Hello CJ:

      Thank you so much for writing me. YES!!! You definitely need to have an MRI scan every year as a back-up to mammography and should have already been getting them. PLEASE don't worry about how you affect your doctor. While they are fumbling around with your issue, it could end up costing you your life! Yes, some mammography techs are too rough and squeeze too hard to try to get a diagnostic mammogram that will show all the way to the chest wall, and some are just plain inexperienced.

      After the actress, Christina Applegate, had early breast cancer and bilateral mastectomy, she set up a foundation to help women like yourself. Please check her web site, (right action for women). There are other organizations that can help you, too, such as W2W, Woman to Woman. I think the BRCA test costs around $500. You should make every effort to get the test, even if you have to borrow the money. There is also the organization, (Are you dense). They are driving the effort to get state-by-state laws passed requiring insurance companies to cover MRI scans for women with dense breasts.

      You need and have the right to talk with your doctor frankly. Print my story and show it to him/her. You should also get on the phone and talk seriously with your insurance company about covering the BRCA test. In fact, I think they would cover it if your doctor talks with them. You are definitely a candidate for it and the MRI scan considering your family history. PLEASE... you have the right to look out for yourself and ask for what you want. Once cancer gets into your lymph nodes (the first node being right under your arm), it's too late. The lymphatic system flushes it to other parts of your body. Chemo will "corral" it for a varying period of time, but it is NOT a cure. It WILL recur in other parts of your body and you will have to repeatedly fight it with chemo. Eventually you will lose the battle. Please take this very seriously. Write me however often you need to with questions. You must look out for yourself. It is better than being bitter and angry later.


    2. Hi Katherine,

      Thanks for the information and the pep talk. I called my insurance company and found out they will cover the BRCA testing as a preventive screening. That is new on the insurance. I am scheduled to be tested today. Today, I received my mammogram report and it still says about the same thing -- "The tissue of both breasts is heterogeneously dense. This may lower the sensitivity of mammography. There are benign scattered calcifications in bilateral breasts. There is post operative scar from prior lumpectomy in the left breast. No significant masses, calcifications, or other findings are seen in either breast. There has been no significant interval change." It is worrisome that the mammogram basically means nothing since I have heterogenously dense breasts.

      I sent my doctor an e-mail yesterday and asked her if she could order me an MRI as a back-up for the yearly mammogram. I didn't receive a response, I guess she is awaiting the response to my BRCA testing.

      I thank you for telling your story. After reading your story and your great advice, I feel a more empowered to take control of my healthcare.

      Thank you again!


    3. I am sorry that I did not reply to your comment earlier. Somehow I did not realize there was a new addition. Thank you so much for engaging in this matter enough to confirm my findings. I hope you have gotten an MRI scan by now. Please let me know. I am not necessarily for a system of government health care for everyone, but the paradox is that our system functions just as if that is what we have. It may or may not have been in my story, but I truly felt as if I were in China as I tried to uncover all of the secrets. Please help m tell other women. We all need to talk. Thank you again for your comment.


  22. Similar "standard of care" BS with regard to my mother's eventually fatal colon cancer. Myriad tests of all kinds didn't find it despite months of agonizing abdominal pain with classic signs of colon cancer including anemia from internal bleeding. After her death we found out about PET scans which show images based on how biologically active that tissue is, of which cancer cells have the highest activity. If they had done a PET scan on her abdomen, it would have shown her insides lit up like a Christmas tree with widespread cancer. But the doctor said it is not "standard of care" to use PET scans for diagnosis, only for follow-up after surgeries - even though all other possible tests had failed to find anything. We asked him why he didn't at least tell us about this so we had the choice to pay for it out-of-pocket. He had no answer to that question.

    1. Please accept my deepest sympathy regarding the loss of your mother. Having lost my own mother, I know it makes your world more lonely. The doctor didn't answer your question, because he bowed to the system--the standard of care and insurance companies--although he could have gone beyond.

      I will try to explain this--and you need to know it--although it is complicated. Our system is streamlined. If your doctor got on the phone to try to arrange for you to pay out of pocket for a PET scan--outside the standard of care and insurers desires--the hospital (or facility) would have argued with him about it. They simply don't want to bother with out of pocket payments. Moreover, deciding on the price you would pay out of pocket would be difficult, because each insurance company "brokers" what price they pay for a particular procedure. In other words, on paper my hospital says an MRI scan costs them about $4,000, but my insurance has it brokered for $1,700. This kind of dickering goes on in yearly contracts between each facility and insurer.

      Also, if a doctor orders a diagnostic based on a plan for you to pay for it out of pocket and then later you decide you want your insurer to cover it, it would set up a conflict that a doctor doesn't want to deal with.

      And, as I said in my story, everything that your doctor does is coded and streamlined from his computer to your insurer. By the tie you leave their office, it has already been done. Doctors' offices hire a whole group of staffers called "coders" whose job is just that. For your insurer to cover it, it would have to be coded a certain way. There is no easy way to code it to indicate that you are paying cash for it. It causes your doctor more trouble than s/he wants to bother with to arrange for you to pay for it.

      All of this is a way of saying that patients need to take advantage of the fact that we can do research online now without having to go to a medical school library. We need to get involved in any health matter affecting us at a given time and SPEAK UP LOUDLY. Please write your own story and share it with your contacts. We all need to know these things. Health care is not the way it seems.

      Thank you for your comment.

  23. Yesterday my wife told me that she felt a lump when she was in the shower. We are trying to find a clinic for her to get into to get a mammogram. Who knows a great clinic in Mesa?

  24. There is a breast cancer clinic at Banner Desert Medical Center and others that come up with a Google search, but I am not personally familiar with one in that area.. Use social media to ask your contacts. If she can feel a lump, it may not even show up on a mammogram. Even if it does, she needs to proceed with an MRI scan and biopsy. DO NOT let them put her off or "keep an eye on it." A lump has been growing for a period of time and needs to be diagnosed ASAP.

  25. P.S. to Mona (above): Another consideration the doctors have is this: if they go outside the standard of care (as in the use of PET scans for original diagnoses) and that finds the cancer, the they have established a recorded precedent and can be faulted or sued for not doing that for another patient. In other words, the whole health care system (meaning insurer-controlled) is 1) TOO profit driven and 2) extremely standardized for a number of purposes, including physician liability. The responsibility really falls upon the patient to be their own advocate. This means they should NOT just "trust their doctor." Patients must educate themselves and insist on what would be in their own interest. That includes getting on the phone and arguing with your insurance company. I cannot emphasize enough that the system is first of all a business--a big business. It is locked up and does not necessarily function according to what is best for you.

  26. I had a very similiar experience with 10 years of dont worry its just microcalcifications to DCIS, surgery. I elected to have lumpectomy after an excrutiating biopsy that was archaic- at a well known Breast Center top hospital. I did tons of research on DCIS online and read blogs and books, pushing my surgery out a few weeks so i could make good decisions. I 65 last year when i had surgery. They also dont tell you about lymphedema, which can be a horrible by product of removing lymphnodes, but better than having cancer. I had to have breast physical therapy to kerp it from turning into a rock, but its ok now. My well regarded surgeon insisted i do radiation , so more research led me to leading DCIS expert dr michael lagios. I paid him to look at my path. slides and make a recommendation. He said at my age 65, it would be statiscally insignificant to do it, and that once you do it, you cant do it again! Instead he rec. alternating breast MRI with mammogram ev 6 months, so i go Jan/June for checkups. My surgeon said it was a mistake and i would be back in her office again. Two of my drs said they were glad i had chosen no rads bec of complications down the road. Do not support the Pink war on breadt cancer, it is a cruel money joke. Take a look at a blog called chrisbeatscancer for his take.
    Hope the best for everyone, take charge of your health!

    1. Thank you for your comment. We all need to share our stories and help each other. I am sorry for your distress and discomfort and am glad you shared it here where other women (21,000 so far) can read it.

      I should go back and mention lymphedema in my story. Fortunately, I had no lymph node involvement. When you do have it, the removal of cancerous lymph nodes can cause the lymphatic system to not "flush" as it is supposed to do and the fluid buildup can cause a great deal of swelling in the arm. Then you have to wear a tight sleeve and take other measures to lessen the swelling.

      I have also heard that you cannot radiate the same area twice. I was advised to have a mastectomy, then follow with Tamoxifen for 5 yrs. instead of chemo or radiation.

      I also know that roughly one-third of lumpectomies recur at some point. However, I think that is largely due to the fact that mammograms "detect" cancerous calcifications or tumors only after they've been present a long time. In other words, there has already been too much cellular activity going on. We all must research and look out for ourselves.

      IF! you have a recurrence, however (yes, I keep using "however"), MRI would detect if as early as POSSIBLE.

      I think what the doctor meant is that radiation would not (statically speaking) extend your life at this point more than not having the radiation. All of these things have been carefully calculated. I commend you for getting involved and for recommending that others do it, too. I wish I had written my story for you to read much earlier, but I wasn't diagnosed until late 2008. My best to you. Please keep me posted.


  27. This comment has been removed by the author.

  28. Nice article, thanks for the information. You give me some idea's. I will bookmark for next reference.

    doctor strange (2016)

  29. In September, 2007, I was diagnosed with Stage 2 DCIS. I had chemotherapy following Radical right breast mastectomy, including removal of 17 lymph nodes. This past week I celebrated the 10 year anniversary of my surgery. I am still on Tamoxifen.

    My breast cancer was self detected following a moderate injury under my right nipple. There is one teeny, tiny difference in my story from those I read here.

    I was denied even nipple reconstruction
    Why? I am a man. Period. End. Full stop.

    My oncologist orders a Mammogram and an MRI annually, six months apart.

    Men who suffer breast cancer need more involvement in this issue. And a lack of equity and transparency need to be fireable offenses.

    Thank you for allowing me a platform to speak. Cancer never leaves my life, in spite of my great success. But, at 72, success is relative.


  30. Thank you so much for sharing this information and I hope you will find other forums to inform men about male breast cancer. I had to narrow my subject down to women and dcis, the most frequent type. Male breast cancer is not as frequent but, like any cancer, it is just as serious once known. I agree with you about fireable offenses. Our whole society is permeated with too much dishonesty and it should be discouraged by dealing with at the lowest possible levels.

  31. Thank you for sharing this wonderful post, its very helpful.
    Mammography Test is very important.

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