Wednesday, June 4, 2014
Comment on comment
Thank you for your comment. This goes to show that all of us "laypersons" need to educate ourselves better and not just "trust our doctors." They keep too many secrets for insurance companies and don't want to bother to go against them. The insurance industry largely sets the standard of care, but doctors CAN go beyond that standard if they choose to. I am so sorry for your experience and loss. Please help me educate other people about this matter in general. Thank you.
Katherine
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
Katherine Langley
Copyrighted 2/3/2008
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
Katherine Langley
Copyrighted 2/3/2009
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.)
Katherine Langley
Copyrighted 2/3/2009
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.
Katherine Langley
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
Katherine Langley
Copyrighted 2/3/2009
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
Katherine Langley
Copyrighted 2/3/2009
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
Katherine Langley
Copyrighted 2/3/2009
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.
Katherine Langley
Copyrighted 2/3/2009
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
Katherine Langley
Copyrighted 2/3/2009
“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.
BREASTCANCER.org, “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.
RadiologyToday.net, “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.
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
Katherine Langley
Copyrighted 2/3/2008
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
Katherine Langley
Copyrighted 2/3/2009
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.)
Katherine Langley
Copyrighted 2/3/2009
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.
Katherine Langley
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
Katherine Langley
Copyrighted 2/3/2009
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
Katherine Langley
Copyrighted 2/3/2009
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
Katherine Langley
Copyrighted 2/3/2009
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.
Katherine Langley
Copyrighted 2/3/2009
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
Katherine Langley
Copyrighted 2/3/2009
“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.
BREASTCANCER.org, “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.
RadiologyToday.net, “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.
Subscribe to:
Posts (Atom)