Changing the Conversation — Now
The women in the above photo were just two of the over eight hundred attendees at the National Breast Cancer Coalition’s Advocacy Training Conference, which took place this past weekend in Washington, D.C. I caught them during one of our few breaks, resting their tired feet, their conference material in their laps, and no doubt ruminating about some of the startling information we were all trying our best to absorb. Hundreds of conversations like the one above took place during the conference itself, and are continuing in cyberspace via posts, tweets, status updates and blog comments. If there is any truth to that cosmic assertion that a butterfly on one continent changes the weather in another, then the world has shifted on its axis over the last several days. And we’re all going to keep shifting it until all the breast cancer myths and misperceptions have been busted, and we stop dying of this damn disease.
One of our most cherished myths is that early detection saves lives. In fact, we are just lately learning that there is no such animal as early detection. Yet early detection has been a cornerstone of breast cancer awareness for decades, and any discussion that pokes holes in it raises hackles faster than you can say ‘mammogram.’ As such, it requires a complex, careful and level-headed analysis.
1. Screening mammograms only screen, not diagnose.
Surely one of the most ineptly written documents published in 2009 was the new guidelines about breast cancer screening, compiled by the U.S. Preventive Services Task Force. The ferocious controversy it launched among breast cancer advocates, survivors, physicians and radiologists continues to this day. I am one of those women who has been getting annual screening mammograms since age forty. And I am also one of those women whose ductal carcinoma was first detected on one of those screening mammograms. Palpation did not find it. Ultrasound could not see it. But that nasty spray of cancer-carrying granules showed up in my mammary ducts, in a pattern like the branches of a tree, bright and treacherous, on a screening mammogram. A diagnostic mammogram, followed by a stereotactic biopsy, followed by a pathology report, confirmed the diagnosis of rather extensive DCIS. All of which was followed by a partial mastectomy, radiation, and tamoxifen. So, I was naturally inclined in those early days to say that a screening mammogram saved my life. And, to be ruthlessly accurate about it, I was wrong.
I was wrong for the same reasons that the USPSTF Guidelines were so controversial — because I was using the wrong words to describe my experience. More on that later. But when those guidelines came out, I reserved judgment until I could actually read them — all 130-some-odd pages of them, plus a long list of research citations to back them up. And I learned a lot about what they did and did not say. What they did NOT say was that women who are younger than fifty should stop getting mammograms. Nor did they recommend that insurance companies stop paying for mammograms for women under fifty. But you’d never know that from the sound bytes and cursory headlines that were splattered all over the media. What they DID say, albeit inelegantly, was:
The decision to start regular, biennial screening mammography before the age of 50 years should be an individual one and take patient context into account, including the patient’s values regarding specific benefits and harms.
They did NOT say that a woman who finds a lump or a discharge or any other suspicious symptom in her breasts should not have it checked out. And a woman who finds such a lump should NOT have a screening mammogram anyway, but a diagnostic mammogram, which is a different procedure altogether. [See ACR PRACTICE GUIDELINE FOR THE PERFORMANCE OF SCREENING AND DIAGNOSTIC MAMMOGRAPHY.] From the American College of Radiology Practice Guidelines is this definition, which is crucial to keep in mind.
Diagnostic mammography is a radiographic examination performed to evaluate patients who have signs and/or symptoms of breast disease, imaging findings of concern, or prior imaging findings requiring specific follow-up.
I won’t go so far as to say that reading the guidelines brought on an exacerbation of my cancer-related fatigue. But, once I’d slogged my way through them, I was too tired to write about them back then. In any case, what is not strictly true is that my last screening mammogram saved my life. What may have saved my life was getting the DCIS surgically removed. However, what may also be true, according to more recent research findings, is that my DCIS may never have developed into invasive breast cancer.
2. DCIS — Are we over-treating it?
One thing that is true of screening mammograms is that they find ductal carcinoma in situ that would otherwise likely go undetected for years. The trouble with this is that neither ductal nor lobular carcinoma in situ necessarily leaves the mammary ducts or lobes to become invasive breast cancer. But sometimes they do. And the trouble with that is we do not know how to tell which ones will stay put and remain essentially benign, and which ones will invade the rest of our breasts and lymph nodes. There are studies that suggest that from 14 to 53% of in-situ ductal carcinomas may turn into invasive breast cancers within ten or more years. Which means that many of them may not. But because we can’t yet tell the difference, women like myself currently have to undergo surgery and/or radiation and/or hormone therapy in order to prevent the possible development of invasive disease. And as such, there are conceivably many women who endure all that needlessly. Oh, goodie.
3. Breast Self-Exams — the formal kind.
Ah, yes, good ol’ BSE. Another massive storm of misconception has arisen on this hallowed subject, also related to the USPSTF’S 2009 Guidelines.
The guidelines did NOT say that women should stop feeling their breasts. What it DID report, albeit buried within its copious pages, was that formal breast self-exam, the kind we were supposed to do once a month, according to a particular set of instructions, was found to be no more effective than the informal palpation of our breasts that occurs in daily life while showering or dressing ourselves. And if you do find something, then you should have it checked out. And once again, it’s not a screening mammogram that you will be getting, but a diagnostic mammogram, plus any other diagnostic tests deemed appropriate.
4. Mammography is far from perfect.
Most of us have heard by now that mammography is often ineffective as a screening or diagnostic tool for women with dense or fibrous breast tissue — the kind of tissue many of us have before menopause. Nor are other tools perfect. Ultrasounds and breast MRI’s have their uses and drawbacks as well. Breast thermography, a digital infrared imaging tool, showed a great deal of promise when it was first developed, but thus far, research has indicated that it is useful only as an adjunct to mammography in confirming cancerous lesions. Dr. Deborah Rhodes has been working on a new imaging technique called molecular breast imaging (MBI). So far, it demonstrates much more accuracy and specificity than mammography, especially for dense breast tissue, but at present, it requires higher than acceptable doses of radiation to work effectively. Dr. Rhodes and her team continue to do research in order to develop a safer version of MBI.
Clearly, we still need more and better tools.
5. Cancer in your breast is not what kills you.
Finally, we come to the miserable and overriding truth about breast cancer. It’s not the cancer in our breasts that kills 110 women every day in the U.S. alone, that has taken the lives of around 40,000 American women and men every year for the past twenty years, that killed nearly half a million women worldwide in 2008 alone, with no signs of stopping. What caused these deaths is metastatic breast cancer (MBC), cancer that has spread from the breasts to the brain, the bones, the liver, the lungs, the skin and many other parts of the body.
And here’s the salient point: The treatment that all of us endure when we are diagnosed with breast cancer is not a cure for anything, but an attempt to prevent us from developing MBC.
Currently, in the U.S. alone, there are well over 150,000 women living with metastatic disease. Treatment may slow down its progression, but so far there is nothing to stop metastatic breast cancer. Nothing. Every one of these women will eventually succumb. Meanwhile, we have made precious little progress in fighting, eliminating, preventing or even understanding metastatic breast cancer. There are not even accurate statistics about women and men living with MBC. So-called survival rates for breast cancer are often skewed because they include statistics for all stages of breast cancer, for only five years after initial diagnosis.
In addition, one of the things we have begun to understand is that breast cancer does not start as one localized ‘rogue’ cell that goes awry. Researchers have found that dormant cancer cells exist throughout our bodies, developing into active cancer lesions through a complex process of genetic mutation and changes in the microenvironment around these particular cells that is still poorly understood. Some of these mutations and micro-changes can even be caused by cancer treatment itself. But by the time one or more of these cells has been switched on and grows into an active lesion large enough to be palpated or detected by a screening mammogram or a diagnostic image, it has already been operating in our bodies for several years. Several years. But right now, today, we cannot find these cancers when they are just beginning. Every day, researchers are learning more about how these dormant cancer cells behave and what influences them to become active. In the future, this knowledge may enable us to stop the mutations or mitigate the microenvironments in our bodies that initiate their growth in the first place. But for now, we are forced to wait until long after that process has started, when cancer tumors are too big for our current diagnostics to miss.
At present, there is no such thing as truly ‘early’ detection. And there is no cure for the metastatic disease that kills us. Meanwhile, most of the millions of dollars spent on research does not address MBC. Money is still spent on teaching women about BSE’s and providing mammograms for young women, whose dense breast tissue can render mammography ineffective. Thousands of breast cancer advocates organize public events based on the assumption that we’ve made significant progress against breast cancer, yet obscure or avoid the ugly truth of metastatic disease. There’s something wrong with this picture. There’s something wrong with much of the public conversation about breast cancer awareness. Too much of what passes for breast cancer awareness is unaware.
Let’s change that.
For more information about the reality of breast cancer, and what to do about, you may visit this link: Deadline 2020 — Why now?
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