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	<description>...especially the metastatic kind</description>
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		<title>MBC: &#8216;A Constant State of Hopeful Dread&#8217;</title>
		<link>http://ihatebreastcancer.wordpress.com/2012/02/18/mbc-a-constant-state-of-hopeful-dread/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2012/02/18/mbc-a-constant-state-of-hopeful-dread/#comments</comments>
		<pubDate>Sat, 18 Feb 2012 12:57:34 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Breast Cancer Awareness]]></category>
		<category><![CDATA[breast cancer awareness day]]></category>
		<category><![CDATA[breast cancer pamphlets]]></category>
		<category><![CDATA[breast cancer patients]]></category>
		<category><![CDATA[lumbar vertebrae]]></category>
		<category><![CDATA[metastatic breast cancer]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=850</guid>
		<description><![CDATA[Here is a post I wrote last October for AZ Connections: At a 2009 breast cancer seminar, I met two MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me. In 2008, Shirley and her fellow [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=850&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><em>Here is a post I wrote last October for <a href="http://azhealthconnections.com/2011/10/13/katherine%E2%80%99s-story-living-with-metastatic-breast-cancer/">AZ Connections:</a></em></p>
<p>At a 2009 breast cancer seminar, I met two <a href="http://www.mbcn.org">MBCN</a> volunteers: Joani Gudeman and <a href="http://http://www.whitehouse.gov/champions/fight-breast-cancer/shirley-mertz">Shirley Mertz</a>. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.</p>
<p>In 2008, Shirley and her fellow volunteer Susan Davis launched MBCN’s drive to formally establish <a href="http://mbcn.org/get-involved">October 13 as National Metastatic Breast Cancer Awareness Day</a>. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.</p>
<p>“It is critical to the thousands suffering from Stage 4 illness and to the general public that the voices of metastatic breast cancer patients be heard,” wrote Joani.</p>
<p>I would like to add my voice to that chorus.</p>
<p>I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer.</p>
<p>The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”</p>
<p>You know how when you are going up in an elevator and sometimes it feels like the floor is dropping out from beneath your feet? That feeling lingered with me for weeks.</p>
<p>My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”</p>
<p>Not very helpful to my particular situation.</p>
<p>I kept hunting through the shelves, the oncologic equivalent of Goldilocks sampling each bear’s porridge. Finally, I found a brochure that was just right:<a href="http://mbcn.org/education/category/diagnosis/"> “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”</a></p>
<p>This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”</p>
<p>The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”</p>
<p>That cold and unspoken fear had permeated every cranny of my being for weeks.</p>
<p>“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”</p>
<p>Those few sentences gave me a lot of hope.</p>
<p>It’s been two years since my diagnosis. My treatment has been mild and I am very fortunate to be stable. But it’s a strange existence. The late <a href="http://mbcn.org/get-involved/details/my-story-susan-davis/">Susan Davis,</a> a tireless volunteer with the MBCN, said it best. Susan lived with mets for almost a dozen years. Although she endured progressively more grueling treatments, she said ultimately even the harshest side effects weren’t as difficult as the mental fight.</p>
<p>“I live in a constant state of hopeful dread,” she wrote. “I am hopeful I will be stable. I dread that my next test will show I am not.”</p>
<p>My mother died from<a href="http://www.ibcsupport.org"> inflammatory breast cancer</a> a few weeks after I graduated from high school. Mom had no support group and practically no resources to cope with this rare disease. I have learned so much from other patients. I am grateful to have instant access to them via the Internet. Volunteering with the <a href="http://www.mbcn.org">Metastatic Breast Cancer Network</a> and other advocacy groups is very important to me. I want to help other patients and their families. I want the general public to be better informed about this disease. I want to make a difference.</p>
<p>The best thing you can do for someone with metastatic breast cancer is to be there for them—not just when they are first diagnosed, but for the long haul.</p>
<p>“I hate when people feel sorry for me and give me that look,” says one of my friends who has metastatic breast cancer. “We don’t have to talk about cancer all the time. Normalcy is great! I am still here—with hair or even bald. I’m here. Some days are harder than others, but I try to live as much as possible</p>
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		<title>Can&#8217;t See the Metastatic Forest for the Breast Cancer Screening Trees</title>
		<link>http://ihatebreastcancer.wordpress.com/2012/02/04/cant-see-the-metastatic-forest-for-the-breast-cancer-screening-trees/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2012/02/04/cant-see-the-metastatic-forest-for-the-breast-cancer-screening-trees/#comments</comments>
		<pubDate>Sat, 04 Feb 2012 16:20:45 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[American Cancer Society]]></category>
		<category><![CDATA[breast cancer]]></category>
		<category><![CDATA[David Gorski]]></category>
		<category><![CDATA[Komen]]></category>
		<category><![CDATA[Len Lichtenfeld]]></category>
		<category><![CDATA[mammograms]]></category>
		<category><![CDATA[National Breast Cancer Coalition]]></category>
		<category><![CDATA[Orac]]></category>
		<category><![CDATA[Otis Brawley]]></category>
		<category><![CDATA[Planned Parenthood]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=837</guid>
		<description><![CDATA[Others can speak far more knowledgeably and eloquently about the recent pink ribbon funding controversy. My concern is that we are missing the forest for the trees. Setting aside the funding issue, let&#8217;s consider the truth worth of these exams. Screening and self exams can be helpful. But let&#8217;s not kid ourselves. These tests are [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=837&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p style="text-align:center;"><a href="http://ihatebreastcancer.wordpress.com/2012/02/04/cant-see-the-metastatic-forest-for-the-breast-cancer-screening-trees/henryfordfasterhorses/" rel="attachment wp-att-838"><img class="aligncenter  wp-image-838" title="HenryFordfasterhorses" src="http://ihatebreastcancer.files.wordpress.com/2012/02/henryfordfasterhorses.png?w=600&#038;h=60" alt="" width="600" height="60" /></a></p>
<p style="text-align:left;">Others can speak far more knowledgeably and eloquently about the recent pink ribbon funding controversy. My concern is that we are missing the forest for the trees. Setting aside the funding issue, let&#8217;s consider the truth worth of these exams. Screening and self exams can be helpful. But let&#8217;s not kid ourselves. These tests are frankly not that great.</p>
<div>&#8220;Women are regularly told that screening mammograms save lives,&#8221; says the <a href="http://www.breastcancerdeadline2020.org/know/31-myths-and-truths/">National Breast Cancer Coalition</a>. &#8220;Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. Since evidence does not currently significantly support, nor disprove the effectiveness of this test, receiving a screening mammogram should be a personal choice, not a medical mandate.&#8221;*</div>
<p style="text-align:left;">Essentially, we have better imaging technologies. The  average size lump found by first mammogram is about the size of a dime (~1.5 cm) but even tumors as small as pencil erasers can be seen.</p>
<p style="text-align:left;">The real problem is we don&#8217;t know WHAT we are looking at.</p>
<p style="text-align:left;">We don&#8217;t know  WHY some tumors spread beyond the breast.</p>
<p style="text-align:left;">We don&#8217;t know HOW to stop metastatic growth.</p>
<p style="text-align:left;">We are seeing more and more breast cancers earlier and earlier. In some cases, people are overtreated: It&#8217;s the oncological equivalent of using a shotgun to kill an ant. Many women may be diagnosed and treated for a cancer growing so slowly it <a href="http://www.reuters.com/article/2011/10/25/us-mammograms-idUSTRE79O4WQ20111025">might never have caused any symptoms or threatened their lives</a>.</p>
<p style="text-align:left;">As surgeon/scientist/blogger <a href="http://scienceblogs.com/insolence/2010/06/cancer_overdiagnosis_and_overtreatment.php">David Gorski, explains</a>, &#8220;&#8230; for mammographically-detected small tumors, almost always those detected by screening mammography, it&#8217;s not so clear whether all of these need to be treated. Overdiagnosis is being increasingly appreciated as a significant problem, and, indeed, <a href="http://scienceblogs.com/insolence/2009/07/overdiagnosis_of_breast_cancer_due_to_ma.php">may account for as many as 1 in 3 breast cancers</a> detected by screening mammography (although more common estimates are on the order of 20%). There is even evidence&#8211;not bulletproof by any means, but intriguing evidence&#8211;that as many as 20% of mammographically detected tumors <a href="http://scienceblogs.com/insolence/2008/12/the_spontaneous_regression_of_breast_can.php">may actually spontaneously regress</a>.&#8221;</p>
<p style="text-align:left;">Screening is just one tool. We need to look at the bigger picture. Unfortunately, the under treated are always with us:</p>
<p style="text-align:left;">“If we did what we already know, at least 37% of cancer deaths in people between the ages of 27 and 64 could be avoided right now,” writes <a href="http://www.cancer.org/AboutUs/DrLensBlog/post/2011/06/17/Cancer-Facts-and-Figures-2011-Poverty-is-a-Carcinogen-Does-Anyone-Care.aspx">ACS’s Dr. Len Lichtenfeld</a>. “Where is the national conversation about the fact that poverty is a carcinogen? Are you talking about it? Is the media talking about it? If the silence is deafening, then perhaps you have your answer. &#8220;</p>
<p style="text-align:left;">Finally, as much as I have a vested interest in breast cancer research, it shouldn&#8217;t come at the expense of addressing other diseases. I concur with ACS&#8217;s Dr. Otis Brawley:  &#8221;The wisest advocacy for cancer science is support for more money for cancer research in general and support for funding the best science and encouraging scientific investigators to maintain an open mind,&#8221; <a href="http://www.cancer.org/Cancer/News/ExpertVoices/post/2011/08/09/Funding-the-Best-Science-Helps-Us-All.aspx">says Brawley</a>.  &#8221;Scientists must look for additional applications of findings beyond just their cancer of interest.&#8221;</p>
<blockquote><p>You&#8217;ve probably heard of the chemotherapy drug Herceptin, which is used to treat about 25% of breast cancer patients. It was developed to treat neuroblastomas and gliomas, both cancers of the nervous system, but it didn&#8217;t work for those cancers.<br />
Another example, cisplatin, was first developed as a treatment for testicular cancer.  It is now the most commonly used chemotherapy in the treatment of lung cancer and ovarian cancer. It is also used in some breast cancer treatments. The drug oxalaplatin used in colon cancer therapy was developed from cisplatin.  So testicular cancer research benefited a number of other cancers.<br />
Similarly, the drug leuprolide was developed in the mid-1980s as a hormonal treatment for metastatic prostate cancer. This drug has since been FDA-approved for not only treatment of metastatic prostate cancer, but also premenopausal breast cancer, endometriosis, and precocious puberty.</p>
<p>The number of drugs that were developed for one disease but ended up being useful in others  is legendary and goes beyond cancer.</p></blockquote>
<p style="text-align:left;"><em>*Women age 40 and older should have mammograms every 1 to 2 years. Women who are at higher than average risk of breast cancer should talk with their health care providers about whether to have mammograms before age 40 and how often to have them.</em></p>
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		<slash:comments>10</slash:comments>
	
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		<title>How a Graphic Designer Created an Awesome Global Breast Cancer Awareness Campaign</title>
		<link>http://ihatebreastcancer.wordpress.com/2012/02/04/how-a-graphic-designer-created-an-awesome-global-breast-cancer-awareness-campaign/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2012/02/04/how-a-graphic-designer-created-an-awesome-global-breast-cancer-awareness-campaign/#comments</comments>
		<pubDate>Sat, 04 Feb 2012 05:22:22 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Corrine Beaumont]]></category>
		<category><![CDATA[Global Breast Cancer Awareness]]></category>
		<category><![CDATA[Gujarati]]></category>
		<category><![CDATA[India Breast Cancer Education]]></category>
		<category><![CDATA[Khambhati Charity International (KCI)]]></category>
		<category><![CDATA[Lemonland.org]]></category>
		<category><![CDATA[Worldwide Breast Cancer]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=831</guid>
		<description><![CDATA[Corrine Ellsworth Beaumont   is using her design talents to educate people around the globe about  breast cancer symptoms and treatment. Her Worldwide Breast Cancer  lemon-centric visuals have been used in North America, Europe and Asia to communicate detailed information about the signs of breast cancer. They can be displayed publicly without censorship and have been translated into many [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=831&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<div class="wp-caption alignnone" style="width: 470px"><a href="http://www.worldwidebreastcancer.com"><img title="Lemonland in India" src="http://www.worldwidebreastcancer.com/wp-content/uploads/day-8-14.jpeg" alt="" width="460" height="613" /></a><p class="wp-caption-text">Women in Balesa, India reading the Worldwide Breast Cancer leaflets in the language of Gujarati.</p></div>
<p><a href="http://breastcancerproject.wordpress.com/my-story/">Corrine Ellsworth Beaumon</a><a href="http://breastcancerproject.wordpress.com/">t </a>  is using her <a href="http://designerfromidaho.com/">design talents</a> to educate people around the globe about  breast cancer symptoms and treatment. Her <a href="http://www.lemonland.org/">Worldwide Breast Cancer </a> lemon-centric visuals have been used in North America, Europe and Asia to communicate detailed information about the signs of breast cancer. They can be displayed publicly without censorship and have been translated into many languages. (See my earlier post <a href="http://ihatebreastcancer.wordpress.com/2011/04/21/show-us-your-lemons/">here</a>.)</p>
<p>In partnership with <a href="http://breastcancerawarenessgujarat.wordpress.com/">Khambhati Charity International</a> (KCI), Worldwide Breast Cancer now has materials available in Gujarati, one of the many languages spoken in India.  &#8221;Thanks to Jayshri Rami and her translator from KCI, as well as several university student translators at Kingston University, London for helping to provide the translations,&#8221; Beaumont says in a recent <a href="http://www.worldwidebreastcancer.com/mayorblog/">blog post</a>.  &#8221;The beautiful typeface &#8216;Kohinoor Gujarati&#8217; was donated by the <a href="http://www.indiantypefoundry.com/">Indian Type Foundry</a> for the project.&#8221;</p>
<p>As part of her doctoral project, Beaumont asked 250 women about their knowledge of breast cancer detection and screening.  “Many did not know the signs of breast cancer or what a lump felt like.,” she says “Collaborating with oncologists, radiologists, breast cancer survivors, nurses and screening technicians, the message was developed and designs were created to communicate concepts that patients [previously] didn’t understand.”</p>
<p>You can <a href="http://www.worldwidebreastcancer.com/breast-cancer-leaflet-download/">download free posters and brochures</a> likes this one:</p>
<div class="wp-caption alignnone" style="width: 670px"><a href="http://www.worldwidebreastcancer.com/wp-content/uploads/leafletcoverlrgweb-660x509.jpg"><img class="alignnone" title="Free Lemonland Brochure" src="http://www.worldwidebreastcancer.com/wp-content/uploads/leafletcoverlrgweb-660x509.jpg" alt="" width="660" height="509" /></a><a title="Free Brochure" href="http://www.worldwidebreastcancer.com/wp-content/uploads/leafletcoverlrgweb-660x509.jpg"><img class=" " title="Lemonland" src="http://www.worldwidebreastcancer.com/wp-content/uploads/leafletcoverlrgweb-660x509.jpg" alt="" width="660" height="509" /></a><p class="wp-caption-text">See http://www.worldwidebreastcancer.com/breast-cancer-leaflet-download/ to download a low-res brochure</p></div>
<p>Beaumont&#8217;s goal was to use her design skills to reach those who were afraid, embarrassed, uninterested or overwhelmed to learn about breast cancer.</p>
<p>I think she is succeeding!</p>
<p>Beaumont would like to see Worldwide Breast Cancer <a href="http://breastcancerproject.wordpress.com/">become a global organization and attract funding to expand its efforts.</a> “By using a friendly metaphor to open the discussion, the opportunities to communicate go beyond language, education and culture and truly have the potential to connect globally,” she says.</p>
<div class="wp-caption alignnone" style="width: 227px"><a href="http://www.worldwidebreastcancer.com/wp-content/themes/duotive-two/includes/timthumb.php?src=/wp-content/uploads/2010/12/pits.jpg&amp;h=217&amp;w=217&amp;zc=1&amp;q=100"><img class="  " title="Lemonland pits" src="http://www.worldwidebreastcancer.com/wp-content/themes/duotive-two/includes/timthumb.php?src=/wp-content/uploads/2010/12/pits.jpg&amp;h=217&amp;w=217&amp;zc=1&amp;q=100" alt="" width="217" height="217" /></a><p class="wp-caption-text">See http://www.worldwidebreastcancer.com/myths/ for additional educational materials.</p></div>
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			<media:title type="html">Lemonland in India</media:title>
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		<title>Stuff People Say to People With Metastatic Breast Cancer</title>
		<link>http://ihatebreastcancer.wordpress.com/2012/01/20/stuff-people-say-to-people-with-metastatic-breast-cancer/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2012/01/20/stuff-people-say-to-people-with-metastatic-breast-cancer/#comments</comments>
		<pubDate>Fri, 20 Jan 2012 15:41:18 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[breast cancer]]></category>
		<category><![CDATA[breast cancer survivor]]></category>
		<category><![CDATA[inflammatory breast cancer]]></category>
		<category><![CDATA[Jenny Saldana]]></category>
		<category><![CDATA[Linda Nieves-Powell]]></category>
		<category><![CDATA[Molly Ivins]]></category>
		<category><![CDATA[Stuff People Say About Breast Cancer]]></category>
		<category><![CDATA[the happy cancer chick]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=819</guid>
		<description><![CDATA[Pundit Molly Ivins died of inflammatory breast cancer at age 62 in 2007. &#8220;One of the first things you notice is that people treat you differently when they know you have [breast cancer],&#8221; she wrote. &#8220;The hushed tone in which they inquire, &#8220;How are you?&#8221; is unnerving. If I had answered honestly during 90% of [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=819&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<span style="text-align:center; display: block;"><a href="http://ihatebreastcancer.wordpress.com/2012/01/20/stuff-people-say-to-people-with-metastatic-breast-cancer/"><img src="http://img.youtube.com/vi/0_7JJrU9HUg/2.jpg" alt="" /></a></span>
<p>Pundit Molly Ivins died of <a href="http://www.eraseibc.com/about.html">inflammatory breast cancer</a> at age 62 in 2007.</p>
<p>&#8220;One of the first things you notice is that people treat you differently when they know you have [breast cancer],&#8221; <a href="http://www.time.com/time/magazine/article/0,9171,201917,00.html#ixzz1j7dqd5DQ">she wrote.</a> &#8220;The hushed tone in which they inquire, &#8220;How are you?&#8221; is unnerving. If I had answered honestly during 90% of the nine months I spent in treatment, I would have said, &#8216;If it weren&#8217;t for being constipated, I&#8217;d be fine.&#8217;&#8221;</p>
<p>In a similar vein, actress, writer and early stage breast cancer survivor<a href="http://jennysaldana.com/"> Jenny Saldana</a> recently teamed with <a href="http://www.happycancerchick.com/">Linda Nieves-Powell</a> to create &#8220;<a href="http://www.youtube.com/watch?v=0_7JJrU9HUg&amp;feature=youtu.be">Sh*t Girls Say to Girls With Breast Cancer.&#8221;</a> It&#8217;s funny because it&#8217;s true&#8230;if you have breast cancer, you will have heard at least one of these clueless comments. That being said, I am sure that prior to my own diagnosis I made some of these same comments to others. Well, as Dear Abby used to say, 40 lashes with a wet noodle.</p>
<p>I should stress that in talking to other cancer patients, a spirit of tolerance and understanding  prevails. It&#8217;s not easy to know what to say and in most cases, the responses are truly heartfelt if often unintentionally hilarious.</p>
<p>Saldana and Nieves-Powell show great comic skill and creativity in this clip. As in <a href="http://www.youtube.com/watch?v=MzxkoAFTf-4">similarly titled efforts</a>, the actress is shown in various settings (getting something from the fridge, at the wheel of her car,) as she recites comments  such as &#8220;You&#8217;ll be fine,&#8221; and &#8220;It&#8217;s because you don&#8217;t have children.&#8221;</p>
<p>Don&#8217;t be put off by the title. It&#8217;s just a play on &#8220;Sh*t My Dad Says,&#8221; there is no cussing&#8211;it&#8217;s very funny!</p>
<p>I hope they will consider doing a similar piece specifically for people with metastatic breast cancer. My suggestions would include:</p>
<ul>
<li>Well, you never know. You could get hit by a bus.</li>
<li>They don&#8217;t seem to be doing much for you.</li>
<li>Sheryl Crowe says it&#8217;s from drinking out of plastic water bottles, especially if they have been sitting in the sun.</li>
<li>Have you tried mistletoe?</li>
</ul>
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			<media:title type="html">katherinembc</media:title>
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		<title>Exciting MBC drug developments from SABC</title>
		<link>http://ihatebreastcancer.wordpress.com/2011/12/08/exciting-mbc-drug-developments-from-sabc/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2011/12/08/exciting-mbc-drug-developments-from-sabc/#comments</comments>
		<pubDate>Thu, 08 Dec 2011 15:06:23 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=766</guid>
		<description><![CDATA[Kudos to  Suzanne Hebert. Alert readers will remember that Suzanne, my fellow MBCN member, was featured in a NY Times article this past January. That article explained the realities of living with MBC. I know several people who forwarded it to others and said &#8220;This is what I have, this is my story.&#8221; Suzanne is [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=766&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>Kudos to  Suzanne Hebert.</p>
<p>Alert readers will remember that Suzanne, my fellow <a href="http://www.mbcn.org">MBCN</a> member, was featured in a NY Times article this past January. That <a href="http://www.heraldtribune.com/article/20110118/znyt04/101183004">article</a> explained the realities of living with MBC. I know several people who forwarded it to others and said &#8220;This is what I have, this is my story.&#8221;</p>
<p>Suzanne is back in the news today as part of some exciting developments announced at this year&#8217;s SABC:</p>
<p>Here is the WSJ story:</p>
<p><a href="http://abcn.ws/vVeIs6">Suzanne Hebert, MBCN VP, reports good results from her Afiinitor trial.</a></p>
<p><a href="http://online.wsj.com/article/SB10001424052970204319004577084640699045430.html?mod=WSJ_hp_LEFTTopStories">http://online.wsj.com/article/SB10001424052970204319004577084640699045430.html?mod=WSJ_hp_LEFTTopStories</a></p>
<p>And here is the story from ABC News:</p>
<p><a href="http://abcnews.go.com/WNT/video/breast-cancer-drug-breakthrough-15109167?tab=9482931&amp;section=1206835&amp;playlist=1363742">http://abcnews.go.com/WNT/video/breast-cancer-drug-breakthrough-15109167?tab=9482931&amp;section=1206835&amp;playlist=1363742</a></p>
<p>Afinitor is an exciting* development for people with hormonal receptor-positive breast cancer who have not responded to initial hormonal therapy.</p>
<p>*Exciting being a relative term. If your relative gets 7 more months out of this drug, yes, that is exciting.</p>
<p>According to Reuters: Novartis AG&#8217;s Afinitor, taken with a hormonal therapy from Pfizer, more than doubles the time women with a type of advanced breast cancer live without their disease getting worse.</p>
<p>Women given Afinitor with Pfizer&#8217;s estrogen-blocker Aromasin (aka exemestane), had progression-free survival (PFS) of more than seven months vs. those only given the hormonal treatment.</p>
<p>The study findings represent an additional five months of follow-up data and come on top of the initial BOLERO-2 results that were presented at the European Multidisciplinary Cancer Congress (EMCC) in Stockholm in September.</p>
<p>Afinitor targets mTOR, a protein that acts as an important regulator of tumor cell division, blood vessel growth and cell metabolism.</p>
<p>The hormone oestrogen promotes the growth of about two-thirds of breast cancers and hormonal therapies such as Aromasin, which block the effect of oestrogen or reduce its levels, are used to treat these hormone receptor-positive breast cancers.</p>
<p>But many breast cancer patients, and nearly all those with advanced forms of the disease where it has spread to other parts of the body, become resistant to hormonal therapy.</p>
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			<media:title type="html">katherinembc</media:title>
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		<title>Maggie Daley: She Did It Her Way</title>
		<link>http://ihatebreastcancer.wordpress.com/2011/11/26/maggie-daley-she-did-it-her-way-2/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2011/11/26/maggie-daley-she-did-it-her-way-2/#comments</comments>
		<pubDate>Sat, 26 Nov 2011 22:02:18 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=749</guid>
		<description><![CDATA[Maggie Daley (center) surrounded by former athletes and other members of the Chicago 2016 delegation in Copenhagen in September 2009; AP Photo/Matt Dunham I was sorry to see Maggie Daley, wife of Chicago&#8217;s former mayor, died this past Thursday. Daley, 68, was diagnosed with breast cancer in 2002. She had bone, liver and lung mets. [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=749&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><img src="http://chicagoist.com/attachments/Marcus%20Gilmer/2009_12_03_maggie.jpg" alt="" /></p>
<p><em>Maggie Daley (center) surrounded by former athletes and other members of the Chicago 2016 delegation in Copenhagen in September 2009; AP Photo/Matt Dunham</em></p>
<p>I was sorry to see Maggie Daley, wife of Chicago&#8217;s former mayor, died this past Thursday. Daley, 68, was diagnosed with breast cancer in 2002. She had bone, liver and lung mets.</p>
<p>“Certainly she had a disease that was sensitive to a variety of different therapies,&#8221;  said Dr. William Gradishar, director of Northwestern Memorial Hospital’s Maggie Daley Center for Women’s Cancer Care in a <a href="http://www.suntimes.com/news/metro/9061734-418/medical-miracle-maggie-daley-lived-long-time-for-breast-cancer-patient.html">Sun-Times</a> article. &#8220;She had perseverance — that was an element that can’t be underestimated. Mixed in there was some component of things we don’t understand. The end result was she had a long survival.”</p>
<p><a href="http://www.suntimes.com/6260510-417/maggie-daley-dies.html">As the Sun Times reported: </a>First diagnosed with cancer in June 2002, Mrs. Daley more than tripled the average life expectancy for patients diagnosed with the disease in which cancer cells spread beyond the breast and lymph nodes. In July 2006 she had surgery to remove a tumor in her right breast. In April 2009, she underwent a biopsy of a lesion on her spine, a sign that the cancer had spread to the bone. In March 2010, a foot-long titanium rod was inserted in her right leg to support the bone, weakened by radiation treatments.</p>
<p>Maggie Daley dealt with cancer as she did with public life: on her own terms. She was a private person. She gave her time to the city and many charitable programs, especially involving children and the arts.</p>
<p>But, just as she reserved Sunday as a family day, Mrs. Daley kept most of her cancer issues to herself. If she had to attend a public event on crutches, in a wheelchair or using a walker, she did. She seldom commented on her health.  She showed many people it was possible to have an incurable disease and still carry on.</p>
<p>I never met Mrs. Daley. From television and newspaper reports, however, I gained glimpses of her poise.</p>
<p>I am sure many reporters and well meaning people gave her &#8220;The Look&#8221; while asking &#8220;How are you&#8230;.really?&#8221;</p>
<p>I can&#8217;t imagine many people made the same mistake twice. In one print interview, Mrs. Daley offered a polite &#8220;Just fine&#8221; type answer, and deftly changed the subject.</p>
<p>When I was diagnosed with metastatic breast cancer in 2009, I felt like a fugitive.  I was hiding from a disease I fully expected to find me soon and do its worst.</p>
<p>In September 2009, I saw a picture of Maggie Daley leading a delegation of  Olympic athletes to Copenhagen. Copenhagen! I only had a small volume of bone mets and I was walking on eggshells.</p>
<p>Maggie Daley had bone, liver and lung mets and she wasn&#8217;t sitting around feeling sorry for herself. She wasn&#8217;t just marking time, waiting for cancer to come get her.</p>
<p>She looked pretty damn good.</p>
<p>If she could could have metastatic breast cancer and still have some kind of life, well, maybe I could, too.</p>
<p>Mrs. Daley&#8217;s official mission failed&#8211;the Olympic selection committee rejected Chicago&#8217;s bid. But she inspired me and countless others&#8211;so it did succeed on that level.</p>
<p>Maggie Daley also inspired Shirley Mertz, my fellow <a href="http://www.mbcn.org">Metastatic Breast Cancer Network </a>Volunteer.  Reminding us that much of the focus on breast cancer goes to prevention and screening, Shirley <a href="http://www.chicagotribune.com/news/local/ct-met-maggie-daley-cancer-survivors-20111127,0,7338940.story">told a Tribune reporter</a> that Daley&#8217;s case shows that more research must be done on treating metastatic cancer, which is what kills 40,000 women a year.</p>
<p>Noting Daley&#8217;s influence on her husband&#8217;s city beautification program, Mertz added, &#8220;When I see those pink tulips come up along <a id="PLGEOTMRM000001" title="Michigan Avenue" href="http://www.chicagotribune.com/topic/us/illinois/cook-county/chicago/michigan-avenue-PLGEOTMRM000001.topic">Michigan Avenue</a> next year, I&#8217;ll think of her.&#8221;</p>
<blockquote><p>&#8220;Maggie reminds us — everybody has to decide what they want to do with the time they have.&#8221;</p>
<p>&#8211;Shirley Mertz, board member, <a href="http://www.mbcn.org">MBCN</a></p></blockquote>
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			<media:title type="html">katherinembc</media:title>
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		<title>Avastin: The Last Word</title>
		<link>http://ihatebreastcancer.wordpress.com/2011/11/20/avastin-the-last-word/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2011/11/20/avastin-the-last-word/#comments</comments>
		<pubDate>Sun, 20 Nov 2011 20:16:56 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[avastin]]></category>
		<category><![CDATA[FDA]]></category>
		<category><![CDATA[mesastatic breast cancer]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=739</guid>
		<description><![CDATA[The FDA has announced that bevacizumab (Avastin) is no longer approved for the treatment of breast cancer. The Genentech drug retains its indications for colon, lung, kidney, and brain cancer and will remain on the market. This issue has been extensively discussed in previous entries. Rather than rehash my opinion, I&#8217;d like to share some [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=739&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p>The FDA has announced that bevacizumab <a href="http://www.breastcancer.org/treatment/targeted_therapies/new_research/20111118.jsp">(Avastin) is no longer approved for the treatment of breast cancer</a>. The Genentech drug retains its indications for colon, lung, kidney, and brain cancer and will remain on the market.</p>
<p>This issue has been extensively discussed in <a href="http://ihatebreastcancer.wordpress.com/2011/07/04/a/">previous entries</a>.</p>
<p>Rather than rehash my opinion, I&#8217;d like to share some recent commentary from others:</p>
<blockquote><p>If there&#8217;s a shard of hope for patients, it is that Genentech is running a new Avastin breast cancer trial, with a particular emphasis on a potential subset biomarker, the protein known as vascular endothelial growth factor A. . . Genentech would not continue to spend tens of millions of dollars and risk Dr. Pazdur&#8217;s reprisals against its other medicines if it did not see some tangible therapeutic gain.&#8211;<em>Wall Street Journal</em> editorial</p></blockquote>
<p>The risks of Avastin are real, but they&#8217;re also well-understood and manageable, especially in end-stage oncology where there are no good options. The FDA&#8217;s real goal was to send a warning to the rest of the drug industry about who is in charge of drug development. The FDA withdrew Avastin&#8217;s breast cancer approval last year—leading to Genentech&#8217;s unprecedented appeal and a two-day trial in June.</p>
<p>In her decision denying that appeal, Dr. Hamburg concedes that there are groups of &#8220;super responders&#8221; who experience dramatic improvements when treated with Avastin. But she then says those patients don&#8217;t count because &#8220;it is not possible to determine if there is some subset of patients within the population as a whole that may have had a meaningful benefit.&#8221; Dr. Hamburg also concedes that Avastin may produce better results when used with different chemotherapies, but that those prospects haven&#8217;t been sufficiently tested&#8230;</p>
<p>All of this suggests that Avastin should remain on the market as one treatment alternative as knowledge about the drug grows—which is all that Genentech requested in its appeal. Looking at the same studies, the European Medicines Agency (the FDA&#8217;s continental equivalent) continues to approve Avastin for breast cancer. The National Comprehensive Cancer Network, a highly respected consortium of U.S. oncology programs, has four times reaffirmed its recommendation that Avastin is &#8220;an appropriate therapeutic option.&#8221;</p>
<p><a href="http://online.wsj.com/article/SB10001424052970203611404577046133283707236.html?mod=googlenews_wsj">&#8220;The Avastin Denial: A chillingly blunt assertion of regulatory power against a drug for breast cancer&#8221;</a></p>
<blockquote><p>&#8220;More research is needed to identify what biomarker identifies our subgroup.&#8221;&#8211;Patient</p></blockquote>
<p>&#8220;I don&#8217;t disagree with the FDA decision,&#8221; says one woman who has been on it.  &#8220;We need to have drugs that are proven to extend survival and not settle for less. Avastin never lived up to its initial promise&#8211;except for some outliers and more research is needed to identify what biomarker identifies our subgroup.&#8221;</p>
<blockquote><p>&#8220;There’s no group of hos­pitals and doctors whose profit and livelihood, respec­tively, depends on giving Avastin to just a few people with metastatic breast cancer.&#8221;&#8211;Elaine Schattner</p></blockquote>
<p>&#8230;What I think is that Avastin is a scapegoat of sorts, a costly drug not par­tic­u­larly worse than many others, nor better, and that helps a small minority of women with a lethal disease for reasons their doctors can’t predict or explain.</p>
<p>What I wonder is, iron­i­cally, because the data on Avastin were col­lected so care­fully, that its lack of effec­tiveness over a pop­u­lation of women was better-​​documented than has been the lack of evi­dence for other drugs and reg­imens. Besides, there’s no group of hos­pitals and doctors whose profit and livelihood, respec­tively, depends on giving Avastin to just a few people with metastatic breast cancer. There was just Genentech, an easy big-​​Pharma target, and a few women, pleading for con­tinued access to a drug that’s helped to keep them alive.</p>
<div>
<p><a href="http://www.medicallessons.net/2011/11/final-word-on-avastin-and-why-we-need-better-physicians/">&#8220;Final Word on Avastin, and Why We Need Better Physicians,&#8221;  Elaine Schattner, M.D.</a></p>
</div>
<blockquote><p>&#8220;I would have appreciated being patronized because at least we would have been acknowledged,&#8221; Jake H., husband of Nancy, a patient who testified at the FDA hearing</p></blockquote>
<p>&#8220;The hearing was really frustrating in that the FDA was indifferent to our pleas,&#8221; <a href="http://bynancysside.blogspot.com/2011/07/return-from-washington.html">writes Nancy</a>, a patient who testified at the hearing. &#8220;Several of the folks on the panel were so rude during the hearing they were literally reading their Blackberries during the public testimony. As [my husband] Jake commented, &#8216;I would have appreciated being patronized because at least we would have been acknowledged.&#8217; So true! We were completely ignored on the first day and treated like we were wasting their time.&#8221;</p>
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			<media:title type="html">katherinembc</media:title>
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		<title>Special Gift Guide Edition&#8230;.</title>
		<link>http://ihatebreastcancer.wordpress.com/2011/11/17/special-gift-guide-edition/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2011/11/17/special-gift-guide-edition/#comments</comments>
		<pubDate>Thu, 17 Nov 2011 05:15:25 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=733</guid>
		<description><![CDATA[Q: What&#8217;s more fun than going to your cancer center? A: Playing &#8220;Going to the Cancer Center&#8221; with these Barbie-like dolls! Retailing for a bargain price of $8.99 you can afford to buy one for everyone in the waiting room! Take that, Madame Alexander! About to get a parking ticket? Tired of cleaning the cat [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=733&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.medline.com/dolls"><img class="alignnone" title="Medline Dolls Logo" src="http://www.medline.com/dolls/img/Medline_Dolls_header.jpg" alt="" width="447" height="64" /></a></p>
<div class="wp-caption alignright" style="width: 106px"><a href="http://www.medline.com/dolls"><img class=" " title="Angel the Breast Cancer Awareness Doll" src="http://www.medline.com/dolls/img/Medline_Doll_Angel.jpg" alt="" width="96" height="200" /></a><p class="wp-caption-text">Comes with everything you see here plus Infusion Accessories and Practice Makes Perfect Stick Kit</p></div>
<div class="wp-caption alignleft" style="width: 106px"><a href="http://www.medline.com/dolls/img/Medline_Doll_Deb.jpg"><img class=" " title="Deb the Pink Glove Dancing Oncology Nurse" src="http://www.medline.com/dolls/img/Medline_Doll_Deb.jpg" alt="" width="96" height="200" /></a><p class="wp-caption-text">Doll cannot actually dance.</p></div>
<p>Q: What&#8217;s more fun than going to your cancer center?</p>
<p>A: Playing &#8220;Going to the Cancer Center&#8221; with these Barbie-like <a href="http://www.medline.com/dolls/">dolls!</a> Retailing for a bargain price of $8.99 you can afford to buy one for everyone in the waiting room!</p>
<p>Take that, Madame Alexander!</p>
<div class="wp-caption alignright" style="width: 226px"><img title="Blustery Day Cancer Card on Etsy" src="http://img1.etsystatic.com/il_fullxfull.185303789.jpg" alt="" width="216" height="251" /><p class="wp-caption-text">Stock up and save!</p></div>
<p>About to get a parking ticket? Tired of cleaning the cat box? Consider playing <a href="http://www.etsy.com/listing/59565045/pull-the-cancer-card-note-card-and?ref=sr_gallery_7&amp;ga_search_submit=&amp;ga_search_query=Cancer+card+&amp;ga_order=most_relevant&amp;ga_ship_to=US&amp;ga_view_type=gallery&amp;ga_search_type=handmade&amp;ga_facet=handmade">this cancer card</a>, designed by a twenty-something with breast cancer,. . .   →</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>Is your oncologist AWESOME?</p>
<p>Why not let everyone know!</p>
<p>Be warned, most of the <a href="http://www.funnycancershirts.com/">other shirts</a></p>
<p>have some very rude (albeit pretty</p>
<p>funny sayings).  <a href="http://igotthecancer.blogspot.com/">The designer</a> is a four-year</p>
<p>Hodgkins survivor.  . .  ↓</p>
<div class="wp-caption alignleft" style="width: 175px"><a href="http://www.cafepress.com/chucklenut"><img title="Chucklenuts My Oncologist Tshirt" src="http://images1.cpcache.com/product_zoom/298459041v10_225x225_Front_padToSquare-true.jpg" alt="" width="165" height="165" /></a>↑  Just the thing to wear on your next fundraiser walk!</dt>
</dl>
</div>
<div class="mceTemp" style="text-align:left;">
<dl class="wp-caption alignnone">
<dt class="wp-caption-dt"><p class="wp-caption-text"> Breast cancer left Margaret Omori with lymphedema and the idea for &quot;Sassy Sleeves&quot; compression garment covers.</p></div>
<p>&nbsp;</p>
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			<media:title type="html">katherinembc</media:title>
		</media:content>

		<media:content url="http://www.medline.com/dolls/img/Medline_Dolls_header.jpg" medium="image">
			<media:title type="html">Medline Dolls Logo</media:title>
		</media:content>

		<media:content url="http://www.medline.com/dolls/img/Medline_Doll_Angel.jpg" medium="image">
			<media:title type="html">Angel the Breast Cancer Awareness Doll</media:title>
		</media:content>

		<media:content url="http://www.medline.com/dolls/img/Medline_Doll_Deb.jpg" medium="image">
			<media:title type="html">Deb the Pink Glove Dancing Oncology Nurse</media:title>
		</media:content>

		<media:content url="http://img1.etsystatic.com/il_fullxfull.185303789.jpg" medium="image">
			<media:title type="html">Blustery Day Cancer Card on Etsy</media:title>
		</media:content>

		<media:content url="http://images1.cpcache.com/product_zoom/298459041v10_225x225_Front_padToSquare-true.jpg" medium="image">
			<media:title type="html">Chucklenuts My Oncologist Tshirt</media:title>
		</media:content>
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		<title>Dr. Stephen Baylin: Rock Star of Science and Epigenetic Genius</title>
		<link>http://ihatebreastcancer.wordpress.com/2011/10/30/dr-stephen-baylin-rock-star-of-science-and-epigenetic-genius/</link>
		<comments>http://ihatebreastcancer.wordpress.com/2011/10/30/dr-stephen-baylin-rock-star-of-science-and-epigenetic-genius/#comments</comments>
		<pubDate>Sun, 30 Oct 2011 14:17:39 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[breast cancer]]></category>
		<category><![CDATA[Dr. Stephen Baylin]]></category>
		<category><![CDATA[epigenetics]]></category>
		<category><![CDATA[Johns Hopkins]]></category>
		<category><![CDATA[Stand Up 2 Cancer]]></category>

		<guid isPermaLink="false">http://ihatebreastcancer.wordpress.com/?p=724</guid>
		<description><![CDATA[I volunteer with the Metastatic Breast Cancer Network. At the group&#8217;s annual conference, someone living with MBC introduces every expert speaker. Prior to introducing the medical expert, each patient shares his or her story. I had the honor of introducing Johns Hopkins&#8217; Dr. Stephen Baylin. In addition to being a Rock Star of Science, he [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=724&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><em>I volunteer with the <a href="http://mbcn.org">Metastatic Breast Cancer Network.</a> At the group&#8217;s annual conference, someone living with MBC introduces every expert speaker. Prior to introducing the medical expert, each patient shares his or her story. </em></p>
<p><em>I had the honor of introducing Johns Hopkins&#8217; Dr. Stephen Baylin. In addition to being a <a href="http://www.rockstarsofscience.org/2010_rockdocs_baylin.htm">Rock Star of Science</a>, he is on the <a href="http://www.standup2cancer.org/su2c/about_us/scientific_dream_teams/bios">Stand Up 2 Cancer Dream Team</a>. </em></p>
<p><em>Here is my introduction:</em></p>
<p><a title="blocked::http://mbcn.org/special-events/video-file/2011-national-conference-md-katherine-obrien/" href="http://mbcn.org/special-events/video-file/2011-national-conference-md-katherine-obrien/" target="_blank">http://mbcn.org/special-events/video-file/2011-national-conference-md-katherine-obrien/</a></p>
<p>Hello everyone.</p>
<p>My name is Katherine O’Brien. My breast cancer story began on July 6, 2009. I was 43 years old. According to my Microsoft Outlook calendar, my mammogram was 1095 days overdue. Yes, I put off having a mammogram for three years.</p>
<p>The mammogram technician seemed to think we were doing a fashion shoot: “Now try it this way, that’s right, lean into the machine a little more, hold it right there.”</p>
<p>There are Playboy Bunnies who don’t have as many pictures of their breasts as I do.</p>
<p>Finally, I was sent across the hall for an ultrasound.  The technician tapped away at her keyboard. Then she left, saying she would be back soon.</p>
<p>When you have a good mammogram, you never see the radiologist. When you have a bad mammogram, you get the Publishers Clearing House Sweepstakes Prize Patrol, only without the balloons and the oversized check.</p>
<p>It took three people to give me the bad news: The silent technician who hovered near her machine, the radiologist and the patient navigator.</p>
<p>The radiologist looked hungover or maybe that’s just how you look when you sit in a dark room all day emerging only to tell people they have cancer and they should see a surgeon.</p>
<p>The patient navigator was stroking my leg as the doctor spoke. I could only think: “This woman feels sorry for me, this must be really bad.”</p>
<p>How could I have breast cancer?</p>
<p>I was practically flat chested. In my flawed logic, it seemed reasonable that if you had big breasts you had a big chance of having breast cancer and if you had almost no breasts like me, you would have almost no chance of having breast cancer.</p>
<p>Everyone knows that most lumps aren’t cancer. And although my mom died from breast cancer, everyone knows most cancer isn’t hereditary.  Plus my mom had inflammatory breast cancer which is pretty rare.</p>
<p>So how could I have breast cancer?</p>
<p>A few days after I saw the radiologist, a breast surgeon did a fine needle biopsy. It is called a “fine needle biopsy” because if they actually told us “Look I am going to jam this thing that looks like a harpoon gun into your breast” we would all make a dash for the parking lot, never to be seen again.</p>
<p>The breast surgeon told me that I probably had Stage III breast cancer. She recommended a mastectomy. After we had talked awhile, she asked if I had any additional questions.</p>
<p>“Just one,” I said. “We’re Jewish. What about genetic testing?”</p>
<p>“Oh,” said the surgeon. She stopped just short of saying “I didn’t realize O’Brien was a Jewish name.”</p>
<p>My mother was Jewish—and like most U.S. Jews I am of Ashkenazi or Eastern European descent. Ashkenazi Jews have a higher risk for a genetic mutation which in turn carries a higher risk for breast and/or ovarian cancer. Testing showed I do not have the BRCA mutation.</p>
<p>Before I had the mastectomy, I was sent for the usual tests: MRI, CT and a bone scan. I knew I was in trouble when the bone scan technician asked me if my back hurt.</p>
<p>A bone biopsy revealed a low volume of mets to my lumbar and thoracic spine.</p>
<p>My surgery was canceled.</p>
<p>Learning I had Stage IV breast cancer was devastating. I assumed that I would soon be dead. Thankfully that hasn’t happened. So far.</p>
<p>The <a href="http://www.mbcn.org">Metastatic Breast Cancer Network’s</a> publications gave me a lot of help and a lot of hope as did  <a href="http://http://www.amazon.com/Questions-Answers-Advanced-Metastatic-Breast/dp/0763761834">Lillie Shockney’s book</a>,  “<em>100 Questions</em> &amp; Answers About Advanced and Metastatic Breast Cancer.”</p>
<p>I have been stable on an antihormonal treatment: a pill plus ovarian suppression and a monthly bone booster.</p>
<p>Although surgery isn’t standard of care, there is thought to be some benefit. Last year I had unilateral mastectomy followed by radiation.</p>
<p>Someone asked me something I thought was pretty inane.</p>
<p>But in a broader sense, it’s actually a great question, one that relates very much to Dr. Stephen Baylin’s topic. The question was:  “What does your cancer mean for your twin?”</p>
<p>Now, I have a twin <em>brother</em>.</p>
<p>Many people, upon learning I have a twin brother, have asked: &#8220;Are you identical?&#8221;</p>
<p>Well, in layman’s terms, one of us has a wee-wee and one of us does not. So there are some kind of critical differences but genetically, yes we do share some common ground.</p>
<p><a href="http://www.medscape.com/viewarticle/733408">Dr. Baylin’s </a>specialty is <a href="http://www.youtube.com/watch?v=phyqsww6B1A">epigenetics</a>. If our DNA is like a computer’s hard drive, <a href="//www.youtube.com/watch?v=nyck4rdP_Bc&amp;feature=related">epigentics </a>would be the software.</p>
<p>My cancer isn’t hereditary—so theoretically my hard drive is fine. But something went wrong with the software. Or to use another analogy, if my DNA were a piano, I’d have 88 keys. But epigenetic changes in my DNA would mean that certain keys would be noiseless when struck because they had been turned off.</p>
<p>Dr. Baylin has shown <a href="http://www.thedailybeast.com/newsweek/2009/06/26/beyond-the-book-of-life.html">disruptions in tumor suppressor genes, which normally protect cells against cancer, are more often due to epigenetic silencing </a>than outright mutation.</p>
<p>Perhaps most exciting, <a href="http://www.standup2cancer.org/node/4160">Dr. Baylin is working on ways to turn the silenced genes back on </a>so they can do their jobs. I could play Chopsticks on my DNA.</p>
<p>Someday, maybe Dr. Baylin’s work will shed some light on how a flatchested, Jewish girl named O’Brien got cancer.</p>
<p>Maybe even more importantly for my nonidentical dyzgotic twin and all my siblings and their children, maybe someday Dr. Baylin’s work will help us understand cancer at a molecular level and usher in an era of highly personalized treatment.</p>
<p>Dr. Baylin’s topic is “Cutting Edge Research.”</p>
<p>Just a reminder before I tell you more about Dr. Baylin—if you have a question during this session, please write it down—there are index cards in your folders—and give the card to one of the volunteers.</p>
<p>Now, about Dr. Baylin:</p>
<p>He  is Deputy Director of The Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins. He is the Virginia and D.K. Ludwig Professor for Cancer Research and a Professor of Oncology and Medicine. He received his MD from Duke University and also completed an Internal Medicine residency there.  He completed a fellowship in Endocrinology and Physiology at Johns Hopkins. His clinical interests include molecular markers for cancer risk assessment, early diagnosis and prognostic monitoring and the use of reversing gene silencing.</p>
<p>Please join me in welcoming Dr. Baylin.</p>
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		<title>Remembering absent MBC friends on Oct. 31</title>
		<link>http://ihatebreastcancer.wordpress.com/2011/10/27/remembering-absent-mbc-friends-on-oct-31/</link>
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		<pubDate>Thu, 27 Oct 2011 12:12:51 +0000</pubDate>
		<dc:creator>katherinembc</dc:creator>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[Gary Schwitzer Breast Cancer Remembrance Day]]></category>

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		<description><![CDATA[[Reposting as it is almost Oct. 31] Last year I created my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. I will wear black, not for its funeral implications but for its simple [...]<img alt="" border="0" src="http://stats.wordpress.com/b.gif?host=ihatebreastcancer.wordpress.com&amp;blog=21777635&amp;post=721&amp;subd=ihatebreastcancer&amp;ref=&amp;feed=1" width="1" height="1" />]]></description>
			<content:encoded><![CDATA[<p><em>[Reposting as it is almost Oct. 31]</em></p>
<p>Last year I created my own holiday: Breast Cancer Remembrance Day.</p>
<p>On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease.</p>
<p>I will wear black, not for its funeral implications but for its simple dignity, a quality sadly lacking for much of the preceding 30-pink saturated days.</p>
<p>At 8:45 that night I will go outside with a flashlight. I&#8217;ll think of the one in 8* U.S. women who will get breast cancer and the 45,000 who will die this year.</p>
<p>My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons immediately start to spread out as they leave the flashlight. Provided they don&#8217;t hit anything, each individual photon travels through space forever.</p>
<p>Time slows down as you approach the speed of light.</p>
<p>I&#8217;ll think of those whose time was all too brief and I&#8217;ll hope for brighter days ahead.</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
<p><em>* &#8220;1 in 8&#8243; should be put in proper context:</em></p>
<p>As the National Cancer Institute and <a href="http://www.healthnewsreview.org/blog/2011/09/with-best-wishes-for-andrea-mitchell-some-criticisms-of-her-message.html">Gary Schwitzer </a>explain:</p>
<p>Women born now have an <strong>average risk of 12.2</strong> percent (often expressed as &#8220;<strong>1 in 8&#8243;</strong>) of being diagnosed with breast cancer at some time in their lives. On the other hand, the chance that they will <strong>never</strong> have breast cancer is <strong>87.8</strong> percent (expressed as <strong>&#8220;7 in 8&#8243;</strong>).</p>
<p>But that is a <strong>lifetime</strong> risk. Risk increases with age, so the NCI provides a more helpful way of looking at it &#8211; for all of those women watching who are of different ages:</p>
<p>A woman&#8217;s chance of being diagnosed with breast cancer is:</p>
<p>from age 30 through age 39 . . . . . . 0.43 percent (often expressed as &#8220;1 in 233&#8243;)<br />
from age 40 through age 49 . . . . . . 1.45 percent (often expressed as &#8220;1 in 69&#8243;)<br />
from age 50 through age 59 . . . . . . 2.38 percent (often expressed as &#8220;1 in 42&#8243;)<br />
from age 60 through age 69 . . . . . . 3.45 percent (often expressed as &#8220;1 in 29&#8243;)</p>
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