A True Advocate

NBCC reflects on Maria Wetzel’s 17 years as a breast cancer advocate: “Maria always felt she wasn’t finished with the disease after that first diagnosis in 1996, but after nine years she let herself think maybe, just maybe she’d be one of the lucky ones. But in 2005 she was diagnosed with a chest wall recurrence, and in 2011, with metastasis to her lungs and liver.”

Though she was living with metastatic disease, she continued her advocacy, working to help others and to see an end to breast cancer for future generations.

Breast Cancer Advocate

Everybody had something to say about Angelina Jolie during May. You couldn’t open a newspaper or magazine, or read a blog without hearing an opinion about her risk for breast cancer and her individual decision.  This dialogue was probably the biggest breast cancer conversation we have had as a nation so far.  Everybody had an opinion.

Me?  I couldn’t muster much interest.  I kept thinking about Maria Wetzel.  Her story wasn’t making the NY Times or CNN.  While Angelina was announcing to the world her tough decision, Maria was making the decision to enter Hospice care.

You didn’t hear about it in the news, but Maria’s story is also about courage, about advocacy and compassion, about empowering others, and about working to make the world a better place. Maria is the real deal, an advocate for those who would come after her. She is one-of-a-kind in intellect, spirit and heart. …

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Next Time Won’t You Sing Along With Me: Metastatic Breast Cancer Theme Songs

Some thoughts on an MBCN theme song. What’s your suggestion?

ihatebreastcancer

I recently attended the national meeting of a breast cancer advocacy group. I had never attended this annual event, and overall, I liked it. The speakers were good and the attendees were attentive and enthusiastic. There was even a special session on metastatic breast cancer.

The event concluded with a reception in a hotel ballroom featuring a DJ who played all the block party favorites: The Electric Slide, YMCA and the group’s unofficial theme song, “I Will Survive.”

None of the metastatic breast cancer events I have attended featured dancing or music–it’s  like “Footloose” only starring people with cancer vs. small-town high school kids. In the weeks following the advocacy meeting, I found myself pondering the theme song question–if there WAS music at an MBC event, what would our signature song be?

My family’s “traditional” party song is Kool & The Gang’s “Celebration,” which I guess is from about…

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Survey Says: Metastatic Breast Cancer Can Be a Lonely Experience

By Katherine O’Brien, MBCN Secretary

“Jennie” was diagnosed with a metastatic recurrence a dozen years after being treated for early stage breast cancer. “What a shock,” she wrote on a discussion board for people living with metastatic disease. “But some people’s reaction has been even more of a shock.”

She described what happened when she contacted a group that hosts exercise programs for breast cancer survivors. “When I explained that I was interested but that I was currently in treatment for liver and bone metastasis, I was invited to participate but it was suggested that maybe I shouldn’t share my current diagnosis.”

Jennie says her family and close friends have been supportive, “but it is different than I was diagnosed in 2001. . .I must say I came away [from the exercise group] feeling totally unwelcome and wondering if this is the experience of others.”

Click on the graphic to see what people in the US said about living with metastatic breast cancer,

 Novartis’ recent survey of 1,273 women in 12 countries revealed that people with metastatic disease continue to feel alone and excluded. Nearly two-thirds (63%) of the women surveyed said they “often feel like no one understands what they are going through” while two in five women said they “feel isolated from the non-advanced breast cancer community.”

“When first diagnosed with breast cancer, women are instantly part of a vibrant breast cancer support community,” said Maira Caleffi, MD, President of Brazilian Federation of Philanthropic Institutions to Support Breast Health (FEMAMA). “But when their cancer metastasizes or if they are first diagnosed with metastatic breast cancer, it is no longer about becoming a survivor; it’s about surviving.”

The” Count Us, Know Us, Join Us” survey also found that on a global basis more than three in four women (77%) say they actively seek out information on their own; however, nearly half (45%) say it is hard to find information about MBC, and more than half (55%) say the information that is available does not address their needs, probably because most of the information available is applicable only to those with early stage breast cancer. In addition to lack of information and feelings of isolation, many women (41%) find that support from friends and family wanes over time.

Other survey highlights:

•  Three in four women (76%) would like their healthcare professional to address their emotional needs.
•  Two in five women (40%) say their relationship with their spouse or partner has been negatively impacted a lot or a moderate amount by their  diagnosis…
• …however, nearly all women (87%) say they receive sufficient support from their spouse/partner.

The survey is part of Novartis’ efforts to promote advancedbreastcancercommunity.org, a patient site the company relaunched in October, which is Breast Cancer Awareness Month in the US. The site, which includes links to patient videos, news and resources, initially launched with financial support from Bristol-Myers Squibb.

Join Us in Houston on September 20-22, 2013

Stories like Jennie’s are why MBCN exists. In 2004, Nina Schulman and Jane Soyer were determined to represent people with metastatic breast cancer, something no local or national organization did at that time. Shulman and Soyer attended major national breast cancer meetings, armed with flyers announcing the plans for what became MBCN. They were amazed at the dramatic response from other mets patients attending those meetings, people who longed for an opportunity to speak for themselves and be recognized in the breast cancer community.

We are proud to carry on Nina and Jane’s  work. Over the past decade, we’ve made some incremental progress. Slowly our stories are being heard and we are being represented at breast cancer conferences and gaining media coverage. But as Jennie’s story illustrates, we still have a lot of work to do to ensure our voices our heard.

Shirley Mertz, President of MBCN, tells her story to encourage others. “I have not hesitated to share my experiences with this disease because I want to motivate others to speak up,” she says. “Joining together with a focused message, metastatic breast cancer patients can improved outcomes in the clinic.”

Our annual conference offers a wonderful chance to share your story.  Mark you calendars: It will take place September 20-22, 2013 in Houston, Texas. We invite you to come–to learn about the latest developments but perhaps even more importantly to know that you are NOT alone.

Houston-area readers:  If you are interested in volunteering or doing a guest blog post with Houston travel and other tips, email Conference Chair Deb Tincher: d.tincher@mbcn.org

The consequence of patents on BRCA genes

Editor’s Note: The Supreme Court is currently determining if human genes can be patented. Myriad owns or licenses two human genes linked to breast and ovarian cancer. If you need BRCA1 or BRCA2 testing you will be dealing with Mryiad. The Supreme Court ruling is expected in June 2013.

Sue Friedman, founder and executive director of Facing Our Risk of Cancer Empowered (FORCE), says the decision is critically important for anyone who is concerned with hereditary disease.

“The Myriad case is just one example of how exclusive patents on genes can hurt consumers,” says Friedman in this guest post for Johns Hopkins University Press. “Gene patents are a universal issue that ultimately affects all of us. Even if hereditary cancer does not run in your family, chances are that you have inherited a genetic predisposition to some disease. Imagine if a company were given exclusive control over all testing and research for a disease that runs in your family…”

Johns Hopkins University Press Blog

Guest post by Sue Friedman

On April 15, 2013, the U.S. Supreme Court heard arguments on whether Myriad Genetics’ patents on the BRCA genes, which are associated with hereditary breast and ovarian cancer, should be upheld. This case culminates a four-year legal tug-of-war between Myriad Genetics & Laboratories and a long list of individual, advocacy, and health care professional groups represented by the American Civil Liberties Union (ACLU) . The plaintiffs agree that regulations allowing exclusive gene patents negatively affect access to care and research.

I was fortunate when I was first tested for a BRCA mutation in 1998: my testing costs were covered by my health insurance. Although I was initially tested without genetic counseling, I eventually went to a large cancer center for a second opinion, met with a genetics expert, and gained access to up-to-date, credible information. It wasn’t until I started FORCE  (Facing Our Risk of Cancer…

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Some Quick Facts About Hereditary Breast and Ovarian Cancer Following Angelina Jolie’s News

Re-blogged from http://ihatebreastcancer.wordpress.com/

   by Katherine O’Brien

Angelina Jolie’s announcement that she is a carrier of the BRCA1 mutation and her subsequent decision to have a preventive double mastectomy has prompted a lot of discussion.

One question Jolie doesn’t touch on: the Supreme Court is currently determining if human genes can be patented. Myriad owns or licenses two human genes linked to breast and ovarian cancer. If you need BRCA1 or BRCA2 testing, as Jolie did, Mryiad has your fate in their hands. The Supreme Court ruling is expected in June 2013. We’ll look at that issue in a separate post.

In the interim, here are some basic facts about breast and ovarian cancer:

• Most cancer  just happens–it’s sporadic vs. hereditary. The majority of people who develop breast cancer didn’t inherit an abnormal breast cancer gene and have no family history. But about five percent of people have a genetic mutation which predisposes  them to cancer.
• Two abnormal genes BRCA1 (BReast CAncer gene one) and BRCA2 (BReast CAncer gene two) are associated with a higher lifetime risk of developing breast and/or ovarian cancer. (FYI, I do NOT have this mutation, my cancer is considered sporadic; I may well have some mutation for which there’s currently no test.)
• From the NCI FAQ: A woman who inherits a harmful mutation in BRCA1 or BRCA2 has an increased risk of developing breast and/or ovarian cancer at an early age (before menopause) and often has multiple, close family members who have been diagnosed with these diseases. Harmful BRCA1 mutations may also increase a woman’s risk of developing cervical, uterine,pancreatic, and colon cancer (1, 2). Harmful BRCA2 mutations may additionally increase the risk of pancreatic cancer, stomach cancer, gallbladder and bile duct cancer, and melanoma(3).
• All of us have BRCA1 and BRCA2 genes according to  BreastCancer.org: ” The function of the BRCA genes is to repair cell damage and keep breast cells growing normally. But when these genes contain abnormalities or mutations that are passed from generation to generation, the genes don’t function normally and breast cancer risk increases. Abnormal BRCA1 and BRCA2 genes may account for up to 10% of all breast cancers, or 1 out of every 10 cases.”
• Ashkenazi (Eastern European) Jews are 10 times more likely to have mutations in BRCA1 and BRCA 2 genes than the general population. Approximately 2.65 percent of the Ashkenazi Jewish population has a mutation in these genes, while only 0.2 percent of the general population carries these mutations.
• Note that most U.S. Jews are  Ashkenazi (their ancestors came from Eastern Europe) vs. Sephardic  (their ancestors came from Spain, Portugal, North Africa and the Middle East).
• Having an abnormal BRCA1 or BRCA2 gene doesn’t mean you will be diagnosed with breast cancer: Only seven percent of breast cancers in Ashkenazi women are caused by alterations in BRCA1 and BRCA2 (See www.genome.gov/10000507.)

Related posts:

Perils of ill-informed celebrity spokespeople (kudos to Jolie):

http://ihatebreastcancer.wordpress.com/2012/11/03/help-wanted-where-is-our-metastatic-breast-cancer-celebrity-spokesperson/

“Sweet Valley High” ghostwriter explores her family’s history of ovarian and breast cancer:

http://ihatebreastcancer.wordpress.com/2012/03/09/hereditary-breast-and-ovarian-cancer-what-slyvia-pody-gail-and-elaine-had/

My experience with BRCA1 and BRCA2 testing:

http://ihatebreastcancer.wordpress.com/2011/04/16/i-didnt-realize-obrien-was-a-japanese-name/