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

MBCN at the recent LBBC Mets Conference

Joani and Judy at LBBC Mets Conference

The weekend of April 28, Judy and I attended the LBBC (Living Beyond Breast Cancer) conference on metastatic breast cancer in Philly.   We met many of you when you stopped by our MBCN table in the conference room.  Thank you to all who stopped by, it was a pleasure to meet you.  Just being in the main room with over 200 women living with the disease (some for over 20 years!!) was humbling and yet, inspiring.

The day began with a panel of experts weighing in on a number of issues.  In a rather candid discussion, several of the doctors discussed the challenges they experienced in advocating for their patients.  It was affirming to hear that doctors are frustrated in dealing with the FDA and with insurance companies and are actively advocating on behalf of their patients, for current treatments, more research and more access to potentially beneficial medications.  We need more advocacy and easier access to medications!

On Sunday, I attended a session on sexual intimacy and was pleasantly surprised by the forthrightness of the MALE speaker who, with humor and respect, spoke directly about the impact of cancer and treatment on sexual well-being. There was a group of younger women with mbc who unabashedly asked questions that I was too shy to ask — thanks to this group!!

Overall, the conference provided women like us a chance to connect. Please keep in mind that the MBCN annual conference is October 13 in Chicago and will provide another opportunity to learn and to connect.

My best,

Joani