Join MBCN in Taking Part in ITSABOUTTIMEMBC

September 28, 2016

nmbcad-logo-yel-300x195

Metastatic breast cancer – cancer that travels from the breast and spreads to other parts of the body – is treatable, but not curable. Though exact statistics are unknown, an estimated 155,000 people are living with the disease in the United States.

Those with metastatic breast cancer face challenges different from those with early stage because metastatic breast cancer patients are always in treatment. They experience ongoing anxiety and fear knowing they will die one day from the disease.

 

For metastatic breast cancer patients it’s about time. Time to spend with their families, time to cross something off their bucket list, time to simply drive the carpool or cook a meal.

It’s also about time we increased awareness of the disease, time we developed more treatments to help metastatic patients live longer, time there was more recognition and support of those managing this disease.

As we approach Breast Cancer Awareness month,the Metastatic Breast Cancer Network (MBCN) is proud to be taking part in the It’s About Time campaign to raise awareness of metastatic breast cancer. What does time mean to you and your family? What would you do with more time? We invite you to visit the campaign website at www.itsabouttimeMBC.com and share your stories – or spread the word on social media using the hashtag #itsabouttimeMBC.

More than 30 organizations and 100 bloggers will be sharing their stories. Please join us! You can share your story AND take part in a special Facebook event on Oct. 13; National Metastatic Breast Cancer Awareness Day. Beginning at 8:13 a.m. Central time, and continuing at 13 minutes past the hour, for 13 hours, It’s About Time will be hosting a conversation at https://www.facebook.com/ItsAboutTimeMBC/. Every hour matters, we hope you will join us.

Blogger and MBCN board member Katherine O’Brien has shared her story here


Gone Too Soon: Remembering Some Friends We Lost in 2013.

February 1, 2014

Gone Too Soon: Remembering Some Friends We Lost in 2013.

Reblogging Katherine O’Brien’s latest post from ihatebreastcancer.wordpress.com.

Despite billions spent on breast cancer research, 40,000 US women (and men) still die of breast cancer every year. Worldwide, more than half a million people die annually from this insidious disease.

As we remember those who died in 2013,  the cruelty of this disease has never been more apparent. They were young, old and all points in between. But one thing can be said of each of them: they are gone too soon. Here is video featuring  are some people who died from metastatic breast cancer in 2013.

Read the blog and view the video.


MBCN Year in Review – 2013

December 28, 2013

by Shirley Mertz, Metastatic Breast Cancer Network President

As we approach the end of the year, I want to report to you what MBCN has accomplished in 2013– with your help and support.

We created a new logo this year to better reflect our mission—educating, empowering and advocating.    mbcn_rgbVHKversion

Here are the major activities of 2013  and how they supported our mission:

EDUCATING AND BUILDING AWARENESS

Dr Don Dizon answering a question during his talk on Living with MBC.

Dr Don Dizon answering a question during his talk on Living with MBC

•  Our 7th annual national metastatic breast cancer conference in cooperation with experts at MD Anderson in Houston, Texas.  Over 225 patients and caregivers attended the September 20-22 event.  All the presentations were recorded and are on our website.

brochureMBCN partnered with Living Beyond Breast Cancer to develop and write an expanded booklet called, “Guide for the Newly Diagnosed Patient.”  It can be ordered for free or downloaded on our website.  We urge members to take copies to their oncologist’s office so patients can benefit from it.

•MBCN expanded the amount and kind of information on our website (mbcn.org).  There patients can find our national conferences’ recordings; info about clinical trials, pain and supportive services; financial resources,  inspirational stories from those living with our disease; and advocacy strategies.

•Our new T-Shirt was popular and part of our October 13 MBC Awareness Day campaign.tshirt

•Our short videos were also well received, especially during October.

how do you live

How do you LIVE with metastatic breast cancer?

useyourvoice

Use Your Voice

thingspplsay

Dumb things people say about metastatic breast cancer

caregivers

Celebrating caregivers

 

•Each day in October we posted a Fact a Day on Facebook for you to share with friends and spread education and awareness of living with metastatic disease. See the 31 Days of October.

• At the San Antonio Breast Cancer Symposium (SABCS), MBCN was part of a panel that explained clinical trials to other patient advocates and the challenges facing metastatic patients to decide and participate in clinical trials.

•MBCN partnered with Novartis to develop and edit an online magazine for caregivers of metastatic breast cancer patients. cate


EMPOWERING

 •At our annual conference, a special session on how to advocate on behalf of the metastatic community was developed and presented to attendees.  An “Advocacy Kit,” complete with instructions and tools, is on our website for any patient, family member or supporter to use.

•MBCN has guided, informed and empowered several patients and/or their supporters who want to host an educational and/or fundraising event in their community or local hospital.  See our fundraising section on the website.  MBCN provides free materials for these events.

•MBCN encouraged its members to participate in quality surveys that sought to identify challenges and concerns of patients.

•MBCN provided opportunities for our members to speak out in videos and focus groups, such as these:

livingthereality

Living the reality of metastatic breast cancer

 

livingwithmbc

Living with metastatic breast cancer – MBC Alliance video

ADVOCATING

alliance • Based on a vision by MBCN, the Metastatic Breast Cancer Alliance was formally announced to the public this year during our Metastatic Breast Cancer Awareness Day campaign.  The MBC Alliance consists of 16 breast cancer organizations who have joined together, driven by a vision to transform and improve the lives of women and men living with metastatic breast cancer.  See my remarks at our first face-to-face meeting.

 •MBCN partnered with SHARE to develop and participate in a webinar for experienced and new oncologists entitled, “Communicating Hope and Trust:  The Patients’ Point of View.”

•MBCN has a seat on the Board of Directors of the National Breast Cancer Coalition.  We advocate on behalf of Breast Cancer Deadline 2020 to find the causes of metastasis and participate in strategic planning and implementation of that goal.

•MBCN served on the Global Advocate Planning Committee to organize and plan sessions for global advocates at the Advanced Breast Cancer 2 Global Conference in Lisbon where doctors discuss and decide on treatment guidelines for the disease.  The advocates discussed common global challenges facing patients with metastatic disease. MBCN reported on the findings of a US survey of metastatic breast cancer patients that asked patients about quality of life issues.

Those are the highlights of 2013 and we are planning an ambitious year for 2014!

If you have questions for us, or ideas you want to share, please leave your comments below or contact me directly at s.mertz@mbcn.org.

Sincerely,

Shirley Mertz
President, Metastatic Breast Cancer Network

Dealing with the Holidays: Ideas from People with Metastatic Breast Cancer

November 28, 2013
Think positive!

Think positive!

The holidays are here. While some songs claim this is the most wonderful and most happiest time of year, for many people it is also the most stressful time of year. Last year, we asked people with MBC to share their thoughts on the holidays. We asked them, among other things, how to deal with the feeling that that this holiday had to be most perfect and most memorable gathering. Their comments were so insightful:

“I think that my offer to make six dishes for Thanksgiving was really my attempt to show myself that I was still capable of doing “more” than my able bodied relatives…I am gradually learning that I don’t have to place so much pressure on myself”

“I was upset the first holiday after my diagnosis when our big family gathering had its usual portion of mini-dramas, arguments and misunderstandings. I thought this holiday should be like a Hallmark card or that Norman Rockwell painting, but then I realized we were never that way, so why should I have these unrealistic expectations?”

“For me the biggest stress is trying to please everyone. While I have always struggled with this, the intensity with which I feel this is much stronger now that I am living with mbc. It is an effort to remember that it is truly impossible to please all, all the time. I am trying to remember what it is that I like – this often gets muddled for me. I am still a work in progress.”

“I am bothered and saddened by the thought that this might be my last Christmas. It makes everything so much more emotional and stressful–like your gifts to people have to be more meaningful and your interactions with relatives you barely see more intense.”

Some commented that thinking about meaningful, more personalized gifts was comforting. One woman started a tradition of giving everyone very personalized ornaments. “I’ll be part of their Christmases in the future,” she said.

You can read more thoughts on MBC and holiday coping strategies here. And here are some additional thoughts on enjoying the holidays:

Ask for help. If the task of cooking a large family meal seems daunting, then ask for help with set up and clean up, have each person bring a dish to share, or order food to go from a store or restaurant. You may consider making restaurant reservations. Remember, getting together with the people you care about is more important than the food. Family and friends will gladly play a role in your celebration and may feel flattered that you asked for their input and contribution. Source: Cancer.net’s  Cancer and the Holidays

Create a New Holiday Season Tradition That Makes the Most of Your Energy. Change your usual holiday activities so you relieve yourself of some of the pressures of entertaining. Have a “pot luck,” with family members each bringing a dish for the meal, have someone else host the meal, or suggest eating out at a favorite restaurant. Source: CancerCare.org’s Coping with Cancer During the Holidays

Put Yourself First: It’s so easy to feel obligated to accept every invitation, or fulfill every expectation: DON’T! Limit your involvement to what you truly can handle and will enjoy. Source: Mass General’s Coping With Cancer at the Holidays

It’s OK Not to Feel Cheery. If there’s one thing to be mindful of as the holiday season is upon us, remember that it’s OK to not feel as cheery and joyful as all the songs tell us to. It’s normal to experience conflicting emotions at the same time.
Source: MD Anderson’s Tis the Season for Coping With Cancer

If Possible, Keep Your Sense of Humor. When was the last time you had a good laugh? Has it been awhile since you watched your favorite funny movie such as Christmas Vacation?  How about an real golden oldie like Duck Soup?  And finally, if all else fails, ELF YOURSELF! All the best  from MBCN!


Survey Says: Metastatic Breast Cancer Can Be a Lonely Experience

May 22, 2013

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.”

CountUs

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


Our Feel-Good War on Breast Cancer: MBCN Responds

April 27, 2013

Tony Cenicola/The New York Times; Gabrielle Plucknette/The New York Times (umbrella, socks, oven mitt); A.J. Mast/Associated Press; Nam Y. Huh/Associated Press; Kyle Kurlick/The Commercial Appeal, via Associated Press; Dr. Scott M. Lieberman/Associated Press

By Katherine O’Brien, MBCN Secretary

Editor’s Note: Peggy Orenstein’s April 25, 2013 article–the cover story for this Sunday’ s New York Times’ Magazine, demonstrates a remarkable depth and thoughtfulness. It is long–but well-worth the effort to read. For those looking for a quick overview, we’ve prepared the following summary and added our observations where appropriate. We hope it will aid readers’ understanding of this important article as well as prompt further discussions. Please share your insights in the comment section below.

Initial Treatment and Recurrence | Journalist Peggy Orenstein wrote “Our Feel-Good War on Breast Cancer,”   subtitled “The battle for awareness has been won. So why aren’t more lives being saved?” Orenstein frames the article within her own breast cancer experience.  Sixteen years ago at 35, Orenstein had a screening mammogram that revealed early stage breast cancer. Her treatment, at that time, was a lumpectomy, as well as six weeks of radiation.

In 2012, at age 52, Orenstein had a nonmetastatic recurrence. She found the lump herself, nine months after her annual mammogram. Because of her prior treatment, Orenstein’s doctor recommended a unilateral mastectomy as well as Tamoxifen.

Early Detection Doubts | In 1996, at the time of her first diagnosis,  Orenstein credited her screening mammogram with saving her life. (“I considered myself a loud-and-proud example of the benefits of early detection,” she writes.) In 2013, following  the cancer’s recurrence, she has changed her mind.

Orenstein  details the US screening mammogram debate. The popular perception,  fueled in part by some nonprofits and pink-ribbon themed efforts,  is that screening mammograms save lives. Evidence of actual mortality reduction is, in fact, conflicting and continues to be questioned by scientists, policy makers and members of the public. According to Orenstein:

“Mammograms, it turns out, are not so great at detecting the most lethal forms of disease — like triple negative — at a treatable phase. Aggressive tumors progress too quickly, often cropping up between mammograms. Even catching them “early,” while they are still small, can be too late: they have already metastasized. That may explain why there has been no decrease in the incidence of metastatic cancer since the introduction of screening.”

We Say: This article can be summed up in one sentence: “Early Detection is Not a Cure.” Metastatic breast cancer can occur 5, 10,  15 or even 20 years after a person’s original diagnosis and successful treatment checkups and annual mammograms.

Overtreatment | Orenstein explains that  breast cancer isn’t a single disease. But early mammography trials were conducted before variations in cancer were recognized: “before Herceptin, before hormonal therapy, even before the widespread use of chemotherapy.” She then raises the question of overtreatment. Dartmouth’s Gilbert Welch  co-authored a study that estimates that only 3 to 13 percent of women whose cancer was detected by mammograms actually benefited from the test.

We Say: We agree with author and patient advocate Musa Mayer who says: “If we had spent a fraction of the dollars devoted to promoting screening on research to determine which DCIS lesions and tiny invasive breast cancers actually need treatment beyond surgery, and which do not, we’d be way ahead now.” Without knowing which tumors will metastasize, we must treat all of them alike. Worse, “good” mammograms may give some women a false sense of security.

DCIS Dilemma | The article says mammograms and improved imaging technology have resulted in a dramatic increase in the number of people diagnosed with ductal carcinoma in situ (D.C.I.S.),  in which abnormal cells are found in the lining of the milk-producing ducts. DCIS and the less common lobular carcinoma in situ account for about a quarter of new breast-cancer cases — some 60,000 a year. “D.C.I.S. survivors are celebrated at pink-ribbon events as triumphs of early detection,” writes Orenstein. “Theirs was an easily treatable disease with a nearly 100 percent 10-year survival rate.”

We Say: One of our few quibbles with this article is its depiction of DCIS. We agree that most DCIS is successfully treated. But  the article cites an expert who says DCIS is “not cancer but a risk factor.”  This statement creates the overall impression is that DCIS is not a big deal. Again, in most cases DCIS does NOT go on to become invasive breast cancer, but unfortunately it can and does.

Confusing Statistics |  Orenstein say that the Komen organization, a mammogram/early detection proponent,  has been accused of citing deceptive five-year survival rates. Since these allegations first surfaced, Komen has stopped using the statistic in question.

We Say: NBCC does an excellent job of addressing this common misperception:

Mortality numbers tell the story more precisely than survival numbers. Screening skews the survival numbers:  The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives,  so it looks like survival for early stage breast cancer is 98 percent.

This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. . . Women die of metastatic disease, not primary breast cancer.

Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, it’s now leveling off; mortality has declined slightly but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.
Source: http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates

We Can’t Manage What We Don’t Measure: When will we start collecting meaningful statistics on metastatic breast cancer recurrence?  US cancer registry data captures data at the time of diagnosis and death. The registries don’t track what happens in between.

As Orenstein notes, 30% of those originally diagnosed with early stage breast cancer will have a metastatic recurrence. But this information is not tracked–until people die:

  • NCI and SEER database record  incidence, initial treatment and mortality data. Most people do NOT present with metastatic diagnosis. The cancer registry does not track recurrence—which is how the majority of people are thrust into the metastatic breast cancer ranks.
  • We say that there are 150,000 US people currently living with metastatic breast cancer, but that’s basically a guess.
  • We know for sure that 40,000 US people die from breast cancer every year. We know that 5 to10 percent of those with metastatic breast cancer were Stage IV from their first diagnosis. So what about the 90 to 95% of those 150,000 currently living with metastatic breast cancer  who were previously treated for early stage breast cancer? The cancer registry does not track them—until they die.

Funding Research | We need more metastatic breast cancer research. Orenstein confirms what MBCN and METAvivor have said for years. Metastatic breast cancer research is appallingly underfunded:

According to a Fortune magazine analysis, only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis; out of more than $2.2 billion dollars raised over the last six years, Komen has dedicated $79 million to such research — a lot of money, to be sure, but a mere 3.6 percent of its total budget during that period.

There’s also the intertwined issue of funding research for the prevention of metastatic breast cancer vs. treatments that will extend the lives of those currently living with the disease:

“A lot of people are under the notion that metastatic work is a waste of time,” said Danny Welch, chairman of the department of cancer biology at the University of Kansas Cancer Center, “because all we have to do is prevent cancer in the first place. The problem is, we still don’t even know what causes cancer. I’d prefer to prevent it completely too, but to put it crassly, that’s throwing a bunch of people under the bus right now.”

We Say: MBCN’s slogan is “Fighting for Treatments to Extend Life.” So we appreciate Welch’s candor and dedication.  And, if we want to prevent metastasis, we may need to rethink our current approach to clinical trials.  During last year’s annual Metastatic Breast Cancer Conference, NIH’s Dr. Patricia  Steeg made a case for redesigning clinical trials to do what she termed “phase II randomized metastasis-prevention trials.” Currently, phase I and phase II clinical trials are done in patients with advanced, refractory metastatic cancer, patients who have had many therapies. In phase II trials, researchers typically are trying to determine if a drug shrinks metastases.“But a drug that prevents metastasis may not shrink a large, refractory tumor,” said Steeg. “It has a different mechanism of action that is not picked up by the clinical trial system.”

Know The  Breast Cancer Facts | In her final paragraphs, Orenstein says we may have more breast cancer “awareness” but this “awareness” is fundamentally flawed: “All that well-meaning awareness has ultimately made women less conscious of the facts: obscuring the limits of screening, conflating risk with disease, compromising our decisions about health care, celebrating “cancer survivors” who may have never required treating. And ultimately, it has come at the expense of those whose lives are most at risk.”

We Say: Nicely done, Peggy. We’d be honored if you would join us at our 2013 Annual Metastatic Breast Cancer Conference, Sept. 21 at MD Anderson in Houston!

NMBCAD logo black smallMark Your Calendar: Peggy Orenstein’s article will go a long way in helping people understand breast cancer. As women living with metastatic breast cancer, we are committed to educating people about this disease. This article is a good start, but our reality remains poorly understood. That is why MBCN fought to establish  Oct. 13 as National Metastatic Breast Cancer Awareness Day. 

Let’s Keep Talking: On her Facebook post announcing the publication of this article, Orenstein said she hopes it will change the national conversation about breast cancer. We hope so, too. Peggy started the dialogue. Won’t you help us continue it?

4/29/2013 Editor’s Note: This copy has been revised to remove a disputed statistic concerning Stage II and Stage III metastatic recurrence, material that was directly quoted, as indicated,  from http://www.breastcancerdeadline2020.org/get-involved/tools-and-resources/toolkit/resources-and-tools-for-advocates. We will provide additional clarification if available.

4/30/2013 Editor’s Note: As noted above, we removed a disputed statistic we originally quoted from this site after some reader’s questioned its accuracy. [That sentence read in part: For Stage II and III, one-half to two-thirds will develop metastatic disease…] A Google search suggested the statistic came from one of advocate Musa Mayer’s articles. We asked her to comment, and with her permission, share her response. Musa writes:

“I can see I am indeed the source of this statistic, or rather what I wrote in the introductory section of “Silent Voices,” which was written in 2005.  I did get this quote from a text on breast cancer published in 1999, edited by Daniel Roses.  The figures come from an article on the treatment of metastatic breast cancer by Ruth Oratz, an NYU oncologist, written during the era when bone marrow transplants were still being investigated.  I think there may have been an earlier edition.

“There have been a few major advances in the adjuvant treatment of early breast cancer in the last 8 years, principally the use of adjuvant Herceptin, which has reduced recurrence by at least 50% in HER2+ disease, once considered among the deadliest subtype.  The use of adjuvant taxanes with AC regimens in triple-negative breast cancers has also reduced recurrence during these years.  Hormonal treatments have improved in a more incremental way, with the use of the aromatase inhibitors.  So all in all, I believe you can say that for women with non-metastatic disease, the outlook is better than it was even a decade ago.

“Just how much better?  It’s really hard to tell until the numbers mature over time, as we know recurrences can happen later now that more aggressive adjuvant treatment is in use.   The National Cancer Institute’s SEER database shows a steady increase in survival over time, looking at all invasive breast cancers.  For example, 1990 10-year survival was 77%, while in 2000 it was 84%.   But survival figures don’t necessarily represent significant gains, as they are distorted by the overdiagnosis of Stage I breast cancers, which have increased five-fold since the advent of mammography in the 1980’s.

“The numbers are very different in different populations, with low socioeconomic status (hence poor access to care) and African American race predicting higher mortality.  In fact the disparities in survival and mortality have only become greater as more effective treatments are introduced.

“The annual mortality rates for breast cancer, age-adjusted, per 100,000, which DO give an accurate picture of progress, have decreased from 33.1 in 1990 to 27.6 in 2000 to 21.9 in 2010.  That’s a decrease of about one third over 20 years.  Not large, but not trivial, either.”

Source: email correspondence with Musa Mayer

 


A daughter’s story

July 13, 2012

In 1999 my mother Hong was diagnosed with Stage II Her 2 positive breast cancer. In 2001  it returned and in 2009 after a long battle, my mother passed away. I am thankful I had such a courageous mother and of the many good moments we had in those years. However, as an immigrant family and as the caretakers of a patient who did not speak English fluently, we had difficulty navigating the labyrinth of metastatic breast cancer treatment and at times were incredibly confused and isolated.

I can only imagine now how incredibly scared my mother must have felt when she learned her cancer had returned at age 40, less than 2 years from when she was diagnosed. None of us knew that breast cancer could return or that when it did, it would no longer be curable. I can only imagine how she felt as my father reluctantly translated what her oncologist said: you now have mets to the spine, you are Stage IV and there is no cure for you. I was 11 and my brother was just 2.

In the years following we tried to do our best to obtain the best care for my mom. It was a challenge translating the types of pain she described to doctors and nurses. Reading scan reports often led to dictionary searches and my father or I were always required to accompany my mother to appointments to translate. Additionally, culturally speaking, patients in China are less aggressive in patient-physician interactions than those in the US where patient self-advocacy is encouraged and we were uncomfortable questioning oncologists, at least initially.

The most challenging areas were obtaining accurate information on treatment and clinical trials for metastatic breast cancer and finding support. Despite the Pink movement and the focus on breast cancer in hospitals, we just could not find complete information on metastatic breast cancer treatment specific to Her2. The language barrier did not help. We knew of Herceptin and we would hear of certain options such as taxanes and platinums but we didn’t have an understanding of all the treatment options.

Finally, during the duration of my mother’s battle with metastatic breast cancer, we weren’t able to find other Stage IV folks to connect with and did not feel like we had a voice. After neither the Chinese language support group nor the hospital support groups my mother found had any Stage IV members, it dawned on me that metastatic breast cancer is still in the shadows. This past month I found MBCN. I am glad that I am now able to share my story and I hope that collaborative efforts will bring more attention and research funding to this disease.

Sue (Shuyang) Yao

MBCN volunteer