Tag Archives: metastatic breast cancer

Just Keep Evolving: My Patient Advocate Story

How did I get started as an advocate for people living with metastatic breast cancer? It’s a long story–I have to start from the start.

When I was diagnosed with MBC in 2009 at age 43, after the shock and disbelief wore off, I felt a deep-seated anger. I think fear fueled some of this rage—I had seen my mom die from inflammatory metastatic breast cancer weeks after my high school graduation.  I was afraid of dying. (And I still am.)

I was working full-time. Colleagues treated me strangely as news of my diagnosis got around. It was awkward and I had no outlet to vent my pent-up emotions. Not only could I not walk through the office yelling “I AM AFRAID OF DYING AND YOU PEOPLE ARE TREATING ME LIKE THAT’S ALREADY HAPPENING,” at that time I didn’t know any other Stage IV people.

I had not yet found MBCN or any of the online support groups. I could not take to Facebook because neither it nor Twitter were widely used.

It was 2009 and the Affordable Health Care Act hadn’t been enacted. It was clear a layoff loomed in my future–my entire division would eventually be let go–it was only a question of when.

My insurance situation kept me up at night. Had I been let go in 2009, my pre-existing condition meant I would have to go into a high risk pool–provided I could get into one. I went to a presentation at Gilda’s Club on Cancer & Insurance. It sounded pretty bad.

I worried about supporting myself. I worked in a small industry—who was going to hire a woman with Stage IV cancer?  If I couldn’t continue to work, how would I get by? My insomnia worsened.

In this vacuum, my fear and anger festered. I am embarrassed in hindsight, to admit  to some things that seemed like a good idea late at night, when I couldn’t sleep, and felt compelled to rail against what I perceived as stupid and useless fluffy breast cancer initiatives. Mercifully, most of these postings have vanished into the ether.

I blush to recall one such post-midnight sortie when I found Eric Brinker’s email address. (Eric’s mom is Nancy Brinker.) I think it was on a press release for wherever he was working at the time. Anyhow, I sent Eric a note. I can’t remember exactly what I said, but I am sure I didn’t invite him to join my book club. I probably just said I felt more could be done to address the needs of people living with metastatic breast cancer. I believe his response was “How did you get this email?”

While it provided a small measure of satisfaction, part of me knew I wasn’t accomplishing much. It did ultimately lead me to getting involved with the Metastatic Breast Cancer Network. The president in 2009, who has since died, must have had the world’s best-filtered Google Alerts. I had just posted an outraged response to yet another dumb online breast cancer article. It was in some obscure newspaper—I remember hitting “post” and thinking “Well, no one will ever see that.” But thanks to her Google Alert, the MBCN president did—and she asked me to address some similar articles on her behalf.

I did and that ultimately led to me getting more involved with MBCN. Finding MBCN was such a blessing. Initially, I was skeptical—I was 43 years old—and most of the MBCN leadership seemed pretty old to a youngster such as myself. I debated attending its national conference—I was still working and why would I want to spend my precious weekend hanging out with senior citizens talking about cancer?

How very wrong I was. That MBCN  conference was a lifesaver—I could SEE I wasn’t alone. There were a wide range of attendees and I was far from the youngest. I learned so much from the speakers (led by Dr. George Sledge and Dr. Kathy Miller) and the patient stories inspired me.

That’s how I got started as a patient advocate.

I have participated in a wide range of advocacy activities. I’ve been part of NBCC’s Lobby Day, participated in LBBC’s and YSC’s conferences, written dozens of articles about issues facing people living with MBC, attended FDA hearings and been a part of many focus groups.

While MBCN is my advocacy “home,” I try to help where I can. I made a video for the MBC Project.  I partcipated in Beth Fairchild’s Project Hashtag on Mets Monday in 2015.I couldn’t go to Washington DC, but with the help of a friend, I made three videos promoting METUP’s die in.

This one was on behalf of the people who wanted to be there but couldn’t go.

 

More people who couldn’t attend:

 

And some of the far too many who have died–their friends sent in their pictures, which were also displayed on posters.

 

Two of my fellow MBCN board members, Shirley Mertz and Ginny Knackmuhs, joined me at the inaugural die in Philadelphia. Ginny came of age in the 1960s—she was thrilled to participate—she had left the LBBC conference site but she quickly turned her car around and came back after Shirley called her.

Just prior to the event, a woman representing a pharmaceutical company came up to where I was standing with Ginny and Shirley.  “This is morbid!” she said. She appealed to Shirley, as the leader of our group. “Don’t you agree? ” she asked. “We should stop this!”

Shirley looked at her and calmly replied: “I think this is necessary and it should happen.”

And it did.

Shirley has never been known to keep silent for political expediency. One year at ASCO, I was in a packed hotel ballroom and I heard her call out a pharmaceutical executive for his inaccurate (and frankly insulting) characterization of the Affordable Care Act. Shirley Mertz has never faltered  in the courage of her convictions. (She recently appealed to her fellow MBC patients to contact their elected officials to explain accessible care isn’t affordable care--and why that is so important to people with Stage IV breast cancer.)

In 2013, I took on new advocacy challenges when MBCN joined with 16 nonprofits and five pharmaceutical companies to co-found the Metastatic Breast Cancer Alliance. Shirley, an MBC patient, chaired the press conference announcing the event. Two MBC patients shared their stories—we also heard from some researchers about the challenges of MBC.  Today there are 48 members—as well as individual members such as Eliza Adams, Teri Pollastro, Kelly Shanahan and Anne Loeser.

Shirley is the co-chair of the Alliance Resarch Task Force. With LBBC’s Catherine  Ormerod, I co-chair the Awareness Committee (each committee has at least one patient representative).

For the past two years, the Alliance was fortunate to have the pro bono services of an NYC creative agency which helped develop other components of its awareness campaign. If you attended the LBBC mets conference in 2015—you probably met some of the agency staffers—they interviewed hundreds of patients on site and via online surveys.

I am gratified to be a part of the Alliance team that created this Change.org petition calling for our cancer databases to start counting all people with metastatic breast cancer.  It was truly a group effort. Please sign it and share it!

I am proud of the work the Alliance is doing and happy to play a role in it. I admit sometimes I am overwhelmed and even frustrated—there is so much to do and I want things to move faster. But I can see things changing. I am not alone in that sentiment.

Dr. Danny R. Welch, Professor and Chair of Cancer Biology at the University of Kansas Cancer Center attended the February 2016 Task Force meeting–he was among the representatives from 15 academic institutions.

“My career has been focused on research on metastasis and putting an end to breast cancer,” said Dr. Welch. “I have never seen as much energy, collaboration and excitement to work together – across academic, patient advocacy, industry and government sectors- as I have by working with this Alliance.”

I am in active treatment—as I believe all patients who participate in the MBC Alliance are. I would hope that no one would evaluate my or any other patient’s effectiveness as advocates based on our physical appearance and perceived treatment history.

As a patient advocate, I can never forget I am a patient for life. Sometimes my disease is quiet–but like most MBC patients I am  familiar with the crisis of progression.I have been blessed with more good days than bad. Not everyone is so fortunate. I am determined to make good use of my time–for myself and for others.

I have attended SABCS every December for the past several years. December 2015 is etched in my mind because I was in a world of hurt—my cancer had spread to my liver and three successive treatments had failed.

I contemplated a clinical trial, but was ineligible due to the prior drugs I had received. Eventually the trial would be expanding its criteria—but I could not wait months for that to happen. I sought two second opinions, made my choice and had just started my new treatment.

The MBC Alliance met in San Antonio—and of course I participated in that meeting. Aside from my own health issues, attending SABCS was particularly difficult in 2015, because my usual conference roommate, Ginny, wasn’t there. Ginny had lobular triple negative disease and was experiencing many setbacks—including brain mets. She died in 2016.

Ginny served on the Alliance’s Information Task Force Committee. She was involved in developing the Alliance’s clinical trials search tool, Metastatic Trial Search, serving as the MBCN liaison to the Metastatic Trial Search project. She participated actively in the group discussions that led to the design of MTS and its subsequent inclusion on the MBCN site.

“Ginny was incisive, asking difficult questions to ensure that the Alliance was founded and moved forward with a clear focus on people living with MBC,” said Marc Hurlbert. “In December 2013 and March 2014, she helped shape our comprehensive Landscape Analysis report that has informed all of the projects of the Alliance.”

Ginny was an active person—before her health deteriorated, she loved to travel and play golf. She was a doting grandmother. Knowing her time was limited, why did she spend a great deal of it in Alliance committee meetings and serving on MBCN’s board?

Because she cared and she wanted to make a difference.

The same can be said of Amy Bonoff, Marcia Taylor and Rochelle Shoretz—all patients who served on Alliance committees and all of whom died in 2015.

Many people have influenced my advocacy. I try to learn from everyone and keep an open mind.  I never want to be static–in my beliefs or in my actions. I am determined to keep learning, to keep evolving.

Some observers may believe there is only room for one kind of advocacy—that one is forced to choose between being what AIDS chronicler John-Manuel Andriote terms “coat-and-tie” advocates and “street activists.

But as my experience and Adriote’s article make clear, that isn’t the case. Both are invaluable to each other.

“The two ‘sides’ were clearly essential,” says Andriote. “The street activists forced the media to focus on AIDS, using colorful and made-for-TV demonstrations, while the lobbyists helped write the laws delivering a lot of what the protesters were calling for. They all played vital roles.”

It’s also instructive to note that most advocacy groups evolve over time. On Sept. 13, 1990 ACT UP/San Francisco split into two chapters: ACT UP/Golden Gate, devoted to treatment, and ACT UP/San Francisco, which remained committed to broader social change beyond merely pushing medical science to find a cure for AIDS. In 1992 key members of ACT UP’s NYC Treatment and Data committee left to form the Treatment Action Group (TAG).

I think I have evolved, too. No more midnight poison pen letters!

Neither a single group nor any conglomeration can possibly address all facets of metastatic breast cancer. We need all the help we can get. We may not always agree. But we need look no further than the AIDS movement to see that keys groups often didn’t always share the same views or tactics in accomplishing their goals—but each had a vital role to play and none would achieved all that they did without the existence of the others.
We need each other. Let’s make it work.

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Scenes from our 2012 Conference

 

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Social Media and Metastatic Breast Cancer Grief: Some Thoughts from a Stage IV Patient

This entry is part of the 2016 Hear My Voice #Stage4Lifer campaign. Spread the word, read the blogs on LBBC.org and add your own contributions.

Whenever I come across a new metastatic breast cancer blogger I am simultaneously excited and apprehensive. I am glad when another voice joins our MBC online chorus but always fearful if the last post is a few months old: Is this person doing ok? Is he/she still alive?

I was diagnosed with metastatic breast cancer in 2009–most of the veteran MBC bloggers–the women who preceded and inspired me–have since died. Every once in a while, I will come across their blogs when Googling some breast cancer topic. Occasionally, I will follow a link to their sites—I always come away feeling sad–and nostalgic for better days. It’s  hard to go back and read the hopeful reports on a new treatment–knowing ultimately how things turned out.

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A video for my friend Ginny

Seven years ago, Facebook was still in its infancy–there were no closed groups. Twitter was only three years old and not in widespread use. If you wanted to connect with other Stage IV MBC patients online, you could go to  discussion board like BCMets.org, BreastCancer.org or Inspire.com. In the case of the latter two, people used screen names. This anonymity was helpful for confessing one’s deepest fears or concerns, but also unsettling. If you followed “LuvMyCatz,” for example, you would come to feel like you really knew her. But if  LuvMyCatz died, there wasn’t the same closure  you would have with an in-person friend–going to a wake or funeral, sending a condolence card and so on. There was also the very real possibility LuvMyCatz would stop posting you and you would never actually know if she had died or even her real name.

Losing non-social media friends is hard, too. For several years, I enjoyed some periods of stability. When your disease is fairly quiet–at least for the moment–what do you say to a friend who is actively dying?  For months and even years, we could commiserate on a similar level…my oncologist does things this away, I’ve got scans coming up, do you have any advice for these side effects, etc.

When people are dying, they have crossed into a new and scary territory. Your life is going on (at least for now) and theirs is not. I have never felt more helpless.

Fear and guilt are also pervasive. There is no denying it–what is happening to that person will eventually happen to me. Perhaps my final days will play out differently, but the ending is invariable and inevitable.  That person I laughed with, who had a lovely family, a rich array of non-cancer activities and interests and who got excellent care from top doctors, is now dying. And so will I.

These are thoughts I generally shove far from my mind. Like Scarlett O’Hara, I’ll think about it tomorrow. That’s the subject of another, yet to be written post…

weremember

By Slyvan Kamens & Rabbi Jack Riemer

 

But what can we do to comfort ourselves and the family and friends when someone dies? That is a highly personal question–everyone must find their own way and do what is most comfortable and best for them.

I think it is important to tell people NOW (patients and non-patients alike) today that we love them. Why not send a text or card now, telling them so?  Or you could just make a phone call. Or let them know in person.

When someone is actively dying, they may want only a few visitors (or maybe only family). They might not be up talking on the phone. Don’t wait until someone is very ill to let them know you care–do it now, while it is easier for all. (See: “We Live on the Internet, We Die Alone.“)

For me, writing is cathartic. Writing about friends–and people who inspired me–helps me deal with my grief. I think it is important to remember people–our memories and positive thoughts are surely of comfort to the deceased person’s family and friends. But not all writing has to be public or even  shared. If you have lost a friend or loved one, consider writing that person a letter. It will help you come to grips with your feelings–and hopefully help you process your grief.

Barbara Karnes, author of the “Gone from My Sight” booklet, shares some coping tips and practical ideas here and here.

I’ve also made videos to remember those we’ve lost, like this one, this one and this one.

This year has been particular difficult for me…my friends  Ginny Knackmuhs, Adrian B. McClenney,  Jill Cohen, Sarita Joy Jordan, Jody Schoger, Holley Kitchen and far too many others have died.

I read about Randi Rosenberg, co-founder of the Young Survival Coalition, (1966-2010) in a CURE magazine article. Influential blogger Lisa Boncek Adams died in March 2015. Tami Boehmer, a blogger I attended several events with, died in November 2015.

It is hard to think of all the friends I have lost over the past seven years. Samantha Pritchett was a discussion board friend–one of the first people I knew after my own diagnosis to die from the disease. Gigi Robin was another BC.org friend. Lori Baur (1970-2011) was someone I knew from her Inspire posts.  Dana Robinson was a fellow patient introducer at the 2011 MBCN National Conference. Joani Gudeman was a good friend and fellow MBCN board member. Susan Davis was a former MBCN board member and a true inspiration. To this day, memories of MBCN’s Ellen Moskowitz  and Suzanne Hebert push me to do more. I often think of Kathy Coursey-Boes–her daughter, Addie, is about the same age I was when my own mom died from inflammatory MBC in 1983.

I also think alot about the bloggers who preceded me:Canadian blogger Daria Maluta (1961-2011) was among the first MBC blogs I read. Then there was Rachel Cheetham MoroRivkA “with a Capital ‘A’” Matitya, Donna “Dances with Pens” Peach, Jenny Williams, Susan Niebur, Bridget Spence, Jeanne SatherLisa Broberg Quintana aka Michigoose and so many others.

I hope they know how much they helped me–and other people.

leah

One final story: This is me with Leah Stein Leslie Besen who died a couple of years ago. Leah and I met online at BC.org and later  in person in Jerusalem when I was there for a business conference. It was wonderful to meet her–she was waiting for my friend and me outside of the designated restaurant as the snow(!) was falling. She told us where to get the sherut and where to go from there and must have known we were not strong on directions…

She was very tiny–not much taller than the rolled up umbrella she was carrying. I had never eaten in a kosher restaurant and she explained about the meat side and the dairy side. We talked about her making aliyah and how things had changed over the years–how getting washing machine was difficult back in the day. She was very proud of her family–she took home our leftovers to share with them. Little Leah helped so many people–may her memory be for a blessing.

Leah and all of my friends will live on in the cherished memories of all who loved them. Each created a unique legacy–via their words and actions–that can never be diminished or forgotten.

If you were Irish and grew up in 1970s, you probably had a few Clancy Brothers albums. My family did, and that is how I came to know this traditional song:

Of all the comrades that e’er I had
They’re sorry for my going away
And all the sweethearts that e’er I had
They’d wish me one more day to stay
But since it fell unto my lot
That I should rise and you should not
I gently rise and softly call
Good night and joy be to you all.

Note: If you are a patient living with metastatic breast cancer, please consider filling out this Life Review Letter. It is an easy-t0-fill out form that makes it easy to share your thoughts with your family.

Read more Stage4Lifer stories and full campaign details here.

 

Leah's beautiful hands. She wrote the name of the light rail stop in Hebrew so we would know where to get off: "Tachana Merkazit."

Leah wrote the name of the light rail stop in Hebrew so we would know where to get off: “Tachana Merkazit”

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The Biggest Challenges Facing Metastatic Breast Cancer Research

Kudos to Julia Belluz, Brad Plumer, and Brian Resnick for their wonderful July 2016 Vox article, “The 7 Biggest Problems Facing Scientists According to 270 Scientists.” As one of my nephews would say, “Nailed it!”

The authors surveyed  270 scientists all over the world, including graduate students, senior professors, laboratory heads, and Fields Medalists. In a nutshell, they learned  that scientists’ success often isn’t measured by the quality of their questions or the rigor of their methods. It’s instead measured by how much grant money they win, the number of studies they publish, and how they spin their findings to appeal to the public.

Here are some of the seven points that really resonated with me, a woman living with Stage IV breast cancer who is relying on research to help me–or failing that–my family, friends and well, everyone. Please note that these points as I am relaying them are in reverse order of importance.

WHERE ARE THE CELEBRITY MOLECULAR BIOLOGISTS? Point No. 6  hit home for me: Science is Poorly Communicated to the Public. “If I could change one thing about science, I would change the way it is communicated to the public by scientists, by journalists, and by celebrities,” writes Clare Malone, a postdoctoral researcher in a cancer genetics lab at Brigham and Women’s Hospital.

Amen! The general public has no idea that breast cancer represents something that went wrong at the cellular level. It is not a punishment for eating too much sugar or too little kale. It is not God’s way of sending you a wake-up call. It means that something has gone wrong with some of your 30 trillion cells and they are growing out of control. The onset and progression of cancer is due to multiple dysregulated proteins and cellular pathways.

But according to musician and amateur molecular biologist Melissa Etheridge, “Cancer is just a symptom of our bodies being out of balance and the cure is to understand health. It’s to understand our bodies and our spirits—our souls—better. That’s the cure.”

 Melissa Etheridge was diagnosed with Stage 2 breast cancer in 2004. She had a lumpectomy, 15 lymph nodes removed and then  five rounds of chemotherapy and radiation. Apparently this is the basis of her expertise.

In her spare time, Etheridge dabbles in genetics, too.  In a 2015 she told AARP: “I have the BRCA2 gene but don’t encourage women to get tested. Genes can be turned on and off. I turned my gene on with my very poor diet.”

The article drew the ire of many, including a non-profit that advocates for those with hereditary breast and ovarian cancers. “Everyone is born with two copies of both the BRCA1 and BRCA2 genes, which play essential roles in preventing cancer,” wrote Sue Friedman, executive director and founder of FORCE. ” Individuals born with a change or mutation in one of these genes bear a higher lifetime risk of breast, ovarian, and other cancers than those without a mutation not because the gene is ‘turned on’ but because they lack a working copy of one of the genes involved in preventing cancer development.

Attention journalists–some celebrities are knowledgeable about their conditions–but please give some thought as to how these influential figures’ words and actions will be received. Angela Jolie, for example, seems well-informed about why her personal family history made a prophylactic mastectomy and oophorectomy a logical choice–for HER. However, please take the time to point out that MOST cancer is NOT hereditary–90 percent of ALL cancers  are considered sporadic, meaning they just happen. So in other words, the vast majority of us–in looks or genes–are not like Angela Jolie at all.

Another plea: Please remember those who won’t “kick cancer’s ass.” It’s not like we did something wrong or we didn’t try hard enough or we blew off doctors’ appointments. We are living with a chronic, progressive and ultimately fatal disease. Don’t treat us like losers or pretend we don’t exist. Think outside your pink ribbon expectations.  Breast cancer is second only to heart disease and lung cancer as the leading cause of death in women. Where are your lung cancer special sections? Pancreatic cancer is a devastating diagnosis–there is no early detection for this disease. Like ovarian cancer, it is a silent killer–where are those stories?

As someone living with the fatal form of breast cancer, I am so tired of self-appointed experts–celebrity and other wise–expounding upon a disease that they know little about. I am a member of United Airline’s MileagePlus program. I have been a passenger on many flights.  Amazingly, I have no insights on the science behind keeping a plane aloft, how to fly a plane or the latest pilot union grievances. Journalists: When interviewing a celebrity, please ask yourself, “What makes this person an expert? What is their understanding of basic human biology let alone the disease in question?”

MUST BE THE MONEY–the authors noted that US academic researchers need outside grants to pay for their salaries, assistants, and lab costs.  University funding is paltry–many faculty are expected to cover at least 75 percent of their salaries with grant money. Grants typically expire after three years–far too short a time to supply the kind of research needed for meaningful results in studying metastatic breast cancer. Research can take decades.

Our federal government is the largest source of cancer research funding and as Vox reports, “that pool of money has been plateauing for years, while young scientists enter the workforce at a faster rate than older scientists retire.” You can bash all the breast cancer non-profits all you want for funding more “awareness” than research. But where are the protests, the outrage over the federal government slashing research funding? The Moonshot is all well and good, but it can’t eradicate YEARS of federal penny-pinching and indifference when it comes to research. As Belluz, Plumer and Resnick observe:

Take the National Institutes of Health, a major funding source. Its budget rose at a fast clip through the 1990s, stalled in the 2000s, and then dipped with sequestration budget cuts in 2013. All the while, rising costs for conducting science meant that each NIH dollar purchased less and less. Last year, Congress approved the biggest NIH spending hike in a decade. But it won’t erase the shortfall.

The consequences are striking: In 2000, more than 30 percent of NIH grant applications got approved. Today, it’s closer to 17 percent. “It’s because of what’s happened in the last 12 years that young scientists in particular are feeling such a squeeze,” NIH Director Francis Collins said at the Milken Global Conference in May.

 James Watson was 25 years old when he co-discovered the double helix structure of DNA in 1953. Watson benefited greatly from the work and mentorship of older colleagues. Where are the James Watsons, Frances Cricks and Rosalind Franklins of 2016? Sadly, they are probably going into more lucrative fields–and they probably aren’t staying the US, either.

There is actually a non-partisan group dedicated to  “seeking the immediate restoration of funding for NIH followed by steady, predictable budget support in the future to enhance lifesaving research for patients around the world.” Medical research in the United States is in crisis according to ACT for NIH. “Adjusted for inflation, NIH receives nearly 19 percent less funding than it did in 2003. Because of this decrease in funding, NIH must reject research proposals that could lead to future discoveries of cures and treatments for cancer, Alzheimer’s, heart disease, stroke, diabetes, and other diseases. Our brightest young scientists are turning to other careers, and  other countries now threaten our global leadership in biomedical research.”

Again, where is the groundswell of outrage?

Global SpendingPUBLISH OR PERISH–Researchers are under enormous pressure to publish–unfortunately, the need to amass credentials can sometimes lead to the publication for the sake of publication–we end up with white-bread-and-mayonaisse studies that will ultimately help no one–except the authors’ careers. Metastatic breast cancer research creeps along at a tortoise-like pace–meanwhile these MBC researchers are being lapped by hares, eager to advance their careers. Sometimes researchers–perhaps even unconsciously–may create studies that are heavy on hype but slim on actual meaningful results. Says Vox:

The consequences are staggering. An estimated $200 billion — or the equivalent of 85 percent of global spending on research — is routinely wasted on poorly designed and redundant studies, according to meta-researchers who have analyzed inefficiencies in research. We know that as much as 30 percent of the most influential original medical research papers later turn out to be wrong or exaggerated.

The Vox article does not specifically address metastatic breast cancer research funding. But the Metastatic Breast Cancer Alliance (MBCA) has identified the following roadblocks to MBC research:

 Funding

  • MBC researc is  underfunded. MBC-focused research made up only 7% of the $15-billion invested in breast cancer research from 2000 to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. Specific scientific areas are understudied. The field of MBC research is relatively small. 
  • Overall cancer research is also underfunded (0.1% of the Federal budget.) Other areas receive more funding including the military, farm subsidies and education.

Matched Tissue Samples

  • To advance MBC research, better access to tissue is needed, including the primary tumor and interval blood samples collected and banked between the primary and development of the recurrent metastatic tumor.
  • MBC tissue from different populations needs to be studied (e.g., MBC in younger, premenopausal women vs. MBC in older women).

Model Systems

  • The previously available laboratory models for MBC research were discouraging but in 2013 and 2014, several laboratories have demonstrated interesting MBC models.
  • MBC models need to be validated and standardized across laboratories.

Academic-Initiated Clinical Trials

  • Academics have not focused enough on MBC (in basic research, clinical trials or cooperative groups), although focus is rapidly shifting to MBC as a priority
  • MBC research is complicated, costly and time-consuming (e.g., early breast cancer studies in animals can be two or three months; MBC animal studies can take up to 9 months to run a single set of animal experiments).
  • Lack of academic involvement has resulted in MBC trials being led by the pharmaceutical industry and business interests, including correlative science studies.

Epidemiology

  • We need to better understand the epidemiology of MBC. How many patients have a recurrence? How many of these represent a metastatic recurrence? What are their treatments and responses? How long do they survive? We don’t know because our national cancer registry (SEER) does not track metastatic breast cancer recurrence–we only have incidence, initial treatment and mortality data. Very few people present with MBC as I did (10% or less). Unfortunately, this isn’t the  first breast cancer rodeo for most people with a Stage IV diagnosis. But we don’t have recurrence statistics. You cannot manage what you do not measure.

 

I was diagnosed with MBC in 2009. Over that time, US cancer research funding

I was diagnosed with MBC in 2009. Over that time, US  cancer research funding dropped by about 20 percent. Come on! We’re counting on you, Congress! Give NIH the support it needs!

I am proud to be a board member for the Metastatic Breast Cancer Network (MBNC). We are a founding member of  the Metastatic Breast Cancer Alliance (MBCA). The Alliance is led by advocates and, since forming with 15 groups in October 2013, has grown to be the largest breast cancer alliance in the U.S. with more than 40 of the leading cancer charities, advocacy groups and individuals and pharmaceutical industry partners represented. The Alliance is working to address all of the above questions. This work is hardly glamorous–there are many meetings, conference calls, committee work and countless hours spent writing and reviewing documents and other tasks. Most members of the Alliance are busy with their regular job duties–as someone living with the disease, I am beyond grateful for their efforts. As you can tell from the Vox article, we have our work cut out for us.  It’s not easy, but we are making a difference and will continue to do so!

 

 

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Do It For the Love Foundation: A Story About Me, Michael Franti and Bruce Springsteen

 

 

Thank you Michael and Sara Agah Franti and Do It for the Love Foundation!  Last night I saw Bruce Springsteen and the E Street Band–something I haven’t done in about 25 years and something I would likely not have done had you not provided me tickets. You did indeed inspire joy, hope and lasting celebratory memories. Thank you so much.

I am a Michael Franti & Spearhead fan. I think I first heard his songs on YouTube, when he sang with the PS 22 chorus in NYC. I have shared “I’m Alive” , “Life is Better With You”  and “Say Hey (I Love You)” with many friends–the joy and love shine through these performances. As Michael explained to his friends at PS 22, he grew up singing in church–his mother was the pianist, organist and choir director. He didn’t enjoy it (“the songs were really boring”) and often just mouthed the words. He started his own band in high school but his real enthusiasm, in those days, was playing basketball. Basketball brought him to the University of San Francisco where his dorm room was directly above the campus radio station and pretty much 24/7 bass lines thumping away. That inspired Michael to learn the bass and eventually start writing songs of his own.

In April  2013,  Steve Dezember, an ALS patient, contacted Franti to request tickets. During the show, Michael invited Steven and his wife, Hope, onstage. Although Steve was barely able to move his body, he asked Hope to lift him out of his wheelchair. Wrapped in each other’s arms, they danced on stage in front of 20,000 fellow music fans.

pKPW0qFR_400x400That experience prompted Michael and his wife, Sara Agah Franti, an ER nurse, to create the Do It for the Love Foundation. The foundation grants live concert music wishes to people living with life-threatening illnesses, children with severe challenges and wounded veterans. I heard about the group from two Stage IV metastatic breast cancer friends who had seen Bon Jovi and Paul McCartney respectively.

I was a little skeptical–what would I have to do? Would there be a lot of paper work? The application process was streamlined and took only a few minutes. I assumed it would take months to hear anything–if I heard anything at all. So I was SHOCKED when hours later, Joyce Han, outreach assistant, emailed me to ask what show I hoped to attend.

Michael Franti and Spearhead are playing the Pacific Northwest and then head to Europe. But Bruce Springsteen was coming to Chicago–but the concert was only a few weeks away. I assumed it was too late–but I thought I might as well ask. Amazingly, the answer was, yes, we should be able to get tickets for you. Just prior to the concert, Joyce sent me the ticket pick up information. I admit that even as I approached the Will Call window, I remained dubious. Would they really have tickets for me?

They did.

Great seats!

Great seats!

And the seats! Wow. No Everest-like climb to the United Center’s highest peaks. We were in the 10th row of the 100 section. The first time I saw Bruce was  at Soldier Field in 1985. I was three rows from the last row in the stadium…there were 69,800 people in front of me–and it was still a great show. In 2016, we were indoors at the United Center (“Thank God for air conditioning,” said Bruce) and I did not have to rely on the Jumbotron to see the band.

I don’t understand how a 66-year-old man can give a succession of concerts that go full throttle for 3.5 hours. Just watching him made me feel energized.

I was so pleased to share the experience with some of my family–how great that the people who have often accompanied me to appointments could join me for something so entertaining and fun. We will be talking about it for months to come–it was great.

I live with this disease every day (and every month, I see my oncologist.) This was just an awesome break in the routine.

Thanks again, Do It For the Love Foundation!

Learn more about the foundation here. 

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What Metastatic Breast Cancer Patients Wish Medical Oncologists Knew

Medical oncologist James Salwitz writes a blog called “Sunrise Rounds.”  

In a recent post, “Secrets of Cancer Survivors,” Dr. Salwitz offers 25 tips about “dealing with the dread disease.” He acknowledges that as someone who has never had cancer he isn’t qualified to pontificate about it–his intention is only to share what he has observed over his years of treating patients.

While I agree with most of Dr. Salwitz’s suggestions, it bothers me that he makes no distinction between someone being treated for early-stage disease and those who have advanced disease. It’s not as though people with Stage IV breast cancer could have prevented or survived the disease by adhering to these 25 points. I know many people who were model patients with supportive families and wonderful friends and adorable pets. They took excellent care of themselves–they hydrated, they exercised and they journaled. They were educated and proactive–I am pretty sure at least one of them could have given me a very sound second opinion.

These patients did “uncover every stone” just as Dr. Salwitz urges. But all of them died. All of them had such spirit and heart–many left behind young children–they tried their hardest. Maybe it did buy them a little more time, but ultimately they did not survive. There is no extra credit in metastatic breast cancer–no character witnesses to testify on our behalf. Molecular biology is heartless.

Much of what Dr. Salwitz says is common sense–be on time, bring a friend, don’t let cancer take over your life, educate yourself, ensure all of your medical providers are on the same page and so on. This may improve patients’ overall experiences but I doubt it will truly impact outcomes in the clinic. So much of that depends on subtype, prior treatment, comorbidities and, indeed, what type of cancer the person has. Metastatic testicular cancer is curable; metastatic breast cancer is not.

I can’t offer survival secrets. But I would like to give Dr. Salwitz and his cohorts some ideas on improving the patient experience–particularly as it relates to those dealing with metastatic breast cancer.

RELEASE TEST RESULTS PROMPTLY. When you have Stage IV breast cancer, you generally are scanned every four months to see if  a treatment is working. Some oncologists release test results as soon as the scans are read, others prefer to go over them with the patient. Waiting for results is awful–if you expect a delay (a holiday or some scans results will be delayed) please advise your patients.

Here’s another pro tip: When making a routine call, avoid the ambiguous and ominous message: “This is Dr. So and So’s office. Call us.”  HIPPA may preclude you from saying something like “Your blood work is fine,” but it may be possible to say something like “No big deal, call at your convenience.”

WATCH YOUR LANGUAGE. Shortly after my Stage IV diagnosis, my doctor said she was going to restage me. Great! Maybe I didn’t really have Stage IV breast cancer. But it turned out she just wanted to send me for scans to see if my treatment was working. Please clarify medical jargon.

HELP ME UNDERSTAND WHERE I FIT IN. When I was first diagnosed, I only knew I had Stage IV breast cancer–it was helpful to know I had a small volume of metastatic disease and that it was confined to my bones and that this was “good.”

Now, some years down the road, I want to know what treatments might be next for me–do I have many? Just a few? What is the range of AIs, oral chemos and IV chemos? Not everyone does, but I do like to think ahead.

HAPPY PATIENTS ARE INFORMED PATIENTS. The patient who is waiting and waiting in the aptly named waiting room will likely be less anxious if they know up front you are running behind. Or if the pharmacy is behind. Or if some emergency came up. Just sitting there like a bump on a log sucks.

WHAT IS NOTHING TO YOU IS SOMETHING TO ME. For years, my hospital used a CT contrast drink that required mixing with water and consumption the night before the exam. When it changed to a different type of contrast (no water added, consumed the day of the test) it was unsettling. I was used to my routine–the one thing I can control. And now it is different. No one explained the rationale behind the change–until I asked.

That wasn’t a huge deal–but other changes are. For example, one patient I know  was filled with anxiety after her oncologist’s office called to reschedule an appointment–it turned out the doctor had to participate in a  clinical trial conference call–nothing at all to do with her.

HIRE WISELY. Your front office staff, nurses and techs are a reflection of you. Would you ever tell a newly diagnosed patient “Gee, I’m having a really bad day…I can’t figure out how to install this toner cartridge in my printer”? Well, that’s what your receptionist told me–and I could readily see that her office equipment issue was worse than my chronic, progressive and ultimately fatal disease.

AUDIT YOUR PHONE LINES. Sometimes when I call my oncologist, the “good” phone person answers. What a relief–she is a long-time employee, very friendly and I know she will give the nurse a clear message. Other times, I get the “bad” phone person. Her greeting is both hostile and brief: “Cancer Center” is all she ever says but it clear that what she means is “Why must you patients continue to inconvenience ME?” She will take down the absolute minimum of information–usually just my phone number. This generally leads to further delays because the nurse will have to call me, listen to my issue, hang up so she can consult the oncologist and then call me back.

LISTEN AND LEARN. I  have noticed my oncologists’ notes often reflect who accompanied me to an appointment–but I have never been asked about this. Sometime I am not alone–but the person who is with me had to take a work call–or stay with her young kids out in the waiting room.

I have a friend who prefers to go to her appointments by herself. If she is getting chemo, she can let the nurses take care of her–she doesn’t have to worry about taking care of someone else. Similarly, she can be direct with her oncologist without fear of upsetting her companion.

 

QUIT IGNORING US. Go into an oncology clinic and try to find information and support services for metastatic breast cancer. You will find that most of the material is geared for early stage breast cancer–the American Cancer Society, a group that supplies publications on a wide variety of cancers, just gives us a page or two in its general “So, You’ve Got Breast Cancer, Sure Sucks to Be You” brochure. Note that 90% of those in the metastatic breast cancer ranks were previously treated for early stage breast cancer–therefore about 90% of the material in the general breast cancer brochure is irrelevant. Groups like MBCN, LBBC, YSC and the Metastatic Breast Cancer Network do offer brochures but patients generally have to seek these publications out on their own.

LET’S BE HONEST ABOUT THOSE TOUGH CANCERS. As someone with MBC, I really struggle during October–all those happy pink celebrations–usually for people with the curable form of the disease. What about people with pancreatic cancer–the majority of whom are dealing with metastatic disease? How about the lung cancer patients? Lung cancer is the single largest cause of cancer deaths. Not everyone with lung cancer smoked but that is the popular assumption and probably the reason we don’t see professional sports teams donning special gear to mark Lung Cancer Awareness Month.  Rather than ignoring the “difficult” cancers, why not give us equal time? Aren’t our stories worthy of sharing?

BusChancesPLEASE FORBID YOUR STAFF FROM SAYING THE BUS THING. Last year, I was upset to learn my disease progressed. A nurse attempted to cheer me up by invoking the dreaded bus phrase: “Well, you never know, you could get hit by a bus.” This only served to make me more upset. The number of people who die from MBC annually (40,000 in the US) FAR exceeds the number of pedestrians mowed down by buses and other vehicles (something like 4,300  in the US). So actually, I have a fairly slim chance of getting hit by a bus, but  a 98% certainty this disease will flatten me–although I don’t actually have a time frame for that.

INVEST IN PATIENT COMFORT. I visited one oncology office where the front desk looked like the bridge of the Starship Enterprise–very modern and gleaming. Meanwhile the waiting patients were crammed in a tiny vestibule with chairs that were probably salvaged from the Partridge Family’s garage. Same thing in the exam room–more crummy mismatched chairs and paper gowns.  Small things make a difference!

This isn’t a list of grievances–just things I think that could be better. (I’m sure I have overlooked a few.)  I have been fortunate to be under the care of gifted oncologists and I am grateful for their empathy and skill  and all the dedicated people that work with them . I hope my patient perspective is helpful!

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Metastatic Breast Cancer & Me: Just The Facts

 

 

I like reading other metastatic breast cancer patients’ blogs. It’s always, unsettling, however, if posts abruptly stop. I always wonder what happened–is the person still around? What is going on with them?

I am very much still around and nothing too extreme is going on. For those who don’t know me, here is a brief update.

HOW LONG HAVE YOU BEEN LIVING WITH MBC?  Eight years. I was diagnosed at age 43 in July 2009. I will be 51 at the end of 2016.

DID YOU HAVE A FAMILY HISTORY? Yes. My mom died from inflammatory metastatic breast cancer at age 53. Anyone with a family history should talk to their doctor to determine an appropriate screening schedule.

DID YOU HAVE EARLY STAGE BREAST CANCER THAT CAME BACK? No. I was metastatic from first diagnosis, aka a de novo presentation. This puts me in the minority–about 90 to 95% of those with Stage IV breast cancer were previously treated for early stage breast cancer. Given my mom’s history, our Ashkenazi Jewish background and other factors (not having children, etc.), I had a medium to high risk for developing breast cancer. I did not expect to be dealing with it in my 40s. We often think of breast cancer as an old lady’s disease–but younger people (and men) can get it.

DID YOU HAVE SYMPTOMS? No. Or at least not any that I recognized as such.  I had no pain. I had a hard spot on my breast–I think I did notice this but dismissed it as  it wasn’t overly obvious and did not bother me. (I didn’t perceive it as lump.) Although my cancer had spread to my spine when found, I did not have back pain. (Some cancer patients have pain and some don’t. Anyone with pain, shortness of breath, persistent cough, unexplained weight loss, or just a general feeling something is wrong–see your doctor!)

IS YOUR CANCER HEREDITARY? No. Despite my family history, genetic testing showed I am NOT a carrier of the BRCA1 or BRCA2 mutations. Being diagnosed with cancer prior to age 40 can signify a hereditary connection, but as of 2016, the answer for me is “No.”

WHAT SUBTYPE IS YOUR CANCER? I have the most common subtype: ER/PR positive and HER2 negative. This is sometimes referred to as “estrogen-receptor positive disease” meaning that the cancer uses estrogen to grow.

KOBZometa

Me getting a very routine Zometa infusion.

WHAT DRUGS HAVE YOU BEEN GIVEN? Tamoxifen (2009 to 2011); Femara (2012 to 2014); Faslodex (Jan 2015 to April 2015); Afinitor/Exemestane (May 2015 to August 2015). November 2015 to present: Xeldoa.  The last two drugs are oral chemo drugs. IV chemo is likely next, but hopefully not soon. Also: Ovarian suppression shots from 2009 to May 2012; Zometa and Xgeva (for bone strength)  at regular intervals to the present day.

HOW ABOUT SIDE EFFECTS? I have had little in the way of side effects. Fatigue would be the biggest one. I am fortunate–everyone’s experience is different.

DID YOU HAVE SURGERY? Yes. I had a left unilateral mastectomy in May 2010 with no reconstruction. Because I had a close margin, I had radiation from June 2010 to August 9, 2010.  Surgery is not standard of care for someone with metastatic disease. Because the cancer had already spread beyond my breast, removing it was a not a curative measure. The question of someone with MBC having a mastectomy remains controversial–my doctors stressed the choice was mine. Because my disease was stable and I was in overall good health, I was a candidate for surgery. Someone who is very frail or whose disease isn’t under control would likely not be offered surgery. Reconstruction wasn’t recommended. Also in the surgical category: I had an oopherectomy in 2012.  These procedures went fine–I didn’t have any complications.

 ANY LONGEVITY SECRETS? No. I am just “lucky.” I started out with a low-volume of bone-only disease. My disease has had a fairly slow tempo to date. I can’t take credit for those things–I was just fortunate my cancer responded to the drugs. I now have extensive bone mets  (again, I am glad to say they haven’t caused me pain). At the end of 2015, I learned I have liver mets–I have been fortunate to remain symptom-free. I did not have superior doctors, more powerful drugs or a better attitude than any other patient. I just was fortunate at the cellular level.

ANYTHING TO ADD? We are all statistics of one. My experience is just that–my experience.

 

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Ginny D: Being More and Doing Less

GinnyDI was sorry to learn that Virginia “Ginny” Dimpfl died last night at age 58. Because I have another friend named Ginny (Ginny Knackmuhs, my fellow MBCN board member), I thought of  her as “Ginny D.”  Ginny K lives in New Jersey and is thus “East Coast Ginny.” Ginny D lived in San Francisco and was therefore, “West Coast Ginny.”

Ginny D.  and I spoke on the phone several times in the past few months–she was interested in volunteering with the Metastatic Breast Cancer Network. Ginny D. spent the past two decades in marketing communications with Hewlett Packard. She must have been perfect for that job–she was warm, organized and direct–within a few minutes of our first conversation, she had outlined a great idea for MBCN’s annual conference. She had energy and enthusiasm–I really looked forward to meeting her in person.

But that was not to be. Ginny D and I spoke for last time about a month ago. Her treatment was not working and she was looking for a clinical trial.  Despite this dizzying turn of events (and attendant physical discomfort) Ginny D’s voice was no less cheerful or enthusiastic. She was sorry she couldn’t do the project we’d discussed–although we barely knew each other, I sensed Ginny D. was a person with a keenly developed sense of responsibility–if she said she was going to do something, she wanted to honor that commitment. I assured her everything would be fine and that of course taking care of herself should be her top priority.

Ginny D was first diagnosed with Stage IIb, ER/PR+, HER2 negative breast cancer in May of 2012. She had neoadjuvant chemo, a mastectomy and radiation in January 2013.  For a year, all was well–but in January 2014 she learned she had liver mets. “I have moved from a corporate marketing career, to focus on ‘being’ and ‘writing,’ ” she said in June 2014 when she contacted MBCN. “The struggles are different, the questions more, the meaning of all greater. I now view breast cancer as entirely different disease.”

Ginny D submitted the following essay to the Bay Area Breast Cancer Connections Annual Writing Contest. She won the contest.

Today Is Enough

By Virginia Dimpfl

New York was shivering under a polar vortex while here in California we were doing daily rain dances to ward off one of the worst droughts in history. But I was off to The Big Apple in the morning with some gal pals and nothing was going to deter me. I had a great plan: four friends, three plays, two pizzas, one shopping expedition, all finished off nicely with a walk through Central Park in the snow and a whole lot of laughs in between.

It had been exactly one year since I completed my breast cancer treatment, and I was still practicing when to say “yes” and when to say “no.” I was saying yes to fun, friends and family that made me laugh out loud, and who supported and encouraged me to move on from what was no longer working in my life. I said no to the demands of my corporate job in favor of the more flexible hours of consulting, and was declining dinner parties that required me to bring the apps, not the software kind, but those featuring the latest artisanal cheese, skewered this, roasted that, or pizza topped with arugula. Going away with girlfriends for the weekend, however, was new for me.

I was a work in progress, educating myself and working hard at doing all I could to keep the cancer from recurring. I threw out the last of the toxic cleaning supplies and plastic food containers, hung out in the aisles of health food stores, read shampoo labels and dropped off truckloads of pots and pans with coatings of unknown origins. I was determined to live healthier, more joyfully and with greater purpose than ever before. I had accepted the moniker of ‘survivor.’

Walking through our front door the night before leaving, I was anxious to tell my husband, the latest details of my New York travel plans. He didn’t so much as greet me at the door as simply handed me the phone, “It’s your Doctor.” In a New York minute, all of my joyful doing and practicing of new life lessons faded to grey as the anxiety of the cancer returning came into view. On the other end of the line, my oncologist encouraged me to enjoy my weekend away assuring me that we would redo my blood work when I returned. In the meantime, she would set up an ultrasound and MRI just in case. I hung up knowing that “when I returned” I would be facing the news that my cancer had returned unwelcomed.

It has now been six months since I received the diagnosis of metastatic breast cancer. I am one of more than 155,000 men and women for whom there is no cure. My course of treatment is not as clearly defined as it was with my initial diagnosis. I will stay on an oral chemotherapy regimen until the cancer cells are no longer retreating or the side effects become too debilitating. After that I will consider the next course of treatment and the next and the next. But, so far, so good.

With metastatic breast cancer comes one kind of clarity: I no longer live with burden of uncertainty of whether the cancer will return. I live, instead with the knowledge that it has returned. This unconsoling clarity raises more uncertainties, different burdens, new questions. Am I still a survivor? Will the cancer metastasize to other organs? What does this all mean for my quality of life? How do I want to spend my days and nights now? How many more days and nights do I have to spend?

Of course, these are big life questions to which there are no universal or certain answers. But my new reality requires new learnings and new knowledge. Here’s some of what I know today:

I know that I don’t want to go to battle against something that has no known cause or cure, rather I want to continue to nurture the compassion in myself that will help make a difference to me and others in my life.

I know that I need to find new language that describes my own personal journey and that being a ‘survivor’ is no longer adequate or descriptive enough as I face the limits of this metaphor.

I know that some days I am better and more skilled at living with new uncertainties than on others.

What I have done, and what I’m doing is enough. It is enough to read a poem, to drive my neighbor to church on Sundays, to walk 3 – not run 5 – miles with a friend, to send a surprise riddle to a grandniece or nephew. It is enough to write a letter, sign a petition, donate my time and money to those organizations that matter most to me.

I know that for today it is enough to practice being more and doing less.

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109 US People (Women AND MEN ) Die Every Day from Metastatic Breast Cancer and Are Ignored; Orangutan Dies from Metastatic Breast Cancer and Makes News…

109 US people (women AND MEN ) die every day from metastatic breast cancer and are ignored; Orangutan dies from metastatic breast cancer and makes news

109perday

Per this article:

09/10/2014 | Salt Lake Tribune (Utah), The

Eli, a 24-year-old male orangutan at Utah’s Hogle Zoo, has died from metastatic breast cancer. He is one of three orangutans known to have had breast cancer and the only male. A tumor was removed after the cancer was diagnosed in 2011, but recent symptoms led to an exploratory surgery, and Eli died during the procedure. Preliminary data indicate the cancer had reached his liver and neck. “We were hoping to find something fixable,” said veterinarian Nancy Carpenter. “The staff worked tirelessly, but the mass in his neck was blocking his airway, and he succumbed.”

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Metastatic Breast Cancer Makes Mother’s Day Difficult

I just finished reading “The Day I Started Lying to Ruth: A Cancer Doctor on Losing His Wife to Cancer.”   The author, Peter Bach, is a physician, epidemiologist and writer at Memorial Sloan-Kettering Cancer Center where he is Director of the Center for Health Policy and Outcome. He is a gifted communicator and this is a compelling–if sad and sobering–essay.

 

PeterBach

I was shocked and dismayed to learn that Dr. Bach’s wife, Ruth, died in January 2012 from metastatic breast cancer. She was 46.

I recalled the Bachs from a 2011 series of blog posts in the New York Times. The seven-part series started with “When the Doctor’s Wife Has Cancer” in February 2011 and concluded with April 2011’s “Back to Work and Life With a Fresh Perpective.”  In the April 2011 installment, all seemed well–Ruth’s hair had grown back following the conclusion of her chemo. The piece ends with the couple enjoying a gorgeous day at the beach with their son, a happy ending to what had been a frightening chapter in their lives.

So how could this woman possibly have died a mere nine months later?  Bach did not assign a time frame to his New York Times 2011 series–as many readers probably did, I assumed Bach was writing about events in real time, but that wasn’t the case. In his most recent article, we learn that Ruth was first diagnosed with breast cancer in 2008.  So the New York Time series actually described events from three years prior.

Still, even with this timeline clarification, the news is no less incomprehensible. In June 2011, just a few a months after the publication of the NYT series–and three years from her first diagnosis–the Bachs learned Ruth had a metastatic recurrence. She died eight months later in January 2012.

Bach’s thoughtful NYT series included this March 2011 reflection on the risk of breast cancer recurrence. A mere three months after that story was printed, he and Ruth learned her cancer was back (after three years), and this time it was incurable.

How awful for all concerned.

When I read Dr. Bach’s account of his wife’s experience with metastatic breast cancer, I felt a familiar blend of emotions: sympathy for Bach and his young son, anger that yet another young life was lost  and despair that even people as smart and well-connected as the Bachs were powerless against this insidious disease.

Mother’s Day is this Sunday, May 11, 2014. It will be hard day for the Bach family as well as the families of  some of their fellow Memorial Sloan-Kettering patients who lost  young mothers to metastatic breast cancer, including two who shared their diagnosis online and in print:

Meredith Israel, mother of a five-year-old died on December 23, 2012 at age 39.

Elisa Bond, also 39,  died on March 26. 2014, a few weeks prior to her daughter’s fourth birthday.

The following women were not MSKC patients and not all of them were mothers. But  they were all too young:

Lisa Lynch was 33.

Olga Simkin was 34.

Maria Madden was 37.

Jennifer Lynne Strutzel Berg was 37.

Susan Niebur was 39.

Beth Bell was 40.

Samantha Pritchett was 40.

Dana Robinson was 41.

Rachel Cheetham Moro was 42.

Zoh Vivian Murphy was 45.

Barbra Watson-Riley was 45.

Acacia Warwick was 46

Suzanne Hebert was 47.

Mary J. Corey was 49.

Shelli Gibbons was 49

Martha Rall was 49.

 

“We need focused research to change incurable metastatic breast cancer into a treatable, chronic condition like HIV-AIDS–where patients can now live for 20-30 years with treatment after their diagnosis,” says Shirley Mertz, President of MBCN. “If gay men, who were then scorned by society in the 1980s, could demand and receive focused research and treatments for their disease, why can’t we women–who are wives, mothers, daughters, sisters and grandmothers AND over half of the population–receive similar research that will find strategies to keep us alive for 20-30 years?

“Are we not worthy of this effort?  Are we ignored because we quietly live with our disease?”

Well, are we?

 

 

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R.I.P. Elisa Bond

NEB

I was sorry to learn that Elisa Bond died on March 26, 2014. My condolences to her friends and family.

Elisa was diagnosed with metastatic breast cancer  in February, just nine days after her husband was diagnosed with Stage 3 rectal cancer. As the New York Times reported, “Until February, Nathan and Elisa Bond were about as ordinary a 30-something couple as you could find in Brooklyn. Mr. Bond, 38, was a teacher and an artist; Ms. Bond, 36, worked for a real estate broker; their daughter, Sadie, had turned 1 in the fall. The last thing on their minds was cancer.”

 

I didn’t know the Bonds, but they touched my heart and many across the nation in April 2011 when they appeared on the “Today” show. ” In a couple of decades of covering everything from hurricanes to terrorist attacks, few stories — and people — have touched me more than the Bond family,” writes the Today Show’s Janet Shamlian. “I had an immediate connection with Elisa. We became friends. She was in Brooklyn and I was in Houston but we traded Christmas cards, emails and long-distance affection.”

In December 2011, the Bonds appeared on the Today Show again, but this time,  with some great news. Elisa had an excellent response to Herceptin and chemo–the cancer that had spread from breast to her brain and liver could no longer be seen. She had No Evidence of Disease (NED). Unfortunately, this did not last–her cancer returned in March 2012.

In April 2012, writing on the Family “Bond” ing Time” a blog for friends and well wishers, Elisa was candid as she reflected on the impending one-year anniversary of her cancer diagnosis and that of her husband. “I am a basket case,” she wrote. “My social worker and shrink had warned me that “anniversaries’ are often trying times for cancer patients.  I had no idea.  With the anniversary, everyone around us is joyful and celebratory saying ‘wow, isn’t it amazing?  A year ago, all this started and now you are both well.’  WHAT?  And I know what they are referring to…I was caught up in an exuberance.  The Today Show.  The “No Evidence of Disease” (N.E.D.) status. Nathan’s surgery and a cherry on top.  None of it was or is that simple.  And it definitely isn’t The Today Show’s fault.  They were only following my lead.  I was doing cartwheels.  This was the news I’d been wanting to hear for almost a year.  I/we heard what we wanted to hear.  We heard what I/we wanted to hear.”

I think many people with metastatic breast cancer can relate to the roller coaster Elisa described as well as the difficulty of explaining metastatic cancer to other people. I also think others with MBC  took  inspiration from her outlook, such as when she wrote of her great joy to see Sadie  complete her first year of nursery school:

I would say 99% of the time we live most days like there is a tomorrow.  We try not to get ahead of ourselves around here.  Planning our own calendar in advance is always crap shoot but we go for it just the same.  Then life sneaks up on us.  We look a few weeks ahead and a day on the calendar pops-up at us which has already been pre-set and not by us.  In this case, today’s event had not planned by us, but by the powers that be…the ever-powerful school calendar.  Today is that day. TODAY!  Today is SPECIAL!

Amen.

In lieu of flowers, the Bond family has asked people to consider donating to Sadie’s education fund  or the  Avon Foundation’s Breast Cancer research efforts.

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