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 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.


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, or 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…


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 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.


One final story: This is me with Leah Stein Leslie Besen who died a couple of years ago. Leah and I met online at 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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Seven Years of Metastatic Breast Cancer: My Stage IV Story

HOW LONG HAVE YOU BEEN LIVING WITH MBC?  Seven years. I was diagnosed at age 43 in August 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.


kobnueverymonthWHAT OTHER RISK FACTORS DID YOU HAVE? Well, the biggest one would be being a woman…followed by getting older… I am childless, meaning I have had a longer exposure to estrogen. Also, I am of Ashkenazi Jewish descent. About 10 percent of Ashkenazi Jewish women diagnosed with breast cancer in the U.S. have a BRCA1/2 mutation. I do not have either of these mutations, however.

Scientists believe that certain disorders became more common among Ashkenazi Jews because of at least two processes: the founder effect and genetic drift. (Read on for an explanation.)


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.” People should know that for most cancers (breast are otherwise) are not hereditary—only about 10% fall into that category. Most cancer is considered “sporadic” meaning it just happens.


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 94% 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–probably because the median age for breast cancer in the US is 61, but younger people (and men) can get it.


WHAT SUBTYPE IS YOUR CANCER? I have the most common subtype: ER/PR positive and HER2 negative. About 80% of people with breast cancer have this subtype. It is sometimes referred to as “estrogen-receptor positive disease” meaning that the cancer uses estrogen to grow. The other two common subtypes are generally referred to as HER2 positive and triple negative. Someone with HER2 positive breast cancer can used a “targeted” therapy; unfortunately with the triple negative subtype there is nothing to target and chemotherapy is generally the only treatment option available.


WHAT TREATMENTS HAVE YOU HAD? People are sometimes surprised to learn that although I have lived with Stage IV breast cancer, I haven’t had IV chemo…yet. Most people are familiar with early-stage breast cancer where you might have surgery, perhaps radiation and then, if needed, a limited course of chemotherapy.

Stage IV breast cancer means treatment for life. Once the cancer cells escape the breast and spreads to a distant organ, there is no way to remove all of it. The Metastatic Breast Cancer Alliance uses a dandelion analogy to explain this. If you can pull a yellow dandelion up, roots and all, you have eliminated that dandelion from your lawn. If the dandelion has gone to seed, it doesn’t matter if you dug up the entire plant—those seeds have escaped. You might not see them sprout right away, but sooner or later you will.



Stage IV breast cancer is a marathon…not a sprint. Where possible, patients start with the least toxic option first. Not all patients will get the same mileage out of a given drug. It might work for months, maybe years (if you are very lucky) or not at all (if you’re unlucky). Eventually drug resistance sets in and a drug stops working. Patients must then go on to their next treatment—eventually most will run out of treatments.

Here are the drugs I have had to date: 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. Because my cancer is estrogren-driven, I had ovarian suppression shots from 2009 to May 2012 and eventually an oophorectomy. I also get a quarterly bone boosting infusion.

Surgery is not standard of care for someone with Stage IV disease but in some cases there is thought to be a benefit. I had a unilateral mastectomy followed by about a month of radiation in 2010.

kobnuwrigleyblgHOW OFTEN DO YOU SEE YOUR ONCOLOGIST? I see my oncologist monthly. If I were on IV chemo, I would see him more often. Every three to four months my oncologist sends me for CT/PET and bone scan. These test determine if my treatment is working—these tests make most MBC patients anxious—patients frequently refer to “Scansciety.” If the cancer stayed the same (nothing bigger or smaller) that means I am “stable” and that is a good thing. Having No Evidence of Disease (NED) is even better. Progression is the worst news a patients can get—it means their disease has spread and they must change treatments. Unfortunately, there is no guarantee how long one may remain stable or NED—in the majority of cases, eventually the disease does spread.


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. So far, I  have been fortunate to remain symptom-free and a good quality of life. I know this will change—so I try to live in the present. I don’t have superior doctors, more powerful drugs or a better attitude than any other patient. I just was fortunate at the cellular level. As oncologist George Sledge says, “Biology is gloriously messy.”


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

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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:


  • 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.


  • 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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Shifting Perspectives of Medical Oncologists and Doctors in General

I was diagnosed with metastatic breast cancer in September 2009. Prior to that time, I didn’t give much thought to choosing a doctor or the role a primary care physician would play in directing my care.

I was 43 and had enjoyed good health. Doctors were for sick people and I was not sick. At least I didn’t think I was.

I chose my primary care physician for his proximity to my home. I felt a little foolish making an appointment with no specific complaint, but all signs pointed toward my employment (and attendant insurance benefits) winding down, so I scheduled a check up. The nurse practitioner felt a hard spot on my breast and gave me a prescription for a diagnostic mammogram. It didn’t seem urgent…I finally  made an appointment a few weeks later.

I didn’t know it at the time, but after I went to that appointment, I crossed the border between good and bad health. Although I have continued to feel well, I am a cancer patient for life. I haven’t kept an exact tally, but I think I must be close to my 100th oncologist appointment. Many are not so lucky–I look forward to many more appointments!

In 2009, in the course of delivering the bad news, the radiologist told me I had to see a breast surgeon. I asked my PCP for a referral–he sent me to a surgeon at my community hospital.

At this time, it was thought I probably had Stage 3 breast cancer. The surgeon said I would need a mastectomy (big tumor in a small breast ruled out a lumpectomy) and probably chemotherapy and radiation afterwards.

Prior to scheduling surgery, the doctor sent me for a complete battery of imaging tests: MRI, CT, PET and bone scan. The bone scan revealed a small volume of mets to my spine. Surgery was canceled. My surgeon arranged a bone biopsy and referred me to a community oncologist in her hospital’s system.

I told the surgeon that for the sake of completeness I would be seeking a second opinion at an academic cancer center. She wasn’t very supportive of this. She made a case for staying within her hospital system. She said I would have difficulty scheduling appointments with specialists at the academic center–she, by contrast, could simply pick up the phone and easily slot me in to whomever I needed to see. She also said my records would all be at the same place, easily accessible. She assured me that “you can get everything here that they have at [the academic cancer center].”

Although I was still trying to wrap my head around my diagnosis, a faint alarm bell sounded when the surgeon tried to dissuade me from going for a second opinion. First, as a practical matter, I was  a new patient: My patient record consisted of a diagnostic mammogram, an ultrasound, three imaging tests and her notes.

It was hardly a massive archive that would be difficult to collect and  transfer into another institution’s electronic medical system. Second, as I waited in the MRI holding room–a windowless broom closet opposite the room housing the machine–it was clear to me that the small hospital did not, in fact, have the same things as the academic cancer center. Interestingly, last year, the surgeon’s medical group opened a state-of-art center dedicated to cancer treatment–so clearly there was room to grow and improve.

I went to see the oncologist my surgeon recommended. The oncologist and her colleagues worked out of a suite on the third floor of a building in an office park. Although I had a port, it could not be used to draw blood because there was no RN on duty. The patient exam room had mismatching chairs and  there was no privacy curtain–after the oncologist spoke with me, she handed me a paper gown and turned her back while I put it on. Even though the doctor would soon be examining me, it felt very odd.

As the oncologist started her exam, she yanked the gown off of me, as though she were a magician  demonstrating her ability to snatch a cloth off a table without disturbing the silverware, plates or glasses atop it. I was left clutching the paper table runner.

During our conversation, the doctor said she would need the results of the bone biopsy but for the moment, based on the pathology of my fine-needle biopsy, it looked as though I was ER/PR positive and HER2 negative. She said I would probably start on Avastin and Taxol and she proceeded to describe its side effects, with hair loss topping the list. I asked to see the chemo suite.  No patients were getting chemo–I saw a small room with four treatment chairs.

When I went for my second opinion, I was very surprised the academic center oncologist said she would recommend I start on Tamoxifin and ovarian suppression. Later, at home, I found an article on the consensus on the treatment of metastatic breast cancer.  It confirmed what the second opinion doctor said: You start with the least toxic option first.

I was furious. Why had the first oncologist recommended such a radical approach? Why had she told me to expect to lose my hair? Since I had a low-volume of bone mets it could be argued she felt an aggressive approach was warranted. It also could be argued  the Avastin and Taxol to be given in her office was far more lucrative than a bottle of Tamoxifin procured from the local pharmacy for $25 per month.

When I saw the community oncologist again, it was as if she had never proposed Avastin and Taxol. She said nothing about either drug. She said she would recommend tamoxifen. I showed her my notes from our prior visit and asked her why she had made no mention of tamoxifen.

“Are you uncomfortable with the medical advice you’re getting?” she asked in a patronizing tone. As if she was saying “there, there, don’t upset yourself over this trivial detail.” She then gave me some papers for a clinical trial and asked me to consider participating. I knew this was not the doctor for me.

Early on, I relied on my brother, John, who is a physician, to help me navigate my care options. It was he who suggested the academic cancer center. I also asked him to explain the various tests and their results and cancer in general. He was very patient and helpful. I remember asking him to come to my second opinion appointment–I felt like I was going into a duel and he would act as my second.

As a newly diagnosed cancer patient, I was  extremely vulnerable. I was emotionally fragile and entirely ignorant of the disease and my treatment options. I relied on my PCP to help me navigate an unfamiliar and frightening reality.

My now former PCP is a kind man and truly cares about his patients and serving our community. But over the past seven years,  I have learned he is not especially knowledgeable about the broader world of cancer. Last year, I had to see him about some minor ailment. I was telling him the latest developments with my MBC.

ME:  I needed to change treatment, so I a few months ago I went to Dana Farber for a second opinion.

FORMER PCP: Dana Farber? Is he any relation to Bill Farber?

ME: I don’t believe so…

In hindsight, I had a skewed opinion of doctors. My father inevitably referred to all doctors as quacks (although not to their faces). My mom, who died from inflammatory metastatic breast cancer in 1983, saw many doctors over the course of her two years of treatment. My impression was there was a language barrier with one of her doctors–she had great respect for all of them, but I don’t think she liked any of them.

Prior to becoming a cancer patient, I though you had to have clout to see the “best” doctors. I have found this is not the case. It may be true that some oncologists are heavily booked and that some clinicians don’t accept new patients, but you don’t have to be rich or important to see an outstanding doctor. I am fortunate–I have not had any insurance issues–I have been able to see the doctors I wanted to see.

Since I grew up in a small town, I though I would prefer a small-town doctor. I feared a big institution would be impersonal and potentially overwhelming.

Some years ago, I went for another second opinion at a different academic center. It definitely was not my cup of tea..stepping into the waiting area was like going to the United terminal at O’Hare after a 12-hour weather delay.

There were people everywhere–and even though it was a spacious room, it was jam packed. Rather than call patient names, each patient was assigned a number from an ATM-like contraption. When it was their to check in, patients were summoned by their numbers, using an automated intercom similar to the one  TJ Maxx  shoppers find at the checkout line: “Registrar Number Three! Registrar Number Three is now open! Number 674, please go to Registrar Number Three!”

But I have also been to two additional academic cancer centers with facilities that more closely resembled an upscale hotel lobby. I would never judge a practitioner solely based on his or her office space, but when you know you are going to be a regular customer, it is nice to go somewhere that doesn’t make you feel tense or claustrophobic.

Interestingly, I haven’t found any articles geared to patients explaining the difference between a community oncologist (either in private practice or part of a hospital network) and an academic center oncologist. I did find some written for the clinicians:

Advantages and Challenges of Working as a Clinician in an Academic Department of Medicine: Academic Clinicians’ Perspectives

Subspecialization in Community Oncology: Option or Necessity?

Systems Perspective: The Community Based Oncology Perspective

Private Oncologists Being Forced Out, Leaving Patients to Face Higher Bills

Choosing a care team is a decision that hinges on geography, insurance, disease complexities and personal preference. One size does not fit all. I really like  Dr. Larry Norton’s Seven Tips for Getting What You Need. (“If you don’t like your doctor, your doctor probably doesn’t like you.  Don’t stay with a physician with whom you’re not comfortable…”)

Most cancer patients are fiercely loyal to their medical teams–we don’t see some of our own family members as often as we see some of our doctors–it is devastating when an oncologist someone has seen for years on a regular basis retires or moves away. And of course, we always want to reinforce the validity of our own decisions.

We need to believe our individual  doctors are the best because we need them to be the best.



I wanted to help my family and friends understand what my appointment and treatment are like so I made this video. 




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I am sorry I didn’t beat cancer

Uzmay reflects on being a competitive person confronting a disease that cares nothing about personal attributes, her own evolving attitude toward a #metastatic breast cancer diagnosis and finally the realization that her voice and story can have a profound effect on others.

Left Boob Gone Rogue

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So…

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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.


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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MBCN Supports Metastatic Breast Cancer Researchers With Total Of $100,000 In Awards

Very proud to support these two gifted researchers. It was great to meet Dr. Ewald in person at his Johns Hopkins lab and learn more about the work he and his team are doing.


Editor’s Note:Here’s our press release announcing MBCN’s 2015 research grants.  Two weeks ago, en route to participate in an FDA public meeting, three members of MBCN’s board had the opportunity to meet with Dr. Ewald and his team at Johns Hopkins. We’ll share our impressions of that visit in our next installment. Stay tuned!

Patient Advocate Group Selects Johns Hopkins’ Dr. Andrew Ewald and Baylor’s Dr. Matthew Ellis as 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards

 April 10, 2015NEW YORKThe Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.

The Metastatic…

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philadelphia story

Kudos to the young people at LBBC’s Metastatic Breast Cancer Conference for organizing a strong visual to illustrate that 108 US people continue to die from Stage IV breast cancer every day. My MBCN friends are in the photo towards the end of the blog–there are 108 people in that photo.

putting the grrrrr in Grimes


The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.

Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.

I was again  reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend.  An event that took every bit of my strength, as it is tough to do…

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