Sunday, December 4, 2016

On Tolerating Uncertainty

I found this gem in my Tumblr archive. I posted it back in October 2011 and completely forgot about it.

Five years later it rings just as true as it did back then, and even more so since I attended the first Shared Decision Making Summit where I gave a presentation about my own decision making process around genetic testing. That presentation was based on this blog post in which I remarked on the value of tolerating uncertainty.

Here's the gem from my Tumblr archive:

This great quote addresses the difficult decisions one has to make when faced with a breast cancer diagnosis. It’s from an excellent blog post by Lisa Bonchek Adams in response to a post by Dr Susan Love about wishful thinking and breast cancer:

“I personally believe that the ability to tolerate ambiguity and uncertainty 
is a key part of the decision-making process.
I don’t say I’m cancer-free: I never say that.
I never say a double mastectomy means I won’t get cancer again.
I know what I had.
I know what I did.
It’s about well-informed choices.
I know what might happen…
In the end, it’s not just about the statistics: it’s about the person.”

—Lisa Boncheck Adams

Tuesday, September 27, 2016

May The Odds Be Ever In Your Favor, Or, My Adventures In BRCA 1 & 2 Testing

When I was first diagnosed with early stage invasive breast cancer, I was 29 and it was 1994. I was not married, I was not in a relationship, I had not had any children… and, nobody in my family had ever had cancer.

A few years after I had completed surgery (lumpectomy and removal of about 20 lymph nodes from under my arm), radiation and chemotherapy, my oncologist was urging me to get what was then a very new kind of test: a blood draw to see whether I had the BRCA 1 and 2 Genetic Mutations.

When she first told me about the test for the two mutations and recommended I take it, I did what I always do. I researched the the ins and outs of it, beginning with an in-depth conversation with her: pros, cons, knowns, unknowns… and I spent much, much, much time reading, researching and pondering it so as to have a 360 degree understanding of everything that testing or not testing would entail for me.

Then I went back to see her and ran these assumptions and conclusions by her:

Assumption 1: I was being “watched like a hawk.” This was my oncologist’s oft repeated mantra at my several times per year, anxiety- and misery-producing follow up appointments which would occur, like clockwork, after my regularly scheduled, #scanxiety-producing screening appointments. I had been diagnosed with cancer at a young age, nobody knew why or how it had happened, and despite all the aggressive measures I had taken, there was absolutely no way to guarantee that it had not or would not metastasize (aka, come back and kill me). Hence the Hawk Surveillance Protocol.

Assumption 1.a.: Because I lived neither in Antarctica nor on a desert island, but in Los Angeles, I had quick access to world class medicine and doctors thanks to a great insurance policy that I was sacrificing many things to maintain.

If BRCA Positive: If we found that I was positive for one or both mutations, my only options were the A and B combo below:
  • A. Radical Surgery Amputation and Mutilation... as in, taking almost everything that made me a woman off of and out of my body. Removal of both breasts, both ovaries and both fallopian tubes (goodbye any possibility of having children, goodbye sexuality as you once knew it, hello menopause 20 years too soon).
  • B. Continue With The Much Dreaded And Life-Disrupting Hawk Surveillance Protocol... for, basically, ever, because, and THIS IS KEY: Even with radical surgery there was still a chance I could develop breast and/or ovarian cancer in the corresponding microscopic cells that escaped the scalpel (there is no way to guarantee that every single potential offensive cell is removed). Sure, only a teeny tiny chance, but then again, when I asked what my odds of getting cancer had been as a 29-year old with no family history of cancer, the answer was “maybe 1%.” Alrighty then.

If BRCA Negative: If we found that I was negative for both mutations, my only options were this A, B and C combo:
  • A. Continue With The Much Dreaded And Life-Disrupting Hawk Surveillance Protocol .. for, basically, ever.
  • B. Hope And Pray... that the cancer would not metastasize.
  • C. Stay On Top Of Developments In Science and Medicine... while hoping and praying for, and I am revealing my hand here, truly actionable progress.

After all my due diligence, the conclusions I came to made me want to tear my hair out. They just did not seem to make any sense.

The only thing that made any sense was that I was basically screwed either way and, the best thing genetic testing as we knew it then could offer me was the iconic phrase from the Hunger Games: “May the odds be ever in your favor.”

And so, I decided to refuse BRCA testing.

My oncologist was not happy, but, her picture should go on a billboard next to the definition of Shared Decision Making. We were able to discuss my conclusions and concerns for my quality of life, and when she was confident I was making an informed decision she gave me her blessing. This did not mean she was giving up on the idea of my getting tested—she continued to check in with me on the topic in our subsequent appointments over the years.

What has left a deep scar is the extreme resistance I encountered from every other doctor I encountered in my many, many, many various and sundry follow up and screening appointments.

These “I only want what’s best for you” doctors would immediately ask if I’d had the test and upon hearing my reply, urge me (aka, give me unflinching reams of unsolicited advice; these were not oncologists—I’m talking radiologists, allergists, dermatologists, gynecologists etc.—and this was none of their business) to get tested, usually justifying their advice with words spoken ominously: “because of your history” and “because you are so young.”

They all had a lot to say, but none of them were interested in my reasons for refusing.

At one appointment it got so bad that, in tears, I had to tell this one doctor to never bring up the topic with me again, and at another, my soon to be not ob-gyn breezily said: “if you’re positive, I’ll just take everything out.” She didn’t follow those words with “no big deal,” but given her tone of voice it was implied.

No big deal? SRSLY?

Looking back, I can now appreciate that the idea of a simple blood test—one pinprick, one vial—being able to predict a person’s risk of developing not one, but two deadly cancers (breast and ovarian) was a major, major oncology breakthrough.

And beyond predicting a person’s risk, that blood test could also serve to explain WHY someone—especially a young woman—had developed cancer in the first place.

So yes, genetic testing for breast cancer was new and shiny and exciting and it now makes perfect sense why all of these doctors were so enthusiastic about my getting tested.

It does not, however, justify them ignorantly bullying me, trying to reassure themselves at my own expense.

Funnily enough, I am confident that my decision to refuse genetic testing actually helped me.

Eleven years after my first diagnosis, my oncologist found a new breast lump when digging deep into my breast tissue. After the biopsy confirmed it was indeed a second, primary invasive breast cancer, she said “you need to be tested for the BRCA 1 and 2 mutations now.” Without the slightest hesitation, I agreed.

Irony of all ironies, I tested negative for both mutations.

Bottom line, in retrospect, not knowing that I was BRCA negative helped me diligently stick to the agonizing Hawk Surveillance Protocol, which led to my 2nd diagnosis (and later on 3rd primary diagnosis) happening at a very early stage.

Going to those appointments ripped large chunks of myself out of me. They reactivated prior traumas and engendered new ones. But, the unknown is what kept me faithful. Had I learned my negative status earlier, I might have blown it all off.

In conclusion, this is what worked for me.

I am not advising anyone or everyone to do what I did, but I am telling this story to remind people that things aren’t always black and white, and that WE NEED BETTER, MORE HUMANE OPTIONS for people who learn that they have genetic mutations like BRCA 1 and 2.

Removing both breasts, ovaries and fallopian tubes is not a truly acceptable option, especially for younger women, given the profound physical and emotional impact those surgeries incur. We have to do better.

It may be empowering for the right person at the right time to have more data—but to me, more data without truly actionable solutions given my circumstances was simply not good enough.


This post has been in the works for a few years. The invitation to speak at the first Shared Decision Making Summit was the impetus to finalize it and use it as the basis for the talk I gave there.

Tuesday, September 6, 2016

All The People Who Died

I always forget that one grief is tied to all the others. That one loss revives all the others. That—at least for me—someone else's loss, someone else's pain can reactivate my own.

I experienced my first loss at age four. My father died. His name was Harry. When I was a little older I found out he had taken his own life.

Then three years later, my grandfather died. His name was also Harry. I called him Papa. His second heart attack killed him.

My mother and I moved back and forth through different countries, and the losses kept piling up: Loss of home, of family, of friends, of community, of schools, and even of landscapes.

My family—a dual lineage of stalwart survivors—handled loss with a combination of denial and a stiff upper lip, and therefore, so did I.

We didn't know any better.

More people died. My great-grandmother. I called her Gran Gran.

My three remaining grandparents. Bobba, Zaider, and Marzie.

And, they have kept on dying to this day. 

My two aunts. Beebee and Pam.

My Cousin Al.

And, more beloveds: Beloved friends, beloved colleagues, beloved mentors. Grant, Jody, and more.

And just a week ago, an 18-year old boy I had never met took his own life. His parents are friends of my dearest friend. Their kids were at school together, played together, grew up together. 

I have never met his parents. But my friend's grief, the boy's family's grief, the children's grief, the community's grief, the fact that like my father, the boy took his own life, all of that made a beeline for my heart and ripped it to shreds all over again.

It has taken decades, but over the past few years I have learned that the only way to handle grief is to face it, to name it, to let it live in you, to let it hijack you, to surrender to it. 

The practice does not come naturally to me. It explains why I am so surprised and resentful each time I am overcome with a sadness so acute and painful it stops me in my tracks.

I leave you with the song that says it all for me: Jim Carroll's "People Who Died." Everything about it, the raw, punk sound, the lyrics, the absurdity, it all speaks to me like nothing else.

I chose this version from YouTube as it showcases Carroll's lyrics. 

Monday, July 4, 2016

Happy 5th On The 4th, #BCSM!

Dear #BCSM:
Happy 5th on the 4th!!
Here's to many, many more!!
Thank you, dear Jody (we miss you), Alicia and Deanna. And thank you to ALL. My life is a Zillion times better thanks to #BCSM.

Monday, April 25, 2016

Thank You, Jody

This post is in response to the recent announcement that Jody Schoger, co-founder of the #BCSM Chat and Community, has entered home hospice as her treatment is no longer effective. Jody has metastatic breast cancer.

I posted this on Facebook but want it to live here on my blog as well.

*  *  *  

Dear Jody,

The impact you have had on my life is profound and far-reaching, all the more so because you were always "just" being you, doing what you do.

Jody, you're The Person who quickly "saw" me, reached out and welcomed me to the wild wild world of Twitter in late 2010/early 2011.

You encouraged, mentored, and supported me in so many different ways.

Here's one of the most important: I don't know if you know this, but you are one of the advocates who set the example and inspired me to cease posting anonymously and take the terrifying step of being Out to the world at large as a person who has had cancer. And this was at a time when I was so extremely vulnerable and fragile in body, mind and spirit, just months after finishing treatment and surgeries for my 3rd cancer.

You are responsible for helping me somehow make it through that terrible day I experienced at the first breast cancer conference I naively attended: C4YW, February 2011: I didn't understand that attending a conference could trigger me, because I didn't understand that I had PTSD from Medical Trauma. Your DMs (direct messages) with me that day were a precursor to what we came to fondly call the #BCSM batsignal.

A few months later, you encouraged me to apply to Stanford Medcine X, we were both accepted, and you offered to be hotel roomies. The first time we spoke on the phone (to make those arrangements) we joked about hopefully not being axe murderers :-)

This photo of you is from that hotel room, after we had finally met in person. I will never forget how much FUN we had, feasting on delicacies we picked up at the nearby Trader Joe's, and goofing off by speaking in French accents.

I feel like I captured your sense of humor, joie de vivre and playfulness in this shot. Such a necessary contrast and corollary to the seriousness of our purpose.

The other photo symbolizes, to me, the profound impact you have had on the world beyond Breast Cancer. 

You, Hugo Campos and myself at that first Stanford Medcine X (technically, it was Med2), members of that group of founding ‪#‎ePatients‬ who, thanks to Larry Chu's invitation and challenge, came together to co-create and participate in an academic medical conference as equal stakeholders.

Jody, know that I carry you with me always.

Thank you for lighting the path and showing me the way

All my love and gratitude,

Update, Wednesday, May 18, 2016: I woke up to the news that Jody died this morning. Please read this beautiful tribute to her by #BCSM's co-founder, Alicia Staley: "Good Night, Jody."

Saturday, January 23, 2016

An Open Letter To CJ Cornelliusen James, Co-Founder Of Metavivor

Dear CJ,

I'm not one to jump into the fray and argue for argument's sake, but this one I have to respond to.

I began reading your post on the Metavivor blog: "An Open Letter To Fran Visco of National Breast Cancer Coalition" with an open and curious mind, ready to likely encounter something I would want to support and share with my network.

I am an admirer of Metavivor, given the 100% focus on funding research for Metastatic Breast Cancer (MBC).

I nodded my head in basic agreement/interest through the first three paragraphs, and then I had to do a double take:




CJ, I can understand that you and every other Metastatic Patient might be angry at the attention, focus and dollars given to early stage Breast Cancer in our culture.

Guess what: I and most every other early stage Breast Cancer "survivor"/advocate I know is just as angry.

And that is why we spend time, energy, effort and passion advocating for just the things that you are calling for in your letter.  It is why we join forces with MBC patients and advocate together. It is also why we are fed up with things like Pinkwashing, Komen's years of "awareness" media saturation, and beyond.

I don't understand, however, why you chose to publicly share your resentment of our putative "easier" situation and focus your argument there.

I might very well be NED (No Evidence of Disease) but you don't know my life. You don't have the vaguest idea of what I have been—and am still going—through after three separate early stage primary invasive breast cancers beginning at age 29.

And by the same token, you don't have any idea what other early stage "survivors" have been through either.

Diminishing and pooh-poohing our experience, stereotyping us and shaming us for any fear or pain we might feel does nothing to help anyone. Nor does reducing our lives to "odds of survival."

This alienating attitude, this pointless and unnecessary comparison—which, sadly, I have encountered many a time from some MBC patients—robs us both of a significant opportunity. The opportunity to befriend each other, to work together, to have compassion for each other, to see each other in our shared humanity.

In my opinion, this attitude of resentment is the opposite of what we often encapsulate in the term #FearlessFriends on the #BCSM chat.

I am sure all of us, regardless of stage of disease can agree with your words here...
"If you don’t tackle metastatic breast cancer… if you do nothing to prolong longevity, enhance quality of life and render metastatic cells dormant for those  diagnosed with stage IV breast cancer … then you are doing nothing to make a real difference in the breast cancer world."
...and here:
"So my input for 2016 is this: Focus on making a difference for the stage IV community. Without such a focus you fail not just the metastatic breast cancer community, you fail everyone."
I agree with them!

But placing us in opposition to make this argument is misguided and beside the point.

CJ, I have learned so much, grown so much and been humbled and inspired so much by my incredible fearless friendships with people like Rachel Cheetham Moro.

Rachel was the first Metastatic Breast Cancer advocate to open her heart to me and not resent me for having "only" been an Early Stager.

This is the exchange of tweets that opened the door and that led me to become an advocate for Mets:
The exchange comes from a milestone in the #BCSM Chat's early history: it was the first chat devoted to Metastatic Breast Cancer, and among the many important things it accomplished, it broke down the artificial wall of mutual ignorance and mistrust between Early Stagers and those with Mets, led to friendships and collaborations, and galvanized many an Early Stager to advocate for MBC.

Fearless Friendship is a two-way-street. Please consider our shared humanity. We are more powerful together.


Liza Bernstein

NOTE #1: After I published this post, a passionate discussion ensued on Twitter. I am attempting to keep track of it in this Storify: "Stronger Together Regardless Of Stage: A Twitter Discussion."

NOTE #2: Additionally, after I published this open letter, the article "Cancer, Bankruptcy and Death: Study Finds a Link," by Diane Mapes was published by Fred Hutch. It happens to shed some light on what I have gone through as an Early Stager.