Spoiler Alert: The Cure For Advocacy Fatigue Is Partnering As Equals

I am publishing this Twitter thread here on my much-neglected blog because the words came straight from the heart. As they tumbled out of my brain yesterday afternoon, I was reminded just how exhausting it can be to be an advocate in a system based on an imbalanced power structure. The person I address in the first tweet and the topic it refers to are not the point or the focus. The point and the focus are in the rest of the thread.

I have decided that I must be suffering from Relapsing Remitting Advocacy Fatigue (if you've ever had cancer or been close to someone who has, you know that Fatigue is the F-Word of Cancer—it does NOT mean "tired" and is not mitigated by naps, juicing, yoga, positive thoughts or much of anything else).

Earlier this year, I had written about the costs of advocacy, and later, about the imbalance in doctor and patient advocate Twitter engagement at ASCO 2019 for Symplur's blog. Looking back, I see the fatigue has been building.

It takes energy to do the work we advocates do, and then it takes extra energy, especially after gains have been made, to have to fight to be seen, heard, respected, included, and even further energy to try to do so with some measure of grace.

Hello @DrN_CancerPCP. I see you're new to twitter. Welcome! A sure way to build community is to acknowledge those who educate and add to the body of knowledge. Yesterday's main #survonc contributions, beyond @subatomicdoc's came from @maryam_lustberg @DrAttai @stales & myself. 1/ https://t.co/Xt35K04T5i

— Liza Bernstein (@itsthebunk) August 21, 2019

Two of us are are passionate patient advocate leaders (and who each happened to have had cancer three times). One of us is the first EVER to have co-founded a cancer-specific online community via a hashtag, namely #bcsm (see https://t.co/j6CUJo2jeN) — as far back as 2011. 2/

— Liza Bernstein (@itsthebunk) August 21, 2019

One thing we all learned way back when was that the best way to help a twitter community grow is to find those who are already there, listen, acknowledge those who make contributions (imagine being a guest in someone's home), and... 3/

— Liza Bernstein (@itsthebunk) August 21, 2019

... if you are trying to connect with patients and advocates as an MD on twitter, to sometimes go out of your way to include them in the conversation. That means, to acknowledge for oneself the built-in, unbalanced power dynamic. We do great things in partnership. 4/

— Liza Bernstein (@itsthebunk) August 21, 2019

If this sounds harsh, please know that so many of us patient advocates are tired of being regularly erased, dismissed, diminished, looked over, and ignored for all the hard work we do, not for pay, but because we feel called to help based on what we've experienced. 5/

— Liza Bernstein (@itsthebunk) August 21, 2019

We educate ourselves, we attend conferences, we read journal articles, we do peer-to-peer counseling, we help newly dx'd people get through the early panic, we help them communicate with their MDs, self advocate, get a handle on their new realities... 6/

— Liza Bernstein (@itsthebunk) August 21, 2019

We reach out to our twitter networks to connect an offline person to a 2nd opinion, we connect patients who've been denied a tx by their insurer to our contacts inside the pharma companies to help them get expedited access to meds, we connect pts to clinical trials.... 7/

— Liza Bernstein (@itsthebunk) August 21, 2019

Many of us are told by clinicians here that we help them give their patients better care. In breast cancer we fight the dominant Komen-driven narrative and the pink madness, and advocate for donation money to actually fund research into Metastatic disease. 8/

— Liza Bernstein (@itsthebunk) August 21, 2019

In lung cancer we fight the smoking assumptions, help raise awareness about EGFR, ALK, ROS1 and other mutations..... We work across cancer dxs with our fellow advocates, we work across professional titles to collaborate for things to be better for all (including clinicians). 9/

— Liza Bernstein (@itsthebunk) August 21, 2019

The best way to do that is to collaborate as equals within an unequal system. It might take a few extra minutes to hunt down all the replies, twitter handles, and quote tweets related to yours, but I assure you that we are a friendly bunch and all appreciate being included. 10/

— Liza Bernstein (@itsthebunk) August 21, 2019

I know based on 9 years here on Twitter that that's how to build a community of colleagues, ignite working relationships, & deeply rewarding friendships. I end my rant/semi-tweetorial by wishing you well. I hope we can all work together to help cancer pts & their loved ones. FIN

— Liza Bernstein (@itsthebunk) August 21, 2019

The irony of this thread is that hours beforehand, yesterday morning, I had had an invigorating and inspiring conversation with oncologist Gil Morgan, who had reached out to me to join his international OncoAlert network in a spirit of equal cooperation. Being dismissed and erased later on—even if due to "benign neglect"—was just another reminder of how much work we all still need to do.

Thank you, Gil, for inviting me and being open to actually talking with me so that I could have a better understanding of what it is you are doing with #OncoAlert. Patient Advocates and Oncology Professionals collaborating as equals is key! I am very excited!

— Liza Bernstein (@itsthebunk) August 21, 2019

I might be in the throes of Advocacy Fatigue, but I am not stopping my work anytime soon. I know that the cure for it is to partner as equals (which is actually fun!).


In conclusion, I highly recommend this article, shared by my fellow advocate Erin Gilmer:

I think this article is useful for those coming into any movement/community. Esp sitting down and listening, recognizing all voices that came before, working with communities affected, acknowledging when they get it wrong. cc @DrN_CancerPCP https://t.co/V9aKyoAdgN

— Erin Gilmer, esq. - Health is a Human Right (@GilmerHealthLaw) August 22, 2019

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

Shared Decision Making Summit 2016: An Unofficial Transcript

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 I had been socialized to believe 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.



NOTE

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.

.@stales TY for taking this pic-from my talk at #SDM16 on my experiences with Shared Decision Making/Decision Processes in healthcare. pic.twitter.com/nAHqcbNWev

— Liza Bernstein (@itsthebunk) October 25, 2016