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.


  1. I agree with everything you've said.
    We have to work together if we're going to accomplish anything.

  2. BAM this is perfection at it is best. And I support Metavivor 100% but am done with the early stage vs mets. We are all in this together otherwise we have nothing behind us. Seporah used to say "be my voice because when I am gone no one will hear it any more". I took that to heart! Thank you

    1. Thank you, Ann Marie. YES, I remember Seporah saying that. Thank you for reminding us all. That's exactly what Rachel embodied as well.

  3. Hi Liza,
    It's important to not build up more walls within our community, and I know that wasn't CJ's intent. Having said this, I agree with your points. While I am presently NED as well, I have witnessed the ugliness of mbc up close. And even if I hadn't, I like to think I'd still be advocating staunchly for my metster friends because no matter what stage we are or were, it truly is, one for all and all for one. Cliche, I know, but true nonetheless. And I remember that #bcsm chat. I will always remember our dear friend Rachel. Thank you for sharing some of her wisdom and yours as well.

    1. Thank you, Nancy.

      I too have witnessed it up close, and just as you said, even if I hadn't, I too see us as one for all and all for one.

      That chat and that tweet from Rachel were a game changer for me: because before that I had encountered so much hostility from MBC patients (mostly at in-person support groups) for the one thing I had never had any control over: the fact that I was an early stager. Rachel opened her heart to me—I can't say it enough—and just by being herself, educated me, inspired me and helped give me a sense of purpose when I doubted myself as an advocate.

  4. I have slowly turned away from social media for support over the last year because of this. I'm tired of being told I don't get it because I'm a baby cancer survivor. I always thought we supported each other knowing someone will be there to carry on the fight when our mets sisters pass on and/or we join the mets group.

    1. Hi Jane - I think I recognize you from Twitter, and indeed, if you are who I think you are, I noticed that I hadn't seen your tweets in a long time. Now I understand why. I am sorry to hear this. These walls serve no one. That is why I felt so compelled to write this letter. I hope we can all work together. And I am happy to know you are done with all treatment apart from tamoxifen :)

    2. PS: I can't find your Twitter handle - wanted to thank you on there for commenting here.:)

  5. I just wrote a long response and lost it. Very tired, so I don't know if I'll make any sense.

    CJ's letter troubled me because it puts things in an either/or perspective. I attended a Cancer Suvivorship Conference last weekend and there's a lot more to surviving that simply finishing treatments. While the conference addressed all cancers, the breast cancer patient was used as a paradigm illustration.

    Cancer survival often has ramifications that play out for years and years. Cardiac issues, cognitive dysfunction, premature menopause, permanent infertility, chronic pain, depression, financial struggles, relationship issues, etc., etc., are not to be belittled. One may say, "But at least you're still alive to have those problems," but to say such a thing is to dismiss the reality of survival.

    I believe we can work on prevention of something while addressing treating something at the same time. For those who worked on a polio vaccine, there were others who continued working on treating those with polio.

    If we are to push metastatic disease into the chronic disease condition, we must know what that entails. It's a lot more than simply living longer. It's a full time job.

    While I'm incredibly jealous of my early stage friends who are currently NED, there's no way I want them to join my club. They are not welcome in my cancerland. However, their stories and their voices and more than welcome because they are the ones who will keep the banner flying once I'm gone.

    Thank you for sharing your story and for using your voice. We need you ... and I hope you need us as well.


    1. Hi Vickie, thank you for this thoughtful and informative response. I was supposed to attend that survivorship conference and am doubly sad as it would have been great to meet you. Thank you for reminding us of all of these issues. And yes, yes, absolutely yes we need you too! Hugs!

    2. Liza, this is an excellent response. Thank you!

    3. And to Vickie, every time I read anything you write, I think you're one of the most lovable people I haven't met. Thank you too. xo