Dian Corneliussen-James: A Woman On A Mission

(CJ) Dian Corneliussen-James of METAvivor / Photo Credit: Wendy Marxen, Marxen Consulting LLC

Dian Corneliussen-James, also known as CJ, has a history of helping to find missing persons. Toward the end of her 24-year career as an Air Force Intelligence Officer, Lieutenant Colonel Corneliussen-James took a position in the Defense Prisoner of War/Missing Personnel Office (DPMO) in Washington, D.C., and she continued in that position as a civilian following her Air Force retirement. The DPMO office is tasked with investigating the cases of more than 88 thousand Americans who have gone missing as a result of conflicts involving the U.S., with the ultimate goal of locating, recovering, and identifying the individuals or their remains. CJ’s job was to research archival records, analyze new reports, determine information gaps, establish collection requirements, provide leads for field operations, collaborate with other agencies, and keep family members of the unaccounted-for informed about the status of their family’s case. CJ didn’t know at the time that this particular skill set would later serve in the identification of another group of missing persons, those diagnosed with metastatic (stage IV) breast cancer.

The estimated 150-250 thousand people who are currently living with metastatic breast cancer (or, BC Mets) are not literally missing. They are known to their friends, co-workers, and family members, routinely inhabit the treatment rooms of cancer centers, and occasionally find support networks on the margins of breast cancer culture and advocacy. In other ways though, this group of diagnosed women and men is indeed “missing in action.” The regular story arcs of triumphant survivorship do not apply. These patients do not finish treatment. They seldom win the fight. According to CJ,

“The reality is that the average survival after stage IV diagnosis continues to be only 2 to 4 years. The reality is that virtually everyone diagnosed with metastatic disease will die of it sooner or later.”

The reality CJ shares reflects the fact that metastatic breast cancer accounts for 98-100 percent of the nearly 41,000 women and men who die from breast cancer each year.

BC Mets is lethal. Yet there is little attention to its realities in mainstream culture. When BC Mets does get public attention it shines a light on the good, strong, positive, and hopeful side of metastatic cancer or to the obituary of someone who fought courageously but eventually succumbed to the disease. Stories about Elizabeth Edwards’ multiple breast cancer diagnoses chronicled her “fight for survival,” her diagnostic shift from “curable to treatable,” and ultimately her death within the context of her celebrated yet conflicted political life. Still, the lessons the public could have learned about metastatic breast cancer from her experience remain clouded by hopeful stories and reports about incremental medical advancements.

A story in WebMD presented data from a study at MD Anderson Cancer Center that found only a ten percent five-year survival rate in the 1970s for those diagnosed with metastatic breast cancer. This compared to a much higher rate of 40 percent by 2004. However for CJ, these kinds of reports can be misleading. The study at the Cancer Center did not represent the entire population of people with BC Mets. When considering the population as a whole NCI data shows that the five-year survival rate for people diagnosed with BC Mets is still only about 20 percent. With an average prognosis of only two to four years after metastasis any extension of life may be “statistically significant,” but an extra few weeks of living does not necessarily constitute a success story. The end result is the same.

Metastasis is the proverbial elephant in the room that keeps breast cancer mortality statistics from declining. It is the story that, according to CJ, “the media does not want to hear and the big money organizations do not want to publicize.” She said,

“No one really wants to know about the three deaths over the past two weeks in my group of 33 local women, or the two others presently in hospice care, or the young mother with the six-month old who was diagnosed with extensive metastasis just six weeks before the delivery of her first child…The cancer/breast cancer organizations tug at the heartstrings of the public by starting their speeches with the tragic tale of someone they loved, who died. But when the collected funds are divided up, the BC Mets community is all but forgotten. Primary breast cancer, or prevention and early detection are the attention-getters and the funding recipients.”

The Metastatic Breast Cancer Network and METAvivor Research and Support, Inc. – the organization CJ founded in 2007 – are the only national organizations dedicated to BC Mets. This may explain in part why only a fraction of research in the United States examines metastatic tumors and processes, totaling about 2 percent of research allocations. In 2008 Journalist Clifton Leaf reported in Cancer World that ironically, “the vast majority of research grants and drugs are not aimed at combating what actually kills people.” Mets researcher Dr. Danny Welch astonished attendees at a recent meeting of the National Breast Cancer Coalition when he stated that only 1000 researchers study breast cancer metastasis worldwide. For CJ, this is not good enough.

“It is high time people faced the reality that prevention of breast cancer will continue to elude us because we do not know what causes breast cancer in the first place and thus we have nothing to target. While early detection has been successful in terms of diagnosing more people at stage 0 or 1, even stage zero patients can and do develop invasive breast cancers that metastasize. Many breast cancers by their very nature will continue to go undetected until they have progressed to stage II, III or even IV.”

Missing from public accounts. Missing from support networks. Missing from awareness campaigns. Missing from research agendas. And then just, missing.

When CJ was diagnosed with primary breast cancer in 2004 she was well aware of the support systems for the newly diagnosed. Her local hospital had a program called Survivors Offering Support (SOS) that provided year-long volunteer mentors to help people through their treatment. There were conferences, support programs, gifts, fundraisers, and lots of pink. After the cancer metastasized to her lung less than a year after completing her treatment (surgery, chemotherapy, and radiation), CJ entered a very different world. This time there was no mentor, no help, and no flurry of gifts. She felt deserted.

Fortunately the former Lieutenant Colonel had experience dealing with the deserted. She knew how to investigate foreign territory, how to find resources, how to galvanize people to action, how to recover the missing. When CJ called the founder of SOS to ask what they offered to people with “BC Mets,” Denise O’Neill answered sympathetically, “nothing.” CJ immediately started to collect materials and create a support system.

The SOS program and the local hospital began referring metastatic patients to CJ, and in only a year the BC Mets program was formalized. What began with an 8-person kick-off party in December 2007 quickly grew into a strong, volunteer-led non-profit organization called METAvivor Research and Support, Inc. Run mostly by those who have metastatic breast cancer, the organization was created to increase awareness, support, and research specifically for BC Mets.

To increase public awareness that breast cancer metastasis is different from what is typically portrayed in the mainstream, METAvivor created a new ribbon. CJ explains how the ribbon they designed represents both breast cancer and a connection with other cancer metastases.

“First we created a base ribbon to represent metastasis … any metastasis. Our base ribbon pin has a teal leg … symbolizing spirituality and healing. And a green leg … representing the triumph of spring over winter thus symbolizing renewal, hope, and immortality. We then superimposed a thin pink ribbon over the top to identify the origin of our particular metastasis as breast cancer. We feel a much stronger connection to others with stage IV cancer .. any stage IV cancer … than to those with an earlier stage of breast cancer, with whom we have little left in common.”

To increase support METAvivor developed a program in Annapolis, MD and a primer based on the METAvivor model on how to establish support groups specific to the BC Mets population. For their local program METAvivor made welcome bags that include books relevant to BC Mets, journals to log thoughts or track medical information, “safe” water bottles, handmade fleece throws to use during treatment, and small “surprises” meant to uplift patients. CJ established a guest speaker program for experts to share information about pain management, healthy eating, naturopathy, caregiver issues, trusts and wills, research, and other issues specific to metastatic breast cancer. Get-togethers throughout the month at coffee shops or restaurants, or even during recreational tours, give patients a chance to enjoy themselves while having regular opportunities to discuss issues or problems. The program even includes a monthly invitation for partners or caregivers to become part of the growing network of support.

While awareness and support for the BC Mets community is vital, METAvivor believes that the ultimate hope for metastasis lies with research. When she started METAvivor no existing organization was willing (or perhaps able) to earmark donated funds to metastatic breast cancer research. CJ is committed to engaging the breast cancer research community and increasing specific research funding in this area. She was the first patient advocate ever to attend the Metastasis Research Society/AACR Joint Conference, and she regularly communicates with mets researchers. METAvivor established the BC Mets Research Grant Program to guarantee that there was at least one organization where donations would go directly to BC Mets research. In January 2010 METAvivor awarded its First Annual BC Mets Research Grant to Dr. Danny Welch, and the organization has raised funds for a Second Annual BC Mets Research Grant to be awarded on Metastatic Breast Cancer Awareness Day on October 13, 2011.

CJ is on a mission to recover those who have been abandoned by the pink mainstream. She needs our help to do it.

For More Information:

METAvivor Research and Support, Inc.

1783 Forest Drive #184, Annapolis, MD 21401

Email “CJ” (Dian) Corneliussen-James: cj77@comcast.net

 

 

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16 comments to Dian Corneliussen-James: A Woman On A Mission

  • Thanks for this excellent article and thank you, Dian, for your important work.

    What a powerful line, Gayle: Missing from public accounts. Missing from support networks. Missing from awareness campaigns. Missing from research agendas. And then just, missing.

    Katie

  • What an incredible woman CJ is. And this line here make the point so well about how mets is generally perceived:….”When BC Mets does get public attention it shines a light on the good, strong, positive, and hopeful side of metastatic cancer or to the obituary of someone who fought courageously but eventually succumbed to the disease.” It’s my impression, there is nothing in the information that the public is fed, and indeed to the people that are living with mets, that tells the real story as to what they can really expect. Yes some people do very well on existing treatments, although never “cured”, and yet others do not and succumb very quickly. But what about the reality of how their final years, hours, months and days are lived out? Many would be absolutely shocked and horrified at the indignities, pain and insidiousness of how metastatic disease can play out. I only know what I know having read some blogs of some very brave women who chose to document in some detail their ordeal. Lisa Rendell, a Canadian radio personality and research mega fundraiser who passed away earlier this year was one such woman. This is her last post. (http://www.lisarendall.com/yet-another-complication-hospital-stay/) . What is there to say really, except she was clearly a woman interested in telling it like it is, as uncomfortable as that may be for society. Truth. That’s what we need so badly. Thank you CJ and PRB for continuing to tell the truth.

  • Excellent post! Any campaign to raise breast cancer awareness that does not include awareness of metastatic disease is not telling the truth, or even the reason why we need to be aware of breast cancer. CJ rocks.

  • Thank you, Anna. The discomfort around seeing and hearing the truths about breast cancer that are neither pretty nor pink can be very hard to hear. I agree that there is much to be gained from being willing to sit with that discomfort, contemplate it, and act with compassion to address it. Thank you for sharing Lisa Rendell’s last post.

  • This is important information and very necessary to help stop the pink-washing of this disease! Thanks to Survivors who because of their own experience, seek to change and improve the lives of all of us who are diagnosed. Two women in my breast cancer support group are currently Stage IV, one in Hospice; and a third has admitted to growing weary of treatment that may only extend her life by a few months . . . .

  • I’m sorry to hear about the two women in your group, Molly. We really need to support people like CJ who have come forward to tell the story of BC Mets and increase the public consciousness about this missing group of people. As she mentioned, the story of metastasis is quite different form the story represented in mainstream pink campaigns.

  • Mary

    Please correct me if I am wrong in my math. If roughly 190,000 women receive a new diagnosis, each year and roughly 40,000 women die of metastasized disease (98 to 100%) wouldn’t that mean 38% die? This is obviously not necessarily in the same year they are diagnosed. Thank you CJ for your activism in this neglected area. Do correct me if I am looking at this wrong.

  • Thanks you Mary. Of the 41,000 women and men who die each year from breast cancer, metastatic (stage IV) disease is the primary cause of death for 98 to 100 percent. Only a small percentage of the nearly 200 thousand new cases of invasive breast cancer each year are metastatic at diagnosis. So the (98-100) percentage is not out of the new cases, but out of the total number of deaths each year.

  • Bravo, Gayle! There are a number of questions people need to be asking the medical research community. The lack of funding for the form of breast cancer that actually kills us is one of the most important.

    To be honest, I think the current fashion of telling newly diagnosed metastatic women that “Well, your cancer isn’t curable, but it’s treatable. We’ll treat it like a chronic condition, like diabetes” is one way in which physicians allow themselves and others to diminish the seriousness of what women face when they get this diagnosis. to not face the true. It’s a “diminishing” move — not an empowerment move. When women with metastatic breast cancer die in the same proportions as people diagnosed with diabetes, and after similarly lengthy periods of treatment, maybe this will be true. Today, it is anything but true, and it serves to diminish and demean women who receive this form of “reassurance.” It’s not a little white lie; it’s a big pink lie.

  • Annamarie DeCarlo

    I met CJ and a half dozen other stage IV breast cancer survivors at a dinner, and, as a stage III ovarian cancer survivor, I found camararaderie with them. 75-80 percent of ovarian patients start out with the crappy odds, so I was astonished to learn that these ladies felt anything but pink. And, knowing them has turned my head around about breast cancer. What people need to understand is “98-100 percent of the nearly 41,000 women and men who die from breast cancer each year” are BC mets patients. That cannot be emphasized enough. I am posting the link to your site on my FB page. Thank you. Very nicely done.

  • I appreciate all the comments. Something I said may have been unclear … hope the following helps.

    At least 30% of breast cancer patients, who are diagnosed at an earlier stage, eventually metastasize … some earlier, some years later. I am told that doctors are not required to report the progression to stage IV so it is not exactly known how many are diagnosed with BC mets in a given year, but the number has been roughly estimated at 73,000 – 86,000 (2006 publication: Silent Voices). Of these individuals, only 1-3% will survive the disease.

    98% – 100%: Here I was referring to something different. If you look at those who have passed away from breast cancer, it is clear that 98% to 100% of them died of a metastasized breast cancer and not a cancer that had not yet metastasized. (This differs from pancreatic cancer, for example, where many die before metastasizing.) This fact is important from the research standpoint. When people donate to breast cancer research, they simply donate in general. And only 2% of those funds go into metastatic breast cancer research. So researchers rightly argue that it is an injustice that only 2% of research funds are going into metastatic breast cancer research when 98-100% of persons dying of breast cancer are dying of a metastasized breast cancer.

  • Thank you for this wonderful post. I absolutely love CJ’s mission “to recover those who have been abandoned by the pink mainstream.” I think people with bc mets have absolutely been abandoned. It’s shameful. Like Anna mentioned, people don’t even know the truth about what it’s like for the disease to play out. I do. Society has chosen to look the other way here. Truth is needed. Thank you to CJ and PRB for not looking the other way.

  • Mary

    Thank you CJ for posting that clarification. Math was never my forte and I really struggled regarding absolute and relative when deciding about chemo and Herceptin for early stage. I decided against. We tend to think in absolutes even when we are give the relative.

    Wow, of the 73,000 to 86,000 diagnosed each year with mets only 1-3% will survive. All of us, living past cance, are at risk for mets whether we like to think about it or not. We are a long way from real progress, sigh.

  • JoAnn L. Corbman

    CJ is the champion of all of us coping with BC mets.! She recognized a huge void in the breast cancer world, and bravely stepped up to fill it. We can all relate to feeling like an outcast (and practically avoided) by the mainstream breast cancer community. It feels so bad to be made to feel like a dark cloud floating around when we sooo desperately need support, comfort, companianship and understanding from all members of the cancer community. Thank you so very much CJ!!! You already know how much I admire and applaud you for doing what you do for BC Mets. After being hit with such a devastating diagnosis and all that put you through, you were altruistic and thought of the rest of us out here struggling with this thing. Thank you and keep going full speed ahead!

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

** MORE MEDIA LINKS **
** MORE RADIO INTERVIEWS **