Tag Archives: Metavivor


Register NOW for the Metastatic Breast Cancer Conference

Hopefully you’ve registered already for the conference! There’s still time to sign up but we are really coming down to the wire for scholarship applications and our hotel block. SIGN UP TODAY!!!

We are working very hard to bring you an excellent conference! So much to do, so little time! But it will totally be worth it to see all of you. Join us!

The Metastatic Breast Cancer Network’s (MBCN’s)

2013 Annual Conference In Conjunction with MD Anderson

WHO: People living with metastatic breast cancer and their spouses, partners, friends and caregivers.

WHEN: September 20-22, 2013.

WHERE: Houston Marriott @ Texas Medical Center.


Additional Useful Links:
The agenda is here: http://mbcn.org/special-events/category/agenda-2013

You can register here

Apply for a scholarship here (MUST complete registration first.)*

Register for a room here*

*We are practically at the deadline!!! Apply NOW!!


Scenes from our 2012 Conference

Scenes from our 2012 Conference

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Spread the Word: Metastatic Breast Cancer Conference is Coming to Chicago on Oct. 13

Many of you know that I volunteer with the Metastatic Breast Cancer Network, (MBCN),  an all-volunteer, non-profit group that serves the 150,000 U.S.  people currently living with metastatic breast cancer. In 2006, the group held its first conference at Memorial Sloan-Kettering Cancer Center. The conference was a huge success with more than 300 attendees from 19 states and Canada. Subsequent conferences have been held at  M.D. Anderson, Dana-Farber, Indiana University’s Simon Cancer Center and at Johns Hopkins.  This year’s conference will be held in Chicago on Oct. 13 at at Northwestern University’s Lurie Center. Please help us spread the news!

If you have metastatic breast cancer, I hope to see you at this event. Caretakers and friends are welcome, too.  Some scholarships are available to help defray travel and hotel costs. (Here’s the registration link.) Please join us! You will be glad you did.

The goal of MBCN’s annual conference is to:

  • Help to ease the isolation of living with metastatic disease
  • Expose misconceptions about the disease –misconceptions held not only by some patients, family and friends but also by some doctors …doctors who give up on metastatic patients too soon
  • Fight for drugs to extend life as we search for the cure

Along with medical presentations, attendees will hear testimonials from people living with MBC.  We will share our struggles, triumphs and coping mechanisms. A Friday night pizza party at Chicago’s famous Gino’s East is a great chance to catch up with old friends and make new ones. Before I attended the 2009 conference in Indiana, I hadn’t met any MBC patients in person. It made a tremendous difference to actually see  I was not alone.

If there is anything I can help you with, leave me a comment! Please helps us publicize this very worthy event!


We have expert speakers from Northwestern,  University of Chicago, Rush University the National Cancer Institute and more. Agenda highlights include:

“Understanding MBC”

Virginia Kaklamani, MD  is an Associate Professor in Hematology/Oncology at Northwestern University. she completed her medical training with honors athe University of Athens and her residency in internal medicane at Newton-Wellesley Hospital in Boston. She received a Master of Science degree in clinical investigation from Northwestern in 2003 and joined the Northwestern faculty in that same year, following completion of her fellowship.Her clinical interests are breast cancer and cancer genetics.

“Emerging Research”

Steven Rosen, MD is the Genevieve Teuton Professor of Medicine and the Director of the Robert H. Lurie Comprehensive Care Ceter at Northwestern. He graduated from Northwestern Medical School in 1976 and completed his residency at Northwstern and fellowship in Medical Oncology at the National Canccer Institute. Dr. Rosen has received numerous awards and contracts and has published more than 200 scientific papers. He serves on several editorial boards and is editor of Cancer Treatment & Research. He is a member of all major national associations that focus on oncology and has held leadership positions in the Eastern Cooperative Oncology Group, the American Association of Cancer Institutes and the National Comprehensive Cancer Network.

“Research on Containing Metastatic Growth”

 Patricia Steeg, PhD received her PhD from the Univesity of Maryland in 1982 and was tenured in 1992 at the National Cancer Institute. She became chief of the Women’s Cancers Section in 1993. In 2004 she was appointed Director of the Moleccular Therapeutics Program, Center for Cancer Research at the NCI. Her research centers on identifying and containing metastatic growth.


“Acupuncture and Chinese Herbology”

Virginia  Burns, LAC is a licensed acupuncturist at Northwestern University.

“Targeted Treatment for Isolated Mets”

Steven Chmura, MD is Assistant Professor of Radiation and Cellular Oncology at the University of Chicago. An expert in radiotherapy ad stereotactic radiosurgery(SRS), Dr. Chmura uses minimally invasive techniques to minimize tissue damage when diagnosing and treating cancers. He is an active researcher and principal investigator for the Radiation Trials Oncology Group. He received all of his training from medical school through internship and residency at the University of Chicago.

“Improving Daily Functioning”

Gail Gamble, MD specializes in Physical Medicine and Rehabilitation at Northwestern, where she is an Associate Professor. She graduated from the Mayo Medical School in 1979 and completed residency at the Mayo Clinic in Rochester.

“Treating Bone Metastases”

William Gradishar, MD is professor of medicine in division of hematology/oncology at Northwestern University. After recieiving his medical degree from the University of Illinois/Chicago, he completed residency at Michael Reese Hospital and Medical Center in Chicago and fellowship at the University of Chicago. Dr. Gradishar is hte Director of the Maggie Daley Center for Women’s Cancer Care at Northwestern Memorial Hospital. He has published extensively in the area of breast cancer therapy, with a focus on endocrine therapy, chemotherapy and novel targeted therapies. He is active in ASCO leadership, the Breast Cancer Treatment Guidline committee of the National Comprehensive Cancer Network and serves as a consultant to the Oncolgoy Drug Advisory Committee of the FDA.

“Living with MBC”  (Panel 1 for Those Under 40; Panel 2 for Those 40 and Older)

Roz Kleban is the administrator supervisor for psychosocial programs at the Evelyn H. Lauder Breast Center at Memorial Sloan Kettering Cancer Center where she oversees all social-work activities. With almost 25 years of experience working with oncology patients and their families, she leads weekly support groups for women dealing with early- as well as advanced-stage breast cancer and is a member of the professional advisory board of breastcancer.org.

“Brain Metastasis”

Lorenzo Munoz, MD is a neurosurgeon at Rush University Medical Center. He received his medical degree from the Ponce School of Medicine in Puerto Rico and completed internship and residency at University of Illinois. Dr. Munoz also completed fellowships in neurosurgical critcal care and pediatric neurosurgery.

“Triple Negative MBC”

Funmi Olopade, MD  is a Professor of Medicine and Human Genetics and Director of the Cancer Risk Clinic at the University of Chicago. She graduated from medical school at the University of Ibadan, Nigeria and completed internship and residency at Cook County Hospital and fellowship at the University of Chicago. Her current research interests include identifying the source of ER-negative breast cancer–an aggressive form of the disease, which is resistant to hormone therapy. Dr. Olopade has a special interest in women of African descent, who are at higher risk for the more aggressive breast cancer and more likely to be diagnosed at a younger age. She aims to develop new biomarkers and improve screening standards and early detection for moderate- and high-risk populations.

“Treating Pain and Neuropathy”Judy Paice, PhD, RN is Director of the Cancer Pain Program at Northwestern University and a Research Professor in the Hematology/Oncology Division. She received her RN from Rush Medical College in 1982 and her PhD from Unicversity of Illinois in 1992. Her interest are Pain Management, Palliative Care and Hospice.

“Hormone Positive MBC”

Dr. Ruta Rao is an Assistant Professor at Rush University Medical Center, where she completed her fellowship training. Prior to that, she attended University of Wisconsin Medical School and completed internship at University of Southern California and residency at University of Illinois.

“Role of the Caregiver”

 Sara K. Rosenbloom, PhD  earned her PhD from Northwestern in 2002.


Saturday October 13, 2012 from 8:00 AM to 5:30 PM EDT
Robert H. Lurie Medical Research Center
303 E. Superior Street
Chicago, IL 60611
Metastatic Breast Cancer Network
888-500-0370 (voice mail)
“I have been to so many conferences where the focus was primary breast cancers and the topic of being metastatic was almost non-existent,” said an attendee at the inaugural conference in 2006.  “What about us?  What do we do?  What new therapies can we look forward to that will help keep us, that might prolong our lives for a very long time?  How do I deal with this?  If we don’t get the attention that is deserved, how can we expect non- metastatic women and men to not fear us? Thank you for doing this.”
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Greetings from the Middle Seat of the Breast Cancer Airplane

Having metastatic breast cancer is like being stuck in the middle seat on an airplane: You have absolutely no status. No one wants to trade places with you. Your personal space is seldom respected. And most people will pretend you aren’t there. (Of course that’s true regardless of your seat assignment. Nobody wants to sit next to a Chatty Cathy.)

Women with MBC literally don’t count. Some estimate that there are 160,000 people living with MBC in the U.S. The reality is we don’t actually know how many of us are out there.

“One hundred and sixty thousand is an estimate only,” author and advocate  Musa Mayer told Elaine Schattner last year. “Nothing more definitive is available,” she said, explaining that because the NCI and SEER database record only incidence, initial treatment and mortality data, what happens in between — in terms of recurrence and the exact number of women living with metastatic breast cancer — is undocumented.

“It is as if these metastatic women are invisible, that they literally don’t count,” she indicated. “And when we don’t count people’s needs, we can’t provide or plan for them.”

Neither seen nor heard

Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network  (MBCN) in 2004. MBCN is a national, independent, patient-led, nonprofit advocacy group that provides education and information on treatments and coping with the disease.

Soyer, an NYC public school teacher, mentor and guidance counselor died in 2005. Schulman, an Emmy Award-winning film editor, producer and director, died in 2008.

“As a woman living with metastatic disease, I had felt isolated and excluded from the very groups that were set up to help woman diagnosed with breast cancer,” Shulman explained in 2007.   “The breast cancer community had become a place for ‘survivors’, not for people living with breast cancer every day of their lives.  We were not being seen or heard. No one was trying to meet our needs. No one was listening.”

Women with MBC don’t fit in, observes Ellen Moskowitz, who recently stepped down as MBCN’s volunteer president. “We don’t fit in with all the cheering about ‘beating the disease’. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure.”

Sisters Are Doing it for Themselves

In 2009, Dian Corneliussen-James and her friends attended a meeting which began with cheers and applause for breast cancer survivors who then testified to the power of clean living, positive attitudes and being courageous. Perhaps fearing a rebuttal, the moderator didn’t allow Corneliussen-James or her friends to speak.

Several years earlier, in the friends had formed METAvivor, a nonprofit, volunteer-run group. In addition to providing support and awareness for people with MBC, the group funds an annual research grant.

Wait ‘Til Next Year

CURE  Magazine is clear on one point: People with MBC are not survivors:  “[We] define survivorship as when treatment ends and for the rest of your life,” writes Kathy LaTour.

Treatment does not end with MBC. So what are we? Bigger than a breadbox?

Last fall CURE Magazine reported that patient advocates arriving at the San Antonio Breast Cancer Symposium  (SABCS)  felt renewed urgency upon hearing that Elizabeth Edwards died.

If I felt bad when I learned Edwards died, I felt worse when I read about the patient advocates marshalling for some really big news in the wake of Edward’s death. Because they might as well not have bothered unpacking their suitcases.

“San Antonio [is] going to be the year of adjuvant and neoadjuvant therapy, with very few results of interest for patients in the metastatic setting (at least from my quick review of the program),” wrote Dr. Kathy Miller in her blog at www.medscape.com. “But some very interesting studies in the adjuvant and neoadjuvant setting.”

Yep. Sloppy seconds for MBC patients yet again. Of course SABCS is only one meeting. There will be others. But really,  how much research and funding  will there be for people with metastatic breast cancer? Not nearly enough.

METAvivor’s 5 MBC Misperceptions

Myth: Research funding is well balanced for all stages of cancer.
Reality: 90% of cancer deaths result from Stage IV cancer, but only 2% of research funds are devoted to stage IV.

Myth: Metastatic breast cancer is rare.
Reality: 30% of breast cancer patients progress to Stage IV. Many more initially present with metastatic breast cancer.

Myth: Healthy lifestyles, timely screening and early detection prevent metastasis.
Reality: Metastasis happens despite vigilance and precautions. Even Stage I patients can and do metastasize.

Myth: Metastatic breast cancer is becoming a chronic disease. Fewer die every year.
Reality: New treatments extend life for some, but survival remains elusive. Over 40,000 women and men have been dying annually since 1987.

Myth: Stage IV breast cancer patients are well supported by many groups.
Reality: Far too many patients must face their challenges with little to no support. Most programs focus on wellness and recovery, avoiding any reference to Stage IV.

Source: www.metavivor.org

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Hopelessly Addicted to Peppy & Upbeat Breast Cancer Articles

As I left my dermatoligist’s office this past October, I grabbed a magazine to read on the train. Unfortunately for me, the magazine was Health Monitor, a free publication distributed in waiting rooms.

There was a special Breast Cancer Awareness month profile of Olivia Newton-John.

I have read issues of “Highlights for Children” that were more informative.

Nothing against Olivia Newton-John–it’s just that the writer provided no context for her remarks–as if Newton-John’s experience could somehow be broadly applied to everyone’s.

Here is my email to the Health Monitor editor:

As one of 155,000 U.S. women living with metastatic (aka Stage IV) breast cancer, I would like to share a little secret with you:

We do not need another puff piece on women celebrities who have “survived” early stage cancer and are now prattling on about positive attitudes and natural healing while shamelessly plugging their own business ventures and entertainment projects.

A far more compelling angle for Health Monitor’s Oct./Nov. cover story would have been: “Olivia Newton-John: Hopelessly Devoted to Plastic Surgery.”

But I digress.

Bonnie Siegler’s article touts the benefits of early detection. There is absolutely no mention of inflammatory breast cancer which doesn’t present with a lump. Some women, IBC and non-IBC alike, may have breast thickness and some may have no outward symptoms at all.

Newton-John told Siegler: “If I had not found my lump by my own hands, it would have been sizably larger and it might have metastasized by the time it was discovered.”

I am 44 and I presented with mets, as six to 10 percent of U.S. women do. I resent Newton-John’s implication that somehow I did something wrong because I didn’t find my own cancer. But far, far more offensive to me is Newton-John’s sunny optimism: “I believe your outlook–the way you–think–affects your health and future. It affects your survival.”

I am a woman with an incurable disease. I am not the Little Engine That Could. A positive attitude will not unsnarl my defective DNA.

“It is difficult enough to be injured or gravely ill. To add to this the burden of guilt over a supposed failure to have the right attitude toward one’s illness is unconscionable. Linking health to personal virtue and vice not only is bad science, it’s bad medicine.”

–Richard P. Sloan, professor of behavioral medicine at Columbia University Medical Center, and author of “Blind Faith

Early stage breast cancer does not kill women. Metastatic breast cancer does.

Siegler seems to perpetrate the early stage “Treat it & Beat it” breast cancer myth. Although follow-up care is mentioned, one key word, “recurrence,” is nowhere to be found.

In October, the Breast Cancer Awareness spotlight is almost exclusively on women who “beat” cancer–not the “metser” who is losing her hair for the third time, or the one struggling with chronic constipation or the one who knows she won’t see her daughter graduate from grade school.

The next time you write about breast cancer, I hope you will go far beyond a superficial profile of a celebrity with early stage breast cancer who advocates some vaguely defined “holistic” approach. There are many excellent metastatic breast cancer resources–the Metastatic Breast Cancer Network (www.mbcnetwork.org) would be happy to provide input.

Here is what I wish Siegler and Health Monitor readers knew about metastatic breast cancer and breast cancer in general:

>Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver and lungs.
>Treatment is lifelong and focuses on control and quality of life vs. curative intent. (“Treatable but unbeatable.”)
>About 6% to 10% of women are Stage IV from their initial diagnosis.
>Early detection is not a cure. Metastatic breast cancer can occur ANY time after a woman’s original diagnosis, EVEN if she was initially Stage I, II or III.
>Only women with Stage 0 (DCIS) (noninvasive breast cancer) aren’t considered to be at risk for metastatic breast cancer.
>Between 20% to 30% of women initially diagnosed with regional stage disease WILL develop metastatic breast cancer.
>Young women DO get metastatic breast cancer.
> There are many different kinds of metastatic breast cancer.
>Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.
>Any breast lump, thickness or skin abnormality should be checked out. With inflammatory breast cancer, there’s no lump-the breast can be red and/or itchy and the skin may have an orange-peel like appearance.
>Women shouldn’t use the recent mammogram controversy to postpone their first mammogram or delay a regularly scheduled exam, especially if they have a family history.
>Mammograms can’t detect all cancers. Trust your instinct. If something feels “off” insist on further diagnostic testing.
>Metastatic breast cancer isn’t an automatic death sentence–although most women will ultimately die of their disease, some can live long and productive lives.
>There are no hard and fast prognostic statistics for metastatic breast cancer. Every woman’s situation is unique.
>There are many excellent online metastatic breast cancer resources. Examples include www.mbcnetwork.org, www.inspire.com , www.breastcancer.org and  www.metavivor.org. (Not forgetting http://www.ihatebreastcancer.wordpress.com.!)

NOTE: To her credit, the Health Monitor’s editor did promptly respond with an invitation to write my own article. I haven’t done so, but I will follow up with her to see if the offer is still open!

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More Cause for Applause

Earlier I wrote about MBCN,   a national, independent, patient-led, nonprofit advocacy group for people with metastatic breast cancer. Here are five other groups worthy of wider recognition. (What group(s) would you suggest? Leave a comment and let me know!)

Metavivor: Making a Difference for People with MBC

In June 2008 Dian “CJ” M. Corneliussen-James attended a breast cancer seminar with three friends. Numerous attendees rose in turn to celebrate their survivorship. They credited their status to being vigilant, courageous and  having the will to live. The moderator said it was wonderful breast cancer was no longer a secret and  invited all of the survivors present to stand.

“My friends and I looked at each other.  We were definitely ‘vigilant,’ we were certainly ‘courageous’ and our ‘will to live’ was absolute,” recalls Corneliussen-James. “But … no longer a secret?’ Survivors? We shook our heads. Those terms did not pertain to us.  Should we stand?  Should we speak out? It was clear this was going to be like so many other conferences.”

Corneliussen-James and her friends decided they would speak out. They formed Metavivor, a nonprofit, volunteer-run group. In addition to providing support and awareness for people with MBC, the group funds an annual research grant.

“We ask that the organizers of breast cancer conferences include speakers on metastatic breast cancer,” Corneliussen-James says.  “We ask that they have literature available on the disease and that they receive and respond in detail to questions asked concerning our condition.  We ask that in addition to applauding the 2.5 million ‘survivors,’ those valiantly battling stage IV breast cancer also be applauded.  And we ask that there is a moment of silence for the millions who have died of the disease. “Further, we ask that ‘survivors’ be sensitive when they speak at conferences and public forums and be ever cognizant of the fact that many do not survive this disease and persons struggling with stage IV breast cancer might well be in the audience. ”

When people are donating to cancer research, Metavivor asks them to consider supporting organizations that have a posted policy to award a specific share of monies received to research aimed at eradicating  cancer that has metastasized.

Last year the Annapolis, MD-based group raised $50,000 to fund the work of Dr. Danny Welch, a leading metastatic researcher who has observed that MBC accounts for 90% of the morbitity/mortality but gets 5% of breast cancer funding.

The Metavivor financial statement is  simple: $50,000 raised and 100 percent of those funds investedin MBC research. They are holding a fundraiser this week.

Driving Miss Darby: Supporting Clinical Trial Participants

In 2004, at age 34,  Darby Steadman presented with DCIS. In 20o7, she learned her cancer had metastasized.

Steadman participated in  Dr. Leisha Emens’ breast cancer vaccine trial several years ago at  Johns Hopkins.

“We (all the trial participants) were all at Stage IV by that point,” she said. “It was our last hope.”

Steadman lived within driving distance of Johns Hopkins, but many of her fellow trial participants traveled much further. “I  learned that many of them had maxed out their credit card bills to pay for their airline tickets, meals and car rentals,” she told a reporter. “Others commuted, five, six, seven hours each way and would head back the same day so they [could minimize time off from work].”

Steadman and her friends created the foundation  to defray clinical trial participants’ travel, lodging and medical expenses. The groups summarizes its goals as: Awareness, Accrual & Assistance.

Chronic Disease Fund Helps Patients Foot Their Bills

Established in 2003, the Chronic Disease Fund ensures that underinsured patients have access to the new, breakthrough medications and treatments that help patients live longer, happier, more productive lives.

Chronic Disease Fund quickly became the largest copay organization in the country. In 2009, it helped more then 60,000 people get the medications they needed.

The Abigail Alliance: Getting Promising New Drugs to  Market Sooner

Abigail Burroughs died at age 21 because she couldn’t get  an experimental cancer drug. After Abigail’s death, her father Frank Burroughs, formed the Abigail Alliance for Better Access to Developmental  

The Abigail Alliance is committed to helping create wider access to developmental cancer drugs and other drugs for serious life-threatening illnesses. It promotes creative ways of increasing expanded access and compassionate use programs.

The group was recently featured in what Burroughs calls one of the best pieces done on the group. The Abigail Alliance is the second interview at http://www.biocenturytv.com.

Sisters Network: Stopping the Silence

Karen Eubanks Jackson is the founder & CEO of Sisters Network Inc. (SNI),  the only African American breast cancer survivorship organization. She is a 15-year breast cancer survivor.

She created SNI  in 1994 in response to a lack of sisterhood in traditional organizations, a staggering breast cancer mortality rate for African American and limited culturally sensitive material.

Jackson’s primary motivation was to break through the silence and shame of breast cancer that immobilizes African American women, restricts their ability to receive support services, interferes with early detection, and ultimately affects their survival rates. SNI currently has 42 survivor-run affiliate chapters, serving more than 3000 members and associate members nationwide.

The 12th Annual National African American Breast Cancer  Conference will take place May 12-15, 2011 in Baton Rouge.

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