What Are We Doing About Metastatic Breast Cancer: MBCN Responds to HuffPo’s Barbara Jacoby

December 17, 2014

Recently, Barbara Jacoby wrote a blog post entitled, “What Are We Doing about Metastatic Breast Cancer?” In it, she made five assertions that need to be corrected with facts.

 

JACOBY’S ASSERTION #1

  • Public support and and research funding for those with metastatic breast cancer is more than adequate

 

THE FACTS: According to an extensive analysis by the Metastatic Breast Cancer Alliance, metastatic breast cancer research makes up only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom. See www.mbcalliance.org/docs/MBCA_Full_Report_Landscape_Analysis.pdf

 

JACOBY’S ASSERTION #2

  • Though a great amount of money and research is dedicated to early detection, people should do everything they can to get treated early because that will prevent a metastatic breast cancer diagnosis

 

THE FACTS: Breast cancer is an extremely complex disease. Some breast cancers will never become life threatening, even without treatment. And many others will metastasize, sometimes many years out, even when caught early. Some cancers are so aggressive that current treatments are ineffective, no matter how early the cancer is detected. Mammograms can’t tell us which breast cancers need treating nor can they overcome the shortcomings of our current treatments.

 

The majority of newly diagnosed metastatic breast cancer patients had early stage disease 5, 10, 15 or even 20 years earlier. They took advantage of mammograms. Many patients chose to have one or both breasts removed when they had early stage disease “to prevent the cancer from coming back.” The fact remains that research has not yet been able to explain for all patients which early stage breast cancer will return as metastatic disease. Research cannot yet explain the causes of metastasis and why cancer cells travel to particular organs. Metastatic breast cancer patients should not be made to feel guilty because “they did not do enough to be tested or checked.”

 

JACOBY’S ASSERTION #3

  • All research in early breast cancer applies to Stage IV or metastatic breast cancer and all major research groups studying early stage disease are also studying metastatic breast cancer

 

THE FACTS: It is not scientifically correct to say that “all the major work” in breast cancer research applies to both early stage and to Stage IV breast cancer. Early stage disease and metastatic disease are very different in their complexity, molecular makeup and mutations. Also, breast cancer is not one disease and research about what drives one subtype of breast cancer does not apply to other subtypes. Clinical trial endpoints such as tumor shrinkage may not have relevance to tumor spread or metastasis.

 

JACOBY’S ASSERTION #4

  • Survival rates of those living with metastatic breast cancer are improving because the author “has seen people who are living for 5-20 years with the disease”

 

THE FACTS: “Seeing” metastatic patients who survive 5 or 10 years does not accurately define the survival rates for the breast cancer community. The fact is that 40,000 women and men still die of breast cancer every year in the United States with metastasis the cause of virtually all deaths from breast cancer. Also, while some progress with research and new treatments has been made in reducing mortality rates from breast cancer, median survival after a metastatic breast cancer diagnosis is 3 years—and this has not increased meaningfully in more than 20 years!

 

JACOBY’S ASSERTION #5

  • Everyone, including metastatic patients, should be optimistic about the future because research will permanently eradicate breast cancer

 

Read the full MBC Alliance report here.

Read the full MBC Alliance report here.

THE FACTS: Since only 7% of the $15-billion invested in breast cancer research from 2000- to 2013 by the major governmental and nonprofit funders from North America and the United Kingdom focused on metastatic breast cancer research (cited above), we cannot feel confident that research in the near future will permanently eradicate breast cancer or end deaths from the kind of breast cancer that kills—metastatic breast cancer.

 

The very low percentage of research spent on metastasis research also contradicts Jacoby’s assertion that major research groups “everywhere” are “vested in finding the answers needed to treat and eradicate Stage IV cancer.” The field of metastatic breast cancer research is relatively small. Most funding goes to support basic research. There is little research in metastatic breast cancer control or outcomes.

 

Finally, Jacoby informs us  that we can easily confirm her assertion that there has been a lot of progress in metastatic breast cancer. All we need to do  is to “check out the progress that is being made.”  She evaluates progress based on the metastatic patients she has seen.

 

Knowing a few patients that have survived the odds does not make for accurate conclusions for the entire metastatic breast cancer community. The existence of “many” treatments and drugs does not mean they are appropriate for all subtypes. Sadly, researchers have not been able to identify the drivers of triple negative metastatic breast cancers, and for patients with this subtype, chemotherapies remain their “best” and usually “only” options. Such treatments with significant toxicities greatly impact patient quality of life.

 

Metastatic breast cancer is very different than early stage disease. There needs to be more research funding to combat this unique and deadly disease. In addition, in the United States, we lack accurate statistics on incidence, prevalence, and survival. And patients are challenged to find information and support services to help them live with this deadly disease.

 

Shirley Mertz
President
Metastatic Breast Cancer Network


Actress Marcia Strassman Died From Metastatic Breast Cancer

October 31, 2014

MBCNbuzz:

Another great post by Katherine O’Brien on a celebrity who died of mbc.

Originally posted on ihatebreastcancer:

Actress Marcia Strassman was one of very few public figures to openly discuss her Stage IV breast cancer

Actress Marcia Strassman was one of very few public figures to openly discuss her Stage IV breast cancer

Marcia Strassman, the actress best known for her roles in “Welcome Back Kotter” and “Honey, I Shrunk the Kids” died from metastatic breast cancer  this month at age 66. My condolences to her friends and family.

Strassman was something of a hero to me because she was the only famous living person I knew with metastatic breast cancer. I have been on the same drugs as Strassman, so of course I took inspiration that she lived with the disease for seven years.

The actress was one of very few high profile people to talk about having metastatic breast cancer–see this Stand Up 2 Cancer video. Elizabeth Edwards was the last national figure in recent years to share her metastatic breast cancer diagnosis. When Marcia Wallace (the actress who voiced Mrs…

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For People Living With Metastatic Breast Cancer: Change is Coming

October 18, 2014
Marc Hurlbert, Alliance project leader; Karen Durham, patient advocate, DeAngelo Williams, Carolina Panthers; Shirley Mertz, MBCN

Marc Hurlbert, Alliance project leader; Karen Durham, patient advocate, DeAngelo Williams, Carolina Panthers; Shirley Mertz, MBCN

By Katherine O’Brien, MBCN Secretary

 

This past Monday, I joined MBCN board members Shirley Mertz and Ginny Knackmuhs in New York City for a press conference. On October 13–National Metastatic Breast Cancer Awareness Day– the MBC Alliance released the results of its Landscape Report, Changing the Landscape for People Living with Metastatic Breast Cancer.

Over the past the year, the Alliance, which represents 29 cancer organization, conducted a comprehensive analysis of current MBC research and patient needs, as well as information and services. As I listened to the presentations, I was reminded of something John F. Kennedy said about the early days of his presidency: “When we got into office, the thing that surprised me most was to find that things were just as bad as we’d been saying they are.”

Key findings of the Changing the Landscape report include:

  • Research: More funds need to be directed to MBC-focused research. $1.0B invested since 2000 in research grants specifically focused on MBC was identified, or only 7%, of the $15-billion invested in breast cancer research grants included in our study. The majority focused on understanding the key processes of metastasis.
  • Clinical trials: 169 clinical trials testing ‘targeted’ therapies for MBC were identified, addressing 7 common traits shared by all cancers. Opportunities exist to reduce barriers to patient participation in trials and to update the design of trials to address endpoints important for MBC.
  • Quality of Life: More needs to be done to meet the needs of patients and families. Patients with metastatic breast cancer have unique emotional, physical and psychosocial needs, many of which are unmet by health care providers and support organizations. There is limited quality of life research conducted on the needs of minority or poor populations living with MBC.
  • Patient education and support services: MBC Alliance members provide significant support and information to people living with MBC. However, opportunities exist to make information about MBC across agencies more consistent and easily understood, to develop metrics that measure the reach and impact of programs and services, and to reach into underserved communities regardless of socioeconomic status, race, gender, culture or geography.
  • Epidemiology: Improving care requires documenting the number of MBC patients, how long they live, and how well they respond to treatments. Population-based data are needed on early breast cancer patients who experience a recurrence after early stage diagnosis.

In the course of my professional career as a journalist covering the printing industry, I must have attended hundreds of press conferences. It is my job–I routinely cover such events objectively and impersonally. Of course this press conference was very different. As I sat in the audience, I had to stop myself several time from yelling out such things as “Amen!” or “Tell it!” or “Thank you!” But I gave silent voice to all of those comments.

I experienced a wide range of emotions–I felt a surge of pride as Shirley Mertz stepped up to the microphone to chair the event. MBCN is a founding member of the MBC Alliance–and Shirley has worked so hard to make this happen, as has Ginny Knackmuhs, our fellow board member and Shirley’s fellow steering committee member.

I also had a feeling of disbelief–after years, was this finally happening? I am a relative newcomer to the cause–I have only been here five years. But when MBCN was founded 10 years ago, there was no support–let alone acknowledgement–of people living with MBC. On Monday, we all thought of MBCN’s late former president, Ellen Moskowitz. “What would Ellen have said?” we all wondered.

I felt validated–particularly as I heard  patient advocate Karen Durham tell her story. Karen, who lives near Dallas, was diagnosed with an aggressive stage II invasive breast cancer at the age of 38. Her cancer came back some two decades later.  Like me, she has been living with metastatic breast cancer since 2009. She said that many friends don’t really understand what she’s going through. “When you’re living with metastatic breast cancer, every month counts,” she said, as noted in this Forbes article. “Crummy is my new normal. And I’m glad to have that.”

Dr. Ruth Oratz and Dr. Robert Schneider,  both of the New York University School of Medicine, offered their views of the report. Dr  Oratz noted that the quality of life chart showed that needs for people with MBC have not changed since 2006. She praised the multidisciplinary effort, noting that it covered all modalities.

Dr. Schneider called the report “remarkable.”  “It’s an extraordinary report, one that quantifies what we’ve all suspected,” he said. “It gives us momentum for moving forward.”  He went on to say that although the Alliance research pegs the amount of MBC-focused research at 7%, he puts it closer to 3%. “There’s a lot of largely tissue culture work,” he said. “That does not advance [our knowledge]; almost none of that is translational research.” He called for a clearinghouse of mouse models to be created, for rare diseases such as inflammatory breast cancer to be studied and for academia and industry to step up to overcome NIH funding cuts as well as the agency’s reluctance to support research that does not fit within certain narrow confines.

Metastatic breast cancer has no celebrity spokesperson. At the Alliance press conference we met an excellent candidate for the job:  NFL player DeAngelo Williams. Williams, a running back with the Carolina Panthers lost his mom to MBC this past May. Although DeAngelo also has lost four aunts to breast cancer, it wasn’t until recently that he heard the term metastatic breast cancer. “We gravitate toward what effects us,” DeAngelo said, explaining why he contacted the Alliance.

Finally, I felt a sense of urgency.

As Shirley Mertz said, our lives depend on what the Alliance does. I am both sobered to think of the work to come and excited to help do it.

 

The full landscape report can be found at http://www.avonfoundation.org/assets/images/2014/mbca_full-report.pdf.


Ginny D: Being More and Doing Less

October 2, 2014

Reblogging this post from Katherine O’Brien’s I hate breastcancer blog:  Ginny D: Being More and Doing Less.

 ginnydI was sorry to learn that Virginia “Ginny” Dimpfl died last night at age 58. Because I have another friend named Ginny (Ginny Knackmuhs, my fellow MBCN board member), I thought of  her as “Ginny D.”  Ginny K lives in New Jersey and is thus “East Coast Ginny.” Ginny D lived in San Francisco and was therefore, “West Coast Ginny.”

Ginny D.  and I spoke on the phone several times in the past few months–she was interested in volunteering with the Metastatic Breast Cancer Network. Ginny D. spent the past two decades in marketing communications with Hewlett Packard. She must have been perfect for that job–she was warm, organized and direct–within a few minutes of our first conversation, she had outlined a great idea for MBCN’s annual conference. She had energy and enthusiasm–I really looked forward to meeting her in person.

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Joan Lunden, Give Me a Call

October 1, 2014

Guest blogger: Please welcome Sherri, a nurse who is new at blogging. Follow her at  www.sherrifillipo.com

I promised my mother I would not do anything edgy before October breast cancer awareness month (ugh), but standing in line at Wegmans yesterday I knew there would be no holding back once I got home.

joan lunden

People Magazine Cover

You see, as I stood there in line, beautiful, bald Joan Lunden stared back at me on the cover of People magazine with the quote, “I will beat this!” It made me so angry I just had to look away. I wanted to speed dial her and set her straight. I imagined she would pick up the phone and I would say,

“Joan. Listen, you have it all wrong. You don’t get to decide if you will beat cancer – the cancer does.”

And then I would go on to educate her on cancer that stays in the breast versus cancer that leaves it and what a disservice it is to women and families who deal with the diagnosis of terminal breast cancer and how they might worry that they had not fought as hard as say, Joan Lunden, and that’s why they were dying. Oh, I’ve gone and gotten myself started!

October is a rough month for women who are living and dying with metastatic breast cancer. I have so much I want to write about! Stay tuned.


Saluting Peter Devereaux, Male Breast Cancer Advocate (1962-2014)

August 23, 2014

 

PETER C. DEVEREAUX

PETER C. DEVEREAUX

Pete Devereaux died last week at age 52. Pete was a Marine, a champion athlete and a patient advocate who brought greater awareness not only to male breast cancer in general but to his 82 fellow Marines who were stationed at Camp Lejeune and later diagnosed with male breast cancer due to a contaminated water supply. ( This is the largest reported cluster of male breast cancer.)

I met Pete last year when served as a  patient introducer for the Metastatic Breast Cancer Network’s (MBCN’s) annual conference. (You can watch Pete’s video here.)

Pete was  initially diagnosed with stage 3b male breast cancer on January 11th, 2008. After noticing a lump, Pete called his doctor and had a mammogram, ultrasound and core biopsy. “A few days later the doctor called me up and said I had male breast cancer,” Pete recalled. “I asked him if he was calling the right patient. I was in complete shock.”

Pete had a mastectomy and 22 cancerous lymph nodes removed, followed by 14 months of treatment (29 chemotherapy and 30 radiation appointments). Just three days before his last appointment in April 2009, Pete started experiencing shooting pain up and down his spine. “At my last scheduled appointment I had scans that revealed my cancer had traveled to my spine, ribs and hip,” Pete said. “I have metastatic breast cancer.”

Pete was one of three men with metastatic breast cancer who attended MBCN’s 2013 conference. When I think of Pete, I hear his distinctive Bostonian accent and I see his smile and his big bald head. I loved Pete’s sense of humor–we hit it off right away when we met in Houston.

Someone else in Pete’s shoes might have been bitter–that was not Pete’s way. He was a doer–not a  complainer. He is featured in “Semper Fi” a documentary about the contamination at Camp LeJeune and did countless television and print interviews to share the story of Marines with male breast cancer.

If  the American Cancer Society  or Komen or other group were having a fundraiser, Pete was there. Pete was part of the group that successfully lobbied to establish Oct. 13 as National Metastatic Breast Cancer Awareness Day. When MBCN teamed with Dana Farber to put on a metastatic breast cancer seminar, Pete was part of the organizing committee. He was a proud graduate of Project Lead, a 5-day course on the science of breast cancer in San Diego, put on by the National Breast Cancer Coalition.

“I continue to attend as many events as I can and am always open to speaking about male and metastatic breast cancer,” Pete said. Indeed, as reported here, Pete was the featured speaker at the June 2014 Avon Walk for Breast Cancer in Boston. He was in a wheelchair, but he was there, and sounded like the same old Pete.

Pete often paid tribute to his wife of 18 years, Fiona Maguire.

“I always knew that my wife was a cool, pretty chick. But this cute little Irish girl is a bad-ass,” Pete told a Salem, NH reporter. “Little do you know at the beginning how much (you’ll go through). Our love went to a whole new level.”

Our sincere condolences to Fiona and all of Pete’s family and many friends.
A funeral mass will be celebrated on Monday, August 25, 2014 at 10:00 a.m. in St. Michael’s Church, 196 Main Street, North Andover, MA. Burial will follow at St. Mary’s Cemetery in Salem, MA.  In lieu of flowers, donations can be made to the Peter C. Devereaux Fund, TD Bank North, 451 Andover Street, North Andover, MA 01845.

 


Metastatic Breast Cancer Events 2014: Mark Your Calendar

August 8, 2014

Hi everyone. We hope you are enjoying your summer. We wanted to share a quick overview of upcoming metastatic breast cancer events in Chapel Hill, NC; Philadelphia, Los Angeles, Boston and Chicago.  I will be at three (!) of these events and look forward to meeting some of you there. Is there a metastatic meeting in your city we should know about? Please comment below.

–Katherine O’Brien

Secretary, MBCN

 

NC_StateIconThe Metastatic Breast Cancer Network’s (MBCN’s) 2014 Annual Conference In Conjunction with UNC Lineberger Comprehensive Cancer Center

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

WHEN: September 19-21, 2014

WHERE: UNC Lineberger Comprehensive Cancer Center, Chapel Hill, NC

                                                    MORE INFORMATION: www.MBCN.org

NOTES:  MBCN’s signature annual event starts with a Friday night reception and goes on to include a full day of  Saturday sessions and a half day on Sunday. There are at total of five main sessions across the two days; attendees can choose among more than 20 breakout sessions on everything from the latest news on their specific subtype to insurance issues, talking to younger kids about MBC and special issues in the African American community and more. (See the  details here.) We expect attendees from across the US as well as Canada. Make your hotel reservations soon; our block of rooms “hold” ends on Sept. 1.

 

phillyLBBC’s  (Living Beyond Breast Cancer) ANNUAL FALL CONFERENCE

WHO: People living with breast cancer

WHEN: September 27, 2014

WHERE:Pennsylvania Convention Center, Philadelphia

MORE INFORMATION: http://lbbc.kintera.org/faf/home/default.asp?ievent=11140

NOTES: The Metastatic Track includes two  presentations from Dr. Clifton Hudis (“Metasatic Breast Cancer: Treatment Stategies” and “Metastatic Breast Cancer: Clinical Trials” as well as Dr. Pamela Ginsberg on “Living Fully, Managing Uncertainty.”

 

LAKomen LA 2nd ANNUAL LIVING WITH METASTATIC BREAST CANCER CONFERENCE

WHEN: October 11, 2014

WHERE: Olympic Collection Banquet Hall / 11301 Olympic Blvd / West Los Angeles, CA 90064

MORE INFORMATION:  http://www.komenlacounty.org/assets/mbc/mbc-conference-flyer-oct-2014.pdf

RSVP: Contacting Gwen Barker at 310-575-3011 or GBarker@KomenLACounty.org

NOTES: This event focuses on those living with metastatic breast cancer and will provide information and resources about treatment options, emotional wellbeing, nutrition, and more. Prominent experts including Dr. Patricia Ganz of UCLA, Dr. James Waisman of City of Hope, Dr. Rena Callahan of UCLA, and Dr. Yara Salman of USC will discuss metastatic breast cancer. The Los Angeles County Affiliate of Susan G. Komen is producing this event with the support of Anthem Blue Cross.

 

sox1DANA FARBER METASTATIC BREAST CANCER FORUM

WHEN: Saturday,  October 18, 2014  ( morning). More details coming soon!

WHERE: Boston

NOTES: Sponsored by Dana Farber Cancer Institute, MBCN and Susan G. Komen

 

chiMETASTATIC MEET UP: ROBERT H. LURIE CANCER CENTER

WHEN: Sunday, October 19, 2014 (9:00 a.m to 12:30 p.m.)

WHERE: Robert H. Lurie Medical Research Center, 303 E. Superior St., Chicago  Baldwin Auditorium – See: http://cancer.northwestern.edu/metastatic/#sthash.k8Iz9Xui.dpuf

MORE INFORMATION: Register online or call 312.695.1390. Walk-ins welcome.

NOTES: This program, held specifically for Metastatic Breast Cancer (MBC) patients, or Stage IV patients, and their families, is hosted in partnership with the Metastatic Breast Cancer Network. Learn about key developments in the field of metastatic treatment, meet others living with MBC and network with local advocacy organizations. This free program includes a light breakfast and discounted parking. Come and hear Virginia Kaklamani, MD, DSc; William Gradishar, MD and MBCN’s own Shirley Mertz. The annual Lynn Sage Town Hall meeting follows.


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