Tag Archives: stage IV breast cancer

A True Advocate

Everybody had something to say about Angelina Jolie during May. You couldn’t open a newspaper or magazine, or read a blog without hearing an opinion about her risk for breast cancer and her individual decision.  This dialogue was probably the biggest breast cancer conversation we have had as a nation so far.  Everybody had an opinion.

Me?  I couldn’t muster much interest.  I kept thinking about Maria Wetzel.  Her story wasn’t making the NY Times or CNN.  While Angelina was announcing to the world her tough decision, Maria was making the decision to enter Hospice care.

You didn’t hear about it in the news, but Maria’s story is also about courage, about advocacy and compassion, about empowering others, and about working to make the world a better place. Maria is the real deal, an advocate for those who would come after her. She is one-of-a-kind in intellect, spirit and heart.  But she is not a celebrity. And sadly, her breast cancer story is not unique, but typical. Run of the mill.  It is relevant to more of us, but unfortunately, will go mostly unheard.

Before 1996, Maria never spent any time thinking about cancer.  She lived in northern California, enjoying the outdoors, and life with her husband and 14 year old son.  She worked as a Clinical Laboratory Scientist, looking for pathogens in other people’s blood samples.  But after the day in 1996 when she was diagnosed with Stage II breast cancer, she never spent a day without some thoughts about cancer.  She read, and connected online, everyday, learning as much as she could; First for herself, for treatment decisions, or to lessen side effects, but gradually learning for others.  She began sharing information and research findings, doing peer support work in her community for those newly diagnosed, and translating research findings into lay language for those less familiar with science jargon.

Though she had a good science background, she wanted further training and took NBCC’s Project LEAD, Clinical Trials LEAD, as well as the Quality Care LEAD. She began attending research symposia.  Over time, she became frustrated with the “breakthroughs” that never ended up doing much for patients. She began participating in peer review of breast cancer research proposals, looking to award funding to the research that would provide more than incremental benefit, and was invited to serve as an ad hoc reviewer for the Integration Panel of the DoD Breast Cancer Research Program.  She developed into a passionate advocate for ending breast cancer, and she knew this was going to require major change in the breast cancer world.

Maria always felt she wasn’t finished with the disease after that first diagnosis in 1996, but after nine years she let herself think maybe, just maybe she’d be one of the lucky ones. But in 2005 she was diagnosed with a chest wall recurrence, and in 2011, with metastasis to her lungs and liver.

Though she was living with metastatic disease, she continued her advocacy, working to help others and to see an end to breast cancer for future generations.  She called herself the reluctant advocate, but she couldn’t stop;  Friends were dying, two of her sisters were diagnosed.  She wrote in a blog, “Every time I would even think about retreating from my advocacy work, something else would happen to forcefully remind me that we’re far from having the answers we need. I would love to live my life with few thoughts of cancer. This is not how I intended for it to turn out. It has become even more vital to me to advocate for better research, to change the conversation about what is done and how it is done.”

Maria Wetzel died yesterday, surrounded by her family.  It’s a tremendous loss for breast cancer advocacy, but also for so many of us personally.  Maria has been a part of my experience as an advocate from the beginning, since I joined this world after my own diagnosis six years ago.  We’ve worked on advocacy projects together, meeting at research symposia and panel reviews, and emailing back and forth about the latest study.  Once I was working at NBCC, I could always count on Maria to help with the hard stuff, but also to be the advocate who would ask me the hard questions.  Afterwhich, she would always directly follow up with a friendly question about one of my kids or a comment about the weather or birds in Michigan.  I’m glad she asked the hard questions of me and of all of us, and I will continue to ask the hard questions of myself and others to honor her.

Angelina Jolie had a rare genetic mutation that put her at risk for breast cancer.  Over 99% of women won’t have that mutation and won’t be faced with the difficult choices Ms. Jolie faced.  Unfortunately, Maria’s story is much more common.  One in eight women will develop breast cancer over their lifetime, and the majority of those women will have the type of breast cancer Maria did.  This breast cancer is hormone responsive, and can lay dormant for many years before reappearing and spreading.  Most people don’t understand, or don’t want to understand, this fact about breast cancer.  Even scientists know very little about why or how the cancer reappears, or most importantly how to prevent it.

Maria was relentless in pushing for meaningful answers.  To honor Maria, let’s continue asking the hard questions, of ourselves and of everyone in the breast cancer world, changing the conversation and breast cancer dialogue wherever we can.  Maybe there won’t be a national dialogue about Maria Wetzel and her decisions, but we can do our best to continue the work together, no matter how reluctantly, no matter what the challenges we face individually, to truly make a difference in the mission to end breast cancer. Maria would love to see nothing less from us.

Maria Wetzel

Breast Cancer Metastasis – Changing the Conversation

Though it is the spread of breast cancer, or breast cancer metastasis, that ultimately takes the lives of women who die from the disease, only a fraction of the research into the disease is aimed at a greater understanding of this process. And the public dialogue, including government officials, is too often focused on screening mammography as the best or only solution, with the false claim that metastasis could be eliminated simply through widespread use of mammography.1 Sure, industry continues to focus on metastasis – nearly 2,000 drugs for the treatment of cancer are under development. 2 But these drugs can win FDA approval and generate huge profits while providing little or no meaningful benefit for patients. Think of Avastin, costing approximately $8,000 a month,3 showing no increase in survival from breast cancer in randomized clinical trials but increasing a risk of death from side effects. 4

It is time to change the conversation. We need to talk about why and how metastasis happens. And then figure out how to prevent it. Let’s face the reality that mammography is not enough. Women, even those receiving mammograms, will continue to be diagnosed with metastatic breast cancer, sometimes years after an initial “early” breast cancer.5 And for these women, drugs that may or may not add a few more weeks or months of life, and can have lethal side effects of their own, are not enough. We must do more.

Since setting Breast Cancer Deadline 2020 last fall, NBCC has begun taking steps to change that conversation. We have pulled together a diverse group of 20 advocates and scientists who are working to plan a Metastasis Summit, to be held August 24-26, 2011. The Summit will bring together 35-50 stakeholders, leading investigators, regulators, and advocates, to develop a strategic plan to answer the question: what must be done to determine, by 2020, how to prevent breast cancer metastasis and save women’s lives?

Members of the Metastasis Summit Planning Committee are beginning their work by looking broadly and identifying a wide range of ideas worth investigating and researchers worth interviewing. Advocates on the committee will be conducting interviews over the coming months with the identified investigators, and then the work will begin to narrow the focus, and to identify the topics and participants for the Summit. The goal of the Summit will be to identify the key questions to carry into catalytic workshops in 2012, in order to get the research accomplished and translated to the clinic as quickly as possible.

But changing the conversation around breast cancer and metastasis must be much more than our Summit. The conversation needs to change in laboratories and classrooms, in the media, in the workplace, the halls of Congress, online, at the kitchen table. We want to hear from you. How are you changing the conversation? What do you think needs to happen to meet Breast Cancer Deadline 2020?

Work has also begun on NBCC’s other major focus for Breast Cancer Deadline 2020 – prevention of breast cancer all together. Look for information on the Prevention Summit in a future blog.

 

NBCC Breast Cancer Deadline 2020 Metastasis Summit Planning Committee

  • Shirley Brown, Advocate
  • Frank Calzone, PhD, Amgen, Inc.
  • Suzanne Fuqua, PhD, Baylor College of Medicine
  • John Glaspy, MD, PhD, UCLA Medical Center
  • Sherry Goldman, Advocate
  • Kathleen Harris, Advocate
  • Patricia Haugen, Advocate
  • Michelle Holmes, MD, DrPH, Harvard School of Public Health
  • Debbie Laxague, Advocate
  • Debra Madden, Advocate
  • Silvano Martino, DO, The Angeles Clinic & Research Institute
  • Musa Mayer, Advocate
  • Marlene McCarthy, Advocate
  • Shirley Mertz, Advocate
  • Laura Nikolaides, NBCC
  • Patricia Steeg, PhD, National Cancer Institute
  • Fran Visco, NBCC
  • Sandy Walsh, Advocate
  • Danny Welch, PhD, Kansas University Cancer Center
  • Maria Wetzel, Advocate

References

1”But under the law, every American who buys a new plan can access free preventive care like Pap smears and mammograms. That means women are no longer going to have to put off breast cancer screenings, taking the risk that their cancer could be caught late – when chances of survival can be as low as 23 percent – instead of early – when the survival rate is 98 percent.” Secretary of Health and Human Services Kathleen Sebelius in a blog post on Huffington Post, Protecting and Strengthening Women’s Health, Feb. 18, 2011.

 2 “Since the introduction of Herceptin® in 1998, manufac¬turers have been flocking to oncology, creating an R&D arms race. Several large pharmaceutical companies (some of which have little or no prior experience in cancer thera¬peutics) have committed more than 20% of their late-stage pipeline projects to oncology molecules.…. Nearly 2,000 individual molecules for the treatment of cancer are under development—a measure of the indus¬try’s determination and ongoing commitment to finding new and innovative treatments for cancer.” The Oncology Pipeline: Maturing, Competitive, and Growing by Steven J. Gavel. http://www.imshealth.com/imshealth/Global/Content/Web%20Article/The_Oncology_Pipeline3.pdf

3 http://www.washingtonpost.com/wp-dyn/content/article/2010/08/15/AR2010081503466.html

4 Treatment Related Mortality with Bevacizumab in Cancer http://jama.ama-assn.org/content/305/5/487.abstract

 5 Soliman H. Developing an effective breast cancer vaccine. Cancer Control. 2010 Jul;17(3):183-90.

Today is Metastatic Breast Cancer Awareness Day

Forty years ago, women with breast cancer were viewed as tragic victims, and they mostly dealt with their disease in isolation.  But over the years, the pink revolution, and the “coming out” of celebrity women such as Betty Ford, has brought the disease out into the light.  Those with the disease were transformed from victims to survivors.  Popular culture has even portrayed the breast cancer experience as an enlightening or enriching experience.  There is now a pink cheerfulness and sisterhood associated with having survived and beaten this disease.

But those living with Stage IV disease have been left out.  Unfortunately, women living with advanced breast cancer are still isolated in our society.  And perhaps the pink revolution has made it even more difficult for these women.  Because now, many people, and even some within the breast cancer community, want to view those with metastatic disease as those who didn’t do what they were supposed to, didn’t get their mammograms on time, didn’t fight hard enough, didn’t stay cheerful enough, didn’t exercise or eat well.  It’s much easier this way than facing the reality of breast cancer, and how little control we have over the disease.

The reality is that approximately 5% of the over 180,000 women diagnosed with breast cancer each year have Stage IV or metastatic disease at the initial diagnosis, and between 20-30% of the rest will have metastatic spread of the disease in the future.  By 2011 there is expected to be 162,000 women living with metastatic breast cancer in the U.S.,  according to Dr. William Gradishar from Northwestern University Feinberg School of Medicine.

It’s time we bring those living with metastatic breast cancer out into the light too.

For more information on Metastatic Breast Cancer Awareness Day click here.

For information and support:

Metastatic Breast Cancer Network

AdvancedBreastCancerCommunity.org

BCMets.org

AdvancedBC.org

Surgery May Increase Survival in Stage IV Breast Cancer

Study results presented today at a European Cancer Organization conference in Berlin  may give physicians a reason to rethink the standard of care for Stage IV or metastatic breast cancer.

Treatment for women who are diagnosed from the beginning with a Stage IV breast cancer, or one that has spread to other parts of the body, is  typically focused on systemic, or whole-body treatments, such as chemotherapy.  Surgery to remove the primary tumor is usually not a priority in the treatment of metastatic disease.

However, researchers in The Netherlands found significant differences in survival between those who had had surgery to remove the primary tumor versus those who had not. In a retrospective study of 728 patients, the researchers discovered that those patients who had received surgery survived an average of 31 months, compared to 14 months for those who did not receive surgery. The five-year survival rates were also significantly different – 24.5% for the surgery group, compared to 13.1% for the non-surgery group.  Having had surgery was an independent prognostic factor even after adjusting for age, period of diagnosis, the number of metastatic sites and different types of treatment.

The researchers suggest that removal of the primary tumor reduces the number of circulating tumor cells in the rest of the body, or perhaps reactivates the immune system.  They are doing further analysis to determine if those who received surgery presented with less severe symptoms and perhaps had less severe disease.  They also plan to expand the study to look at the records of 10,000 patients over the last ten years.  In addition, the researchers would like to work with the Dutch Breast Cancer Research Group to set up a national randomised controlled trial to prospectively study the effect of surgery in Stage IV breast cancer patients.

Lots more work needs to be done to address the needs of women with Stage IV metastatic disease.  But this is one, small, encouraging step forward.

Research results presented today in Berlin, by Dr. Jetske Ruiterkamp, a surgeon from the Jeroen Bosch Hospital, Den Bosch, The Netherlands, at a European cancer congress, ECCO-15 and ESMO-34.