Tag Archives: Metastatic Breast Cancer

How a Pink Tutu is Impacting Metastatic Breast Cancer

Receiving a cancer diagnosis is a life-changing experience, not only for the patient but also for his or her family. Metastatic breast cancer (MBC) – the most advanced form of breast cancer – can be particularly emotional for caregivers to face because they must adjust to the fact that their loved one will have cancer for the rest of her life. While an MBC diagnosis is not something anyone takes lightheartedly, laughter can be helpful to successfully manage the journey.

1_Bob and Linda Carey_MG_6788No one knows this better than Bob Carey, Founder of The Tutu Project, whose wife, Linda was diagnosed with MBC in 2006. As a commercial and fine art photographer for 20 years, Bob has used his love of the medium to spread laughter, hope and support to those living with cancer all over the world. The Tutu Project started as a photo campaign and the project eventually grew into something much larger than he ever imagined.

Linda made it her mission to raise funds to provide financial support for breast cancer patients and their families. She and Bob joined forces to create The Carey Foundation, which distributes funds raised from donations and sales of Bob’s prints, calendars, t-shirts, postcards, and a currently sold-out book, to help cover expenses typically not covered by insurance, such as transportation, home care, child care and medical supplies. New photos are regularly added to The Tutu Project website and distributed through social media as each project is completed. The decision to wear only the tutu was Bob’s way of pushing the limits and emulating the bravery of cancer patients the best way he could.

1BobBelow, Bob discusses his and Linda’s shared journey of living with MBC and how his personal project involving a pink tutu has turned into a worldwide source of comfort, joy and inspiration for not only him and Linda, but also for thousands of women living with MBC.

AstraZeneca: How did the diagnosis of MBC affect you and Linda?

Bob: After being in remission from breast cancer for three years, Linda was diagnosed with MBC in 2006. Even though she had to begin treatment again, it seemed the MBC diagnosis was more emotional and psychological. With her initial breast cancer diagnosis, she understood that it was possible that she could die from this disease, but there was also a great deal of hope based on her surgery and subsequent treatment. When her cancer returned, the concept of hope changed, and the concept of death became a very real fear. Although Linda is a very positive person, which I believe has helped, her MBC diagnosis was the start of an emotional roller coaster for us.

AstraZeneca: Since learning of Linda’s diagnosis, how has The Tutu Project evolved?

Bob: Initially, it was a project to help myself and then became a way to make my wife laugh, as well as bring a bit of humor into our now upside down life. When Linda had a recurrence she took the images with her when she received treatment, and the emotions the photos conveyed seemed to resonate with the other patients.  Now that it’s spread worldwide, I recognize that I have an opportunity to bring laughter and inspiration into the lives of people living with breast cancer.

AstraZeneca: What challenges have you faced being a caregiver?

Bob: The difficult aspects; seeing what Linda goes through daily. Although she’s amazing, it’s hard to not be able to fix everything. One minute she feels good and then the next she doesn’t, I feel kind of helpless. I know our life has changed, but even with MBC Linda is very active and since this project has begun it’s a major focus of hers. With Linda I feel like I’m more of an emotional support.

AstraZeneca: Can you share your top three pieces of advice for other MBC caregivers?

Bob: 1. Take time for yourself. Though this is about the one diagnosed with cancer, it’s important to recognize you also need to accept support from others and make sure you take time out for yourself.

2. Don’t take things personally. Most of the time it’s not about you, although it may seem to be expressed as such.

3. Sometimes it’s not about finding the right words. Sometimes it’s a hug or a touch that’s needed. This may take time to recognize.

AstraZeneca: How have you seen The Tutu Project help MBC patients and their loved ones?

Bob: By the Facebook messages and emails we receive, the images seem to impact those living with breast cancer as well as family members, sometimes even after their loved one has passed. It helps them on a daily basis – brings laughter and humor to their day. They pretty much know that we’re there for them.

While Linda and I were in Germany for a showing of a short documentary about The Tutu Project and gallery exhibit featuring our photographs, sponsored by Deutsche Telekom, we invited people to stop by the exhibit and say hello. One woman came up to us and asked us if we could talk to her friend on the phone. She was still in treatment and unable to travel the several hours to meet us. She cried when she heard our voices. We cried because it was such a touching thing for a friend to do for another.

AstraZeneca: How can individuals support The Tutu Project and the work The Carey Foundation is doing on behalf of the MBC community?

Bob: Donations can be made on our website: http://careyfoundation.org.

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To view Bob’s photography, visit www.TutuProject.com.

For more information tailored to the needs of MBC patients and caregivers visit www.LifeBeyondPink.com.

All photos from The Tutu Project were taken and are owned by Bob Carey.

Living with Metastatic Breast Cancer: Become Your Own Advocate

By Jen Campisano, founder of Booby and the Beast

It was the summer of 2011 and things were going well. I had landed a job I was happy with, and my husband, Chris, had been offered a job as an assistant professor at Arizona State University. After three years of marriage and welcoming our son, Quinn, into the world we were exhausted, but things felt like they were finally falling into place.

That all changed when I noticed a lump in my breast. At first, I didn’t think much of it and neither did my doctor. During a visit to my late mother-in-law’s house in California, I confided in her that the lump on my breast was not responding to the hot compresses that my doctor had recommended for what he believed might have been blocked milk ducts from nursing Quinn. She encouraged me to get a second opinion and I did. Over the next few weeks, I went from thinking the lump was nothing to learning that I had an aggressive form of breast cancer – a tumor that was now the size of a walnut. Tests in those early weeks showed that the cancer was metastatic.

I didn’t know much about breast cancer, let along metastatic breast cancer (MBC), at the time and assumed that I would be “done” with this chapter in my life once I had completed treatment. My husband and I were stunned to learn in the spring of 2012 that the cancer had spread to other places in my body, and that I would be in treatment for the rest of my life. I also learned that MBC claims the lives of 40,000 Americans each year, a number I found daunting.

To help cope with the fears and complex emotions I was feeling, I started a blog. But, I credit a good friend of mine with nudging me to share my experience as a way to help others who are on the same journey. The blog has connected me with a remarkable community and has provided me with a platform to help tell the MBC story to a broader audience than I ever could have imagined. This National Breast Cancer Awareness Month, I want to take this opportunity to urge those living with this disease to do two things: get educated and advocate for yourself.

Educate yourself and take advantage of resources available to you

Education is so important! We live in a “soundbite society,” in which we seem to gravitate towards light and happy endings. This can be an additional challenge when facing a disease as complex as MBC. It is precisely for this reason, however, that education is so important.

The more you educate yourself – whether it’s learning about your hormone receptor status, conducting research into potential clinical trials, or seeking information about other options available to you – the better equipped you are to communicate and meet your needs. I encourage people living with MBC to make informed treatment decisions and take advantage of resources that can improve quality of life.

Advocate for yourself: you are the priority

It is also important to create a strong partnership with your entire treatment team. One of the things I love most about my treatment team is that they are so responsive. Whether it’s taking the time to discuss my concerns or having me come into the office to get extra fluids when I’m not feeling well, my team has always made time for me. I believe this type of responsiveness and partnership has been a crucial factor in why I am doing so well in spite of this devastatingly scary disease.

My message to those who do not have a strong partnership with their treatment team is to not be afraid to create a team you can trust and have open dialogue with! When your life is on the line, you have to push until you get answers to whatever it is that is troubling you, and if something doesn’t seem right, I encourage you to seek out other professionals until you are comfortable. I am so glad I took the time to create a treatment team whom I felt comfortable with.

I have had no evidence of disease (NED) for 23 months and continue to go receive treatment every three weeks. In spite of the reality that I will remain in treatment for the rest of my life – I count my blessings every day.

Jen Campisano writes about her experiences with metastatic breast cancer and motherhood on her blog, Booby and the Beast. She lives in Phoenix, Arizona with her husband, Chris, and son, Quinn.

AZ Demonstrates Commitment to Patients at San Antonio Breast Cancer Symposium

This week, a global team of AstraZeneca employees will come together in Texas for the annual San Antonio Breast Cancer Symposium (SABCS), joining approximately 7,500 attendees from more than 90 countries for the opportunity to hear and present state-of-the-art information on the prevention, diagnosis, and treatment of breast cancer and breast disease.

At SABCS, AstraZeneca will be presenting studies around breast cancer treatment research, including updated results from a previously reported investigational Phase II study that supports the safety and efficacy of an approved AstraZeneca product. SABCS 2014 will showcase our growing portfolio across breast cancer stages and types with a primary focus on advanced breast cancer, an area with a still high unmet need.

“For more than 40 years, we have been developing drugs that have significantly increased treatment options for cancer patients around the world,” said Antoine Yver, Head Oncology, Global Medicines Development at AstraZeneca. “It is a legacy we are building on within our portfolio, which we believe has the potential to redefine the treatment paradigm for cancer.”

While advances in treatment and detection have been made over the years, breast cancer remains the leading cause of cancer death in women around the world and the second leading cause of cancer deaths among U.S. women. Approximately 30% of women with early breast cancer will develop advanced or metastatic disease.

Several photos submitted by women with #MBCStrength were shown October 13 on a Times Square billboard.

Several photos submitted by women with #MBCStrength were shown October 13 on a Times Square billboard.

We at AstraZeneca believe it is important to continue to study and evaluate treatment options for metastatic breast cancer and remain committed to developing and optimizing breast cancer therapies for all patient groups. We also believe it is critical to support those living with the disease today. An estimated 173,000 women in the United States are living with metastatic breast cancer and each has a story to tell. That’s why AstraZeneca recently launched a nationwide photo-sharing campaign to provide women living with advanced breast cancer another way to share their inspiration, experiences and strengths with others. To show their support, more than 350 women living with metastatic breast cancer uploaded photos of themselves on social media using the campaign hashtag #MBCStrength, and some of these photos were shown October 13 on a Times Square billboard to celebrate the fifth anniversary of Metastatic Breast Cancer Awareness Day. We are also continuing to expand our educational resources available at MyMBCStory.com, a year-round resource for women living with metastatic breast cancer and their supporters.

We look forward to engaging in meaningful dialogue at SABCS with some of the world’s most inspirational leaders in breast cancer.

AZ Launches Metastatic Breast Cancer Photo-Sharing Campaign

MyMBC

Post a photo of yourself on Twitter using #MBCStrength to shine a light on metastatic breast cancer.

More than 173,000 women in the United States are living with metastatic breast cancer (MBC), and each has a story to tell. Women with MBC encounter unique challenges, and it is often an important part of their journey to share their stories and connect with others who are living with the disease.

In support of women living with MBC, AstraZeneca recently launched the #MBCStrength photo-sharing campaign. Women with MBC are encouraged to take photos of themselves that highlight their personal journeys and post them on Twitter using #MBCStrength. Photos posted by October 1, 2014 will be considered for a display in Times Square in New York City on October 13, 2014, Metastatic Breast Cancer Awareness Day.

For more information about this photo-sharing campaign, visit MyMBCStory.com. This site also houses tools and information tailored for women living with MBC. New to the site are personal MBC accounts from Priscilla and Linda: two inspiring women who draw love and support from their family, friends and community.

On Mother’s Day, AZ Recognizes Women Living With MBC

Visit http://www.MyMBCStory.com and plant a flower in the Inspiration Garden to support women living with metastatic breast cancer.

Mother’s Day can be particularly emotional for women living with metastatic breast cancer (MBC) and their families. This Mother’s Day and throughout the month of May, join AstraZeneca in supporting these women and the MBC community by visiting My+Story at www.MyMBCStory.com and planting a flower in the Inspiration Garden. In support of this initiative and others, AstraZeneca will donate to breast cancer organizations for their continued support of women living with MBC. Help us reach our 500-flower goal by May 31!

New to the site is Jewel Crawford Ajibade’s personal account of her own MBC journey. A wife, a mother, and a friend to many, Jewel is no stranger to breast cancer. Her mom and aunt both lived with the disease, and dealing with her own diagnosis requires strength each day. Despite the challenges of managing the disease, Jewel has directed her energy into patient advocacy work with LBBC and has become a source of inspiration for others. Read her story here.

The My+Story site also houses tools and information tailored for women living with MBC, including treatment options and tips on disease management. To reinforce the power of imagery and the importance of capturing memories, visitors may also create a customized, hard copy photobook of personal stories that may be shared with loved ones. The Web site is designed to connect the MBC community with the information they need and links to patient support groups that have specific programs for patients with MBC.

 

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Keeping patients at the forefront of cancer research

A global team of AstraZeneca employees will spend this week in Texas for the annual San Antonio Breast Cancer Symposium.

This meeting is a chance for scientists from biopharma and academia to interact with health care professionals and other researchers to exchange information that helps us better understand and develop treatment options for breast cancer.

For more than 30 years, AstraZeneca has researched, discovered, and developed medicines to fight cancer. One of the areas the AstraZeneca team is focused on is metastatic breast cancer. As we explained in this post, metastatic breast cancer—a form of advanced breast cancer also referred to as stage IV breast cancer—is diagnosed when a breast cancer has spread to other parts of the body.

Patients are at the forefront of our efforts to understand and develop treatment options for metastatic breast cancer.

“We all have loved ones that we hope never get breast cancer in the first place. For those who are unfortunately affected by breast cancer, we want to provide innovative medicines as well as information so that they and their doctors can make the best possible treatment decisions,” said Joe Cordaro, Executive Director of Development at AstraZeneca.

“One of the best ways to keep patients front and center is to hear from them directly about what it is like to face a metastatic breast cancer diagnosis, and to get their thoughts on how we can support them during a journey with cancer,” according to Eric Vogel, who leads the AstraZeneca oncology sales and marketing teams.

So as we head to San Antonio, we wanted to once again share these insights from women who are living with metastatic breast cancer.

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Katherine’s story: Living with metastatic breast cancer

As we explained here, during National Breast Cancer Awareness Month we are focusing on people who are living with metastatic breast cancer.

Katherine O’Brien is a business-to-business editor from Chicago and a volunteer with the Metastatic Breast Cancer Network (MBCN) who contributed the following blog post about her experience with metastatic breast cancer:

By Katherine O’Brien

At a 2009 breast cancer seminar, I met two MBCN volunteers: Joani Gudeman and Shirley Mertz. I had never met another person with metastatic breast cancer. Joani and Shirley made me feel less alone. Their activism inspired me.

In 2008, Shirley and her fellow volunteer Susan Davis launched MBCN’s drive to formally establish October 13 as National Metastatic Breast Cancer Awareness Day. In October 2009, they succeeded: The Senate and House each unanimously passed a resolution to support that designation.

“It is critical to the thousands suffering from Stage 4 illness and to the general public that the voices of metastatic breast cancer patients be heard,” wrote Joani.

I would like to add my voice to that chorus.

I will never forget the day in 2009 when I found out I was of one of 155,000 US people living with metastatic breast cancer.

The oncologist said my breast cancer had spread to my lumbar vertebrae:  “Hopefully the disease will remain under control for a long time although an ultimate cure is probably unattainable.”

You know how when you are going up in an elevator and sometimes it feels like the floor is dropping out from beneath your feet? That feeling lingered with me for weeks.

My cancer center’s library had two shelves of breast cancer pamphlets, mostly for women with early stage disease. One had chapters such as “Why You Should Get Prompt Attention,” and “Not All Lumps Are Cancer.”

Not very helpful to my particular situation.

I kept hunting through the shelves, the oncologic equivalent of Goldilocks sampling each bear’s porridge. Finally, I found a brochure that was just right: “Diagnosis: Metastatic Breast Cancer…What Does It Mean For You?”

This slim MBCN brochure promised “up-to-date facts — demonstrating that today, more women and men with metastatic breast cancer are living longer, productive lives.”

The brochure featured 15 questions and answers about metastatic breast cancer. Question No. 1 was: “Am I going to die?”

That cold and unspoken fear had permeated every cranny of my being for weeks.

“Though you may be concerned by statistics you have heard, keep in mind that every individual is unique,” advised the MBCN brochure. “Because statistics are based on the general population, they do not reflect the experience of any one individual. Each person brings to the table a unique set of characteristics that influence her or his experience with breast cancer. In addition, no really accurate statistics predicting survival for metastatic breast cancer patients are available today.”

Those few sentences gave me a lot of hope.

It’s been two years since my diagnosis. My treatment has been mild and I am very fortunate to be stable. But it’s a strange existence. The late Susan Davis, a tireless volunteer with the MBCN, said it best. Susan lived with mets for almost a dozen years. Although she endured progressively more grueling treatments, she said ultimately even the harshest side effects weren’t as difficult as the mental fight.

“I live in a constant state of hopeful dread,” she wrote. “I am hopeful I will be stable. I dread that my next test will show I am not.”

My mother died from inflammatory breast cancer a few weeks after I graduated from high school. Mom had no support group and practically no resources to cope with this rare disease. I have learned so much from other patients. I am grateful to have instant access to them via the Internet. Volunteering with the Metastatic Breast Cancer Network and other advocacy groups is very important to me. I want to help other patients and their families. I want the general public to be better informed about this disease. I want to make a difference.

The best thing you can do for someone with metastatic breast cancer is to be there for them—not just when they are first diagnosed, but for the long haul.

“I hate when people feel sorry for me and give me that look,” says one of my friends who has metastatic breast cancer. “We don’t have to talk about cancer all the time. Normalcy is great! I am still here—with hair or even bald. I’m here. Some days are harder than others, but I try to live as much as possible.”

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A message from the Cancer Support Community

As we explained here, during National Breast Cancer Awareness Month we want to share resources for people who are living with metastatic breast cancer.

What better way than to invite some of the organizations that are on the front lines of patient care to contribute to our blog?

Today’s post is from Kim Thiboldeaux, President and CEO of the Cancer Support Community:

Throughout the month of October, it seems that everywhere you go there are symbols of breast cancer awareness and support – from pink apparel and household items, to special edition bejeweled cell phones. Here at the Cancer Support Community, we have resources for all people affected by breast cancer – patients, survivors, family members and friends – available at no cost throughout the year.

The mission of the Cancer Support Community (CSC) is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action, and sustained by community.  We offer a menu of personalized services and education for all people affected by cancer – regardless of the type of cancer or stage of the disease. These support services are available through an international network of more than 50 professionally led community-based centers, over 100 satellite locations at hospitals and community oncology practices, and online, so that no one has to face cancer alone.

Here’s an overview of some new and ongoing programs CSC provides during breast cancer awareness month and beyond:

–NEW ONLINE: Due to advances in treatment, women are living longer, fuller lives with breast cancer. CSC is partnering with the Young Survival Coalition to produce a webinar addressing the needs of young women with advanced breast cancer. Through this webinar, young women dealing with a metastatic breast cancer diagnosis can learn how to manage side effects, stay healthy before and after treatment and connect with other young women going through a similar experience. The webinar will feature Sage Bolte, MSW, LSCSW; a metastatic breast cancer counselor from Life with Cancer. The event takes place Thursday, October 13th at 7pm, so be sure to register for the webinar by following the instructions here.

–NEW IN PRINT: On October 3rd, CSC released the third edition of its acclaimed Frankly Speaking About Cancer: Advanced Breast Cancer education series. The program arms women facing metastatic breast cancer and their loved ones with information, allowing them to participate as an active part of their health care team. The program includes a printed booklet, interactive CD-ROM, online educational information, and face-to-face patient workshops, available throughout the country at many CSC affiliates. Click here to find a CSC affiliate near you.

–NEW RESEARCH: Are you a breast cancer survivor? Make your voice heard! CSC’s Breast Cancer M.A.P. (Mind Affects the Physical) Project examines the experience of breast cancer survivors from diagnosis through survivorship. By answering a series of questions about your experience, you will join a movement of thousands of women helping to inform researchers about the needs of survivors and the types of resources needed to improve the experience of women facing a diagnosis. CSC recently announced findings collected from more than 1,000 women who joined the M.A.P. Project last year. Click here to join today and make sure your experience is counted towards the findings of next year’s study!

–NEW WORKSHOPS: Interested in learning more about your breast reconstruction options at any stage of a breast cancer diagnosis? CSC’s educational program, Frankly Speaking About Cancer: Spotlight on Breast Reconstruction includes a print book, online content, and a medically led workshop addressing the decision-making process related to breast reconstruction following a cancer diagnosis. Click here to learn more!

–NEW FOR CAREGIVERS: At CSC, we know that cancer doesn’t only affect the person who is diagnosed, but their loved ones as well. That’s why we’ve developed a line of educational publications through our Frankly Speaking About Cancer series to address the needs of family members and friends of someone facing breast cancer. Some titles include:

When A Woman You Care About Has Breast Cancer

Caring From a Distance

10 Tips for the Cancer Caregiver

Cuidador a Cuidador (En Espanol)

If you or someone you know is affected by breast cancer, or any kind of cancer, be sure to check out Cancer Support Community’s many resources for patients, survivors, and their families and friends – no matter where they are in their cancer journey.

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