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MBCN Announces Their 2015 Metastatic Breast Cancer Research Leadership Awards

metastatic

I want to share a press release from the Metastatic Breast Cancer Network (MBCN), an all-volunteer, patient-led organization, that has long advocated for more focused metastatic breast cancer research that improves outcomes in the clinic for patients with metastatic breast cancer, an incurable disease that ends the lives of 108 people every day of the year.

April 10, 2015 – NEW YORK — The Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.

“In 2014, MBCN made a commitment that all memorial contributions made to MBCN would go to funding metastatic research,” said Shirley Mertz, President. “We are pleased to present leadership awards of $50,000 each to two individuals whose work contributes significantly to understanding basic knowledge about the process of metastasis and to improving how patients are treated.”

 Mertz, living with metastatic breast cancer since 2003, noted that although metastatic breast cancer is responsible for virtually every breast cancer death, it receives only a tiny percentage of the billions dedicated to breast cancer research.

“MBCN is a founding member of The Metastatic Breast Cancer Alliance,” Mertz said.“The Alliance’s Metastatic Breast Cancer Landscape Analysis released in October 2014 found that metastatic focused research made 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. Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally. We know research holds the key to changing those statistics—we are proud to support the work of Drs. Ewald and Ellis.”

Improving Knowledge About Metastasis: Dr. Andrew Ewald, Assistant Professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine

Dr. Ewald is an interdisciplinary cell and cancer biologist. His laboratory, made up of basic science and medical trainees working in collaboration with engineers and clinicians, pioneered the development and use of 3D culture techniques to capture and analyze in real-time the growth and invasion of breast cancer tumor cells.

This work is providing deeper insights into the biology of metastasis. Dr. Ewald’s work is complex, and yet he is able to explain his work in a way that patients can understand, as this video demonstrates (https://www.youtube.com/watch?v=gezIo3p2dl8).https://mbcnbuzz.files.wordpress.com/2015/04/andrewewald.jpg&h=203

“Breast cancer patients of all stages are shocked to learn that after 30 years of breast cancer research, scientists cannot fully explain how and why breast cancer cells leave the breast and travel to distant organs, particularly many years after successful treatment for early stage disease,” said Mertz. “Unfortunately, this happens to about 30% percent of early-stage patients—and we don’t know why. How can we optimally treat the disease if we do not understand the processes that caused it’s spread?”

Dr. Ewald believes research that seeks to understand and describe how cancer cells learn to make connections to other nearby cells, travel through local tissues and the blood stream, and then establish themselves as a new tumor in the bone, lung, liver or brain will lead to new strategies and treatments to control or eliminate cancer cells from accomplishing these steps to metastatic spread and ultimately improve outcomes for individuals with metastatic breast cancer.“We applaud Dr. Ewald on his important and challenging work in cell and cancer biology,”Mertz said. “MBCN and its members will continue to follow future developments in his research.”

Improving Treatments For Metastatic Patients: Dr. Matthew Ellis, Director of the Lester and Sue Smith Breast Center at Baylor College of Medicine

Dr. Matthew Ellis is both an oncologist and scientist who has championed the cause of metastatic breast cancer patients for well over a decade. Currently, Dr. Ellis is the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine. He was recruited from Washington University School of Medicine in St. Louis where from 2010 to 2014 he was a professor of medicine and head of the section of breast oncology. He had also served as a faculty member there since 2003.

While at Washington University Dr. Ellis gathered a large resource of patient derived xenografts (tumors taken directly from the patient and studied in animals) and these became excellent resources for testing new therapies and understanding treatment resistance.

His work to develop these models focused on estrogen receptor positive breast cancer and these patient derived xenografts will now complement similar efforts underway by Baylor Smith Breast Center researchers with estrogen receptor negative breast cancer.

Dr. Ellis, a pioneer in breast cancer genomics, has been instrumental in developing a Genome Atlas and Therapeutic Road Map for estrogen receptor positive breast cancer. Most recently he has found that metastatic breast tumors initially positive for the estrogen receptor frequently harbor mutations and translocations in the receptor that render the tumor resistant to endocrine therapies used to block estrogen. Several laboratories are now trying to develop new drugs that will block these mutant receptors.

“MBCN acknowledges Dr. Ellis’s leadership in identifying groundbreaking new information about mutations in breast cancer and their clinical relevance. His work in this area has the potential to bring precision medicine to metastatic breast cancer patients and, hopefully, with it, longer survival. (Hear Dr. Ellis discuss his work here (https://www.youtube.com/watch?v=aCCPhAHbgpI).)https://mbcnbuzz.files.wordpress.com/2015/04/mellis.jpg&h=203

“The Metastatic Breast Cancer Network acknowledges and thanks the individuals, organizations and private companies whose donations to MBCN on behalf of or in memory of loved ones and friends with metastatic breast cancer made these research leadership awards possible,” Mertz said. “We are confident the awards will advance the work of Dr. Ewald and Dr. Ellis.”

 Source: The  METASTATIC BREAST CANCER NETWORK

The Metastatic Breast Cancer Network, a national, not-for-profit organization, was  founded in 2004 to raise awareness about the kind of breast cancer that is rarely discussed in the breast cancer support groups or the media—metastatic breast cancer. Unlike early stage breast cancer, in which cancer cells are confined to the breast, in metastatic breast cancer, cancer cells have traveled from the breast to other sites in the body. Patients with metastatic disease are in constant treatment and must deal with the harsh reality that their disease is chronic, progressive and ultimately fatal. Led by patient advocates, MBCN has worked to offer education and information to patients and their caregivers through its website (mbcn.org (http://www.mbcn.org ) ); targeted brochures developed for the public and those newly diagnosed; and an annual conference for metastatic patients at major comprehensive cancer centers.

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Take a Look

During my weekly research for blog content I often come across sites that are worth taking a look at because of the services or information they are offering. What follows are three such sites:

The HERS Breast Cancer Foundation – established in 1998 with a mission of empowering women affected by breast cancer, supporting their well-being with post-surgical products and educational services, regardless of financial status.

Take a Look...www.hersbreastcancerfoundation.org

The Breast Cancer Society – directly assists families of those diagnosed with breast cancer to help them survive the ordeal. The Breast Cancer Society provides direct financial grants to individuals. Additionally, the organization operates an extensive program of providing medicines, commodities and supplies to breast cancer patients, clinics, missions, and hospitals all over the world.

Take a Look...www.breastcancersociety.org

Cancer 101 – provides CANCER101 Planners to cancer centers in all 50 states to give to their patients and caregivers in need. Planners are free to patients and include essential organizational tools and important resources designed to empower patients and caregivers to take control over their diagnosis from the moment they learn they have cancer through the next ten years of follow-up care.

Take a Lookcancer101.org

So…take a look; there may be something on each site that may  be helpful no matter where you are on your breast cancer journey.

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Breast Cancer in Latina Women

Most Latina women presenting for care in the city hospitals, during my years as a navigator, did so with advanced breast cancers.

Few of the Latina women had a history of getting mammograms. Many had cancers that were more aggressive and harder to treat.

In speaking with Latina ladies, they shared language barriers, socio-economic reasons, lack of education, lack of awareness of breast cancer, and the need for annual screenings as reasons for not seeking care.

Other ladies gave cultural reasons, such as women touching themselves being a taboo. Others said fear kept them from coming for care…fear of disease, fear of the treatment, fear of the loss of their hair, breast, and femininity. Fear of the loss of a husband, or significant other was a major issue. Some feared that breast cancer was a punishment for something they did earlier in life.

Recent studies and statistics show that Latina women have lower breast cancer rates than white women. However, they are more likely than whites to be diagnosed at a later stage, when the cancer is more advanced and harder to treat.

Yet, even with early diagnosis, Latina women are more likely to have tumors that are larger and harder to treat than white women. They also seem to get breast cancer at younger ages. Researchers are not sure why these differences happen.

Despite increased breast cancer awareness outreach efforts in Latina communities the Nation Cancer Institute (NCI) reports that breast cancer is still the most commonly diagnosed cancer in Latina women in 2013.

In 2007, NCI reported that despite equal access to health care services, differences persist in the size, stage, and grade of breast cancer for Hispanic women compared with non-Hispanic white (NHW) women. The study compared 139 Latina women and 2,118 NHW women with breast cancer who were all established members of the Kaiser Permanente Colorado health plan. The Latina women were diagnosed at a younger age; at a later stage of disease; with larger, higher grade tumors; and with less treatable estrogen-and progesterone-negative tumors, reported the investigators led by Dr. A. Tyler Watlington at the University of Colorado Health Sciences Center.

“The results of this study confirm those of many previous studies that breast cancer presents differently in Latina women,” the researchers noted.

“Previous research has suggested that the differences may be due to socioeconomic factors, especially lack of or inadequate health insurance and less access to care among low-income Latina women. However, the current study shows that “these differences were apparent even among a group of Latina women with equal access to care and similar health care utilization,” researchers  added.

Outreach in post secondary schools, that have large enrollments of  young Latina women, is needed if we are going to reach Latina women when they are in their early 20’s and 30’S. We need to help them realize that early screenings offer them the best possible outcomes if a breast cancer found. We also need them to carry the message to older women in their Latina communities. These young women can be a powerful force in getting older Latina women to get screened.

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Regrets About Having a Bilateral Mastectomy When Only One Breast Has Cancer?

breastMuch is being written these days about a growing trend in which women diagnosed with breast cancer and needing a mastectomy are opting to have the healthy breast removed as well.

While each woman chooses for her own reasons, many women  share some common motivations in their choice to have the non-cancerous breast removed. Choices range from having the greatest possible peace of mind by reducing the chance of recurrence to the cosmetic considerations of perfectly matched, balanced, reconstructed breasts covered by insurance.

Other like myself, who’ve had a previous breast cancer, just want our breasts gone. They have caused us too much anxiety with extra screenings and  biopsies to check out every unexplained change.

Years after my second cancer, a friend asked if I had any regrets about having a bi-lateral mastectomy with no reconstruction. My answer was a resounding NO!

Why? I had no control over getting breast the first or second time, but I did have the power to make a choice that would give me the greatest peace of mind. And that is what I did. I chose to have the breast with cancer removed and the other breast, the site of the first cancer 10 years earlier, also removed.

Why no reconstruction? It didn’t seem necessary to me. I didn’t want anymore surgery than I had to have to rid myself of cancer. I was and still AM fine with being flat chested, just as I had been until the birth of my child. I was never in to showing cleavage. I was well aware that breast prostheses do a good job of filling out clothing, and when they come off at night…I can comfortably sleep on my stomach!

Her question got me thinking about all of the women who’ve made the same choice I made after being diagnosed with cancer in one breast…the decision to have the other breast removed. What, if any were their regrets?

My research turned up a paper about a survey of women who chose a bilateral mastectomy that answered my question. The paper reports on a survey conducted at the Mayo Clinic in Rochester, Minn., in which hundreds of women, who chose a bilateral mastectomy, were each asked about having any regrets about the decision to have a healthy breast removed along with the breast that had a cancer.

The survey included women who had a cancerous breast and a healthy breast removed between 1960 and 1993. They were surveyed 10 years later to determine if they had regrets or were still satisfied with their choice. They were also asked if they would make the same decision again. After another 10 years, the majority were surveyed once more. Complete results were available for 269 women.

In the initial survey, 86 percent said they had no regrets about their decision and 95 percent said they would repeat the procedure if they had to again. In the 20-year follow-up, 90 percent expressed satisfaction with their decision and 97 percent said they would repeat it.

Previous research found that women who had undergone  a prophylactic  mastectomy (removal of the healthy breast along with the breast with cancer) were satisfied with their decision soon after the surgery. The outcome of this survey  documents that women who were comfortable with their decision after the surgery are still comfortable with their choice many years later.

I can relate to the women in the survey that stated they would choose a bilateral mastectomy again, even though they admitted to have experienced negative body image and feelings of a loss of femininity. Having no regrets about a decision to have both breasts removed doesn’t mean there are no feelings about having to make such a decision.  There is a mourning period. It takes time to accept the change in one’s body image.

For more information about prophylactic mastectomy, visit the U.S. National Cancer Institute.

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What I Learned from Two Breast Cancers

breast cancer

A diagnosis of breast cancer comes with many lessons. All cancers do. Here are just a few :

  • You don’t have to accept the unacceptable. You can find a treatment center, with healthcare personnel that treat you with dignity from the receptionist to the surgeon, the oncologist and every other member of the breast cancer treatment team.
  • Don’t choose a treatment center because it is convenient; choose based on reputation for excellent breast cancer care and a site visit.

  • Be a partner in your care. Ask questions, and keep asking them until you understand what your recommended breast cancer treatment plan is going to be. Have you pathology report explained to you. Get referrals for other services you might need such as counseling, nutrition, genetic testing.
  • Ask to be put in touch with a survivors group that can give you pointers on preparing for the practical issues that will arise, such as shopping for clothing for after surgery or during radiation, and/or a wig, if chemo is a part of your treatment.

  • Wearing wigs takes practice to make them look natural. A good wig gal guarantees never having a bad hair day!
  • Life doesn’t stop for you or anyone else when you have cancer. There are still things that have to be done and good things to be enjoyed.
  • The people who are there for you during your breast cancer treatment may come with pleasant surprises and a few disappointments.
  • Avoid the toxic person who looks at you as if you have hours to live.  Also avoid the one who wants to know every detail of your experience, and then wants to tell you what happened to someone she knows who has breast cancer; it is usually a depressing story!

  • Drop the ones  who need to tell you what you should be feeling and how you should be coping with your breast cancer.
  • Pick a few close friends and family members who are non-judgmental, good listeners and let them be the people you turn to when you need to talk. It helps if they have a sense of humor.
  • Let people help. Some people are not good with words, but they would be happy to help  by running errands, cooking a meal or driving  you to treatment.
  • There are those who will tell you that your cancer was hard for them to deal with and that is why they couldn’t call you or visit while you were in treatment. You don’t need these people either.
  • A friend or family may expect you to be your old self as soon as treatment is over with no residual fears and no need to speak about your experience ever again unless you have a recurrence. Join a breast cancer support group. Members won’t have you on a time table; they will be able to relate to you and where you are at, because they are there now or have been there not so long ago.

  • One day, active treatment will be over, and your biggest challenge will be to live in today and not allow fear of a breast cancer recurrence to rob you of enjoying your life as a survivor
  • Every day that you wake up and don’t have to go for tests or treatment is a good day!
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