Not that long ago, most women had their children in their twenties. Now, with the luxury of contraception and with the addition of successful assisted reproductive technology (ART), women are able to decide to not have children until they are in their thirties or forties. This means we are seeing more women diagnosed with premenopausal breast cancer who have not yet had children. Fertility after cancer treatment affects people with all different types of cancers. But it is especially complicated in breast cancer, where treatments may include ovarian suppression for women with hormone-sensitive tumors or the recommendation of a preventative removal of the ovaries for women who carry a BRCA1 or BRCA2 mutation.

Pamela Munster, an oncologist at the University of California, San Francisco Helen Diller Family Comprehensive Cancer Center addressed all of these issues in a comprehensive review of both the problems and the options published on June 17 in Oncology.  [http://www.cancernetwork.com/breast-cancer/content/article/10165/2145852]

As she points out, the NSBAP B30 study [http://www.nsabp.pitt.edu/B-30.asp] found that women whose periods stopped during chemotherapy and did not start again were less likely to have a recurrence or die from breast cancer, even if their tumors were estrogen negative. Another study, the International Breast Cancer Study Group Trial VIII [http://www.ncbi.nlm.nih.gov/pubmed/21325445] suggested that adding goserelin (Zoladex) to the chemotherapy regimen standard at the time the study was conducted (CMF) increased survival. In addition, recent studies have shown that 10 years of tamoxifen (the hormone therapy used to treat premenopausal women who don’t take a drug to stop ovarian functioning) is better than five. And since women taking tamoxifen are discouraged from getting pregnant (the drug can cause birth defects), this finding extends the time after a breast cancer diagnosis when women is advised against getting pregnant.

This conflict between better overall survival through ovarian suppression and the desire to have children is a hard trade off. Luckily, women can now take advantage of assisted reproductive technologies that allow them to freeze eggs or embryos, so that they can try to get pregnant after their treatment is over. But for women to have this option, we need to make sure that oncologists discuss fertility with their patients and refer those interested in having children to a reproductive endocrinologist before they start their cancer treatment.  It is also important for those of us who talk to women who are newly diagnosed—as I know many of you do—to pass on this information. Another excellent source of information and support is Fertile Hope [http://www.fertilehope.org/], now a program of the Livestrong Foundation. (They may be able to offer financial assistance as well.)

It’s wonderful that cancer doesn’t have to end the dream of having a child. But the need for women to make these choices highlights the limitations and complications of treatments, even when they are successful. It all brings me back to my mantra: We need to find the cause and end breast cancer.

In the summer of 2009, a lawyer from the American Civil Liberties Union (ACLU) contacted me to join researchers, physicians, advocates, and patients in the case against Myriad Genetics. The case contested whether it was legal for Myriad Genetics to patent the mutations in the BRCA1 and BRCA2 genes that increase the breast cancer risk. (These genetic mutations also increase the risk of ovarian cancer and, in men, may also increase the risk of prostate and pancreatic cancers.)

Everyone has the BRCA genes. Only some women and men inherit a genetic mutation that increases cancer risk. Mary Claire King, a researcher working at UC Berkeley in 1990, did most of the work to identify the existence of the BRCA1 mutation. But it was Salt Lake City-based Myriad Genetics, a for-profit company, that developed the genetic test for these mutations, and then went on to patent the genetic mutations themselves. This gave them a monopoly in this country on testing for the mutations, which allowed them to set the price. It also limited the research that could be done on these mutations.

Today’s decision will have far-reaching effects—not only on breast cancer research and treatment but on research into all hereditary diseases. Because of the Supreme Court’s decision, other companies and laboratories can now compete to provide testing, improving the quality of the test as well as reducing the price. In addition, scientists can now do research on all genes and their mutations without fear of being sued. This means we will have a much better chance of identifying other mutations in genes that increase breast cancer risk. It also means that researchers studying other types of cancers and other diseases will not be restricted as to what tests they can do and how they can do them.

Indeed, today’s decision is a victory for people and their doctors throughout the country and all the lawyers, doctors, supporters and advocates who fought against a company’s right to patent, and profit from, a genetic mutation—and indeed there were many of us. Most of all it is a victory for all of us interested in understanding the cause of breast cancer.

Over the past eight years, Naz has served as the Executive Director of the Foundation and has been an indomitable force at driving our mission through the development and implementation of novel programs to democratize research, including the Love/Avon Army of Women and more recently, the Health of Women Study.  These programs have become a benchmark not only for breast cancer research, but for all disease oriented non-profits.  She has represented the Foundation locally and nationally and has been a catalyst for collaborations between non-profit organizations both in breast cancer and beyond.

We are proud of all that Naz has accomplished and we hope you will join us in wishing her well in her new role.

The Foundation has a strong leadership team in place and will continue our work to Act with Love for a future without breast cancer, through conducting, collaborating in and encouraging novel research to find the cause of breast cancer and ways to prevent it.  In addition, we will strive to bring the voice of the public to the research agenda, identifying the consequences of treatment for breast cancer as well as potential causes of the disease.

Though we are sad to see Naz go, we look forward to working together with her in her new role and to continuing to collaborate on our shared mission to end breast cancer.

NAME:  Leah Wilcox Eshraghi

POSITION:  Army of Women Research Project Manager

HI! I’M LEAH.  I manage the Army of Women Program at the Dr. Susan Love Research Foundation, working with our dedicated participants and innovative researchers to help fast track the research process.  I earned by BS in Biology and Psychology from Valparaiso University and went on to work in biotechnology for about 7 years. That wasn’t the right fit for me, so I decided to go back to school for my Masters in Public Health. While working on my Masters, I did a one-year health communications fellowship at the National Cancer Institute in Bethesda, Maryland. After graduating with my MPH, I was thrilled to join the Foundation in a position that combines all of my experiences and allows me to grow professionally and personally.

OUTSIDE OF THE OFFICE:  I love to spend time with my husband, whether it be hiking, watching a movie, or traveling. We went to Thailand last year for our honeymoon and I’m looking forward to our next adventure!

I ACT WITH LOVE BECAUSE… I believe in the Foundation’s mission and our programs. Specifically, I see the Army of Women making an impact within the research community on a daily basis.

A FUTURE WITHOUT BREAST CANCER LOOKS LIKE:  A future with MORE – more sunrises, more sunsets, more picnics on the beach, more ice cream, more time spent with loved ones…more of whatever makes you happy. 

NAME: Christine Fischetti

POSITION: Epidemiology Research Manager

HI! I’M CHRISTINE.  I manage the Health of Women Study at the Dr. Susan Love Research Foundation. I received my Masters of Public Health degree in Epidemiology and throughout my education and professional career, I have learned a lot about different types of epidemiological studies and data analysis and am now able to apply that knowledge to manage the Health of Women Study.

OUTSIDE OF THE OFFICE: I love to cook and explore new restaurants!

I ACT WITH LOVE BECAUSE… We are focused on finding the cause of breast cancer instead of finding better ways to detect it or treat it. If the ultimate goal is prevention, then we need to understand how the disease starts in the first place. I think that is what sets us apart as an organization and is something that I really value about my work here.

A FUTURE WITHOUT BREAST  CANCER IS: bright and hopeful because future generations of women will not have to face this disease.

While the big news on immunological drugs did not include any breast cancer treatments— several intriguing breast cancer stories did emerge from this annual meeting.

The study I found most interesting showed that more than one in five African-American women with breast cancer had one of the 18 inherited genetic mutations known to increase breast cancer risk.  Conducted by researchers at the Cancer Risk Clinic at the University of Chicago, the study found that 56 (22%) of the 249 African-American women they studied had at least one inherited mutation.  Most—46 of the 56—had a BRCA 1 or a BRCA2 genetic mutation; the others had less common mutations. As expected, the mutations were more likely to be found in women with triple-negative breast cancer, women under 45, women with bilateral breast cancer, and women with a strong family history.

This study not only suggests that women with these characteristics should consider being tested for a BRCA genetic mutation, but also may explain why African-American women tend to be diagnosed at a younger age and have a more aggressive type of breast cancer.

Another interesting study with implications for women with breast cancer was the aTTom trial, which looked at whether 10 years of tamoxifen is better than five. This study of almost 7,000 women in the UK showed that more is better, reducing both breast cancer recurrence and mortality by 25 percent. As with past studies, this one also found that tamoxifen increases the risk of uterine cancer. The researchers estimated that 10 years of tamoxifen would prevent 30 breast cancer deaths for every uterine cancer death it caused, suggesting the benefits outweighed the risks.

This finding confirms the findings from the Atlas trial of 12,000 women, which was reported six months ago. Since we are now starting to see late recurrences in women with hormone positive cancers, this approach may well make sense. Neither of these studies looked at aromatase inhibitors, which were not as commonly used 10 years ago when these studies started, and it has not yet been shown that 10 years of an aromatase inhibitor would be better than five—even though women have already begun to stay on these drugs longer as well.

Another confirmatory study looked at whether it is necessary to do a full axillary dissection in addition to radiation therapy if a non-palpable node found during a sentinel node biopsy turns out to be positive. This study confirmed a previous one showing that radiation was just as good as the axillary dissection, and resulted in fewer side effects such as lymphedema and problems with arm mobility.

WALK WITH LOVE totals are in, and together we have raised more than $196,000! We are still buzzing from the positive energy and support felt by everyone who contributed to making this event possible.  We were thrilled to have been in the great company of more than 711 on-site participants and 114 Virtual Participants joining us from more than 28 states nationwide.  Our biggest and best walk to date!

“Over the years, Walk with Love participants have helped raise thousands of dollars for innovative groundbreaking research that focuses on finding the causes and ways to prevent breast cancer.  This is a great opportunity for supporters nationwide to support this important mission.” – Dr. Susan Love, President of the Dr. Susan Love Research Foundation

Walk with Love could not have been possible without the support of our event chairs and incredible volunteers. Thank you for your time, energy, and dedication!

We would also like to thank Lifetime, Ford Warriors in Pink, Merrill Lynch, On Assignment, HUB International, City National Bank, and Prudential California Realty for their donations that made Walk with Love 2013 possible. Thanks to the generous support of these sponsors, each and every one of your donations will support the Health of Women Study, a long-term cohort study of breast cancer tracking the health of women via online questionnaires.  This new model for 21st century research was designed to identify new risk factors for breast cancer and factors that contribute to long term survivorship. Act with Love and join this cutting edge study at www.healthofwomenstudy.org.

We would also like to thank our in-kind sponsors:  Robeks Juice, Pump Station and Nurtury, AquaHydrate, Coffee Bean & Tea Leaf, Yogis Anonymous, Your Neighborhood Dance Studio, Kinetic Cycling, Superfeet, Gotta Have S’mores, Yogurt Shoppe, Somersault Snacks, More Music DJ Paolo, Pacific Palisades Recreation Center, Panera Bread, Sam Rubin, Richmond Knight, and Karee Maxson.

 Be sure to get a good look at all the fun, by checking out our album on Facebook.

Participants – we’d love to hear from you!  Fill out a short survey to help us make next year’s event even better.  Give us your feedback HERE.

 Mark your Calendars Now:

Walk with Love 2014:  Sunday, May 18th, 2014!

Just in time for our sixth annual Walk with Love, we are pleased to introduce you to our newest corporate partner, BuyStand, an online “name-your-price” retailer of high quality outdoor, athletic and lifestyle products.  In honor of our partnership, BuyStand has created the Act with Love Collection, a portfolio of apparel, accessories and gear aimed at active women like you.

BuyStand is committed to empowering people to get out and do what they love to do, whether it’s walking, running, hiking, yoga, or a family adventure holiday.  Since exercise is one of the few known methods of preventing breast cancer, we are delighted to welcome BuyStand as our partner.

Through the end of 2013, BuyStand will donate $1 for every new user registering through the Dr. Susan Love Research Foundation’s Act with Love link (http://bit.ly/15O1zGQ).  Plus, they will donate 50% of their profits for every item purchased from the flagship Act with Love Collection, and another 10% for any item purchased from other collections by a registered DSLRF follower.  Register today to check out the Collection’s cool sunglasses, versatile apparel and the latest in athletic footwear.

BuyStand’s business philosophy is to bring power to the consumer by partnering with top-shelf active lifestyle brands who are willing to offer discounts throughout the year to motivated online buyers.  Carrying hundreds of top brands like UGG, Patagonia, and The North Face, BuyStand.com features over 65,000 products to price-savvy fans of fun and fitness.

Remember, in addition to donations on purchases, BuyStand will donate $1 for every new user registered via our Act with Love link (http://bit.ly/15O1zGQ), so share this post with your family and friends to let them in on the action.

When it came to caring for my daughter – who was 4 ¾ at the time of my diagnosis – initially I felt lost and overwhelmed. As much as I wish this experience had only happened to me and that I could have shielded my family from the pain, the reality is that cancer does not happen in isolation. Cancer happens within the ecosystem of family, friends and community.

The Silver Lining was that my clinical experience as a pediatric nurse combined with my masters’ degrees in child development and social work prepared me to help my young daughter through my diagnosis, treatment and recovery.

Informed by my clinical and personal experiences, I firmly believe that including children in the disease trajectory, from the time of diagnosis, though emotionally burdensome and painful, is ultimately the greatest gift that parents can give them.

The Silver Lining is that now that I am in this period that I refer to as After. I am now focused on prevention and giving back. I want my daughter to live in a world in which breast cancer is a distant memory. We talk about things that we can do to contribute to cancer prevention, everything from eating healthily and exercising to contributing to research initiatives, either literally or financially.

Signing up to be a member of the Dr. Susan Love Research Foundation’s Love/Avon Army of Women is one way that I am giving back. The goal of the Army of Women is to recruit one million women of all ages and ethnicities, including breast cancer survivors and those who have never had breast cancer to participate in groundbreaking research studies aimed at determining the causes of breast cancer – and how to prevent it once and for ALL.

One of the things that I remember so vividly from my work in academic medical centers (where research is happening in virtually every office and the topic of many if not most meetings!) is that the recruitment of participants is very challenging. Most people don’t realize this. The Silver Lining is that The Army of Women is bridging this gap AND challenging the scientific community to expand its current focus to include breast cancer prevention research conducted on healthy women.

Please join me in supporting the Dr. Susan Love Research Foundation by inviting five of your friends to learn more about the Army of Women and to sign up today.  And if you can, consider making a donation as well in honor of your mother, your sister, your daughter and the 813 women diagnosed with breast cancer every day.

Motherhood is the most spectacular Silver Lining in the world. Thanks to my daughter, each and every day, I am reminded of the beauty of life and the precious gift that is motherhood. As an Army of Women volunteer, I know that I am helping to create a world in which breast cancer no longer exists.

I have listened to my mom tell me many things (and I have, on one or two occasions, even not listened to what she has said), but I never expected to hear the words that came out of her mouth in December of 2011. It was two weeks before Christmas when I sat down in front of the fireplace and she faced me, saying, “I have breast cancer.”

The air thickened with words I couldn’t say, questions I wouldn’t ask. What does this mean? Will my mom have chemo? Will she lose her hair? Her strength?

Her life…?

For the month before this, my mom underwent preliminary tests for an ache she had on her breast. She swore my step-dad and me to secrecy, and we couldn’t even tell other family members about these tests. My mom didn’t want anybody to assume the worst.

However, when the results came back and they confirmed she had breast cancer, it was time for us to break our silence. As hard as we had worked to keep her affliction a secret, we now endeavored to spread the word. We had forty-eight hours to tell friends and family because only two days after she was officially diagnosed, my mom was scheduled to have a mastectomy.

My mom, as usual, had been right: when we shared the news, people were shocked. Yet at the same time, I was humbled by the amount of humanity displayed in our family, friends, and people in the community, wanting to help. Obviously, my mom was important to me, but seeing a similar compassion towards her from others was amazing. Awe-inspiring. We asked everyone to pray for her and her doctors, to think good thoughts, and to send “positive vibes” for her operation and recovery. As they encouraged me and prayed for my mom, it became clear that—of course—she meant a lot to them as well. Sure, she was my mother, but she was also their friend, boss, and loved-one.

And though I slowly realized this, my perspective would still, at times, narrow and focus—not on my mom—but on me. I tried to justify my egocentric behavior by realizing that, after all, it was my mother this happened to and I was her child.  I could not help but think about how her surgery affected me. Part of my mom was gone. Forever. The part that had fed me and nourished me in my first months of life—completely removed. In a way, it felt like my foundation had been stripped from me.

But when we came home from the hospital, helped my mom upstairs into bed, and gingerly tucked the covers around her bandage and ice pack, I had to stop myself—had to cut away my own cancer of lamentation. I was bemoaning what used to be, yet I had so much to rejoice about at that moment.

Since her surgery, my mom has recovered completely with no need for chemo. We have continued to celebrate her miracle of health and healing, and through this, my mom has reminded me to keep a strong faith in what is good and share it often with others.

With renewed vitality in the past year, my mom has passionately shared her story with friends and family, and has even been able to share it with strangers. Her 32 year-old business, Holly Yashi Jewelry, is a passionate partner of the Dr. Susan Love Research Foundation and has created Special Edition Pink Ribbon earrings, necklaces, and pins whose profits aid in funding their prevention focused research programs. Every sale contributes $5.00 toward the Foundation to support its mission to end this disease within our lifetime.  Together, we are proudly investing in a future without breast cancer.

I am so grateful to have my mom as a living example of a woman with a strong and appreciative heart—for God, for others, and for life! Her involvement with the Dr. Susan Love Research Foundation is just one example where I have seen my mom use her experience to encourage and support other women who have been touched by this disease. My mom’s experience adjusted my perspective on how I should be using the resources I have to make a lasting and positive impact for others. It yet again reminds me to listen to my mother—and hear how her ACTIONS speak louder than words.

Please join us and make your investment today by purchasing an item from Holly Yashi’s Special Edition Collection or making a general donation today!

- Heather Quarles

Daughter of Holly Yashi Jewelry Co-Founder, Holly Hosterman, and proud supporter of the Dr. Susan Love Research Foundation