The Gift that Keeps on Giving.... Yourself!
The holiday season and fast approaching end of another year is often a time of reflection. This is especially true for anyone who has faced a life altering event like breast cancer. It’s wonderful to get caught up in the festivities and the life-affirming continuity this time of year provides. It’s also a great opportunity to contemplate ways to give back. There are some presents that don’t even need wrapping. The gift of self definitely falls into this category.
In this article, we are going to share the stories of three breast cancer survivors who decided one way to make some sense of their own diagnosis was to give of themselves. There are many ways to pay it forward. Our three women decided to become involved with the Army of Women. We trust their stories will give you an opportunity to think about ways in which you or someone you know might be able to help in some small way to eventually find the cure(s) for breast cancer. We all feel pretty insignificant when facing the battle alone, but each of us really can make a huge difference in our own lives and the lives of others when we stand together.
Sue Beem is a California native born in Los Angeles in 1948. This baby boomer began her career as a registered nurse, but quickly realized she not only wanted to learn more, she wanted to be able to do more, so with her husband’s encouragement and support she went to medical school. After graduation, she settled in Long Beach working as a Permanente physician, first at their Long Beach medical offices, and later in Gardena.
Sue’s story begins, “During my training I did not take any rotations in oncology, and most of my patients with breast cancer disappeared into the capable hands of their surgeons and oncologists, and I would not know about their journeys until all was over, so I knew very little about breast cancer. In October of 2002, at a time when I was finding the volume of my practice overwhelming, and my personal life more challenging than usual, I was diagnosed with breast cancer. What was thought on ultrasound to be a 1 cm. tumor turned out to be 2.5 cm, and was grade 3. My sentinel node biopsy was negative for tumor spread, but I was offered chemotherapy, and decided to take it because of the grade of my tumor.
“I probably had been told that chemotherapy had been reported to affect mental abilities, but how severely this could impact me was not understood. At that time, Chemo Brain was not recognized as a physical change in the brain, as it is now. I also had no idea how painful a neuropathy could be. My neuropathy in my dominant hand was a combo from chemotherapy and arthritic changes in my neck. I also developed lymphedema of the breast.
“After treatment,” she continues, “I realized the long hours, lack of exercise and improper eating because of the time spent in the office, was too unhealthy for me. Fortunately, I was able to take an early retirement (plunge into – is more like what I did). Retirement for me felt like a major loss of role and relationships. During the years after retirement, I began following medical literature on breast cancer. In 2009, I came across an announcement about the Army of Women, and when I explored the website, I thought it was an amazing, creative program – the only major breast cancer program I found that was aimed at finding the cause of the cancers and trying to prevent it. Upon joining, I immediately enrolled in one long term study based on written surveys.
“Because of the number of years since my treatment, many of the studies do not fit me, but I tell all my female friends, my support group, and relatives about the AOW and why I think it is important. Last year I decided to join the Army of Women Foot Soldiers program and help in recruiting others to join the AOW. Then this year, despite my history of word-finding difficulties, I made the decision to become a speaker for the Army of Women because I strongly feel that this unique program is a major key in speeding up research that is so desperately needed!”
Annemarie Ciccarella hails from New York City, although as she points out, “The ‘purists’ don’t think of the outer boroughs as the City.” Annemarie’s family moved to Long Island when she was in high school. This mother of two grown children was thriving on her fast paced, high level accounting and problem-solving career – and loving every minute of the insanity – because she and her husband had found the cure for the craziness – long weekends away together at least once a month. At just about the time she was enjoying restful and romantic getaways, she discovered something she couldn’t escape – breast cancer.
“In April of 2006, I had my annual routine mammography,” says Ciccarella. “I had begun screening at 30 because my mom had breast cancer in her late 40s, so I was being watched. I remember the very first indication something was wrong. The radiologist always sends a letter after the visit, and I was so unconcerned about the mammogram, I didn’t even glance at the envelope for several hours. When I finally ripped the thing open I began to toss it aside, since it appeared like the normal form letter. The paper is in midair and my brain registered weird words. ‘Density’ and the really scary one ‘calcifications’ – and oh boy – I had a total meltdown. By the end of the week I was back in the same radiologist’s office having additional images of what were two separate issues within the same breast. Ultimately, and I still remember this with such clarity, the doctor took my hand and kindly said, ‘You will need to take these films to a breast surgeon. I’m pretty sure they are going to want to remove those things to make sure they are not (and then, there it was... the first mention of that word) cancer.’ I lost my mind. I was in my 40s just like mom, and I was petrified.”
Annemarie was diagnosed with invasive lobular carcinoma. After much soul searching she opted for a bilateral mastectomy. Her BRCA testing results were considered inconclusive, so she felt compelled to do what she could to stay healthy.
“In August of 2007 my mom was diagnosed with a new primary breast cancer (20 years after her first diagnosis!) In 2010, my youngest sister was diagnosed with breast cancer too,” shares Annemarie, “and my other sister, for all intents and purposes was not diagnosed with breast cancer because of an accidentally well-timed mammogram. Her pathology showed clear indications of cell changes that would likely have resulted in a cancer diagnosis later.
“Part of the reason I took on an active role in the Army of Women was because of the Sister Study. When I was researching in 2006 and found information about the Sister Study, I sent it to both of my sisters. Neither of them chose to participate, and in hindsight, given what happened to them, I think being involved would have been quite valuable. I was impressed with how quickly the Army of Women was able to help get the Sister Study filled. I took on the role of New York Troop Organizer and my mom became my number one cheerleader. Not only did she join, she sends out mass emails to all of her friends and family members every time I do anything. My sisters have joined and when my daughter moves back she is going to join as well. She is the one who will derive the greatest benefit from the research and AOW support! The goal is prevention and she is at a very high risk for developing breast cancer.
“I’m constantly trying to get people to understand that survive and cure are NOT the same thing. I want to be cured. I want the research to find the answers that will allow my daughter to be vaccinated or whatever has to happen so that there is no chance of her developing breast cancer!”
Marlene Cunningham is a Chicago native who has called Virginia, Ohio, Florida and Alabama home before landing at her current base in Southern California. Marlene’s mother was just 27 years old at her first diagnosis, so Marlene knew it was likely her mother had the BRCA gene mutation. She also felt this meant she probably did as well.
“I asked my OB/GYN to test me for it,” says Marlene. “She said my mom should get tested first. With some hesitation, she finally did. I was 39 years old at the time. When she found out she was positive for BRCA1, I knew I would have it even though my odds were 50/50. I got tested immediately and found out I carried the BRCA1 gene mutation as well. I was devastated. I felt like I was just hit by a ton of bricks. I had two ticking time bombs on me. I knew right away I was going to have a double mastectomy to remove them as quickly as possible.”
She continues, “I started doing consultations with breast surgeons and plastic surgeons immediately in Birmingham to start my journey on removing my breasts. The genetic counselor also explained to me that it would be best to remove my ovaries as well since the gene carries an increased chance of ovarian cancer. I did not want to schedule my prophylactic double mastectomy until we were moved into our new home. Unfortunately, that took 6 months from the time we moved to California. A few weeks after we moved in, I had my double mastectomy with breast reconstruction (step one of two). It was very painful and draining.
“A few days after I got home from the hospital, I got a phone call from my breast surgeon. She stated my pathology came back and that they found breast cancer in the right breast. I had invasive ductal carcinoma, triple negative, very common for someone with the BRCA1 gene mutation. I was in shock to say the very least. I’d had a mammogram and MRI within the year and both were clear. I started to cry immediately and didn't hear a word she said after ‘cancer.’ What was my next step now, what about my girls, what about my life?? The questions and scenarios in my head were endless. Not only was I recovering from a major surgery with drains coming out of my body, in pain, and exhausted, now I had to go about finding an oncologist to see what my next course of action would be. My whole life had changed in one phone call.
“I don't actually remember how I became involved with the Army of Women. It was either from seeing someone talk about it on the Today Show or an article I read in Prevention magazine. The Army of Women is a wonderful way to get research done in this field by reaching out to so many different people.
“In addition to my involvement with The AOW, I have been involved with some studies through Cedars Sinai, such as the hereditary breast cancer study and an ovarian cancer tumor marker study. I had to fill out questionnaires for both and give blood for the ovarian study. Once I had my ovaries removed, I had to finish a final questionnaire for the study. I have also done many surveys over the phone for various research universities and companies that I had signed up for through different FORCE conferences or meetings (Facing Our Risk of Cancer Empowered).
“I truly believe that it is my duty to help further research and help find a way to prevent breast cancer for my children and their generation. I talk about my story at support meetings to help other women. I have been in research studies and I try to volunteer when I can. I feel that giving back helps me heal and feel empowered. Cancer did not defeat me, it actually made me stronger.”
When asked why the Army of Women is so crucial to finding the cures for breast cancer, Dr. Susan Love points out, “Currently, the vast majority of resources for research are focused on early detection and treatment of breast cancer. More resources need to be spent on determining the cause of breast cancer, which isn’t just going to take more research, it’s going to take a different type of research. The Army of Women is jumpstarting this type of research providing quick access to a diverse group of women for various studies. It is a groundbreaking initiative that connects breast cancer researchers with real women who are willing to participate in a wide variety of research studies aimed at determining the causes of breast cancer, and how to prevent it.”
In conclusion Dr. Love reminds us, “The Army of Women is looking for women (and men!) of all ages and ethnicities, whether you have had breast cancer or not to sign up at www.armyofwomen.org! Everyone over the age of 18 is welcomed and encouraged to join the Army of Women today! It is critical that the Army of Women represent all kinds of women of all sizes, shapes, ages, ethnicities, lifestyles, and geographic areas. This is the only way we will truly learn about this disease. We depend on our Army of Women participants to help us recruit a wide diversity of women so that the data from the studies will apply to all of us.
“Although all are welcomed to join, not every member of the Army of Women will qualify for every study issued through this initiative. You are in control and are able to determine which, if any, research studies you would like to be involved in. If you do not qualify for a study, you can still help by forwarding the Army of Women study e-mails to friends and family within your personal network. You never know who might qualify and be the ticket to getting us one step further to finding the cause of breast cancer.”
Editor’s Note: Jenna Johnston, Marketing and Research Assistant for the Susan Love Research Foundation wanted to be sure to point out that the Army of Women is not involved in any clinical trials and does not use that terminology when talking about their studies. All studies for which the Army of Women is recruiting are breast cancer research studies. We are particularly grateful to Ms. Johnston for her help in obtaining interviews for this article.
For individuals who are interested in finding out about current clinical trials, here are a couple of links: http://www.cancer.gov/clinicaltrials/search/results?protocolsearchid=6348845&vers=1
https://www.breastcancertrials.org/bct_nation/home.seam
December, 2011
