Generations Magazine recognizes Breast Cancer Awareness Month with a resource article about women affected by this disease. Their stories, the education and research that Susan G. Komen Breast Cancer Foundation® provides, and new treatment trends available in Hawai‘i will encourage you to become part of the More Than Pink movement. By 2026, Komen Hawaii® wants to reduce the annual number of breast cancer deaths by 50 percent and we can help. The two most significant risk factors for breast cancer are being female and aging. So, learning about breast cancer detection, treatment, and support options and passing on the information to families and neighbors helps senior women seek diagnosis and rapid treatment.
Susan G. Komen Breast Cancer Foundation in Hawai‘i
Susan G. Komen Breast Cancer Foundation was started in 1987 by Nancy G. Brinker, who promised her sister, Suzy, that she would end breast cancer disease. It grew into a multinational charity that funds more breast cancer research than any other private charity. Our local branch, Komen Hawaii, raises over $200,000 annually, with 75 percent going to local nonprofits and agencies for breast cancer education, diagnostic screening and treatment support services — the rest to national breast cancer research.
The Komen Hawaii annual fundraising event, Race for the Cure,® is a 5K run and 1-mile walk in Kapi‘olani Park on Sunday, Oct. 13, 2019. Everyone who wants to end this disease can participate, volunteer or make a donation. Coworkers from YMCA classes, Zippy’s morning coffee friends, Thursday mahjong players and church choir members can band together to support a brave cancer patient, survivor or caregiver running or walking. Many teams just raise money. The run is all about sticking together. The slogan “More Than Pink” includes all persons fighting breast cancer —
survivors, meta-thrivers, previvors, men with breast cancer, caregivers and families.
Surviving Breast Cancer is Not for Sissies
The Hawaii Race for the Cure began in 1995, only months after Vivian Murray and her husband noticed a lump in her breast. Two weeks later, she underwent a double mastectomy. Now Vivian is a 25-year cancer-free breast cancer survivor. She was an avid runner and two weeks after her surgery, she wrapped her chest for extra support so she could run a 5K at Kamehameha Schools Kapalama Campus — a race organized to support breast cancer patients.
“There were only a few of us for the first race; we ran through downtown and Chinatown,” says Vivian. “We talked story as we gathered for the survivor group photo. Technically, I didn’t know if I was going to survive, but I was glad I participated because I met another woman who was a 20-year survivor and she gave me hope. Somehow, I encouraged others, as well. The next year, we ran at Kapi‘olani Park. Each year, it brings us together in a happy, healthy environment where we can hang out with others who understand. Really, only other cancer patients can appreciate what you have gone through.”
“My neighbor reached out, too, suggesting which clothes were easy to get on and off while chest muscles were healing, and how to a golf club for support when getting out of bed so as not to put pressure on the surgical area,” says Vivian.
“She even opened her shirt to show me her chest and the kind of healing I could expect. For years, my husband had trouble looking at my scars, but he assured me that he married the ‘whole package.’ Not all women are so fortunate; some suffer divorce after their operation.”
Vivian saw that Komen Hawaii needed more help, so she and a coworker from Kamehameha Schools volunteered to work the event. Komen Hawaii’s strict cost control practices impressed her to expand her commitment for the next eight years — first as race director and later as chair.
“They pinch pennies to get as much money as possible to those helping breast cancer patients,” says Vivian. “Even since I stepped down, I still run the 5K. Not all participants run or walk; some just come to cheer on others. We even have a
Hiamoe Division that allows you to sleep in. So long as you pay the fee, we send you your T-shirt!
“Undergoing treatment or helping a loved one affected by breast cancer is a team sport,” says Vivian. “And Race for the Cure is a great place to connect with others who understand the breast cancer journey — men, women and caregivers all. It can be a happy break from your treatment schedule. Together we make a difference.”
A difference, indeed! In 2017-18, Komen Hawaii issued over $200,000 in local grants to Castle Medical Center, Kalihi-Pa¯lama Health Center, Kokua Kalihi Valley Comprehensive Services, La¯na‘i Community Health Center, Maui Memorial Medical Center Foundation and Waimanalo Health Center to fund public breast cancer education, screening and treatment assistance. This year, the University of Hawai‘i Cancer Center received a grant to develop a community awareness campaign to dispel myths about clinical trials for new cancer drugs. The Susan G. Komen Breast Cancer Foundation funds more breast cancer research than any other private institution in the U.S.
8 Warning Signs of Breast Cancer
The Susan G. Komen Breast Cancer Foundation promotes early detection and treatment of breast cancer. It is important to know your normal. If you have any of these signs, see your healthcare provider or visit a hospital clinic.
- Lump, hard knot inside the breast or underarm areas
- Swelling, warmth, redness or darkening
- Change in size or shape
- Dimpling or puckering of the skin
- Itchy, scaly sore or rash on the nipple
- Pulling or stretching in nipple or breast
- Nipple discharge that starts suddenly
- New pain in one spot that doesn’t go away
“Undergoing treatment or helping a loved one affected by breast cancer is a team sport, and Race for the Cure is a great place to connect with others who understand the breast cancer journey.”
– Vivian Murray
More Than Pink Supports Meta-Thrivers
In 2019, over 268,000 new cases of invasive breast cancer are expected to be diagnosed in the U.S.
An estimated 42,000 breast cancer patients will die, but some will thrive in a “new normal.”
Julia Hughes was diagnosed with aggressive stage IV metastatic breast cancer. Metastatic tumors shed cells that travel through the lymph system to invade at “distant sites.” Julia lives her new normal by receiving monthly rounds of Kadcyla® ado-trastuzumab emtansine — chemo bound to an antibody that seeks out tumor cells — and the support of her husband, sons and church family.
“In July 2014, after a routine checkup, my OB/ GYN told me to come back in six months,” says Julia. “By then, they identified several areas of stage II breast cancer and started chemo. After six rounds, the tumor evolved to metastatic stage IV. I panicked. My doctor told me to get my affairs in order and look into hospice.
“Six months to live! I was teaching third and fourth grades in ‘Aiea, and my two boys were still in school! I did not want to give up. “This June was my 51st round of Kadcyla — I am alive,” says Julia. “I aim to see my sons graduate from Harvard and UH West O‘ahu. I still have inoperable metastases in my spine, but chemo and God’s grace are keeping them at bay. I don’t call myself a ‘meta-thriver’ because cancer is not who I am — it’s just a part of my new life.”
One week each month, Julia undergoes chemo treatment, followed by a hard week of recovery. The other two weeks, she volunteers at ‘Ohana Christian Church for Adopt-A-Class outreach, which supports six Ewa Beach public schools. She recently served as PTSA president for Campbell School.
Julia works hard to maintain her new normal. You cannot help but be impressed by Julia’s joyful attitude and energy. She recommends Christine Miserandino’s Spoon Theory website (www.ButYouDontLookSick.com). Christine lives with lupus and encourages patients with cancer and chronic disease to ride the waves of energy. On some days, personal hygiene will eat up all your strength. On other days, you will feel strong enough to go to the store. Both days are considered to be successful.
“Cancer rerouted me and robbed me of my plans for my life,” says Julia. “Everyone’s journey is unique and everyone’s ‘cancer story’ is different. If you want to know how I am or how someone with cancer is doing, just ask.”
“I don’t want people to say ‘Why aren’t you done with chemo yet?’ or ‘You’ll be cured soon’ or ‘Try this or try that’ or ‘My aunt died from cancer but you are doing good,’ etc.,” Julia says. “I do want people to offer me grace when I have a hard time continuing a task or try to give more energy than I have. Treat everyone with kindness, not just cancer patients. And yes, I do appreciate when my friends and family just accept me for me. If you have friends living with cancer, I advise you to treat them normally, but understand the deliberate effort they are making to balance their energies just to spend a little time with you.”
Julia says, “Just because I exercise my sense of humor does not change the fact that 24/7, I am vigilant for any change in my disease. Tomorrow is not guaranteed. My dad survived Vietnam and never grumbled. He worked hard and always had a joke for us kids. Like him, I am a happy person and a thinker.”
“A couple of years ago, I did the Race for the Cure walk,” Julia says. “It was fun, but I am not a survivor. I want to be a survivor, but… This year, More Than Pink brings together all breast cancer patients. Our battles are unique and early diagnosis didn’t work for some of us.
“More Than Pink has focuses the fight against breast cancer on new treatment regimens that offer hope,” Julia says. “If you ever question if God is listening, look at how he answered my prayers over four years ago! When I die, I hope He will say, ‘Well done, my faithful servant.’”
New Clinical Trials May Be Your Best Option
“Today’s chemotherapy drugs were used in clinical trials 20 years ago,” says Dr. Jessica Rhea, medical director of the Komen Hawaii Education Committee and director of Clinical Trials at University of Hawai’i Cancer Center. “The standard of care for cancer today is to get into to a clinical trial if one is appropriate for your type of cancer and your medical profile.”
ʻShe and her staff encourage cancer patients and their families to visit www. uhcancercenter.org for the latest information. If you have doubts, click the red video button at the top, right corner of the homepage and watch YouTube videos about five myths that keep us from joining clinical trials. New trials may treat early or late disease stages, rarely use placebos, and are designed for your safety.
New Advancements in Cancer Treatments
Biopsies now include tumor cell marker testing that identifies cancer cell antigens and receptors, targets for immune therapies and tests to monitor treatments. The trend is to customize treatment to increase effectiveness. Chemo combinations or “cocktails” may work better in any stage of breast cancer when combined with new drugs, antibodies and immune modulators like these:
♦ New tyrosine kinase inhibitors weaken cancer cells
♦ PARP inhibitors improve the effectiveness of chemotherapeutics
♦ CDK 4/6 inhibitors interrupt the multiplication of cancer cells
♦ PI3 kinase inhibitors make it harder for tumors to grow
♦ Antibody-targeted chemotherapy delivers chemo drugs directly to tumor cells
♦ New anti-angiogenesis drugs block blood vessel growth in tumors
♦ “Biosimilar” generic-type cancer drugs reduce the cost of therapy
♦ Immune therapeutic agents • New tumor monitoring agents
Previvors Take Action Against Genetic Odds
Anaeliz “Mina” Colon was in high school when her mother, in her early 30s, was diagnosed with breast cancer.
“Genetic testing was very new,” says Mina. “But because my grandma also had breast cancer, the doctors decided to test mom. She was positive for BRCA2, a gene mutation associated with increased risk of developing breast cancer. I wanted to be tested right away, but my parents counseled me to wait.
“The summer after I graduated from college, I met with a genetic counselor and underwent testing. My risk of getting breast cancer was 87 percent, too. I’m a very straight-line thinker, but the emotional reality of carrying my mother’s cancer genes shook me. An intense emotional inner dialogue finally led back to logical thought. I didn’t take action for several weeks, but eventually took the ultimate curative step and had a prophylactic double mastectomy.
“After the breast tissue was removed, the doctor inserted expanders in my chest to receive reconstructive implants,” Mina says. “When the doctor adds fluid to the bag, it swells gradually to stretch the skin and accept the implant. That takes a while, and post-op recovery spans three to four weeks. The experience was emotional, but I could not feel luckier now that I had this option.
“Support systems are of utmost importance with anyone having a mastectomy. My family was an integral part of my experience — mom, dad, grandparents, uncles and aunties. My uncle in Hawai‘i helped me so much by encouraging me to move here.
“With my family’s and my boyfriend’s support, I didn’t care what the rest of the world thought; but the one emotional hurdle was my disappointment that I would not be able to breastfeed my children,” says Mina. “Mom and Dad raised me always to put logic first, but I still needed support from others who actually had gone through the same procedure. I wanted to talk with women my age who had preventative cancer surgery — about body image, having sex with my boyfriend, freezing my eggs, etc.
“My need to interact led me to start my own website — www.ThisIsMySelfie.com. It worked. Followers meet in person once a month. We meet people with similar experiences and want to find others who understand — we are siloed together.
“My journey is not over; I had a scare this year. And some days, I hold a ‘Why me?’ pity party. The biggest difficulty with knowing you carry breast cancer genes is the hard decision to go ‘all in.’ Faith was not a part of my journey; my family gave me confidence and support and helped me come to peace within.
“Being a previvor can be lonely. I don’t bring it up much with other breast cancer patients — maybe it’s the ‘guilt’ of knowing others are dying. I can’t feel sorry for myself when others are going through massive treatments. I think the best rule in the breast cancer community is never to compare stories.
“The uniqueness of every person affected by breast cancer is why Komen Hawaii is so vital,” says Mina. “They create a space that nurtures all persons affected by breast cancer, no matter how they may identify themselves. We are breast cancer warriors — everyone.”
Celebrate Breast Cancer month by updating your knowledge about breast cancer signs and treatments. Volunteer or make a donation to support the More Than Pink fight against breast cancer and encourage your friends and family members who are fighting this disease to participate in the Race for the Cure. Come out with your grandchildren to support the cause. We can make a difference.
SUSAN G. KOMEN BREAST CANCER FOUNDATION®
Komen Hawaii funds education, treatment assistance and connections for all who are affected by breast cancer — supporters, caregivers, survivors, metathrivers, women of all ages and men with breast cancer.
Komen also offers financial assistance to under-insured and low-income breast cancer patients to help with the cost of treatments and prescription medications. They advocate for breast cancer patients on a national level and seek to reduce deaths by 50 percent by 2026.
Besides tumor markers and new drugs, mutated genes have been discovered that predispose women to develop breast cancer. These genes are passed down, accounting for cancer clusters within families. Now, genetic counseling is available to young women with parents and grandparents who fought breast cancer. Genes associated with breast cancer are BRAC1, BRAC2, CHEK2, ATM, PALB2, BARD1, RAD51D and MSH6.
Visit www.komenhawaii.org to donate, register as an individual, join a team, start or re-form your own team.
Race Day Schedule
4:30am – Shuttle run from Parking Area
10:30am & back from Kapi‘olani Park
5–6am Race Registration & Packet Pick-up
6am Welcome / Group Warm-up
7am RACE START (5K run/walk)
7:15am RACE START (one mile fun walk)
7:45am Stage Program Begins; Entertainment, Expo, Awards Ceremony, Giveaways, later in the morning, Survivor Photo