The Importance of Knowing
A chapter on breast health, breast cancer and navigating a path to wellness
The statistics are staggering. Breast cancer will invade the bodies of one in eight women over the course of their lives.
In this èBella èXtra, we focus on strikingly progressive treatments and the vital role a breast cancer navigator plays in the lives of patients battling the disease.
We share the story of one breast cancer survivor, a young, urban executive whose diagnosis led her back home and on a path toward wellness and the greater good.
Beauty and fashion can have profoundly positive impacts — both practical and emotional — on the daily lives of women enduring the effects of cancer treatment. Two breast cancer advocates and innovators reveal how important physical appearance really is to women in the most uncertain times of their lives.
To top it off, a local breast cancer specialist advocates healthy lifestyles for thwarting the threat, and Blue Zones reveals secrets to resilience and well-being, helping people live longer, healthier and happier lives.
Be èXtra informed. Be well.
Beauty Behind the Beast
Survey reveals how body image and self-esteem impact recovery for women
There are more than 8 million women in the United States who have received life-altering cancer diagnoses and are currently undergoing treatment or in survivorship, according to data from the American Cancer Society.
Cancer Be Glammed and Wrapped in Love, two companies born out of personal experiences with cancer, conducted a unique survey to identify the impact of emotional and lifestyle challenges women face from the physical traumas of surgery and treatment.
The medical community refers to these as the psychosocial effects of cancer, and they can wreak havoc on a woman’s sense of self, body acceptance and self-esteem.
In total, 876 women — ages 18 to over 75, diagnosed with various forms of cancer — participated in the Recovery Life & Style Survey. Close to 50% of women rated support for body image issues and improved self-esteem as extremely important to overall recovery, ranking it a “10” on a scale from one to 10. An overwhelming 82% ranked this type of support as an “8” or higher.
“We lose part of our existing identity when undergoing cancer treatment and have to redefine ourselves physically and emotionally. Being able to be somewhat fashionable in the middle of that helps us feel less isolated and more included in the world’s beauty,” one survey respondent said.
The most common form of treatment women surveyed received was surgery, followed by chemotherapy and radiation. Many of the women said they had multiple forms of treatment, each with its own unique recovery challenges.
The top five post-operative difficulties women ranked as significant (from most to least) were limited arm and leg mobility, showering, getting dressed (need for easy-access clothing), dealing with surgical site drains and scar coverage.
Of the nearly 700 women who underwent chemotherapy, 89% ranked hair loss, including lashes and eyebrows, as the most devastating, visible sign of cancer. Following that, women identified coping with nail problems, skin issues and weight loss or gain as their most common struggles.
“I was totally unprepared for the appearance-related side effects of surgery and treatment,” said Lisa Lurie, a breast cancer survivor and co-founder of Cancer Be Glammed. “I underwent a double mastectomy without reconstruction and chemotherapy. I became bald, breastless and bloated from steroids. It was soul destroying for me and my family. I felt like a cancer-created Humpty Dumpty. I didn’t know how to put myself back together again.”
Overall, survey respondents had a unified voice expressing how cancer stripped them of their identities and made their bodies physically unrecognizable.
Survey respondents expressed a clear desire to look better and to feel comfortable in their own skin again. And they shared how having access to practical, yet fashionable, recovery products tailored to their needs improved their outlook and made them feel empowered.
The top five recovery and lifestyle products women used or wanted were hair loss solutions, like attractive headscarves, hats and wigs; post-operative recovery wear, including stylish mastectomy bras and wraps for ostomy coverage; fashionable clothing with easy access to chemotherapy ports; comfortable apparel that disguises surgical drains and adaptive; easy-to-wear clothing, including adjustable pants and front-opening wraps; bras; and shirts.
Notably, women said that, in addition to products, they also needed more sources and information on lifestyle and recovery support.
Lurie and Wrapped in Love founder Karen MacDonald plan to utilize the survey results to reinforce their efforts to provide relevant lifestyle information and survivor-inspired recovery solutions to their communities. They plan to share the survey results with cancer hospitals, oncology professionals and support organizations that work with women to improve their psychosocial recovery.
They pledge to advocate for the beauty, fashion, and health and wellness industries to create an inclusive culture for women coping with cancer by making fashionable, yet functional, recovery products more widely available to the millions of women who need them.
Celebrate, remember and fight back against cancer Oct. 24
The American Cancer Society and FGCU Cancer Research Program will hold a drive-thru luminaria event from 11 a.m. to 1 p.m. Saturday, Oct. 24, at Miromar Outlets.
This free event safely celebrates loved ones lost and anyone who is battling or has overcome cancer.
Luminarias are a way to light up the community and honor every life touched by cancer. For those who would like to dedicate a luminaria, click here to honor or memorialize a friend or loved one, or in support of a caregiver.
NCH breast cancer patient navigator Jolene Clifford illuminates patients’ paths
by Kathy Grey
She has more than 180 people in her database, patients facing varying stages of a breast cancer diagnosis, each requiring individualized treatment.
Every one of these patients receives the business card of Jolene Clifford, oncology navigation coordinator at NCH Healthcare System.
Patients confronted with the reality of cancer in their own bodies need emotional and educational support, expert guidance and keen oversight as they walk the path toward wellness.
A navigator “helps patients communicate with their health care providers so they get the information they need to make decisions about their health care,” according to the website www.cancer.gov. They do that and so much more.
A registered nurse for 37 years, Clifford is also a certified breast care nurse and oncology-certified nurse. With a background in radiation oncology, she has been a breast cancer navigator since 2006.
Clifford’s vast experience is augmented by the fact that she’s a multi-tasker who knows her way around hospital systems and how they intersect. It’s a skill she honed here, as many of her patients are snowbirds who require treatment in other parts of the country.
After repeated vacations in Naples, she made the move to Southwest Florida in early 2018 from Bloomington-Normal in central Illinois.
“I knew I wanted to retire here, so I attended a career fair just to find out what the health care system was like,” she says. It turned out that NCH had an opening for “the exact same position I had back home.”
She wasn’t looking for a job, but she was urged to submit her application. The director of oncology called her the next day. Ultimately, she accepted the job — her fourth oncology navigation position — here in Southwest Florida.
Her NCH role includes breast health navigator, imaging navigator and overseeing the continued development of the oncology navigation program.
“I’m very happy to be working with these patients,” Clifford says. “I come into their lives at a tough time. Breast cancer is very individualized as to its treatment. I’m there to help them find their way.”
It is then that relationships form, as Clifford guides patients through the diagnosis, provides information and education, makes recommendations and addresses barriers to care, which can include language and cultural differences, insurance issues and even transportation issues.
These patients — almost 200 currently — range in age from 30s to 90s. Young women are concerned about their future and their fertility. Older women worry about not being there for their families. They want to know about support group meetings (something Clifford helps facilitate) and where to get emotional counseling when they need it. Clifford’s approach is customized to each patient’s situation and needs.
“I’m pretty much, ‘You need me; you call me,’” she says.
In her 40- to 50-hour workweek (“That’s healthy,” she says, “something I learned over time”), she confers with a multidisciplinary tumor board to discuss care, reconstruction, radiation, case concerns, clinical trials and other research and topics.
In her personal time, she takes good care of herself — walking, playing tennis, keeping up with her children and grandchildren in Illinois and keeping an eye on Zia, a year-old Jack Russell terrier who keeps her busy. She also works closely with the American Cancer Society and is an advocate of its “Making Strides Against Breast Cancer” event.
And because it’s Breast Cancer Awareness Month, Clifford wants to leave readers with this advice: “Get your mammogram. The survival rate is really high with early detection.”
More Than Skin Deep
Advancements in breast cancer treatment and surgeries leave the patient feeling whole
by Julia Browning
Receiving the diagnosis of breast cancer is something no one wants. As frightening as that prospect is, the diagnosis is less worrisome than it was even a decade ago.
Rapid advancements in surgical and nonsurgical treatments and savvy doctors, who have stayed ahead of the curve, give patients the most progressive care possible.
Not only have techniques for permanently removing cancer improved, but through oncoplastic surgery — the art of combining plastic surgery practices with cancer-treating surgery — a person can heal without physical reminders of their experience under the knife.
“The idea before was that the woman should be grateful that she is alive; that it didn’t matter what her breast looked like,” says board certified breast surgeon Dr. Elizabeth Arguelles of 21st Century Oncology in Naples. “Now the idea is, the woman has cancer and we need to treat it while keeping her feeling whole and beautiful. That’s what we can do.”
Dr. Elizabeth Arguelles
While a patient is being given a lumpectomy, for example, where cancer or other abnormal tissue is removed from the breast, an oncoplastic surgeon can reshape the breast itself, so that it keeps its natural form, rather than leaving a divot that would likely become dimpled or deformed.
Arguelles utilizes these oncoplastic surgical techniques and is certified in hidden scar surgery, another application that considers the aesthetic as well as the oncologic outcome.
With hidden scar surgery, the incisions are inconspicuously placed, often hidden around the areola or under the armpit, the goal being that when the scars heal, they are imperceptible.
“You can have the breast heal, looking as natural as it did when you started,” Arguelles says. “A lot of times you can’t even tell that the patient had anything removed.”
Oncoplastic surgeons also work in conjunction with plastic surgeons to give patients the best-looking result, particularly in cases of mastectomy. The plastic surgeon is able do a full reconstruction, adding implants, for example.
“If you do higher level oncoplastic surgery or a working combination with a plastic surgeon, sometimes you can actually improve the aesthetic appearance of the breast shape or size, while you’re removing the cancer,” Arguelles says.
Though the result is cosmetic, the impact is much more than skin-deep. Surgery can be traumatic for the patient. Seeing a daily reminder of that experience on their bodies can draw out that trauma.
Additionally, utilizing these techniques means that women won’t have to undergo multiple surgeries or suffer a long wait time between their cancer-removing surgery and their cosmetic one.
Arguelles monitors the perfusion (blood flow to the skin at the time of surgery) during a mastectomy to predict how well the patient will heal. If the blood is flowing regularly, implants can be added that same day.
“So, the patients have breasts removed, cancer removed, treatment done and get the full final reconstruction in one surgery,” Arguelles says, noting that this technique has a more positive psychological impact, being better for self-esteem and recovery.
“It’s fantastic that we can offer this now,” she says. “We didn't have anything like this 10 to15 years ago.”
During her more than 12 years in practice, much has changed in breast cancer treatment, making surgery less invasive and traumatic for patients, and providing improved results.
Examples of less traumatic surgery includes removing less tissue during lumpectomy, removing fewer lymph nodes, gene testing to determine how much chemotherapy is necessary and treating with radiation only, if possible, Arguelles shares.
“We’re learning that not everybody needs such a broad approach with maximal surgical techniques, chemotherapy and radiation,” she says.
Of course, it would be ideal to never get breast cancer in the first place. But Arguelles points out that being a woman leaves one vulnerable to begin with, as one in eight women with no risk factors will develop breast cancer in her lifetime.
But there are things people should be aware of, including family history (not just on the maternal side, as previously thought). Arguelles says to note cancers of all kinds on either side of the family, as possible predisposing breast cancer factors.
A recently discovered risk factor is breast density, as women with dense breasts are four times more likely to develop breast cancer, Arguelles says.
Breast density is genetic, and it is only detectable through a mammogram. Though nothing can be done to lessen breast density, Arguelles advises that people ask to see their mammogram report. If their breasts are moderately dense or higher, they should ask for additional screening, such as a diagnostic 3-D mammogram.
Staying healthy by consuming a low-fat diet, regularly exercising, getting enough sleep, controlling stress and limiting alcohol intake to one drink a day on average, is your best way to avoid getting breast cancer, Arguelles says.
If you are diagnosed with breast cancer, the most important thing, Arguelles says, is to find a doctor you trust and who empowers you to be a participant in your care.
“The patient needs to be confident that their surgeon and their team is not stuck back in the 1990s,” Arguelles says. “(They need someone who) is keeping up to date on current literature, surgical techniques and treatment recommendations so they can have the most optimal outcome.”
Dr. Elizabeth Arguelles’ office is at 820 Goodlette Road N. in Naples. To learn more, call 239-430-3260 or visit www.21co.com/swflbreast.
Rooted in Resilience
Blue Zones Project promotes living healthier, happier lives
by Sebastien Saitta
With so much coming at us at once — hurricanes, a global pandemic, raging fires out West, rising chronic disease rates and bitter political tensions and division —
improving well-being and building resilience is more important than ever.
What can Sierra redwood trees teach us about resilience? Redwoods are among the tallest and oldest living things in existence, with the average age of mature trees ranging from 800 to 1,500 years, and some reaching the age of 2,000. Having withstood drought, high winds, floods, fires, disease and bitter cold, these giant trees embody the spirit of resilience.
What many do not see is what happens just 5 to 6 feet beneath the surface. The trees’ roots extend, sometimes up to 100 feet, and are often intertwined. In fact, these trees are codependent, relying on each other to survive. They form communities in which their roots fuse together, providing strength, support and nourishment for each other.
It is with this concept that Blue Zones Project, through the generous support and visionary leadership of NCH Healthcare System, helps to build resilience and optimize well-being in Southwest Florida in a time when we need it most.
“This is a ‘we’ project, meaning that we are helping people live longer, healthier, happier lives together,” says Deb Logan, executive director at Blue Zones Project. “The roots of our ‘we’ include the many individuals, organizations and leaders that fall under that collective mission.”
Blue Zones Project is working with more than 700 organizations — schools, restaurants, worksites, homeowners’ associations and faith-based organizations —and has engaged with more than 225,000 individuals to bring healthier choices to Southwest Florida.
“This pandemic has exposed gaps in our community that include food insecurity, loneliness and financial hardship for so many,” Logan says. “We have taken active steps to address these issues through a coordinated effort with our many partners, well-being champions and organizations.”
Some of the well-being and resilience measures Blue Zones Project has implemented this year include:
Creating a Food Policy Council to address food insecurity in Southwest Florida. This council involves more than 60 partners and advocates who operate within the local food system, from food pantries and local farms to Lee and Collier school districts and restaurants. The council is working to empower both organizations and individuals to improve health and fight disease through nutritionally sound practices supported through economically prudent policy, systems and environmental improvements.
Participating with community partners in Immokalee, including Meals of Hope, Brighter Bites SWFL, Harry Chapin Food Bank and Reach Assembly FKA First Assembly of God, to help the underserved and food insecure through assistance at local food pantries.
Hosting a series of online well-being group meetups to help combat the issue of loneliness, and foster connection, support and belonging. (Learn more at www.WellbeingMoai.Eventbrite.com.)
Partnering with a financial advisory company to create a free financial well-being webinar series for those struggling with the financial fallout from COVID-19.
Creating an ongoing series of well-being activities that are free online for the community. The series includes healthy cooking demonstrations, purpose workshops, fitness series and tai chi and yoga videos. (To sign up, visit www.BlueZonesProjectSWFL.Eventbrite.com.)
“Like any storm, vulnerabilities that existed beneath the surface are revealed,” Logan says. “But our mission is to also show on a deeper level, the network of intertwined roots that have supported this community through tough times before and will see us through this pandemic and trying times in the future.”
in this issue
The Best Worst Day of My Life
How my breast cancer diagnosis at age 33 changed me for the better
by Leigh Hurst
In my early 20s, I was busy chasing my dreams, focused on career, travel and dwelling in New York City. I was taking on the world. In the back of my mind, I knew I wanted to get married and have a family — someday.
As I entered my 30s, I started to feel less satisfied by the glamour of a great career and all that came with city life. I started to wonder if there was more: Would simplifying my life bring a deeper sense of purpose? But I wasn’t sure how to embark on this path. I was bound by “golden handcuffs,” and as much as I felt ready to step out of the corporate grind, I struggled with fulfilling it.
Finally, I decided to move from New York City back to my small hometown in central Pennsylvania. The thought of owning a house with a yard and being part of a community was much more appealing than it had been a decade before. I took a leap of faith and bought a small house that was about three times the size of my shoebox apartment in New York and three times less expensive.
Shortly after making the move, I was diagnosed with breast cancer. I was only 33.
That wasn’t supposed to happen. Right in the middle of trying to simplify my life, things became more complicated than ever. Of course, in the immediate sense, I was consumed by the concept of life or death and questions about my future. Would I ever get married or have kids? I wasn’t ready, but I also wasn’t ready to think about those things never happening. I had to learn to reconcile that my future was filled with questions no one could answer for me. I felt lost and scared.
My breast cancer was early stage. I had a lumpectomy, followed by three months of chemotherapy and five weeks of radiation treatment. I was so grateful to be back in my hometown, where I could navigate this hard time with my family and community supporting me.
During treatment, I joked with friends, saying, “You guys really need to feel your boobies,” because that is how I found my lump. In fact, I was the only one that felt it. Even the doctors didn’t notice it until I pointed it out. I designed a “Feel Your Boobies” T-shirt as a playful reminder and put up a one-page website to show my friends scattered across the country. The shirt went viral.
Soon, I was receiving hundreds of orders each week from people across the country I didn’t know. I enlisted my family and friends to help pack and ship the shirts with me. I was still bald and in treatment, but a new sense of purpose formed in my life. My life was unexpectedly and forever changed.
Managing shirt orders consumed my time. I started to ween myself from my corporate career, so I could move toward using “Feel Your Boobies” to give back. I found my way on a path I never could have imagined before breast cancer, and what seemed like my darkest days drifted into the background. The new path was less about a paycheck and more about passion, with less focus on myself and more on helping others.
I formed the Feel Your Boobies Foundation to educate young women who, like me, don’t think too much about breast cancer. I walked away from my corporate career to run the foundation as my full-time job. I have heard from women who have found lumps and received a diagnosis because of the Feel Your Boobies campaign, and that is so much more important to me than any New York City career ever was.
Over time, after celebrating milestones that marked years of living cancer free, I started to gain confidence in my body again. I knew that it was always a possibility that my breast cancer could return, but with time, that fear lessened. At age 38, I got married. At my 5-year anniversary from breast cancer, I was given the green light to have kids. At ages 40 and 42, I gave birth to two healthy boys and began enjoying life events I wasn’t sure would ever happen.
With 16 years between me and my breast cancer diagnosis, I realize that the worst day of my life created opportunities to become what I couldn’t seem to achieve on my own, with purpose and simplicity. For that, breast cancer, I’m truly grateful.
Leigh Hurst is a breast cancer survivor, founder of the Feel Your Boobies Foundation and author of “Say Something Big: Feel Your Boobies, Find Your Voice” (Oct. 2020).