All too often, the opening lines of a breast cancer story echo similarities—"I felt a weird lump" or "I finally went in for my mammogram" or "They saw something on the scan and asked me to come back in" or "It's in my family, so I knew I should get checked." And yet each journey through treatment remains completely unique to the patient. For years, medical experts have advocated breast self-exams and regular mammograms, reporting the benefits of early detection. And genetic testing advancements continue to increase rapidly.
There are volumes of clinical studies and research and an incredibly active, devoted network of foundations and fundraisers determined to speed the efforts to find a cure. But until that cure is found, the comprehensive care available in Atlanta honors the person beyond the patient, strengthening life in the present tense.
At First Blush
Hearing that diagnosis, watching the physician's lips move as they pronounce the C-word, lingers as a surreal moment, with time standing still. There's no way to accurately anticipate the reaction to such news. Will the words be heard? Will the brain even process the information? When it's time to get the test results from the doctor, don't go at it alone.
"The impact is big from day one," acknowledges Anita Johnson, MD, FACS, Breast Surgical Oncologist at Cancer Treatment Centers of America® (CTCA) in Newnan, and she addresses that impact at her initial meeting with the patient after their diagnosis. "The first thing I ask is: Who helps take care of you? Immediately I address that. We go through the entire breast cancer talk and then we talk about real life. If they have somebody in the room with them, I tell that person that it's time to step up. Now!" Johnson says.
"Bringing a trusted family member or friend to appointments when patients are first diagnosed is very helpful," says Mylin Torres, MD, director of the Glenn Family Breast Center at Emory University's Winship Cancer Institute. "Understandably, this is a time that can be unsettling and overwhelming. Having a strong, calm individual in your corner is invaluable. This person can help record and recall conversations with providers."
Maybe someone in the support network could assume a designated administrative role, managing notes, reports and schedules. "Staying organized seems to help patients cope," comments Sara Owens, BSN, RN, OCN, breast health nurse navigator with WellStar Kennestone Hospital. "They tend to feel more in control, can better communicate with their treatment team and are better able to advocate for themselves." Owens explains that when patients are first diagnosed, they are in the acute phase of their treatment and her team acts as a guide. "During this phase, they learn about their disease and treatment options—physical components such as surgery, medical procedures, radiation."
Concurring, Kathleen Gamblin, RN, BSN, OCN, coordinator of oncology patient navigation at Northside Hospital Cancer Institute, also advises designating a spokesperson for the patient.
"They can be the one to disseminate information, field phone calls and be the point person for meals and other services." Delegating as many tasks as possible gives the patient the space needed to adjust to a new reality.
A Hint of Tint
Allow time to absorb information. Don't hesitate to get a second opinion or third—whatever necessary to fully understand what's happening in the body and what the road to recovery might look like. Trust that the best decisions will be made by evaluating all the different opinions. Go ahead and shop it around. This is hard. Talk about it. Ask questions.
"Build clear and consistent communication with your healthcare team," Gamblin says. "Know who you can call and when ... the healthcare team is there for you; you are not a bother!"
Developing a partnership is a crucial part of the approach, as Torres describes. "Having honest conversations about prognosis, the potential benefits and risks of treatment, helps patients make informed decisions about their care. It also helps patients to align their priorities so that they and their families are prepared for any outcome."
"Cancer research continues to progress on a day-to-day basis," says Shefali Shah, MD, chief of medical oncology and hematology at Kaiser Permanente Georgia. "Therapy is becoming increasingly individualized."
Part of that individualization begins with the team assembled for each case. "Developing a personalized plan always involves a multidisciplinary approach," confirms April L. Speed, MD, oncological breast surgeon and member of the Komen Atlanta Board of Directors, requiring an entire care team to collaborate and form a plan. For some patients, this can mean combining a traditional medical approach with a variety of alternative therapies, and their treatment teams will have resources for all the options. At CTCA, each patient receives a plan that includes a variety of modalities with oncologists, radiologists and surgeons, joined by specialists in physical therapy, mind/body therapy, naturopathy, chiropractic care, acupuncture and nutrition.
Asaf Yalif, MD, FACS, of Y Plastic and Reconstructive Surgery, agrees, "By having open communication and transparency, we can make sure that we put the patient's personal journey at the forefront. One of the most rewarding parts of my job is the opportunity to be in the initial meeting where a hard diagnosis is delivered and be able to offer hope with regard to reconstruction and a focus on recovery right from the beginning."
Such focus benefits both patient and provider, as Johnson mentions when talking about the Breast Center at CTCA approach. "All of our providers are dedicated to breast care. All are located in one area [of the hospital] and stay on top of the latest advancements. Every case is completely different. Even within the same family."
Be realistic about lifestyle and expectations during treatment, accepting that there are vast unknowns. The primary focus for the patient should be striking back against cancer cells.
Torres reiterates the need to seek assistance to deter additional stress: "A network of family, friends and neighbors who will help with childcare, eldercare and other home responsibilities is key. Being able to turn to different individuals from your network for advice, help at home or emotional support is important, as each one will have a unique perspective on your journey and will help provide you with the energy and encouragement needed to successfully complete treatment."
From keeping health notes and nutrition guides, to running errands and scheduling meals, or even gardening and pet care—help is needed in a myriad of ways. Perhaps a friend that's a born leader or an organizing genius could serve as the patient's personal volunteer coordinator, using computer apps to keep everyone updated on the tasks at hand.
When thoughts and feelings get too overwhelming, writing them down can help cope with confusion. In addition to taking notes on medical information, consider having a diary of the entire experience.
"We have found that journaling is a good strategy for [patients], because it helps them keep track of what they are going through physically and emotionally," advises Owens. "A small company called CanPlan has created an organizer and journal that has calendars, an address book, and a detailed daily chart that the patient can fill out about how she is doing on any particular day. Similar organizers can also be obtained from the LiveStrong foundation as well as the American Cancer Society®. Also, there are amazing computer applications specifically geared toward keeping track of medical information and cancer treatments, many of which are free. Chemo Brain Doc Notes is one that can help patients keep track of information, appointments and side effects related to their chemo treatments."
When it comes to emotional support, some feel that's harder to quantify. Owens sees this as a pivotal role, influencing the patient's ability to cope emotionally. "Having a support person who can act as a 'safe place' for the patient to express their worries and as a sounding board for decisions is important to their outcomes."
Shah suggests that patients and caregivers consider reaching beyond immediate friends and family, "Some find that joining a support group where they can talk to others going through a similar experience is very comforting. If the idea of speaking to strangers does not appeal to you, social media and other online forums are also a great way to build a network of support and connect with others."
A Rose by Any Other Name
The doctors, nurses, technicians, therapists and experts that are part of the treatment team have dedicated their lives to this battle. But they also count on patients to teach them new things along the way. Knowledge about the disease is constantly developing. Communicate with your team every step of the way.
Torres looks to her patients for cues on how she can enhance their care. She says, "My research on quality of life and side effects of breast cancer treatment has been largely driven by conversations with my patients. I like being asked, 'Why?' by my patients because, if I don't know the answer, I view it as an opportunity to conduct research to figure it out."
For Johnson, constant learning fuels her passion for patient care. "For me, through my training, breast was the specialty that was always evolving," she remarks. "I love the science behind it, and I love taking care of other women." Which is why Johnson focuses heavily on reconstruction, asserting, "I want to help all my patients as they get over the thought that they had breast cancer. I'm a woman, too. It makes me feel good when you are looking good!"
Mindset plays a crucial part in the cancer battle. Mind and body work in tandem. If there's ever a time where the axiom "attitude is everything" holds true, it's when that attitude guards the arsenal of a cancer warrior.
Torres says, "I try to get a sense of how enthused a patient is to pursue traditional treatments, how aggressive they want to be in their treatment plan, what are their competing responsibilities and how much they value their quality of life." Allowing for every decision to be intensely personal gives a patient an active role in this ongoing cancer drama and also gives them hope to achieve the life they want in recovery.
"One particular lady that I've been working with," reports Owens, "has every barrier you can think of when it comes to getting care—no family support, dangerous living situation, language barrier, cultural differences, inconsistent employment. I was able to work with my team, including the doctor's office, a social worker and a case manager with the YWCA of Northwest Georgia, to get her into a safe environment and started with treatment. She's been amazingly strong and resilient!"
Many patients find the transition from oncology to general medical care with a primary care physician (PCP) confusing—especially if no prior relationship with a PCP had been established prior to their cancer journey. Kim Randolph, MSN, FNP-BC, spearheads the survivorship program at CTCA and recognizes the need to help patients find a new routine for regular medical care. "Our goal for survivorship is to be that bridge between active treatment and surveillance," Randolph explains. "We help with any side effects or residual problems patients may have, but we also examine the new things someone may be dealing with. There can be some emotional and psychological issues at that time."
A huge part of Randolph's mission is monitoring patients' overall health. "Some become so focused on the breast cancer that they ignore comorbidities," she reveals. "I strongly encourage them to find someone in their community for follow-ups." Once patients establish a relationship with that PCP, Randolph and her team send over their survivorship care plan, called Journey Forward, documenting all their providers and a brief summary of treatment.
"I am big on primary care," Randolph says. "I want everyone to have that PCP; someone who knows them when they are sick and when they are well!"
The Ribbon of Truth
Yalif greatly values the inspiration he's received from his patients. "I think the most profound thing I have learned is the importance of remaining positive in times of great duress. Sometimes, even if you can't see the light at the end of the tunnel, you must believe it's there."
"Each patient's journey is unique and their own," says Gamblin. "There is no right or wrong way to be a cancer patient. Take care of yourself, allow others to help you and know that you are not a statistic. You are you."
And remember that this is only one chapter of an incredible life story.
Cancer Treatment Centers of America® at Southeastern Regional Medical Center, cancercenter.com/southeastern
Ford Warriors in Pink, warriorsinpink.ford.com
Glenn Family Breast Center at Winship Cancer Institute of Emory University, winshipcancer.emory.edu
Kaiser Permanente Georgia, kp.org
Northside Hospital Cancer Institute, northside.com
Rebecca Walden Wig Studio, wigspertofatlanta.com
Susan G. Komen® Greater Atlanta, komenatlanta.org
The Dana Barrett Show, biz1190.com/danabarrett
The IWSC Group, iwscgroup.com
TurningPoint Breast Cancer Rehabilitation, myturningpoint.org
WellStar Kennestone Hospital, wellstar.org
Wigwam Wellness Festival, wigwamfest.com
Y Plastic and Reconstructive Surgery, yplasticsurgery.com