Although the conference was winding down, Sunday was host to more events of interest for attendees. A session on genetics and genomics served as a primer for navigators, while breakout sessions gave attendees the opportunity to get hands-on experience with integrative therapies, including art therapy, aromatherapy, pet therapy, and healing touch. Popular and engaging, these sessions were a fun way to bring the weekend’s events to a close before bidding a fond farewell—until the Midyear Conference in May!
Poster Awards Put Spotlight on Exceptional Research Projects
A Friday afternoon question-and-answer session afforded conference attendees the opportunity to engage with researchers about the projects, which were conducted at the investigators’ respective institutions and were organized in 8 categories based on the AONN+ navigation domains. Later in the evening, many gathered to watch the poster presentations, after which the chosen winners were announced.
Aimed at enhancing navigation programs and the field as a whole, the posters encompassed research studies, quality improvement projects, and best practices for navigators. A separate category—one that is not included in award eligibility—highlights industry-sponsored clinical research.
Thought-provoking and compelling, the research presented served as a catalyst for stimulating discourse, undoubtedly inspiring fledgling investigators to try their hand at an abstract for submission to next year’s event.
Everyone at AONN+ extends heartfelt congratulations to each of the winners. To view the winning research, check out the November issue of the Journal of Oncology Navigation & Survivorship.
Presentation Decodes Genetics and Genomics for Navigators
The role of genetics and genomics in risk assessment and treatment for patients with cancer is significant and continues to expand. Theodora Ross, MD, PhD; Frank dela Rama, RN, MS, AOCNS, AGN-BC; and Jennifer R. Klemp, PhD, MPH, MA, gave navigators an introduction to the topics and their application to the field of oncology navigation during a session entitled “Genetics, Genomics, and You: A Primer for Oncology Clinical & Patient Navigators.”
Introducing Dr Ross’ book, A Cancer in the Family: Taking Control of Your Genetic Inheritance, the panelists shared how they approach the topic of genetics with their patients, and how they go about explaining it to them. Mr dela Rama shared that he uses analogies to discuss topics that pertain to genetics such as mutation. From there, they offered “Genetics 101,” an overview of the basics.
Panel members next shared how they prepare patients for genetic testing, and what is most important for patients to know before undergoing testing. Understanding that people are apprehensive of genetic testing, Dr Ross states that offering candidates genetic counseling is helpful. In addition, they shared stories about how the discovery of a gene mutation—or the lack thereof—had an impact on the entire family.
Citing the power of cancer genetics, the presenters discussed various inspirational figures in the field, including scientist Rosalind Franklin, who died of ovarian cancer in the 1950s after generating the data that provided the understanding of DNA structure, and comedian Gilda Radner, who also died of ovarian cancer, had a family history of the disease, was of Ashkenazi Jewish heritage, and likely had a gene mutation contributing to her cancer. The panel members went on to discuss survivors, including Christina Applegate, a breast cancer survivor, who discovered she had a BRCA1 mutation; “previvors,” like Angelina Jolie, who underwent a bilateral mastectomy after finding out she had a BRCA1 mutation; and strivers, including Henry T. Lynch, after whom the Lynch syndrome was named, and who is considered the founding father of the cancer genetics field, among others.
Human beings have more than 20,000 genes, and scientists have some knowledge of just 4000 of them and know nearly nothing about the remainder. With this in mind, Dr Klemp said that how we are testing today may be reevaluated 2 years, 5 years from now.
Essential to cancer genetics is an accurate family history, and thorough health histories are critical to understanding the meaning of genetic alterations.
Although much of what is found in the genome does not carry meaning for those interpreting the results, continuing research will help scientists to make sense of what is discovered. The presenters pointed out that when BRCA and BRCA1 were first discovered in the mid-1990s as genes whose mutation cause hereditary breast and ovarian cancer, scientists were uncertain about how to proceed with this new information. Today, preventive surgery can stop these cancers in carriers of the gene mutations.
Discussing the difference between genetics and genomics, the presenters explained the genome as a patient’s complete set of DNA, which can affect the course of treatment for a patient by increasing the specificity of a diagnosis.
Examining how the concepts of genetics and genomics could be incorporated into navigators’ day-to-day practice, panel members offered questions for them to ask related to these concepts:
- What is the genetic component to this condition/stage of cancer?
- Are these signs that the cancer is genetic or familial?
- Is genetic testing or treatment available?
- Has the patient/family been offered genetic resources?
Hands-On Integrative Therapies Provide Relaxation, Healing for Patients, Self-Care for Navigators
Before departing from a busy weekend of conference events, navigators had the opportunity to choose from 1 of 4 integrative therapy sessions, not only to learn about how these modalities could benefit their patients, but also to enjoy some self-care that is much-needed for those in the field. Sessions on pet therapy, aromatherapy, art therapy, and Reiki all proved popular and stimulating events for those who attended.
Awareness about animal-assisted therapy (AAT) seems to be growing, with more and more people reaping the benefits of therapy dogs. Involving dogs or other animals trained to provide comfort, distraction, and motivation to improve the health and well-being of specific populations, AAT has been shown to reduce physical and emotional pain, quell boredom and anxiety, promote focus in those with mental illness, and foster open communication between a patient and clinician. In addition, according to Linda Marler, RN, BSN, CRRN—who hosted the session along with canine friends—animals offer unconditional acceptance, provide entertainment, encourage socialization, and decrease heart rate and blood pressure. Therapy animals can even impart a sense of spiritual fulfillment or oneness for some. Attendees were able to get firsthand proof of these benefits as they interacted with the trained therapy dogs throughout the session.
Those seeking to sniff out a modality that comes with powerful benefits without adverse effects hit it right on the nose when they attended a session on aromatherapy, presented by Kaye Reviere, BS, MEd. Composed of natural, aromatic compounds found in the flower, bud, leaf, stem, or roots of plants, essential oils are produced via steam distillation or cold-pressed extraction, and can be used aromatically, topically, or internally. Along with purifying the air and serving as natural antimicrobials, antibacterials, and antivirals, essential oils have a host of other positive effects, ranging from helping with mood, stress, and energy levels, to providing immune system support and decreasing nausea, among others.
Citing a study at Vanderbilt Hospital in Nashville, TN, Ms Reviere discussed the results after 30 days of essential oil diffusion in the emergency department there. Of staff members surveyed, 84% strongly agreed and 10% agreed that diffusing essential oils contributed to a more positive work environment, reporting significant reductions in work-related stress and increased feelings of being able to handle stressors, along with other positive effects.
A 2-time breast cancer survivor, Carol Edmonston first discovered the potential for art therapy to help patients when she was a patient herself. Sitting anxious in a waiting room before an appointment, she began doodling and became engrossed in what was a sort of meditation. Since then, she has helped others to learn—and benefit from—the art of the “Sacred Doodle.”
Along the cancer continuum, Reiki, or healing touch, can serve as a powerful complement to treatment, helping to reduce fear and anxiety, as well as reduce pain and promote relaxation. Denise Yoshihara, MSW, LCSW, OSW-C, a healing touch practitioner at Oncology Services at St. Jude Medical Center, Fullerton, CA, knows firsthand the healing power of touch. She shared techniques and offered an experiential demonstration to illustrate how, by restoring harmony and balance to the body’s energy system, healing touch removes obstacles to wellness for patients.
Oncology Hot Topics Focus on Drug Costs, Legalization, and Abuse
Ever-evolving, the world of oncology can be a microcosm of the country as a whole. Issues that have a national impact carry their own implications for cancer care. An expert panel convened to elucidate 3 of the most significant issues in oncology today—prescription drug pricing, medicinal marijuana, and the opioid crisis.
Created to identify and address such issues, the AONN+ Policy and Advocacy Committee is chaired by Elizabeth Franklin, LGSW, ACSW, Executive Director, Cancer Policy Institute, Cancer Support Community. She kicked off the session by discussing healthcare reform and its implications. Although by no means perfect, the Affordable Care Act (ACA) provided insurance coverage for those with preexisting conditions, also ensuring that these individuals were not charged more for coverage than their healthier counterparts. Prior to the ACA’s passage, 43 states, along with Washington, DC, allowed insurance companies to charge more to cover those with preexisting conditions.
“Cancer is not partisan,” said Ms Franklin, urging navigators and other healthcare professionals in the room to hold their representatives elected in this past midterm election to their promise for coverage of preexisting conditions and quality of care for patients with cancer.
The protections that later came with the ACA are now being threatened. A lawsuit, led by the Texas Attorney General and involving 20 states as plaintiffs, asserts that the ACA has been deemed completely invalid because Congress repealed the tax penalty mandate for the uninsured. If the legislation is indeed struck down in its entirety, millions could lose coverage or experience astronomical cost increases.
While the Trump Administration has yet to offer replacement legislation that would provide the same protections, the US Department of Health & Human Services has released American Patients First: The Trump Administration Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs. AONN+ signed the blueprint to express support for the plan’s efforts.
Medicinal cannabis presents a brand new landscape to healthcare providers. Carey Clark, PhD, RN, AHN-BC, helped navigators in beginning to discern the forest from the trees in this complex issue. Reviewing the National Council of State Boards of Nursing Guidelines for Medical Marijuana, Dr Clark outlined the principles of essential nursing knowledge on the topic, which include knowledge of its legal status, recreational use, the endocannabinoid system, cannabis pharmacology, considerations for safe patient use, and the stigmatization of patients’ cannabis use. In addition, the guidelines assert that nurses should take an unbiased stance, free of judgment toward patients’ treatment choices.
Seventy-five percent of patients are not happy about the nausea, vomiting, and other side effects of prescription drugs. Associated with multiple benefits for patients with cancer, marijuana can provide relief of symptoms associated with cancer treatments, according to the National Cancer Institute. In addition, cannabinoids have been shown to inhibit tumor growth while protecting normal cells, Dr Clark explained, adding that nurses should adopt a patient-centered process surrounding use of the new treatment option.
The opioid epidemic presents an ongoing national crisis—one that is particularly relevant in oncology, where pain management is a glaring necessity. Tonya Edwards, MS, MSN, RN, FNP-C, Department of Palliative Care & Rehabilitation Medicine, MD Anderson Cancer Center, Houston, TX, discussed the implementation of opioid safe practices for patients with cancer.
Underlining the seriousness of America’s opioid crisis is the prevalence of addiction and overdose deaths throughout the country. Ms Edwards stressed the need for “all hands on deck” in fighting this crisis, referring to each member of the oncology care team with nurses being in the frontline. In 2013 alone, nonmedical use of prescription opioids cost $78 billion, according to Ms Edwards. Therefore, the importance of following best practices for keeping opioid-treated patients safe cannot be underestimated.
These practices include:
- Having an open, nonjudgmental talk with the patient, communicating concerns about his/her safety
- Reducing the time interval between follow-ups for refills
- Placing limits on the quantity and dose of opioids at each visit
- Providing random opioid testing
- Setting boundaries
- Tapering off strong opioid analgesics whenever possible
- Considering referral to specialists
- Remaining vigilant, even with low-risk patients
- Providing precise documentation
“Duration is the strongest predictor of misuse,” Ms Edwards said, adding that the shift from adherence to aberrancy can be a subtle one.
Lillie’s Story Full of Heartbreak, Hilarity as the AONN+ Lifetime Achievement Award Winner Shares Family’s Cancer Journey
Tears flowed freely among rapt audience members during “Lillie’s Story: A Family Affair” Thursday night, and it was difficult to discern whether they were from sorrow or laughter. Delivering her story with both poignancy and punch as only she can, AONN+ Co-Founder and Program Director Lillie D. Shockney, RN, BS, MAS, ONN-CG—accompanied by her mother, Charmaine, a 45-year endometrial cancer survivor—bared her soul and touched others in the process.
The 2-time breast cancer survivor spoke of her first bout with the disease 26 years ago, when she was 38 years old. After detecting a lump and receiving a mammogram and then a biopsy, Lillie received grim news from her doctor.
“He said, ‘Lillie, your breast is very diseased—far more diseased than the mammogram shows,’” she said, adding that the mass within it was the size of a plum. Still, as denial took hold, she told herself it wasn’t a huge deal. Shortly thereafter, her doctor went on vacation. Instead of waiting until he returned to get more information on her condition, Lillie accessed her own record by pulling it up at Johns Hopkins, where she worked. What she found sent her reeling—invasive ductal carcinoma.
“I don’t remember driving home,” she said. Her husband was not home when she arrived, but her 12-year-old daughter Laura was. As Lillie put on a brave face to hide the terrible truth from her daughter, she reached out to her own mother.
“She said, ‘We didn’t get what we wanted.’ I still remember that,” said Charmaine, who lived on the farm where Lillie had been raised.
Lillie remembers, too.
“My dad was out in the barn, and he could hear her screaming in the farmhouse,” Lillie said.
Charmaine told her husband that she was terrified of losing their daughter, a possibility that was very real. Meanwhile, Lillie was frantic at home, going over and over in her head how she would break the news to her husband when he arrived.
“I thought, ‘I better clean my house, because I could be dead in a week,’” she said, to uproarious laughter, adding, “My house has not been that clean since.”
When her husband finally did come home, all the practicing Lillie had done flew right out the window. He greeted her, saying he hadn’t expected her to still be up so late. She answered him bluntly.
“I said, ‘I’m up because I have breast cancer,’” she said.
He gave her the reassurance she needed in that moment, telling her they would get through it as a family. Charmaine, on the other hand, found herself going to pieces, a departure from her usual role as the rock of the family. Lillie was surprised by this, and tried to hold it together for herself and her mother, she said.
When her oncologist returned, he told her she would need a modified radical mastectomy. Even worse, she would have to have it done while in a “twilight” state, as she has problems with undergoing general anesthesia. As the surgery loomed, Lillie shared with her husband her worries about their future intimacy. Although he assured her they would be alright, she wasn’t so sure. She worried about how he would react upon seeing her without her breasts. To equal the playing field, Lillie said, she asked that he remove his dentures when he had his first look at her, as she had never seen him without his teeth during their 41 years of marriage.
“I said, ‘I want you to feel equally vulnerable to me,’” she said. “That was really important to me as a patient to have control of that moment.”
When the time came, her husband told the surgeon to bring her back to him after she received what he referred to as her “transformation surgery.” It was a beautiful way to look at a harrowing procedure.
“He said, ‘You’re exchanging your breasts for another chance at life, and that’s worth it,’” Lillie said, adding that her description of what was happening was a little less poetic than his—she called it “stealing second base.”
As she began the arduous recovery process, the surgeon did something analogous to tearing off a Band-Aid—painful yet necessary, and the faster it’s done, the less painful it is. He said he wanted Lillie’s husband to be there when he did her first dressing change. She panicked, not ready to be laid bare before the man she loved.
“I felt like I was living in a nightmare,” she said. “I wanted to scream but no sound came out. I said, ‘I have never been this naked in my entire life.’”
Again, Lillie’s husband said all the right things, calling her his “transformed woman,” expressing his unflagging love, and providing the support she sorely needed in that painful moment. Still, she was understandably beside herself.
“I still could not speak. If I could, I would have said, ‘Take out your teeth,’” she said, garnering more laughter from the crowd.
The surgeon later explained that he made the move in an effort to jumpstart intimacy between Lillie and her husband, knowing all too well that her trepidation could have stalled it. When it came time to get a prosthesis, it called for a mother-daughter shopping trip. Wasting no time, Lillie determined a name for her new breast while still in the store—“Betty Boob.”
“I walked out of the mastectomy store like a kid wearing new shoes,” she said, adding that she later sent adoption announcements for “Betty,” and that a thoughtful friend presented her with a Christmas ornament in the shape of a baby bottle, proclaiming, “Betty Boob’s First Christmas.”
After waiting for the laughter to subside, Lillie shared the sobering story of her second battle with breast cancer. This time around, both she and Charmaine were better equipped to handle it. Charmaine regained her status as the strong support of the family, which allowed Lillie to focus more on fighting the disease.
“I did so much better in my recovery, because I wasn’t trying to hold her together,” she explained.
Knowing she needed support, however, Charmaine set about looking for an organization that provides help to mothers of patients with cancer. With the Internet in its infancy, only a few cancer websites existed, along with a smattering of message boards on the topic. Lillie posted a message on her mother’s behalf, and although no one came forth with a group as requested, other mothers reached out to say that they too were seeking this type of support. She returned to Charmaine to tell her she had found a group.
“She said, ‘Good, where is it?’ I said, ‘It’s you,’” Lillie said, adding that a Maryland senator worked with them to help them form Mothers Supporting Daughters with Breast Cancer. The organization launched in 1995.
“She has helped, literally, tens of thousands of families,” Lillie said. “It’s been incredible.”
A decade after her second mastectomy, Lillie became eligible for breast reconstruction, for which she is a big advocate. She lobbied on Capitol Hill in 1998 to have the surgeries covered by insurance after she inquired with the companies and found out they cover testicular reconstruction for men.
“That was my testimony,” she said. “And we got the bill passed.”
Before getting the surgery, Lillie asked God for a sign of whether she should have it done. Upon leaving church and getting in the car, “Sexual Healing” by Marvin Gaye came on the radio, crooning, “I can’t wait for you to operate,” and “You’re my medicine, let me in.”
Lillie’s husband was excited for the surgery, marking it on the calendar, “Nipples coming.” When the day came, she planned to fit in the surgery between morning and afternoon clinic. Her plans were thrown off when she received a page.
“‘Your husband is arriving with chest pain,’” her colleagues told her, adding, “‘We understand you’re getting nipples today.’”
Not wanting to interfere with her surgery, Lillie’s husband urged her to go through with it. It took about 30 minutes. She returned to his room later, and he asked to see her breasts. She complied, and his heart monitor went off.
“Before I could get anything put away, the whole team was there,” she said. “A resident asked, ‘What the hell is going on in here?’ Another said, ‘Didn’t you hear? She got nipples today.’”
She burst into tears upon seeing her new breasts in the mirror, because they looked so real, she said. Since then, whenever a patient with breast cancer is upset about losing her breasts, she lifts her shirt to provide comfort and encouragement.
When Laura was 15, genetic testing was burgeoning. Lillie made plans to undergo the screening, but her daughter wouldn’t hear of it.
“She said, ‘Please don’t do that, mom. Please let me be a teenager for a little while longer,’” Lillie said, adding that when Laura turned 21, she was finally ready for the potentially frightening news and its implications.
Lillie tested negative for a BRCA mutation, but it did turn out that she had another type of gene mutation. Having fought her own battle with cancer, Charmaine got tested, too. Lillie’s father became annoyed, feeling left out of the whole thing. He felt, “I am part of this, too,” she said.
Unfortunately, he was, in more ways than one. He was diagnosed with prostate cancer, and while he wanted to keep it a secret from those outside the immediate family, he ended up telling everyone, becoming a support to others at his radiation therapy center, and even continuing to go back after his treatment was complete.
When he entered hospice, he went back to thank his oncologist. The doctor shunned his gesture at first, saying there was no reason to thank him, because he had failed to save his life. Lillie’s father asked him to come out from behind his desk and sit next to him. He took the oncologist’s hand in his own and said, “You have a tough job, don’t you?” The oncologist burst into tears. It’s been 5 years since Lillie’s father passed away, but it’s clear his legacy was as impactful as that of his wife and daughter, who was presented with the AONN+ Lifetime Achievement Award at the conference. Fittingly, from now on the award will bear Lillie Shockney’s name.