One of the benefits of having an online presence is making connections with professionals from all over the world. Many people consider Twitter as a way to comment on celebrities or an always-on, instant newsfeed. For me, it has another use: as a virtual Personal Learning Network (PLN) that supports my professional learning and development.

More than just “another social networking tool,” Twitter is about connecting with like-minded healthcare professionals for personalized and ongoing professional development.

Twitter is the backbone for my PLN. Each 140-character post allows quick and easy transmission of information to links yielding websites, videos, podcasts, and interviews— dream resources for busy nurse clinicians. By simply asking, we can receive resources from nurses around the globe.

A PLN is a tool that uses social media and technology to collect, communicate, collaborate, and create with connected colleagues anywhere at any time. Each individual in your network becomes a potential source of information.

The open nature of Twitter means learning networks are no longer confined to closed and private spaces, but are open and public. This increases opportunities for collaboration and learning. By using Twitter, nurses can access the collective knowledge of their peers, engage in discussions and participate in collaborative projects whenever and wherever they like. This engagement requires a high degree of transparency and a willingness to experiment with new ways of learning and connecting within a technology-mediated network.

Many nurses who were early adopters of Twitter have gone on to become thought leaders in healthcare, not surprising given that PLNs seem to promote a great deal of reflection and collaboration. Building a network via Twitter seems to stimulate, for many, the need to express themselves further in blogging, speaking, podcasts, and writing e-books.

Additionally, many nurse leaders develop PLNs to maintain relevancy by following good ideas, rich discussions, and resources. I have found while developing my PLN via Twitter that the healthcare social media community is very welcoming and accepting.

Through PLNs, healthcare professionals exchange methods and strategies. Online discussions and links enable access to materials that are exchanged through networked nurses in real time.

So, how do you actually connect with people you want to talk to? Here are four easy ways to jump into the right conversations with the right people for your professional interests. Try spending 15 minutes a day interacting on Twitter and you will build a robust network. Here’s how:

1. Seek out the authors of the content you read

Who are the social influencers in your area of expertise? One of the best places to start is websites you go to for content. Check out the authors—people who contribute to on- line publications usually have a social presence, too. Follow them on Twitter and comment on their articles. Take it a step further and tweet some feedback. Giving a compliment with insight on the topic goes a long way.

Twitter can be a great source of information, but it can also be one of the noisiest places on the web. A great way to find people, filter tweets, and join a conversation is to search for keywords related to the topics you’re interested in. For example, if you work in management, a place to start would be a key phrase like “nurse leaders.” Seems simple—but this isn’t a perfect science, and it requires some trial and error to see which keywords get you the results you want. For example, you might also try “nursing” or “healthcare leaders.” Play around with different versions, and join the conversation when you find something of interest. Reply to people’s tweets and give your feedback or comments.

Scan your notifications and take a peek at who is following you. When it’s appropriate, connect with these people, thinking about why they might have taken the time to follow your profile. Are they in your field? In your community? A nurse researcher? Reaching out not only shows you’re paying attention, but also shows you’re open to forming new professional relationships.

Twitter chats are great forums for discussions—members often share articles, ask questions, and start online conversations with each other. Lucky for us, we have our friends at Symplur who built The Healthcare Hashtag Project (

http:// www.symplur.com/healthcare-hashtags

). It is the single most important tool I use to locate Twitter chats, healthcare topic hashtags and conferences. You can build a network of trusted colleagues beyond your organization. Learn how to use Twitter and become comfortable with the healthcare communities being built. Share ideas, answer questions, and don’t be afraid to ask for advice.

And, you are always welcome to call me—the phone is still my favorite social media tool!

Articles

Feature Story

Nurses can access the collective knowledge of their peers, engage in discussions, and participate in collaborative projects whenever and wherever they like.

Create a Personal Learning Network With Twitter 

	Associate Professor, Michigan State University College of Nursing

It was another great summer evening in Michigan, and my best friend was at the door ready to go on our daily run as we prepped for the Chicago Lung Run that was going to take place in the fall. I had never participated in any kind of run previously but thought it was for a good cause, and my best friend’s enthusiasm for running fueled my motivation. My friend had always been a runner, and I could always count on her showing up at the door each night for our training run.

This evening the weather was great as we began our jog through the streets of my neighborhood. Like most nights, my friend was having no issues with the run while I labored trying to keep up with her. We had just completed our run and walked into my kitchen when my friend staggered and fell to the floor. She was glassy-eyed and confused, and I immediately rushed her to the emergency room, as my friend had no other family member. I have been a nurse for 30 years working in critical care but never the “family member” for a loved one, and the unknown was scary.

The ER personnel walked me through the tests they were running and what they were looking for. My friend was off-the-chart hypoglycemic, and they immediately gave her a bolus of glucose to stabilize her and then shifted their focus to the potential cause. The ER staff answered each of my questions, and I appreciated their candor letting us know the ramifications of the situation. They were also in constant communication with my friend’s primary care physician, going through her health history and ensuring all pertinent post-episode tests were run. Unfortunately, the worst fears of the ER staff and the primary care physician were confirmed: my best friend’s hypoglycemic episode was the result of an insulinoma—a rare, deadly, pancreatic tumor that lives off the body’s glucose.

The diagnosis of an insulinoma was a shock. Not being familiar with an insulinoma, the primary care physician answered a number of questions. What were the options? What were the ramifications? Was she susceptible to having her blood sugar freefall again? The primary care physician was patient and went through each option and the immediate ramifications of living with this cancer. The choice was made to have surgery at a university hospital specializing in resecting these tumors.

My friend and I met with the surgeon and she answered each of my questions in detail.

As the primary caregiver, I really appreciated the time she took explaining the procedure, the ramifications of the surgery, and what to expect the day of the surgery. The surgery lasted nearly 3 hours. The surgeon met with me immediately after and explained that while the surgery had been a success, the tumor appeared to have satellites to the liver, and the prognosis was not good. With diet and chemotherapy, my friend may be able to live up to 6 months.

While I knew this was a potential outcome from our meeting with the surgeon the night before, it was still a shock that my running partner I could never keep up with a few weeks ago was now living with a terminal illness.

The postsurgical transition home was made easier as the surgical nurses detailed how to care for the incision and the importance of taking the pain medications as prescribed, as well as how to be active while balancing rest and sleep, and to eat healthy while keeping up the blood sugars. The nurses also ensured we had follow-up appointments to ease the transition from surgical recovery to end-of-life care.

I learned that being a healthcare professional provides little solace during these situations and only amplifies the limitations of medicine. While none of the news was good, the news was delivered by the various members of the healthcare team in a respectful manner, ever cognizant of the audience. While I held my best friend as she passed, I couldn’t help but reflect on the excellent healthcare she had received and how they had paid special attention to me—the caregiver&mdash;and my needs. I also reflected on how incredible it would be if this same level of healthcare could be given to people and their caregivers. My best friend and running partner was my 7-year-old golden retriever, Frosty.

Unfortunately, many patients and their caregivers are not afforded the same level of care my pet received. Health systems are overburdened, leaving healthcare providers stressed with little-to-no time to go beyond meeting the immediate need of the patient. Coordinating care of patients through their healthcare transitions takes time, but if done successfully, can result in seamless, coordinated care where patients thrive. Likewise, ensuring patients and their primary caregivers are given the proper information to successfully manage their illness is critical, as both the patient and their primary caregiver will play a significant role in how the patient manages the recovery trajectory.

While I loved my Frosty dearly, many of us will have to face the reality of cancer, heart disease, diabetes, and a multitude of other comorbid conditions with our grandparents, parents, children, and friends. When we do, wouldn’t it be nice if we as caregivers did not need to worry about making sure all providers involved knew what medications were prescribed, what tests were run, or having to rely on a Google search to see what we should expect postsurgery or what the side effects of medications might be?

Coordination of care and educating patients and their caregivers, to optimize their self-efficacy to manage their care in partnership with the healthcare team, needs to be the standard of care throughout the survivorship trajectory. Hopefully, in the near future, all healthcare will be equivalent to that received by me and my best friend Frosty.

Partner Perspectives

Coordination of care and educating patients and their caregivers needs to be the standard of care.

Switching Places: From Nurse to Caregiver 

We, as collaborative navigators, became the village that helped a patient and her family. The story started calmly enough. As the gyn/onc nurse navigator, I was alerted to the needs of a woman we will refer to as Alice (who, upon the unfolding of her story did, indeed, seem to have stepped through a looking glass). It appeared that Alice was in need of a generous measure of psychosocial support as she began her treatment for ovarian cancer.

I established a relationship with Alice and her daughter Irene (pseudonym) while she was an inpatient and then followed her as her adjuvant chemotherapy was initiated. I visited with Alice and Irene each chemotherapy cycle, and we easily bonded in conversation. They both also came to our LIFT (Ladies in the Fight Together) monthly support group where they bonded with the other women. Our then American Cancer Society navigator, Erin Elliott, was able to get Alice a lovely wig which she enjoyed wearing.

Alice also fit the qualifications for our CCL (Cancer Care Liaison) program (aged ≥65 years, with Medicare parts A and B), and thus Jace Longnecker became part of the team as her designated CCL. Jace was able to support Alice in many ways, including finding a source for gas cards for her to make it easier for her to get to treatment.

One morning Jace called me to say that in his extensive conversations with Alice, she had revealed to him that she had her microwave stuffed with hot dogs. This alerted the ever-vigilant Jace to what appeared to be significantly aberrant behavior, so he called me and I, in turn, made a referral to our behavioral health department. After interviewing the patient, they determined that there was evidence of psychological hoarding behavior which I reported to her gynecologic oncologist and his team.

During one of Jace’s CCL weekly follow-up calls, Alice reluctantly shared that she had become dizzy while working in her garden, fallen, and now had a significant infected facial bruise. She was having chemo- therapy at that time and was reticent to call her doctor, so Jace took the initiative and reported the situation to her gynecologic oncologist who immediately placed her on antibiotics and adjusted her chemotherapy cycles accordingly. Jace also touched base with me, so I could call the patient and remind her she could call me with any clinical issues that came up.

Our patient was subsequently readmitted to the hospital for an infection in her leg, and I visited with her and Irene who was with her mother daily, as did Kourtney Carter, our then navigation social worker.

One afternoon when Irene was leaving for the day, she, Kourtney, and I began to chat, and Irene began describing her childhood, and she tearfully recounted that her mother had been extremely emotionally distant to her and her siblings to the point of withholding food. She said she had become severely anemic at one point. Irene said none of her siblings were interested in helping with her mother’s care but that she, as a born-again Christian, was compelled by her faith to be present for her mother.

This was apparently an extremely cathartic moment for Irene, and Kourtney and I supported her emotionally as she wept for several minutes. She later shared with us that this was the first time in her life she felt totally safe to express her feelings about her mother.

Jace and our behavioral health department were informed and were better able to support our patient and her daughter going forward. I also shared this new information with the patient’s medical team.

Looking back, the care of this patient and her daughter was incredibly enhanced by those of us who collaborated in her care—each of us bringing our own unique skills to the table and sharing with each other so that we actually synergized each other’s efforts. Our individual contributions to her care created a safe and therapeutic environment&mdash;not only for Alice, but also for her daughter, who needed ongoing support in her caregiver role.

To me, this showcases our unique navigation program at Northside Hospital Cancer Institute where we are able to support our patients and their families with a truly holistic and healing approach. Many times when patients and families are catapulted into a cancer diagnosis, the complexities of care can send them into a seemingly parallel universe where they feel overwhelmed with emotions that heretofore had been tamped down in the hustle and bustle of everyday life.

As navigators, whether clinical (as in oncology nurse navigators), or logistical (as in the supportive care cancer care liaisons), we have an opportunity to give our patients a sustaining framework to regain a sense of self and purpose in their lives as they proceed through the maze of cancer treatment. This blended and collaborative care model is the foundation of patient navigation in cancer care.

Nurse Navigators

Supporting patients and families with a truly holistic and healing approach.

The Moving Parts of a Village

		Betsy Hullender Quinn, MSN, MA, RN, OCN

This year has seen an array of new therapies for people with lung cancer. FDA approval of two immunotherapies to treat non-small cell lung cancer (NSCLC), an ever-expanding understanding of the disease’s molecular differences, and new screening guidelines for high-risk patients to detect lung cancer at an earlier, more treatable stage, are helping patients live longer.

Nevertheless, not every patient’s tumor will have the genomic profile to benefit from the targeted agents, and for those who do, coping with treatment-related adverse events can be a challenge. The stigma that comes with lung cancer also endures, with assumptions made that a person with lung cancer must be a smoker, even though recent research is showing that incidence among never-smokers is rising worldwide.

What does this good news—bad news picture mean for the oncology nursing professional practicing today? Nurses will be supporting patients who are living longer with lung cancer (and their caregivers) and also are likely to encounter more patients with the disease as the population ages and knowledge of genomic and other risk factors advances.

One aspect upon which all experts agree is that lung cancer is a complex diagnosis, and a robust navigation program can make a huge difference for patients.

Betsy Hullender Quinn, MSN, MA, RN, OCN, has been the Thoracic Oncology Program coordinator at Memorial Health Care System in Chattanooga, Tennessee, for the past 4 years. She is the point person when a patient’s lung cancer is first diagnosed at her hospital, most often via referrals from an interventional pulmonologist. When they are first diagnosed, “patients are so overwhelmed—they don’t even know what they don’t know,” explained Quinn. She has put together a packet of information, in plain language, that she gives them during her initial visit, and she also helps to connect patients and families with whatever resources they may need, be they support groups, transportation services, financial support, or lodging for patients who may have to travel long distances from the surrounding counties in Tennessee, Alabama, or Georgia, that Memorial serves.

“Basically my job is to make sure that all the pieces of the puzzle are put together ... I make sure the necessary follow-up scans are ordered,” Quinn continued, “and that patients get in to see the medical oncologist, the radiation oncologist; they see them pretty quickly, usually within a week or a week-and-a-half.”

Quinn, who has been a nurse for nearly 40 years, praises the multidisciplinary team approach at Memorial that includes smoking cessation support, licensed oncology social workers, dietitians, and a pharmacy nurse, as well as massage and other complementary support professionals providing services such as acupuncture, mind—body therapy, and tai chi, all of which Quinn said patients find really helpful.

Connecting patients with lung cancer with the resources they need is essential, concurs Katie Brown, vice president of Support & Survivorship for the advocacy group LUNGevity. Brown began her career in patient and survivor advocacy following her father’s lung cancer diagnosis in 2002, a time when treatments for lung cancer had remained stagnant for 40 years and re- sources and support for patients and their families were scarce or nonexistent.

The environment is better now, she said, but newly diagnosed patients, especially, are hungry to learn more about the disease:

“They want to understand more about the reality of their disease, but they’re also looking for something to be hopeful for—to know that there are options, be they a plan B or a clinical trial&mdash;a lot of patients tell me that they did not have that discussion with their healthcare provider.”

LUNGevity helps connect patients and caregivers to support groups and other resources in their community, such as rideshare opportunities and copay assistance. While the larger cancer centers may offer an array of psychosocial and other resources for patients and caregivers, Brown noted, “The reality is, a majority of patients are being treated in community hospitals, where there may not be patient navigators or psychosocial support for patients.”

As the class of agents targeting the PD-1/PD-L1 pathway expands in NSCLC, so does the potential population of patients who would be candidates for the groundbreaking immunotherapy, according to leading experts in the field.

Less than a year after the first agent gained the FDA’s approval in NSCLC, systemic immune checkpoint therapy has become the top choice for second-line therapy for patients with metastatic disease that does not harbor mutations for which there are molecularly targeted drugs.

In fact, patients with negative expression levels for the PD-1 ligand, PD-L1, demonstrate response rates to checkpoint inhibitors that compare favorably with the experience of patients who are treated with second-line chemotherapy without the attendant toxicities.

At her institution, Quinn has been involved in clinical trials evaluating the PD-1 immunotherapy nivolumab in lung cancer, and she has been impressed with the results:

“I have several patients doing well on Opdivo, who have failed on the platinum chemotherapy which is so toxic to patients.”

Quinn added that although side effects are fewer with nivolumab than with traditional chemotherapy, patients do mention fatigue. To address that challenge, she said that it is her job to ask such questions as: Are you eating right, what did you eat today, how much are you drinking, are you getting some physical activity, and are you getting out of the house?

On the targeted therapy front, there is also encouraging news, with the addition of osimertinib for patients with the 

 mutation who develop resistance to treatment with a prior tyrosine kinase inhibitor, as most patients do.

Brown said this approval is a welcome development. “For patients with the 

 mutation, a really high percentage of them will grow resistant to their targeted therapy, and Tagrisso is the first FDA-approved drug for patients whose lung cancer has developed resistance to previous treatment and developed a new mutation, 

“The good news,” Brown continued, “is that this is not the only option for people with lung cancer. There are so many other drugs currently being tested in clinical trials, and there will be more options down the road for people who grow resistant to the drugs they are currently taking ... the progress and the pace of research, it’s very exciting.”

Yet alongside this progress, “even today, lung cancer can be a really isolating disease,” Brown acknowledged. “November was Lung Cancer Awareness Month, but it’s not ‘Pinktober.’ We still don’t have a huge focus on this disease.”

Building awareness is a big part of Brown’s role. She said that when she meets with patients, they often talk about being asked, “Did you smoke? With other diseases, there is not the blame put on the patient as with lung cancer.”

Indeed, there are many causes of lung cancer, though smoking remains the biggest risk factor by far. Quinn noted free screenings her hospital hosted for veterans last year, and she received numerous calls from people worried about their exposure to other toxicants, including Agent Orange and asbestos, in addition to second-hand smoke. She added that she is seeing more patients in their 40s with lung cancer who never smoked.

Still, “the stigma from having lung cancer, especially from smokers, is, ‘oh, I have done this to myself.’”

Brown concurred that the face of lung cancer has changed. “It’s no longer the 75-year-old chain smoker.”

“If smoking didn’t exist, lung cancer would still be the 4th deadliest cancer killer ... We really work to emphasize that lung cancer can happen to anyone, that it’s everyone’s disease, and we need to invest in research—every 2.5 minutes someone is being diagnosed with lung cancer.”

Last fall, the Centers for Medicare & Medicaid Services (CMS) announced that it would cover lung cancer screening using low-dose computed tomography (LDCT) for certain asymptomatic former and current smokers, following on earlier recommendations from the US Preventive Services Task Force (USPSTF). The USPSTF decision to give LDCT a “B” rating was a boost for lung cancer screening advocates, because it meant that as of January 2015, insurers must pay for this screening in individuals who meet the high-risk criteria (asymptomatic adults aged 55- 80 years with a 30 pack—year smoking history [equivalent to one pack a day for 30 years or 2 packs a day for 15 years] and who are currently smoking or quit within last 15 years). CMS has also adopted these criteria, although the CMS cutoff for LDCT coverage is 77 years.

Quinn has been involved with this screening program at Memorial since it began, and she has seen positive results. She recently reviewed the screening records for a cancer committee meeting, and reported that 88 screenings had been conducted over the previous two-and-a-half months. Memorial owns several large internal medicine practices in the area which helps get the word out on the benefits of screening.

“A lot of patients are having this done,” said Quinn. I treated a patient who had early screening in June. I spoke with him yesterday, and he’s going back to work, because it was caught very early. He was screened, he was treated, and he’s back to work. That is just one of those things that made my day!”

The American Cancer Society estimates that approximately 220,000 new lung cancers will be diagnosed this year, and an estimated 158,000 will die of the disease, reminding us that lung cancer remains the second-most common cancer for both men and women.

Yet, despite these grim statistics, there has never been more reason to hope.

“I have seen more progress in lung cancer research in the past 5 years than there has been in the last 40. It’s a hopeful time,” said Brown.

LUNGevity hosts HOPE summits every year which are 1-day regional events held throughout the country, as well as a 3-day national conference in Washington, DC, each May. In addition to educational sessions and lectures from top lung cancer experts and scientists, these forums offer an avenue for patients and survivors to meet each other and share their experiences.

“When we began our conferences, the only medical professionals that were involved were the speakers, but today, it’s really not uncommon to have medical professionals, industry partners, and nurse navigators attend our summits to learn more about unmet needs for people with lung cancer ... It’s a great way for them to get to know the people they are serving on a different level, to hear their personal stories, and contribute to the patient—expert conversation.”

Looking ahead, Brown said patients will continue to seek more education about their lung cancer, “so they can jumpstart that conversation with their doctor to find out whether a new treatment option is viable for them.”

“What I always tell my patients is to have hope, faith, and a good support system; these are so important with any kind of cancer, not just lung cancer,” said Quinn.

And, as the nurse and point person they see when they are first diagnosed, Quinn plays a central role in that support system:

“At this point in my career, I feel like this is the job where I have made the most difference. These patients are so appreciative, in part because they are so afraid.

“And, they know that they can pick up the phone and call me. I have talked to folks on the phone for an hour, just because they need to vent, they need to cry, they need to scream. I’m here to listen.”

Caregivers are often the “unsung heroes” of the cancer experience, noted Katie Brown of LUNGevity. “There is a medical team supporting the patient, but we don’t really have anyone supporting the caregiver.”

To address that need, her organization is collaborating with Celgene Corporation on a new program, “Your Journey Together,” which launched in October.

This enhancement to LUNGevity’s Caregiver Resource Center features a series of videos, tip sheets, and other resources to help caregivers transition into their new roles, take care of themselves, and connect with others on the same journey. In addition, a monthly tweet chat (#LCCaregiver) is held at 7 pm CST the first Wednesday of each month. For more information, visit 

Cover Story

FDA approval of two immunotherapies to treat non-small cell lung cancer (NSCLC), an ever-expanding understanding of the diseaseâ€™s molecular differences, and new screening guidelines for high-risk patients to detect lung cancer at an earlier, more treatable stage, are helping patients live longer. 


For Patients With Lung Cancer, New Therapies Offer Reason to Hope

One of the most difficult challenges oncology clinicians face is helping patients to manage the interplay of strong and often conflicting emotions that come with a difficult prognosis.

Patients and their families understandably don’t want to give up hope, so when they see their oncologist, they will put on a brave face and say they want their doctor to “throw everything” at their cancer.

Yet in other moments, perhaps when only a palliative care or nurse practitioner is in the room, they may tell a different story. They will describe symptoms that are interfering with their quality of life, or mention they are worried that their families’ expectations for a cure are too high.

Advice on how clinicians can support patients in striking a balance between these two realities was the focus of a keynote presentation by Vicki A. Jackson, MD, MPH, at this fall’s 2nd Annual Palliative Care in Oncology Symposium.

Jackson, who heads the Division of Palliative Care at Massachusetts General Hospital, suggested that better integration of oncology and palliative care can help.

Such integration requires not only more robust communication among all members of the patient’s cancer care team, but also helping clinicians develop the skills needed to calibrate their discussions with patients so that they can meet them wherever they may be at the time in their desire for prognostic awareness.

“Prognostic awareness is a swinging pendulum,” Jackson explained. “Patients are really ambivalent about these discussions, and their information preferences change.”

Jackson defined prognostic awareness as, “the patient’s capacity to understand the likely dis- ease trajectory and prognosis.”

“With a deeper prognostic awareness, patients can weigh the burdens and benefits of treatment, they can have more meaningful discussions about their goals and values, and they can match their treatment decisions to those goals and values.”

How can clinicians work together to cultivate prognostic awareness? First, stressed Jackson, all members of the oncology team should develop a common understanding of what palliative care means.

“It’s not good enough to say ‘it is more than hospice.’” Rather, Jackson continued, patients need to understand that oncologists and palliative care teams are focusing together on helping them to feel as well as they can for as long as they can and to take care of their symptoms, be they from the cancer itself or its treatment.

Although joint visits where a patient sees both the oncologist and a palliative care colleague are “incredibly helpful,” such visits are not always feasible, Jackson acknowledged. Thus, another way clinicians can support each other is to document any discussions involving a prognostic disclosure on the patient’s chart, so whoever next visits the patient can pick up on how the patient responded.

“Patients integrate different information at different times from different clinicians,” stressed Jackson, and the interrelationships are complex: “The oncologist is interacting with the patient, and palliative care clinicians are having their own interaction. We need to be making sure that our communication is as tight as possible.”

Clinicians also need to understand that a patient’s development of prognostic awareness takes time:

“Prognostic awareness is a series of understandings, and not everyone is going to be on the same page all at once.” Jackson relayed the experience of one patient who told her that she may not always want to hear prognostic information, such as a recent discouraging CT scan result.

On the other hand, letting in a little at a time can relieve the pressure: “There are times when it won’t be overwhelming, and it is therapeutic to think about the hard things ... opening the box to let a little of this information in, and then closing it again.”

Jackson said that gradually discussing with patients the possibility of dying can help cultivate prognostic awareness. Over time, patients will gain practice with thinking about their prognosis, and it will help them to desensitize their fears of talking about prognosis and the trajectory of their illness. Through such a process, patients can build skills in managing the strong emotions that accompany thoughts of their prognosis and begin to reconcile their hopes for the future with the likely reality of their illness.

“I am not implying that in initiating these discussions that we know better than our patients,” Jackson emphasized. However, oncology professionals will have seen hundreds, even thou- sands, of patients with a difficult diagnosis: “We have a sense of what happens ... and we need to help patients through this developmental process, so they can integrate and understand what the likelihood of the trajectory is.”

Armed with that understanding—and given enough time to process it&mdash;patients are more likely to make further treatment decisions that make sense for them, their families, and quality of life. This means not only helping patients to manage symptoms, but also helping them to develop “adaptive coping strategies,” said Jackson.

“Maybe it’s setting that goal to go to Europe over winter break. What has to happen for that to be an enjoyable family experience? Or, how do we help you live well, so you can tolerate these rounds of chemotherapy and still be a mom or dad and pick up your kids from school?”

“We help patients tolerate, over time, the possibility of dying, and plan for and imagine the future,” remaining ever sensitive to the patient’s information needs at that particular moment.

It’s all “very, very tricky,” said Jackson: “The patients are doing their best, and we are doing our best ... It’s not a ‘one-and-done’ conversation. For the vast majority of patients, it’s a process.”

One of the most difficult challenges oncology clinicians face is helping patients to manage the interplay of strong and often conflicting emotions that come with a difficult prognosis. 


Integrated Approach Helps Patients to Manage a Poor Prognosis 

	Erica M. Palma, RN, BSN, OCN, is a graduate student in the School of Nursing at the University of Pennsylvania and a clinical nurse at Memorial Sloan-Kettering Cancer Center.

Superior sulcus tumors make up less than 5% of non—small cell lung cancers (NSCLC) but are associated with a number of debilitating symptoms that are particularly challenging to treat.

 Radiologist Henry Pancoast first described these tumors in 1924, and they are still referred to as Pancoast tumors. These tumors occur in the apex of the lung and invade the structures of the apical chest wall including the brachial plexus, subclavian vessels, spine, or epidural space, causing a constellation of signs and symptoms known as Pancoast’s syndrome.

 These include severe shoulder and arm pain, Horner’s syndrome, and weakness and atrophy of the hand.

 Other primary or metastatic tumors can also occur in the lung apex causing similar symptoms which are referred to as Pancoast’s syndrome.

The debilitating pain associated with Pancoast tumors involves both nociceptive and neuropathic pain pathways. Treating the tumor itself is the preferred pain management technique.

 Advanced stage and the invasion of various regional structures make resection of Pancoast tumors more difficult than resection of other NSCLC of similar stages. Only 30% to 40% of patients with Pancoast tumors are eligible to receive preoperative concurrent chemoradiotherapy followed by complete resection.

 The survival rate with this ideal treatment is approximately 54% at 5 years.

 Unresectable tumors can be treated with chemoradiation for curative intent; however, no data exist on survival rates for this treatment.

 Treatment with radiation alone has achieved overall survival rates of only 5% to 23%.

 Palliative radiation has achieved good pain relief in about 75% of patients.

Even patients who have a complete tumor resection can experience lingering neuropathic pain. Unfortunately, the literature lacks supportive care guidelines specific to pain management in these patients.

Historically, surgical procedures that disrupt nerve transmission of pain impulses were used to manage Pancoast tumor pain. A number of studies in the 1970s and 1980s reported that neurosurgical procedures, such as cordotomy and selective posterior radiculotomy, provided good to excellent relief from Pancoast tumor pain.

 Other surgical procedures used in these historical studies include decompression laminectomy, phenol block, transdermal stimulation, and stellate ganglion block.

In current practice, these procedures are infrequently performed. The introduction of the WHO 3-step pain ladder, and the subsequent development of cancer pain management guidelines, contributed to this decline. Guidelines such as the NCCN Adult Cancer Pain guideline

 focus on opioid use and adjuvant medications, and surgical interventions are recommended only if medication options have been exhausted.

Introduction of nondestructive techniques such as intrathecal opioid administration, also contributed to the decline in the utilization of surgical procedures. These nondestructive techniques were being developed at the same time that higher standards for evaluating medical literature were evolving. The few studies that supported surgical interventions were older and did not meet the new standards. Because evidence supporting the use of many of these procedures was lacking, fewer procedures were performed, resulting in decreased opportunities for medical training and fewer providers available to perform these procedures.

Opioids and other analgesics have well-known limitations in the management of cancer related pain. Side effects such as constipation and sedation can negatively affect quality of life. Physical dependence, tolerance, breath depression, hyperalgesia, and immunologic dysfunction can also occur and lead to termination of opioid use.

 System-related barriers include cost of analgesics and a lack of access to them, especially in minority and low socioeconomic status communities.

Furthermore, some evidence demonstrates that the development of opioid-induced pain sensitivity is mediated through neural mechanisms that may interact with the mechanisms underlying the development of neuopathic pain.

 This suggests that Pancoast tumor pain specifically could be improved with the use of fewer opioids and more interventional strategies.

Several authors have argued that specific surgical procedures are very useful in the treatment of Pancoast tumor pain and should not be thought of as options of last resort. In 2011 a review of literature from 1966-2009 on the use of destructive surgical techniques to treat cancer pain was conducted.

 Cordotomy was the most studied procedure. It was cited in 47 papers and used to treat 3601 cancer patients. While many of the studies were dated, retrospective, and difficult to grade, pain was assessed 6 months post-procedure in over 100 patients and three of the studies assessed patients until death. The vast majority of the patients reported excellent pain relief postcordotomy. The review included one prospective study that demonstrated statistically significant improvement in pain, performance status, activities of daily living, and total sleeping hours postcordotomy.

Recently, CT-guided cordotomy was prospectively studied in 108 patients with lung cancer experiencing intractable pain.

 Ninety-eight percent of all the patients reported significantly improved pain relief and performance status following cordotomy. Specifically in the 15 Pancoast tumor patients, the median pain score on the Visual Analogue Scale decreased from 8 preoperatively to 1 postoperatively, and the mean Karnofsky Performance score increased from 40 preoperatively to 70 postoperatively (

Collectively, these authors advocate for more widespread use of cordotomy in patients who experience unilateral somatic pain below the neck that is nonresponsive to standard analgesic therapy or if patients are experiencing analgesic side effects. Cordotomy can be used in terminal cancer patients, even in the last weeks of life, to promote comfort and quality of life. The hospital stay is short, only local anesthesia is required, and overall charges are low.

Pancoast tumor pain can be an agonizing experience for patients, their families and loved ones. While the current national pain management guidelines may be appropriate for many types of cancer-related pain, the medication-based recommendations in these guidelines do not provide adequate pain relief for the many of these patients. Given the complexity of the pain pathophysiology seen in Pancoast tumors, and the positive results found in a small body of older and more recent research, surgical therapies such as cordotomy should be considered more often and earlier in the illness continuum.

More research is needed to determine which surgical interventions offer the most benefit and how they can be incorporated into relevant pain guidelines. Incorporating these interventions into medical training is critical in order to assure that there are enough providers adequately prepared to deliver these interventions.

1. Peedell C, Dunning J, Bapusamy A. Is there a standard of care for the radical management of non-small cell lung cancer involving the apical chest wall (Pancoast tumors)? 

2. Jett JR. Superior sulcus tumors and Pancoast’s syndrome. 

3. Kozower BD, Larner JM, Detterbeck FC, Jones DR. Special treatment issues in non-small cell lung cancer: Diagnosis and management of lung cancer, 3rd ed: American College of Chest Physicians evidence-based clinical practice guidelines. 

4. Parissis H, Young V. Treatment of Pancoast tumors from the surgeon’s perspective: reappraisal of the anterior-manubrial sternal approach [published online November 4, 2010] 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2992054/

5. Pourel N, Santelmo N, Naafa N, et al. (2008). Concurrent cisplatin/etoposide plus 3D-conformal radiotherapy followed by surgery for stage IIB (superior sulcus T3N0)/III non-small cell lung cancer yields a high rate of pathological complete response. 

6. Rusch VW, Giroux DJ, Kraut MJ, et al.  Induction chemoradiation and surgical resection for superior sulcus non-small-cell lung carcinomas: Long-term results of Southwest Oncology Group trial 9416 (intergroup trial 0160). 

7. Van Houtte P, MacLennan I, Poulter C. External radiation in the management of superior sulcus tumor.  

8. Batzdorf U, Brechner VL. Management of pain associated with the Pancoast syndrome. 

9. Esposito, S, Bruni P, Delitala A, et al. Therapeutic approach to the Pancoast pain syndrome. 

10. Swarm RA, Abernethy AP, Anghelescu DL, et al. Adult cancer pain. 

11. Raslan AM, Cetas JS, McCartney S, Burchiel KJ. Destructive procedures for control of cancer pain: The case for cordotomy. 

12. Kanpolat Y, Ozdemir M, Al-Beyati E. CT-guided percutaneous cordotomy for intractable pain in what is more than a disease: lung malignancies. 

13. Mao J. Opiod-induced abnormal pain sensitivity. 

Superior sulcus tumors make up less than 5% of nonâ€“small cell lung cancers (NSCLC) but are associated with a number of debilitating symptoms that are particularly challenging to treat.

Revisiting Surgical Interventions for Pancoast Tumor Related Pain

Navigation is an essential component of quality care for patients with lung cancer and their family caregivers, and the Bonnie J. Addario Lung Cancer Foundation (ALCF) is working to improve lung cancer outcomes through its Community Hospital Center of Excellence (COE) program.

The program, which launched a 12-month pilot program in 2013, defines a standard of care for treating patients with lung cancer with the objective of accelerating detection and improving treatment. Centers that adopt and practice the standard of care are awarded a formal seal of excellence by ALCF.

“We started this program asking, ‘How can we reach people that don’t have the benefit of reaching us first? How can we ensure that they’re directed to the best standards of care?’” explained Danielle Hicks, ALCF’s senior director of Patient Services and Programs.

Following an improvement in overall progression-free survival during the pilot period, the official COE Program kicked off in 2014.

According to ALCF, 80% of patients with lung cancer receive treatments at their local community hospitals, and the organization advocates for multidisciplinary care with pathways including early detection, diagnosis, treatment, and survivorship follow-ups.

Currently, there are 13 official COE sites in Alabama, Florida, Tennessee, Texas, California, Illinois, Wisconsin, and North and South Carolina.

“It’s not good enough for hospitals to say that they treat patients. We want to know what happens to those patients, and we want to make sure that they go through the entire process,” Hicks said.

“Nurse navigation is key to making this work. Without a dedicated nurse navigator walking these patients through the process, we found that they absolutely don’t work. Nurses are one of the most integral parts of the multidisciplinary team.”

Participating hospitals must work within the guidelines of the National Comprehensive Cancer Network (NCCN) and the COE program.

The ALCF collects data monthly from the centers’ nurse navigators to analyze areas of performance including patient volume, survival rates, readmission rates, number of referrals, and stage of diagnosis.

Some of the outcome objectives include an increase in patient volume, early detection, progression-free survival, percentage of patients receiving molecular testing, and the number of patients referred for clinical trials. The program also aims to reduce the number of patients dying within 30 days of diagnosis, reduce 30-day readmission rates, lower emergency room visits, and save lung cancer—related costs.

Of the more than 3000 patients throughout the 13 COEs, 100% are molecularly tested compared with 70% prior to the COE program, and the average time from diagnosis to treatment is 14.5 days. The national average is 40-45 days.

Additionally, 21% of patients are living with cancer for at least 3 years, 26% were diagnosed at stage IIb or lower, and nearly 100% survived beyond 30 days.

“True multidisciplinary teams start with early detection and follow the patient through survivorship,” Hicks said. “We knew that this approach would help the patient, but once we had the data, we hit the ground running.”

Along with recognizing hospitals that use a multidisciplinary approach in caring for lung cancer, ALCF also works with hospitals that are not multidisciplinary to help them implement such services and programs.

Hicks said that with the recent advancements in therapies for lung cancer, some centers are not up to date on their equipment, particularly for targeted radiation.

“When it comes to discovery and how fast things are happening right now, it’s unreasonable to expect that a general oncologist can keep up with these things in real time,” she said. “We help educate centers on what’s happening with lung cancer right now, and we work with centers where oncology hasn’t always been their focus.”

Additional sites are expected to be recognized as COEs pending a full evaluation. Hicks also said that ALCF plans to host a summit toward the end of 2016 where a representative from each center can benchmark the correlated data from their center against others.

To learn more about the ALCF and COE Program, visit:

https://www.lungcancerfoundation.org/patients/centers-of-excellence/

Navigation is an essential component of quality care for patients with lung cancer and their family caregivers, and the Bonnie J. Addario Lung Cancer Foundation (ALCF) is working to improve lung cancer outcomes through its Community Hospital Center of Excellence (COE) program.


Improving Outcomes in Lung Cancer With Multidisciplinary Care

Patients with lymphedema may significantly reduce their chances of skin infection and lower their healthcare costs with an advanced pneumatic compression device (APCD), a newly published study has found.

Researchers analyzed 718 patients with cancer-related and non-cancer—related lymphedema who used an APCD at home over a 5-year period. They evaluated clinical events and associated costs for a 12-month period prior to and during a 12-month period of treatment. The APCD used for the study was the Flexitouch System, developed by Tactile Medical.

Use of the APCD was associated with a nearly 80% reduction in rate of cellulitis episodes among patients with cancer-related lymphedema (from 21.1% to 4.5% [

 < .001]) and a 75% reduction in patients with non-cancer lymphedema (from 28.8% to 7.3% [

Additionally, the total lymphedema-related costs per patient in the cancer cohort were reduced by 37% (from $2597 to $1642 [

 = .002]). The decline in costs for the non-cancer cohort was 36% (from $2937 to $1883 [

“Based on patient reports from my work, patients have told me that they perceived that they had benefits of the device, so we thought that we would find something, but these are much more profound results than what we were expecting in terms of reduction results,” noted study coauthor Sheila Ridner, PhD, RN, FAAN, the Martha Rivers Ingram Professor of Nursing at Vanderbilt University School of Nursing.

Fellow researcher Alan T. Hirsch, MD, professor of medicine, epidemiology, and community health in the Cardiovascular Division at the University of Minnesota Medical School and chief medical officer of Tactile Medical, added that he was also surprised by the results.

“I think to our knowledge this is the very first lymphedema study that really looked at the health and economic impact. Even though we knew pumps were beneficial before the study, it was very gratifying to have such a good study where people clearly feel better and it costs less,” he said.

Patients with cancer can be at a particular risk of developing lymphedema if their cancer cells block lymphatic vessels or if their lymph nodes are removed or damaged during surgery or treatment. The condition causes painful tissue swelling, which if left untreated, puts the patient at high risk of infection and cellulitis episodes and can result in loss of function and reduced quality of life.

Complete decongestive therapy (CDT), which consists of manual lymphatic drainage, compression techniques, and self-care, is commonly used to treat patients newly diagnosed with lymphedema.

Patients with lymphedema may significantly reduce their chances of skin infection and lower their healthcare costs with an advanced pneumatic compression device (APCD), a newly published study has found. 


December 2015