I was working as an oncology nurse navigator in 2007 in Atlanta. I had been in the position just a year and considered myself an empathetic, compassionate oncology nurse who knew how to talk with patients and their families and how to help them. Little did I know how much my world was about to change and how much I would learn about being on the other side.

That day in May when I got the phone call that was about to change my world, I can remember just where I was standing. My father had been hospitalized in Pennsylvania after routine bloodwork revealed an extremely low hemoglobin and hematocrit. After many diagnostic tests were completed, a physician was on the phone telling me that it looked like metastatic disease.

I am sure I asked some questions, but I remember little to none of the conversation that followed. (Until then, I’d never fully understood when patients and families told me they couldn’t remember that first conversation, and it was surreal to now personally experience this.) That evening, the medical oncologist called me and briskly informed me that my dad had an area on his shoulder appearing suspicious for melanoma. The biopsy was performed the next day, and my father was discharged and told to follow-up in 10 days.

Seeing Firsthand the Value of Nurse Navigation

Frustrated, I realized that this is what it felt like to be at the mercy of the medical system when all you wanted was to get the test results. How valuable the services of a nurse navigator would have been at this point. I tracked down the number to the pathology lab, found a sympathetic ear, identified myself as a nurse, and explained how we were waiting for the results. I was told that the results had been available and had been sent to the physician’s office in question several days before.

I reached my dad via phone the night before his appointment with a melanoma specialist. After we talked, he offered his standard goodbye: “I love you Kath and tell the girls (his granddaughters) that I love them too.”

My father never made it to the appointment. The next day he experienced stroke-like symptoms and seizures and was hospitalized an hour from home. An MRI of the brain revealed three large masses. I was on the phone with my stepmother and called the emergency department trying to get information. The person on the phone informed me that no further information could be given on my dad other than he was brought in.

We were told that there was only a 10% chance he would make it through the night. I remember begging the physician to give me enough time to get home to say goodbye. I flew home that evening and arrived late to find him in the ICU on a ventilator and unresponsive. I sat by his bedside and held his hand and kissed him and told him I loved him.

The next morning to our surprise, we found him sitting up in the bed. He had extubated himself and seemed intent on trying to get out of the bed. His speech was extremely garbled, he was off-balance, and he still seemed confused. After several days of recovery in a step-down unit, the physician wrote discharge orders which included a referral to a hospice agency and a follow-up with his family physician. My stepmother looked at me after the physician left and said, “I don’t know how I am going to do this.” I told her we would do it together. Once again, I longed for someone to help us navigate this maze but in that moment it was ours to accomplish.

I connected with the nurse coordinator at the melanoma specialist’s office relaying what we had been told. Her suggestion was an appointment the following day with their office. The melanoma specialist could not have been more attentive and kind to my parents. He did not minimize the severity of what my dad was facing, but he didn’t dwell on it. He seemed to understand that they needed hope at this point. He arranged for palliative radiation and gave us a referral to his preferred hospice, explaining to my dad that hospice would be able to provide services that others could not, that he met criteria, and if he felt better he could always come off hospice. My parents left the appointment more optimistically.

The next few weeks passed in a blur of appointments and daily radiation treatments. The hospice nurse was a godsend, as she helped us plan for his present and future needs. She served as my sounding board and helped to guide me. The days were long as we drove the 45 minutes back and forth to radiation appointments and struggled to find foods for my dad to eat that he wouldn’t choke on. He was frustrated trying to communicate with us, and he needed our help with the simplest of tasks. The steroids left him unable to sleep, and I remember how drained we were, all of the time.

He fell several times because of weakness in his legs, and watching the eyes of this man who was so independent and proud nearly broke my heart. It wasn’t all bad, though. We enjoyed sunny afternoons laughing and talking with friends and family on the outside patio that he loved so much. My husband and daughters came from Georgia, and soon, sounds of little girl voices also filled the air.

One poignant day my dad indicated that he wanted to shave, and so he sat in the bathroom as I prepared to help him. My 4-year-old daughter took the warm washcloth and patted his face asking, “Does that feel okay, Grandpa?” I swallowed back tears as we shaved him and enjoyed that moment.

We found ourselves in the hospital again, one week later, as dad had a critically low potassium level. I was frustrated by what I perceived to be a lack of communication, but our hospice nurse was able to quickly resolve the situation. I fretted over leaving him alone at night, worried that he wouldn’t be able to call out if he needed help, and I’m sure I drove the staff to distraction with my requests.

After several days, I asked the physician if my father was as stable as he would ever be, and he said he thought so, although he couldn’t be sure. I made the difficult decision to drive home to Georgia with my daughters the next day because school would begin the following week. I planned to return the following Saturday.

I left on Monday morning, stopping at the hospital to see him before I left. His granddaughters kissed him, and I did as well. I told him I loved him. At the last moment, I leaned over and whispered in his ear that he was “the best dad ever.” He smiled and squeezed my hand.

Two days later, on my first morning back in Georgia, the phone rang and my stepmother said simply, “they say he is dying.” I dropped everything to race to the airport again, but halfway there, the call came that he was gone. I was grateful for the time I had spent with him and while heartbroken, I was also relieved that he was not suffering.

When I returned home, several people urged me to take additional time off. “It’s too soon to go back,” they said. “How can you go back to caring for patients with cancer when your dad just died of cancer?” My dad dying of cancer had opened my eyes to the other side of cancer. I needed to go back. I went back to work in behalf of every family hearing for the first time that their loved one has cancer and they need someone to offer comfort and guidance. I went back to help ease the gaps in communication between healthcare providers, departments, and patients. I went back to honor all of the medical professionals who offered my dad the very highest level of care and offered us hope during a dark time. I went back to be an advocate for earlier hospice referrals so that patients and families could experience the greatest benefit of their services. I went back to offer support to exhausted caregivers who needed help and permission to care for themselves. I went back to help family and friends make the most of the time that they have with their loved ones.

It has been almost 9 years since his death. A picture sits on my desk of the two of us. It serves as a reminder that every patient and family I meet as an oncology nurse navigator deserves the care I wanted my father to have.

Kathleen A. Gamblin is Coordinator, Oncology Patient Navigation, at the Northside Hospital Cancer Institute in Atlanta.

Articles

Nurse Navigators

My story serves as a reminder that every patient and family I meet as an oncology nurse navigator deserves the care I wanted my father to have.

Why I Am Passionate About Navigation

One of the most complex features of Twitter for new users to understand is the hashtag, a topic with a hash symbol ("#") at the start to identify it. Twitter hashtags like #NurseTechMonday or #NurseBlogLove help spread information on Twitter while also helping to organize it.

The hashtag is a favorite tool of conferences and event organizers, but it's also a way for Twitter users to organize themselves.  Think of hashtags as keywords, which are easily searchable. A hashtag search on Twitter will show me live results of tweets using my chosen hashtag.

For example, let’s say I see a tweet from someone I follow about a local event, using the hashtag #GoRunWichita. I would be very interested in searching for that hashtag to see what other people, who I don’t follow, are saying about that topic.

Ever wonder who used the first hashtag? You can thank Chris Messina in 2007 on Twitter! However, it wasn’t until the San Diego wildfires when hashtags really took off.

Before you start using hashtags in your tweets, it can be helpful to do a little research first, to find out if the subject you're tweeting already has an established hashtag. Lucky for us, we have our friends at Symplur.com who built 

.  This is quite literally the single most important tool I use to locate healthcare topic hashtags, conferences, and chats.

You won’t want to miss the Symplur blog, either!  It’s full of practical information and analysis of trends in healthcare social media. Check out this 

: “The Life Cycle of Ebola on Twitter.” It’s guaranteed to channel your inner epidemiologist! 

Conference transcripts are great places to find current evidence-based resources 

 connect with key influencers in your specialty.  Symplur has aggregated the Twitter activity from last year’s Oncology Nursing Society Annual Congress to give you an idea:

Source: Symplur — The Healthcare Hashtag Project

Using a hashtag in a social post is as simple as adding the ‘#’ sign before a single word or phrase without spaces or punctuation (numbers are okay). Like this:

Nurses: Think of LinkedIn as your professional anchor online via @thesocialnurse #NurseBlogLove

Just so you don’t get too nervous, here are 3 tips for beginners—and great reminders for all of us:

Don’t string #toomanywordstogether with a single hashtag.

Avoid #spamming #with #hashtags. Don’t over-tag a #single #tweet.

Use hashtags only on tweets relevant to the topic.

Flaunt Your New #Healthcare #Hashtag Wisdom

If you don’t already have a Twitter account, mosey on over to my blog post, 

  It will get you launched into the Twitterverse in less than 30 minutes!

Have a tip to share on hashtags or a unique way you use them? Be sure to share!  And don’t forget to follow @OncNursingNews and @thesocialnurse on Twitter!

_____________________________________________________________________________________

Carol Bush, BS, RN, is an oncology nurse navigator with the Midwest Cancer Alliance. She has a passion for helping medical teams learn to embrace innovation and thrive in a patient-focused environment. An ardent advocate of social media in healthcare, she especially enjoys working with care managers, health coaches, and nurse navigators. Connect with Carol Bush via Twitter @cbushrn.

The Social Nurse

Carol Bush, BS, RN, is an oncology nurse navigator with the Midwest Cancer Alliance. She has a passion for helping medical teams learn to embrace innovation and thrive in a patient-focused environment.

How Healthcare Hashtags Can Help Nurses Share and Build Resources

Diagnosing and treating a patient with a less common cancer can be challenging for practitioners, yet with greater awareness and better diagnostics more of these rare cancers are likely to show up in the clinic.

For this month’s cover story, we talked with a variety of experts on these cancers, and they all agree that to successfully identify and treat them, “knowledge is power.” Whether it’s a myeloproliferative neoplasm or a slow-growing neuroendocrine tumor, understanding the symptoms of rare cancers is paramount. As Mount Sinai Hospital’s Dr. Richard Warner, an expert on carcinoid and neuroendocrine tumors (NETs), wisely points out: “If you don’t suspect it, it you can’t detect it.” NETs, for example, bring symptoms like diarrhea and flushing which are common in many other conditions, and can sometimes be misdiagnosed for years.

Diagnosis is only the beginning. Once a rare cancer is identified, finding specialist guidance and resources is critical not only for the practitioner, but also for the patient and caregiver, who need places to turn to for reliable information and to find individuals to share their experiences with through online communities and support groups.

In some of these rare cancers, misunderstanding and even stigma add yet another layer of complexity. As 

 Editor-in-Chief Lisa Schulmeister writes in her column this month, “Not So Pretty In Pink,” although diagnosis and treatment of male breast cancer is similar to that of breast cancer in women, the experience of breast cancer among men is very different. These men often feel very alone, having a diagnosis which accounts for only 1% of all breast cancers. Similarly, as nurse and anal cancer survivor Michele Longabaugh writes in her guest column, “What I Wish My Nurse Knew About Anal Cancer,” she had no idea how isolating being diagnosed with a rare cancer could be, but that “pales in comparison to the ‘solitary confinement’ that a stigmatized cancer like anal cancer can carry.”

A feeling of isolation is not unique to the rare cancer experience. Also in this issue, we talk with sexual health and survivorship expert Dr. Michael Krychman about the impact of cancer on intimacy. Krychman urges nurses and other clinicians to raise these issues with patients and survivors during clinic visits, because doing so can yield relatively simple solutions to improve their quality of life.

As always, we welcome your suggestions and feedback on our coverage, and thank you for reading.

From the Chairman

When You Hear Hoof Beats, Think Zebras

In the United States, 30% of the total cancer expenditure is spent in the last year of the life, and 55% of this is spent on inpatient care. For patients with advanced cancer, most hospitalizations arise from expected disease progression. Smilow Cancer Hospital at Yale New Haven is a 15 story, 500,000 square foot facility affiliated with Yale-New Haven Hospital and Yale Cancer Center. It incorporates ambulatory and inpatient services as well as radiation therapy services, infusion centers, women’s services, radiology, surgical suites, cancer survivorship, and complementary services.

We examined preventable emergency department (ED) admissions during daytime hours. We reviewed oncology ED data over a 5-month period from January 1 through May 31, 2014. A total of 391 patients presented to the ED, and approximately 90% of those patients were admitted. Sixty-two percent of patients arrived to the ED between the hours of 9:00 AM and 5:00 PM, and average length of stay was 6.74 days.

Most hospitalizations resulted from expected disease progression. The five most common admitting diagnoses included: (1) fever/neutropenic fever/sepsis; (2) abdominal pain; (3) altered mental status; (4) dehydration/electrolyte imbalance; and (5) pneumonia/dyspnea. Chart review demonstrated many patients could have been managed in the ambulatory setting with pharmacy, infusion, and palliative care support.

A task force was formed to determine current practices among disease teams and included practice nurses, nurse coordinators, and advanced practice providers (APPs) from solid tumor and hematology disease teams. The task force established guidelines to reduce the number of cancer patients seen in the ED by being evaluated by a skilled clinician in an urgent visit program.

 Yale-New Haven Hospital Joint Data Analysis Team (JDAT); refreshed baseline and post-intervention data with new oncology service line definition.

It is crucial that the same day/urgent visit program have access to urgent palliative care consultation, pharmacy, and infusion chairs. As patient calls come into disease teams, any urgent issues are expedited to a practice nurse and/or APP. The decision is then made whether the patient is appropriate for an urgent clinic visit or ED.

Medical situations which warranted direct assessment in ED and 911 included: (1) loss of consciousness; unresponsiveness; (2) sudden, acute onset of dyspnea/cyanosis; (3) acute chest pain; (4) uncontrollable bleeding/hypovolemic; and (5) unstable, based upon telephone assessment by APP. Urgent visit hours were established between the hours of 7:30 AM and 3:30 PM. Education was pivotal, and appropriate training was provided to patients and their caregivers, intake/clinical secretaries, nursing staff, and other providers, which included physicians, APPs, and oncology fellows. In order to capture urgent visits, we developed a visit type in the electronic medical record called Priority Visit. We implemented our APP Urgent Visit program on July 31, 2014.

 shows the number of APP urgent visits increased since implementation of program. We found that oncology ED visits decreased from 88.2% to 83.9%. Notably, 79% of patients seen as priority visits were treated in the ambulatory setting and discharged to home; 18% of patients were seen as urgent/priority visits and after evaluation by APP, it was decided they needed to be admitted through direct admission process; and 3% needed a higher level of care and were transferred to the ED 

. This is compared with almost 90% of patients who present to ED first and get hospitalized.

Table 2: Urgent Care Visit Dispositions/Transfers

The initial 6-month evaluation of the urgent visit program shows promise. As demonstrated, educating, raising awareness, and implementing an urgent visit program can reduce ED use and number of hospitalizations. Ongoing education and reinforcement are needed to reinforce the value of the urgent visit program. To sustain and further decrease the number of patients presenting to the ED, an urgent care program requires a high level of committed and skilled personnel, as well as space, and the establishment of a designated urgent care unit is at Smilow Cancer Hospital is currently being evaluated.

Partner Perspectives

Educating, raising awareness, and implementing an urgent visit program can reduce emergency department use and number of hospitalizations.

Urgent Visit Program Aims  to Reduce ED Admissions

Neuroendocrine tumors (NETs) are rare, difficult to diagnose, and can be found nearly anywhere in the body. More than 100,000 people in the United States are living with NETs, and that number is increasing by 5% every year, as the medical profession becomes more aware and diagnostic techniques have improved.

Yet misdiagnosis remains an ongoing challenge, and a recent international study involving more than 100 countries and nearly 2000 patients revealed the average case takes between 5 and 9 years to properly diagnose after the first symptoms appear, and the average patient may see five or six doctors, noted Richard R.P. Warner, MD, in an interview with Oncology Nursing News.

“You can’t detect it, if you don’t suspect it,” said Warner, who directs the Center for Carcinoid and Neuroendocrine Tumors at Mount Sinai Hospital. Most doctors will only see one or two cases in their lifetime, and symptoms of NETs, like diarrhea and recurrent episodes of flushing, are associated with other, more commonly seen conditions.

He added that to complicate matters even further, “no two samples of tumors are exactly identical.” The treatment has to be customized for each case and depends on where the tumor is located and how much it has spread.

Carcinoid tumors are the most common type of NET, and about two-thirds appear in the gastrointestinal (GI) system, particularly in the small intestine, rectum, stomach, colon, and liver. Up to 40% of GI carcinoid tumors produce enough hormone substances to create symptoms, and this is called carcinoid syndrome. The syndrome occurs more rarely (<10%) with lung carcinoids. The syndrome is characterized by diarrhea and a dry (unlike the more moist menopausal) flushing; patients typically will get hot and red in the face, Warner noted.

“In many cases, the symptoms of carcinoid syndrome are worse than the symptoms from the growth of the tumor itself,” noted Laura Metcalfe, MSN, RN, APN-C, AOCNS, an advanced practice nurse at John Theurer Cancer Center in Hackensack, New Jersey. “For those patients experiencing the sometimes intractable diarrhea, their quality of life can be greatly impacted.”

A novel agent, telotristat etiprate, has produced promising results for the relief of the diarrhea associated with carcinoid syndrome. In the phase III TELESTAR trial reported at the 2015 European Cancer Congress, the oral agent reduced the number of daily bowel movements by 35%. Warner explained that the drug blocks the tumors from manufacturing an excess of serotonin, which accounts for much of the diarrhea.

On February 26, 2016, the FDA approved everolimus (Afinitor) for the treatment of adult patients with progressive, well-differentiated non-functional NETs that are of GI or lung origin. Data from the RADIANT-4 study showed that the agent, which was previously approved for patients with progressive, metastatic pancreatic NETs, led to significant improvements in progression-free survival in patients with locally advanced or metastatic GI and lung NETs, and adverse events were consistent with the known safety profile for everolimus.

Somatostatin analogs, a synthetic hormone therapy, are a standard treatment for NETs. A new drug lanreotide (Somatuline Depot Injection) received FDA approval in December 2014 and marked the first drug in this class to demonstrate a statistically significant improvement in progression-free survival.

As with the majority of rare cancers, practitioners should seek out advice from specialists when they suspect a patient has carcinoid or other NETs. Warner said that he often gets phone calls from community-based physicians, and he recommends that practitioners contact the Carcinoid Cancer Foundation (CCF), which lists specialists in every state on its website and can also refer patients to support groups.

A group like CCF is especially helpful, Warner noted, because “patients are often adrift when they get this diagnosis, and their doctors may not be familiar enough with it to give them valid information.”

“These tumors should not be treated and do not behave the same way as ordinary cancer,” stressed Warner. It is sometimes referred to as “cancer in slow motion”:

“Because of that, some people erroneously consider it benign. It’s not. It’s cancer, but it’s very slow.”

), founded in 1968, has been voted the #1 best resource for information on carcinoid, notes expert Richard Warner, MD. In addition to information and resources for healthcare professionals and patients, CCF hosts support groups in states across the country and internationally. The Neuroendocrine Tumor Research Foundation (previously known as Caring for Carcinoid) supports research to discover cures and more effective treatments, and also provides information and support for those affected by NETs (

Cover Story

Misdiagnosis of neuroendocrine tumors remains an ongoing challenge, and a recent international study involving more than 100 countries and nearly 2000 patients revealed the average case takes between 5 and 9 years to properly diagnose after the first symptoms appear, and the average patient may see five or six doctors.

Understanding Neuroendocrine Tumors and Carcinoid Syndrome

 The man stands at the counter in the Breast Center at my local community hospital, and before he has a chance to speak, the receptionist points to the door and tells him that the hospital and testing registration areas are down the hall. I’m waiting to have a mammogram, and hear the man say that he, too, is scheduled for a mammogram. A few minutes later, we both are dressed in pink flowered gowns as we sit in the mammography waiting area, which has pink-striped wallpaper, pink chairs, and even pink carpet. The man is visibly uncomfortable here, and tells me that he went to a surgeon to remove what he thought was a cyst, but the surgeon suspects breast cancer. “I didn’t even think men could get breast cancer,” he adds.

Breast cancer is rare among men; only 1% of all breast cancers occur in men. However, the American Cancer Society estimates that 2600 men will be diagnosed with breast cancer in 2016 and 440 men will die from the disease. For men, the lifetime risk of getting breast cancer is 1 in 1000, whereas for women, it’s about 1 in 8. This rate increases in men with genetic mutations to 1% to 5% with 

Men generally don’t consider themselves at risk for breast cancer; consequently, it’s not unusual for men to be diagnosed with a more advanced cancer compared with women diagnosed with breast cancer. Men also have a shorter life expectancy after a breast cancer diagnosis.

While women typically choose lumpectomies for breast cancer, a lumpectomy is usually not an option for men because their tumors most commonly occur behind the nipple in an area with little breast tissue. Most men also don't have reconstructive surgery after a mastectomy. Nipple reconstructive surgery is available, but men may not be aware of this option. Although diagnosis and treatment of male breast cancer is similar to the diagnosis and treatment of female breast cancer, the experience of breast cancer among men is very different.

Mammography facilities need procedures for performing mammograms on men that recognize the need for sensitivity. Having men enter the imaging area from a side door, providing gender-neutral gowns, and avoiding waiting areas decorated in pink and filled with women are simple strategies that can reduce men’s unease.

Men newly diagnosed with breast cancer need a great deal of support, in part because of how rare breast cancer is in men, and because the typical reaction to a breast cancer diagnosis is one of disbelief. Even clinicians may shy away from intervening because of their unfamiliarity with male breast cancer. Referral to breast cancer support groups may actually not be helpful and may change the dynamic of the group, which is typically all female. However, there are resources available to men with breast cancer. The website 

 was launched in 2009 by a brother and sister who had both been diagnosed with breast cancer. They encountered difficulty in locating information about breast cancer in men, and created the dedicated website.

 in January 2016 published a book titled Breast Cancer inFocus: 

, which is a guide intended to serve as a resource to help men cope with a breast cancer diagnosis and prepare them for issues that they are likely to face. Issues include the stigma of a breast cancer diagnosis, the general lack of knowledge about breast cancer in men, and limited research about its treatment.

Because of the rarity of breast cancer in men, it’s often difficult for men to locate a support group for men or find a “buddy” who has been diagnosed with the same disease. Men with breast cancer can connect online with other men with breast cancer by visiting the discussion board forum “Male Breast Cancer” at www.Breastcancer.org.

Historically, research on breast cancer has only involved women, which limits how research findings can be applied to men with breast cancer. Fortunately, research on the causes, prevention, and treatment of breast cancer in men is now under way in many facilities around the world.

Lisa Schulmeister, MN, RN, ACNS-BC, FAAN is an oncology nursing consultant and editor-in-chief of Oncology Nursing News.

Nurse's Notes

Men newly diagnosed with breast cancer need a great deal of support, in part because of how rare breast cancer is in men, and because the typical reaction to a breast cancer diagnosis is one of disbelief. 

Not So Pretty in Pink

“You have anal cancer.” Six years after hearing those very words the whole diagnosis still sounds surreal to me. I had anal cancer, and as a registered nurse with over 20 years of experience under my belt, this was unbelievable. I had never even heard of anal cancer.

I soon learned that my cancer was defined as being quite rare. In my geographic area it was quite uncommon with only approximately 10 cases diagnosed per year. Needless to say, it was something that most of the healthcare providers treating me had rarely or never dealt with. Being on the other side of the stethoscope was a new and eye-opening experience for me as well, and the learning curve was steep.

I had no idea how isolating being diagnosed with a rare cancer could be. But that pales in comparison to the “solitary confinement” that a stigmatized cancer like anal cancer can carry.

So, your patient has anal cancer. I think there are a few key things that you can do that can make a tremendous difference. These involve treatment education, research opportunities, and connecting to support groups and resources. Don’t wait for your patient to ask, because they probably won’t. I didn’t.

The treatment regimen for anal cancer is brutal, involving simultaneous chemotherapy and pelvic radiation. Understanding the treatment challenges and side effects facing the patient with anal cancer, both short and long term, are important. Knowledge is power, so helping to educate patients and caregivers on what to expect and what the plan of action will be when the side effects occur only serves to benefit all involved.

This goes far beyond the nausea and vomiting that chemotherapy brings. It extends to skin care for radiation burns, bladder and bowel control both before and after treatments have concluded, diet intolerance and nutrition, pain management, and sexual dysfunction. Pelvic floor physical therapy plays a vital role in optimal recovery for patients early after anal cancer treatments have concluded.

We all know that research plays a valuable and critical role for cancer patients. Rare cancers like anal cancer do not have large volumes of research studies available. When faced with caring for less frequently seen cancers, take the opportunity to update yourself on what’s currently available and where it is being offered. Providing reliable information on larger centers that offer research studies for anal cancer patients is beneficial.

Finding local or virtual patient and family support resources was impossible for me in 2010. Things have changed for anal cancer since I first “googled” it and thankfully so, but support on the local level remains scarce. The squeamish nature of the anus alone is enough to silence even the most outgoing individual. Add to that the stigma that anal cancer carries and you have a recipe that compounds the isolation. Providing reliable anal cancer—specific support sources with active peer-to-peer programs can positively impact your patient. Having a safe forum in which to comfortably speak is imperative.

So, your patient has anal cancer… Arm yourself with knowledge and information and then share that openly with the patient and caregivers. Don’t wait for them to ask, because I know for a fact that they probably won’t. I didn’t.

Michele Longabaugh is a wife, mother of three children, registered nurse, and small business owner in the Midwest. In February 2010, she was diagnosed with stage IV anal cancer. She hopes to shatter the stigma and fight the loneliness that accompanies this devastating type of cancer. Follow her on Twitter at @CrazyAssCancer.

) has excellent medical patient/caregiver resources and a peer-to peer-program, and 

I had anal cancer, and as a registered nurse with over 20 years of experience under my belt, this was unbelievable. 

What I Wish My Nurse Knew About Anal Cancer

Myeloproliferative neoplasms (MPNs) are “still in their infancy in the cancer world,” notes Rebecca N. Claassen, RN, BSN, OCN, who specializes in the care of patients with these blood disorders at the University of Kansas (KU) Cancer Center. Until 2008, MPNs were classified as myeloproliferative diseases, and like other rare cancers, the biggest challenge with MPNs is that they are not well-known.

MPNs include three disorders: polycythemia vera (PV) and essential thrombocytosis or thrombocythemia (ET), and primary myelofibrosis. PV and ET can progress to the most serious of the three conditions—myelofibrosis&mdash;a chronic blood cancer which involves a scarring of the bone marrow.

For patients with PV or ET, the severity varies by disease burden, but the prognosis is good. PV occurs when the body produces too many red cells and is most commonly seen in men >60 years. Therapeutic phlebotomy is the standard treatment, and if that’s not enough, explained Claassen, hydroxyurea, and in some cases, interferon, will be needed to treat the condition.

ET is marked by an increased number of platelets in the blood without a known cause. It is most prevalent in women >50 years, and frequent symptoms include blood clotting and bleeding. Claassen herself has ET, having been diagnosed shortly after she started working in the hematology clinic at the KU cancer center. She explained that her disease burden is very low, and she is being successfully treated with low-dose aspirin.

Myelofibrosis is treated with hydroxyurea, interferon, and ruxolitnib (Jakafi), which was approved by the FDA in 2011. Ruxolitinib is an oral JAK1 and JAK2 inhibitor typically prescribed in 15- to 20-mg doses twice daily. In 2014, the FDA extended its approval of the drug to patients with PV who are resistant or intolerant to hydroxyurea. An investigational agent to treat myelofibrosis, pacritinib, was 

 by the FDA last month following reports of patient deaths related to intracranial hemorrhage, cardiac failure, and cardiac arrest in the phase III PERSIST-2 trial.

Because of the bone marrow’s inability to generate new blood cells in a patient with myelofibrosis, the liver and spleen become responsible for producing new blood cells. The spleen often becomes enlarged in these patients. Other health issues associated with the condition include anemia, night sweats, and muscle and bone pain.

 magazine’s MPN Hero Awards, stressed the importance of understanding the side effects of MPNs—not only the conditions themselves, but also their treatments.

“A lot of the side effects that people present with happen to go with older age, with the majority of people being diagnosed with these disorders in their 60s and 70s,” Claassen explained, for example, joint pain and fatigue, but these are also signs of MPNs.

“It’s important to know what those side effects are, and also what the side effects of the treatments are, to best support that patient,” she continued. She added that side effects should not be dismissed because patients are older, and nurses need to emphasize with patients that relief is available for their pain and fatigue.

As the nurse educator, she encourages her peers to keep up on the research by utilizing available resources, staying educated, and using the networks of specialized organizations like the MPN Research Foundation, because “the field is really so new and ever-evolving.”

Claassen also stressed the importance of participating in clinical trials, and this is especially true for the high-risk patient. She said that several myelofibrosis studies are under way at KU Cancer Center, and she encouraged nurses and patients to look for relevant trials which can be found on the National Institutes of Health ClinicalTrials.gov website.

“Nothing can cure these conditions, so we need new ways to slow them down and manage them.”

), and the Leukemia & Lymphoma Society’s myeloproliferative neoplasm page at (

) offer resources and information for HCPs, patients, and caregivers.

Myeloproliferative neoplasms (MPNs) are “still in their infancy in the cancer world,” according to Rebecca N. Claassen, RN, BSN, OCN.

March 2016