What do you do when you are enjoying one of the most exciting times in life with a new baby on the way and then WHACK—you are diagnosed with breast cancer during pregnancy? How do you even get your head around this situation? This was supposed to be a happy time of anticipation, selecting paint colors, planning baby showers, and choosing names&mdash;not which oncologist to see or deciding what surgery to have which may limit your ability to breastfeed.

While uncommon, this reality does exist. Pregnancy and a breast cancer diagnosis each come with their own set of emotions and physical changes; combine them and these women and families find themselves in great need of support: Enter the nurse navigator whose role here is paramount. If you meet a patient who is pregnant with a breast cancer diagnosis, a nurse navigator is invaluable, and there are many important considerations.

			How did the breast cancer diagnosis come about?

			What workup has she had so far? Mammography may be needed to evaluate extent of disease (and safe with shielding).

			What has she been recommended thus far?

			Does she need to see a surgeon first for initial evaluation/second opinion, a medical oncologist, or both?

			What are the woman’s surgical goals?

			What family or social support does she have?

Oncology appointments need to be coupled with maternal fetal medicine (MFM) and/or family planning to plan out the timeframe of the care plan, usually week-by-week. Neoadjuvant chemotherapy may be recommended to get a woman to delivery, followed by surgery. We can’t give chemotherapy too close to delivery due to infection risk and to avoid a nadir at delivery.

Alternatively, and depending on the treatment plan, the mother may be recovering from surgery or receiving chemotherapy and trying to care for a newborn at the same time. These are all considerations for providers and patient, and a nurse navigator can help to reinforce the recommendations. We can help weigh options and give insight into what the process is for chemo-therapy, side effects, or surgery and recovery. While we don’t make the decision for the patient we can certainly answer questions and give women things to think about: Will she have help at home? Are there other children? Is her family complete? How can she best plan ahead? What does her ongoing care look like?

What happens when a woman is already being treated for breast cancer and becomes pregnant?

I met Melanie, a 31-year-old mother of two young girls, during her first breast cancer diagnosis. She was referred to me for additional support and guidance throughout her treatment. Her surgeon recommended neoadjuvant chemotherapy for her stage III cancer, which usually warrants a navigator’s involvement due to many initial needs and decisions to make early on in care. At the time, she was separated from her husband and had limited support, but did live with her mother and brother. Much of her other family was in Ethiopia, but at various points in time her aunt or cousin would come to the United States to help. She had previously worked as a hairstylist but had stopped working when she was diagnosed.

Melanie had a few lapses in medical assistance throughout her care, and her only source of income was child support. As a navigator collaborating with our social workers, we were able to get her the insurance coverage she needed to receive her treatment, as well as apply for some financial grants to help defray some costs.

Once she finished chemotherapy, Melanie had a decision to make about what surgery to have: unilateral or bilateral mastectomy, and autologous or implant-based reconstruction. We spoke at length and over the course of a few weeks about her surgery options. She was worried about her recovery time and caring for her children as well as her own health and risk reduction. How quickly could she get back on her feet? Would she be able to lift her girls? How will they react? Who will bring her back for appointments if she can’t drive? Ultimately, she chose a bilateral mastectomy with flap reconstruction after a last-minute change in her prior decision for implant-based reconstruction. She recovered from her surgery as expected and started on tamoxifen therapy.

At this point, I hadn’t had much contact with her since things were going well. About 9 months later, she developed hip metastasis and stopped tamoxifen. She declined additional endocrine therapies due to her feeling that because her treatments didn’t work the first time, why should she do more?

Fast forward a few more months and I received a call from her oncologist asking me to come to clinic to attend her appointment. Melanie was newly pregnant. She had metastatic breast cancer. My initial thought was, “who was the father?” since the last I had heard she was separated from her husband. They had reconciled, and even with contraceptive counseling from her oncologist, she still became pregnant. What to do now?

A team was quickly mobilized with oncology, family planning, and MFM. We were able to get her seen by all of the providers to help her gain information about her options. Should she terminate the pregnancy or does she keep the baby? Time was of the essence in her decision in order to support her health and that of her baby. I’ve always been proud of my ability to handle tough situations as a nurse, but what do I say to a woman who is not only my age and pregnant but has metastatic breast cancer? I was at a loss for words. She knew me well and was not looking for answers from me, rather just support, so in hindsight I think my silence was okay, and she knew I cared.

We walked out of the appointment together, and I gave her my arm because she couldn’t walk very well. She looked at me and just said “Can you believe it?” Not very emotional, not angry, not upset, just very matter-of-fact. At first I wasn’t sure she comprehended the severity of the situation. I was wrong. She heard everything. She was as thoughtful about her decisions as she had been since the beginning, not as outwardly emotional as many of my other patients. Her steadfast faith was about to become much more evident and relied upon.

After meeting with the various providers, I spoke with her to offer her more support. She weighed her options and was trying to be realistic. She didn’t know how to make this decision and couldn’t ask some of the people in her life because of their own beliefs and biases. Either way, she had risks: risks of her cancer worsening with no treatment, limited ways to manage her pain and also potential risks to her baby. As a team, we reinforced to her that either decision would be supported by us, and there would be no judgment. Ultimately she chose to keep her baby. I’ll never forget what she said to me about her decision. “The pain of not having the baby will be worse than any cancer pain.” The team supported her decision.

A plan was quickly formulated to offer her supportive care and symptom management as well as support her pregnancy. Pain management was involved to help with medications. MFM monitored her pregnancy, and her oncology team worked to coordinate all of the efforts. She was in and out of the hospital for pain management and fluids throughout her pregnancy, and home care was provided to help support her needs at home.

At 28 weeks, Melanie delivered her baby boy, by C-section, at a healthy 5 pounds, probably with a bit of the help from the steroids she was taking. He had a NICU stay because he was premature but otherwise no problems. She chose a name meaning “God will get you through it.”

Close to her discharge from the hospital, her nursing team threw her a party. She was going to go home on hospice and hopefully get back to Ethiopia. The cake the nurses bought her said, “You inspire us.” My patient made it back to Ethiopia for a month and was able to return to the states. She lived about 5 more months and died peacefully at home.

Our work with our patients naturally brings us close—to some patients more than others. Our experience teaches us many lessons: in this case, the value of collaboration, navigation, and the grace of a patient in the face of a unique and challenging situation were ever present. As nurses, some patients’ stories endure. This one will stay with me forever. Yes, Melanie, you continue to inspire us. Thank you for that.

Eleanor Miller, RN, MSN, OCN, CBCN, manages the navigation program at the Abramson Cancer Center of the University of Pennsylvania in Philadelphia. She has been a nurse for 8 years, all spent in oncology, and an oncology nurse navigator for over 3 years, serving multiple specialties. Her work includes multiple process improvement projects to improve access to oncology care. Miller has spoken at local and national conferences about her projects and serves as a clinical preceptor for graduate nursing students. She was nominated and completed the PENN Futures Program which identifies and trains future healthcare leaders.

Articles

Nurse Navigators

If you meet a patient who is pregnant with a breast cancer diagnosis, a nurse navigator is invaluable, and there are many important considerations.

Navigating Pregnancy and a Breast Cancer Diagnosis

Though once merely an intriguing research question, harnessing a patient’s own immune system to kill tumor cells is now a reality in cancer treatment, offering fresh hope to many patients who may have run out of options.

Three immunotherapy drugs are currently FDA-approved in the melanoma setting (ipilimumab, pembrolizumab [Keytruda], and nivolumab [Opdivo]). Nivolumab is also approved for the treatment of squamous non—small cell lung cancer (NSCLC).

The FDA recently assigned a priority review designation to pembrolizumab as a treatment for patients with advanced NSCLC across all histologies. With more positive findings for nivolumab reported at the recent American Society of Clinical Oncology (ASCO) annual meeting, the drug’s manufacturer, Bristol-Myers Squibb, announced that it will seek FDA approval for the agent to treat the more common, non-squamous NSCLC subtype.

For Marianne Davies, DNP, MSN, CNS, ACNP, AOCNP, an oncology nurse practitioner at the Smilow Cancer Hospital at Yale-New Haven and an assistant professor at the Yale School of Nursing, immunotherapy really has changed the face of lung cancer treatment:

“We are seeing phenomenal responses in patients that have non—small cell lung cancer,” Davies said during an interview with Oncology Nursing News at the recent Oncology Nursing Society (ONS) Annual Congress where she presented on the topic. “We are actually seeing long durable responses for these patients. They are living several years after therapy.”

“The field of targeted immunotherapy gets more exciting every year,” concurred Lynn M. Schuchter, MD, as part of a press briefing on immunotherapies for multiple hard-to-treat cancers she moderated at the 2015 ASCO Annual Meeting. Schuchter is division chief, Hematology/Oncology at Penn Medicine, and melanoma program leader at the Abramson Cancer Center at the University of Pennsylvania.

“We’re rapidly moving past the era in which immunotherapies are seen as breakthroughs for melanoma alone,” Schuchter continued. “Remarkably, these drugs are proving effective in other cancers where practically no other treatments work. Just as important, it’s possible that we’ll be able to pinpoint, in advance, which patients are the best candidates for these therapies.”

As immunotherapy expands into the treatment for many cancer types, how will this impact oncology nursing practice? Which patients are most likely to respond to immunotherapies? What are the most important considerations when caring for these patients?

For the oncology nurse, immunotherapy represents an exciting new way of treating patients with cancer, but also a challenging one, as this treatment approach varies from cytotoxic and targeted therapies in many important ways, noted Davies. Immunotherapy drugs differ, not only by their mechanism of action, but especially their adverse event profiles, which require careful monitoring by clinicians and an understanding of how these drugs work by patients so they know what to report back to their nurse before a side effect becomes a crisis.

And, importantly, these drugs are not for everyone.

Because immunotherapy works by activating T-cells to attack the cancer, they can also inflame healthy tissues, meaning that patients with autoimmune conditions, such as lupus, rheumatoid arthritis, and Crohn’s disease, who already have a hyperactive immune system, are not appropriate for the therapy. “It has the potential to have a significant increase in morbidity, perhaps even mortality for those patients,” Davies cautioned. Similarly, patients with a prior organ transplant or history of liver damage would not be good candidates for the therapy.

Steroid use is another important consideration when doing a baseline medical history, unless the patient can be tapered off them, Davies said. In addition to steroids, patients should be monitored for all prescription and nonprescription medications, including vitamins and herbal supplements.

Patients with more aggressive tumors may need chemotherapy which works faster, Davies added: “Immunotherapy really doesn’t work that way. It takes time for your body’s immune system to be restored to recognize the tumor and have effect. The times of responses or reduction in tumor burden may be variable and may not be appreciated until 12 weeks or even after discontinuation of therapy.”

Educating Patients—and Their Caregivers

The most common side effects reported by patients are fatigue, musculoskeletal pain, and nausea. These are typically mild. However, there is a unique side effect profile that nurses, practitioners, and patients need to be aware of: immune-related adverse events (IRAEs).

Although serious IRAEs are infrequent, treatable, and respond well to steroids, “patient education is incredibly important,” said Davies. Teaching should begin prior to the decision to initiate immunotherapy and include both patients and their caregivers, because early recognition of any IRAEs is essential to effective treatment. And, unlike chemotherapy, these events tend to be delayed.

“Oftentimes the onset might be 8, 10, even 12 weeks after the start of therapy. We might see a few of the minor side effects a little earlier on, but we need to tell patients, ‘yes, you’ve done well for a few months, but now we may begin to see some side effects. Sometimes the side effects can occur after you’ve discontinued the therapy.’”

Patients can be reassured that clinicians will be monitoring their blood counts, potential side effects, and doing a full review of their systems. IRAEs tend to involve anything that becomes inflamed—anything that can have an “itis” or an “opathy,” Davies explained. “Any organ system can be affected, and a patient can have many organ systems affected.” 

And, the onset of IRAEs of different organs may not occur at the same time.

					Thyroiditis, hypophysitis, hypopituitarism, adrenal insufficiency

					Central and peripheral; aseptic meningitis, Guillain-Barré syndrome, myasthenia gravis

Cover Story

As immunotherapy expands into the treatment for many cancer types, how will this impact oncology nursing practice? 

Immunotherapy in Cancer Care: Educating Patients About What to Expect

As immunotherapy agents enter into greater clinical use in oncology, clinicians are learning to manage immune-related adverse events (IRAEs) related to the mechanism of action of these new drugs.

In this article, Michael A. Postow, MD, of Memorial Sloan Kettering Cancer Center, an expert in immunotherapies for melanoma, offers practi&shy;cal advice for administer&shy;ing immune checkpoint inhibitors to patients.

FDA-approved drugs in this category are ipilimumab, which targets CTLA-4, and nivolumab and pembrolizumab, which inhibit PD-1. All three agents are approved for the treatment of patients with metastatic melanoma; nivolumab also is indicated in metastatic non—small cell lung cancer while pembrolizumab is under review in that malignancy

Q: What are the most important IRAEs associated with these therapies?

For ipilimumab and for PD-1 inhibitors as well, the most common side effect is dermatologic toxicity. Typically, the rashes that people will have are erythematous, a red rash occurring on the trunk, arms, or lower extremities.

With ipilimumab alone, the dermatologic toxicity onset is typically within the first month, even after the first dose of treatment. Rash or dermatologic toxicity, however, can happen at any time after the first dose, and, at least with ipilimumab, I have seen them occur after all four doses have been given, even when the patient has tolerated the initial treatment course well.

Q: What are the less commonly observed adverse events with these agents?

For ipilimumab in particular, a less common side effect is an enterocolitis/colitis-like event, which typically manifests as diarrhea. Although less common than skin rash, this is a more dangerous event that clinicians need to understand. This is more common with the ipilimumab-type drugs than with the PD-1 drugs, but it can occur with both. If it occurs, the diarrhea or enterocolitis will typically set in after the second or third dose.

Although less frequent than colitis and diarrhea, endocrinopathies may also occur, as well as hepatitis or inflammation of the liver. The frequency of these events depends how one defines the endocrinopathies and hepatitis and their severity, but generally these would rank as number three and four after dermatologic events and diarrhea. One type of endocrinopathy that often can be hard to diagnose is hypophysitis, which is inflammation of the pituitary gland; this may present as headaches, fatigue, and other nonspecific symptoms.

Q: What are the general strategies for managing these events?

Rash is typically managed first with topical corticosteroids, such as triamcinolone cream, hydrocortisone cream, or another low-potency corticosteroid. If that is insufficient, some people require oral steroids for very severe rashes, or [rashes] that affect so much of the body surface area that the cream cannot be applied successfully. Some patients will just have a lacy, faint, erythematous rash that doesn’t bother them, and some patients will just be itchy without a rash, which can also be problematic, since people can be very bothered by itching. The maximal treatment one would ever consider for a rash, if it were terrible—which is, fortunately, very rare &mdash;[is when] people would come into the hospital for fluids, electrolyte management, and IV steroids. In most cases, though, the rashes can be managed and the drug can be continued.

Diarrhea can happen with or without colitis in about a third of patients, and can be significant in about 10% of patients. In terms of treatment, first you would ensure that you have excluded other etiologies, for example, 

or other infectious types of diarrhea. Typical treatment, when you have substantial diarrhea, is oral corticosteroids, so prednisone, orally. The ipilimumab package insert has algorithms with number of stools per day and so on to recommend discontinuing treatment, but in the broad context, if patients are on steroids for anything more than a mild situation, they generally don’t resume ipilimumab. Imodium, other types of antidiarrheals, and a bland diet can also help if the symptoms are mild.

Drawing a thyroid stimulating hormone (TSH) level and a liver function test (LFT) is required before starting, and with each dose of ipilimumab endocrinopathies or hepatitis can be detected [often] in this way. Patients with events such as LFT abnormalities will often not be symptomatic, and these can usually be corrected with oral steroids. Endocrinopathies can be more difficult to correct. When an endocrinopathy ensues, it’s typically a permanent problem, which means patients will need to take hormone supplements long term, usually for life.

Q: Have any notable differences in IRAEs emerged for the anti-CTLA-4 versus the anti-PD-1/PD-L1 agents?

In my experience, the anti-PD-1/PD-L1 agents have been less likely to cause significant side effects than anti-CTLA-4 agents like ipilimumab. There are a lot of theories as to why that might be the case; some think it may be due to the fact that [anti-PD-1/PD-L1 agents] are acting at the point where the tumor cells are interacting with the T cells, which keeps some of the activation of the immune system localized in the tumor itself, as opposed to more nonspecifically and systemically throughout the body. Others think that agents like ipilimumab work in part by depleting regulatory T cells throughout the body, which may also account for the more systemic immune stimulation with ipilimumab versus the anti-PD-1/PD-L1 agents.

Q: Are there any rare/serious AEs associated with these therapies about which clinicians should be especially vigilant?

Pneumonitis, or lung inflammation, with the anti- PD-1 agents, is very important because it did, unfortunately, result in some treatment-related deaths. This is particularly important now that anti-PD-1 agents like nivolumab are expanding into indications like lung cancer. Patients may experience, for example, fever or shortness of breath that can be attributable to many other causes within this disease state. Pneumonitis may be treated with steroid immunosuppression or IV steroids as needed, and some patients may require bronchoscopy to exclude infection as part of the differential diagnosis. Other rare neurologic conditions may also occur; we have had patients with aseptic meningitis, sensory and motor neuropathies, and even Guillain—Barré syndrome, and I mention these [because] they can be life-threatening if not recognized and treated appropriately.

In addition, patients who have IRAEs requiring steroids or other immunosuppressive agents like infliximab for diarrhea, or sometimes mycophenolate for transaminitis that is not responsive to steroids, have, in some anecdotal cases, acquired opportunistic infections as a result of their subsequent immunosuppression.

 infection that we recently reported in the literature. I would stress that, so far, these have been only isolated cases, and it’s not clear whether this type of event may become an epiphenomenon with increasing use of these agents, but it’s certainly another possible event to be aware of.

Michael A. Postow, MD, of Memorial Sloan Kettering Cancer Center, an expert in immunotherapies for melanoma, offers practical advice for administering immune checkpoint inhibitors to patients.


Managing Immune-Related Toxicities:  Q & A With Dr. Michael Postow

Just as electronic health records revolutionized the healthcare industry for nurses and doctors, patient portals are giving patients new ways to access their healthcare information and communicate with members of their healthcare team.

And while many practices and hospitals across the country offer patient portals to all their patients, those with chronic diseases, such as cancer, seem to benefit the most from the portal.

“Our patients might have a greater need [for the portal] simply because of the nature of their illness,” explained Sheila Ferrall, RN, Director of Nursing Practice, Education and Clinical Effectiveness at Moffitt Cancer Center in Tampa, Florida. “I think it’s very empowering for patients to go in and look at their results."

Patient portals give patients the opportunity to see test results, read their doctor’s notes, access educational information about their disease, and even communicate electronically to manage appointments or ask their healthcare team questions.

And patients with cancer seem to like having their medical information at their fingertips.

A recent study conducted by David Gerber, MD, an associate professor of internal medicine at UT Southwestern Medical Center in Dallas, found a sharp increase in the number of cancer patients using MyChart, the patient portal that the hospital uses.

The results found that over a 6-year period, the number of patients actively using MyChart each year increased fivefold, while the number of total log-ins each year increased more than tenfold.

Patients most commonly used the portal to view test results (37%), view and respond to clinical messages (29%), and send medical advice requests (6.4%).

Patient portals are fed information from electronic medical records (EMRs). In 2009, the American Recovery and Reinvestment Act provided financial incentives for providers to adopt electronic health record technology and meet meaningful use objectives, but some providers were using EMRs before that.

“Electronic medical records…are a widely implemented and accepted component of patient care and the portal is a key part of that,” Gerber said.

Extending Care Between Patients and Practices

By providing patients with secure 24-hour access to information specific to their health, patients have the time to become more educated about their condition and get more involved in their care.

In fact, the study that examined the use of MyChart at UT Southwestern Medical Center found that 37% of all log-ins and 31% of all medical advice requests occurred outside of clinic hours.

“It’s really about being more engaged,” said Jennifer Trageser, the associate director of portal technology product management at McKesson Specialty Health. “Empowering the patient in their day-to-day decisions, increasing health literacy…is really important in the oncology space.”

McKesson Specialty Health’s patient portal, My Care Plus, was rolled out in 2012 and now reaches and impacts nearly 218,000 oncology patients across the nation.

My Care Plus syncs up with McKesson Specialty Health’s iKnowMed or iKnowMed Generation 2 EHR platforms so patients can access their vital signs from their visits, see lab results and view summaries of their visits and assigned care plans that were recorded in the EHR.

Trageser explained that although the EHR and patient portals are synced, patients can only see the “common data set,” which consists of demographic data, conditions, vitals, lab results, visit summaries and care plans.

“There is a variety in the patient portal market—some portals limit the data being provided to the common dataset, and other portals expand beyond that dataset to include imaging reports, physician notes, and more,” she said.

By expanding information to the patient, you’re also expanding information to their caregiver, Trageser noted.

“Patients are able to provide access or share their health information with caregivers who may not be able to make every doctor’s appointment,” she said.

Pros, Cons, and the Future of Patient Portals

The idea of providing patients instant and constant access to all their healthcare information, as well as a line of communication to healthcare providers, allows practices to continue to improve healthcare treatment.

Because patient portals allow specific information to be sent to each patient, a triage nurse can send messages to patients reminding them to take their Day 1 oral medication, or an infusion nurse could follow up with a patient about the potential side effects that might occur after their treatment, continued Trageser.

“And this creates a highly personal engagement with that patient…it’s not waiting for the phone call—it’s building a relationship with an electronic way that can shared at any point in time by patients or their caregivers.”

But there are also some potential problems with patient portals.

“I think there are opportunities and I think there are also areas that we need to approach cautiously,” Gerber said.

For example, if patients are given access to test results prior to an appointment with their doctor, they might misinterpret the findings.

“I think it’s very important that we think about how patients are interpreting this information,” Gerber said.

And while the idea of being able to send a message to the healthcare provider might seem like a quick and easy way to get an answer, Gerber cautioned that might not be the case.

He noted that in this day and age, society has a growing expectation that text messages and emails are instant. But when it comes to using the portal to communicate with healthcare providers, messages are not guaranteed to be answered immediately. “To what extent can we ask patients to have the medical knowledge to triage their own questions and symptoms?”

Some of these concerns with patient portals are just extensions of issues in current practice, Gerber explained.

“We’re still not perfect in person or on the phone. All aspects of clinical care in oncology are entities that we are always trying to improve,” he said. “I think as electronic patient portals are used by more and more patients and used more intensively and frequently by those patients, I think we will all grow with this experience to try to optimize this technology.“

Nurses have always been at the center of patient interaction. So it’s no surprise that they have a key role when it comes to patient portals.

“Gerber said that at his practice, it is primarily clinic nurses who manage MyChart. This includes sending messages regarding appointments and prescriptions, as well as responding to and triaging incoming questions from patients.”

Ferrall said at Moffitt, EMRs were put into place about 3 years ago, and new features were slowly introduced. And while the patient portals are fairly new, the nurses seem to enjoy having the patient portals because they help empower and educate their patients.

“It gives the patient access to information that they often want, and it allows the nurse not to have to be the middle in terms of providing that information,” she said. “Patients can go directly to the portal to access information.”

Feature Story

Patient portals are giving patients new ways to access their healthcare information and communicate with members of their healthcare team.

For Patients With Cancer, Web-Based Portals Can Inform and Empower

It’s really no surprise that the buzz at the major oncology meetings these days centers on how immunotherapy is being deployed in the treatment of many hard-to-treat cancers—moving far beyond the melanoma setting where the approach has already proven so successful.

Following on the FDA’s approval of nivolumab to treat the squamous form of non—small cell lung cancer (NSCLC), more approvals are being pursued for immunotherapeutic agents to treat all subtypes of NSCLC buoyed by impressive clinical trial results. Additionally, at the recent annual meeting of the American Society of Clinical Oncology, findings from multiple clinical trials suggest that immunotherapies are gaining ground in renal cell carcinoma, pancreatic and liver cancer, glioblastoma, in the head and neck setting, and for hematologic malignancies, among others. And, importantly, researchers are beginning to discover how mutations, biomarkers, and an individual’s cancer cell DNA can help to identify which patients are most likely to respond to these new agents.

As exciting as these findings are, immunotherapy represents a whole new way of treating patients with cancer. This therapeutic approach presents a very different profile—and trajectory&mdash;of side effects, because unlike traditional chemotherapy agents, these immune-related adverse events may occur weeks and even months after treatment has begun. In the words of Marianne Davies, a thoracic nurse practitioner who has worked extensively with immunotherapies in the clinic, “patient education is incredibly important.”

Who better than the oncology nurse to be front and center in that effort?

, Davies and other experts offer insights on how you can help your patients understand the type of side effects to expect if they are candidates for immunotherapy, and they all stress that careful monitoring and early reporting of symptoms—no matter how small&mdash;is essential for patients to continue their treatment and reap the most benefit.

Also in this issue, we hear from an oncology nurse who tragically lost her husband to prostate cancer at a young age yet is determined to use that experience to raise awareness of how 

 mutations can be complicit in prostate cancer, especially in younger men with more aggressive tumors.

Technology continues to spread its tenets into practically every aspect of healthcare, and increasingly, patients are using web-based portals to see their test results, access information about their disease, and otherwise communicate electronically with their healthcare team. We talked with several experts about how these patient portals are working in practice, and the consensus seems to be that for the most part, oncology patients like them.

The field of cancer care is ever changing, and our goal is to bring you expert insights on these developments through the pages of this journal and our website Nursing.OncLive.com. Let us know what you’d like to learn more about, and as always, thank you for reading.

From the Chairman

It's really no surprise that the buzz at the major oncology meetings these days centers on how immunotherapy is being deployed in the treatment of many hard-to-treat cancers-moving far beyond the melanoma setting where the approach has already proven so successful.

Immunotherapy-Transforming Cancer Care, Offering Patients New Hope

		Lisa Schulmeister, RN, MN, APRN-BC, OCN®, FAAN

Oncology Nursing Consultant, Adjunct Assistant Professor of Nursing

		Louisiana State Health Sciences Center in New Orleans, Louisiana

It’s hurricane season again for those of us who live in hurricane-prone areas, and time for us to review our preparedness plans. We all need to be prepared for weather-related events, regardless of where we live. No one is immune from a severe rainfall or snowstorm, ice storm, flooding, earthquake, tornado, or heat wave.

Oncology treatment centers have flooded from raging rivers, as well as from broken pipes inside the building. Major snowstorms have kept patients and staff in the facility overnight. One nurse I know remembers stepping over a deep gap in the floor, caused by an earthquake, when evacuating patients.

We’ve all heard the saying “Prepare for the worst,” and it’s good advice when planning for the unexpected. In cancer treatment centers large and small, it’s best to be proactive and have a defined plan.

The first step is to identify the kinds of events that have the potential to affect your facility, keeping in mind that fires can be caused by things other than wildfires and power outages can occur even in the nicest weather. Consider every possibility, no matter how remote it may seem. Next, list some immediate actions, followed by short-term actions, and then long-term actions. Include the key players—patients, people accompanying the patients, and staff&mdash;and don’t overlook others who might be in the facility, such as delivery personnel, volunteers, and even pet therapy animals.

Immediate actions may involve evacuation of a treatment area, or even evacuation of the building. It’s imperative that facilities have an evacuation plan that includes a variety of scenarios, such as evacuating in darkness, using the stairways instead of elevators, or evacuating without the assistance of first responders, which could be necessary if a widespread disaster occurs.

Depending on the situation, the short-term plan may be to shelter in place. In this scenario, what resources are available—or might not be available&mdash;to patients, staff, and others? Think first about basic needs, such as food, water, shelter, and toilets. Is enough food available or accessible to feed the group overnight? Is there sufficient drinking water on hand? If the power goes out, and there is no heat or air conditioning, how will patients be kept warm or cool? If the sewage system stops working, what is the plan?

The short-term plan also may involve continuing cancer treatment somewhere else, until repairs are made and/or the facility is safe to return to. Logistically, moving the treatment area is a huge project and requires careful planning. Larger facilities generally have more resources than small ones, but even in small facilities there are options, such as contacting other small oncology providers or community hospitals to identify resources. For example, when a small oncology practice flooded when a pipe froze and broke, another oncologist invited the practice to use his office in the afternoons.

Longer-term plans may involve a move to a new or different facility, and in some cases, permanent transfer of patient care to new providers. This occurred in New Orleans, where I live, after Hurricane Katrina. It was not uncommon for patients to resume cancer treatment in facilities far from home. In many cases, though, patients did not have their medical records, and in some cases, had limited knowledge about their disease and treatment history. Complicating the situation was the inability to contact the patient’s provider, since cancer treatment facilities in New Orleans were shut down for weeks, and some never reopened. Remote access to electronic medication records is now more commonplace, and essential for oncology providers in disaster-prone areas.

Disaster plans also need to include staffing considerations. In the event of a widespread weather event, staff may want to leave to check on their families and homes. How will staff respond if patients and others—including staff&mdash;are injured during the event? It’s a lot to think about, and not at all pleasant; however, a well thought-out plan prepares and reassures the staff, comforts the patients, and minimizes cancer treatment interruptions and delays.

Nurse's Notes

In cancer centers large and small, it's best to be proactive and have a defined disaster preparedness plan.

Preparing for the Unexpected

“Linda, I’m going to die!” The strained voice was that of my former husband Michael in a message left on my work phone. I had not expected to hear from him during the day since he was undergoing a prostatectomy; my son and I planned to visit him in the hospital after work. I certainly didn’t expect to hear those words.

It was 2008, and weeks earlier Michael’s prostate biopsy 

 showed cancer. I say finally, as it was one of many biopsies performed in the face of a rising PSA. The surgery was to be “routine,” and a good surgical outcome was anticipated. He was likely to be one of those men that did well following surgery and perhaps radiation. Unfortunately, the prostatectomy was never completed.

At the hospital that evening, Michael relayed the surgeon’s message: extensive cancer, stage IV disease, and a prognosis of 2 years. What? This was shocking news, and a strong sense of failure followed for not having caught this earlier.

As an oncology nurse for more than 20 years, I knew the majority of men with early prostate cancer did very well. My own father was a classic example, having been diagnosed and treated with leuprolide for the last 3 years with hardly a break in his stride.

Michael proceeded with the usual next steps: radiation and androgen ablation treatment. His PSA never went to zero. Within 1-2 months following completion of radiation, his PSA began to rise, suggesting disease progression. It never seemed to really stop much. The addition of bicalutamide had little effect. Referral to medical oncology followed.

In the back of my mind, I had a nagging thought and eventually mentioned it to Michael. Could he have a genetic mutation, namely

, which was playing a role in the aggressiveness of this cancer?

A few years prior, in 2003, we were contacted by an agency that assists adopted people in finding their biological family. I received a phone call from a woman asking unusual questions about the whereabouts of Michael’s parents (both deceased). The memory of suspicions by one of Michael’s sisters came to mind: she recalled as a child that their mother had gone to the hospital pregnant and returned without a baby. Was that baby given up for adoption?

The answer, as it turned out, was yes, and a new sister, Ann, joined the group of five siblings. Ann had grown up in a very loving and caring family, yet her drive to find her biological family came from an unfortunate discovery.

At age 40, Ann was diagnosed with breast cancer. Having been adopted, she had no family history with which to evaluate hereditary risk. Wisely, her surgeon recommended genetic testing and the results—positive for the 

 mutation—were the driving force behind the search for her biological family. In Ann’s words, “A bolt of energy shot me out of my chair and I 

 exactly what I needed to do. It was no longer just about me or curiosity.”

In our first meeting with the medical oncologist, I explained the situation and asked if it was reasonable to test Michael. Having a copy of Ann’s results, the testing would be specifically for that mutation. The oncologist agreed, and Michael subsequently underwent testing. We were aware that the testing would not benefit Michael, but the implications for our 11-year-old son were clear.

The results came back: “positive for a deleterious mutation” of 

. We were both devastated knowing that our son had a 50/50 chance of inheriting this mutation. We were also informed that Michael’s prostate cancer was likely more aggressive as a result of this mutation. That was certainly clear by this point.

Multiple treatments followed: ketoconazole, docetaxel, and abiraterone. These are all therapies used to treat progressive disease when others have failed. Palliative radiation was used to treat bone metastases, which seemed to crop up every few weeks or so. Sadly, Michael succumbed to his prostate cancer in September 2011.

I placed the results of his genetic testing within a safe along with my will. There were instructions for my sister to divulge this information to my son if I hadn’t already done so, should something happen to me. I had numerous conversations with the genetic counselor about how and when to inform him.

For men, it’s recommended that testing be offered in their mid-20s, since early screening wouldn’t be necessary until age 35. However, in 2014, at age 17, my son was headed off to college, and it seemed reasonable to begin discussing this before he gained his independence.

My son felt he could have been told of this possible risk sooner. He didn’t hesitate. “Of course I want to be tested.” I was prepared to support any decision he made. It was reasonable to wait and decide later. With a full life ahead of him I felt there was such a burden in knowing, and yet there is power in knowledge.

I can’t explain why I knew what the results would be, and as I sat listening to the genetic counselor tell him that he indeed tested positive for the 

 mutation, I felt a déjà vu hearing this for a second time.

My son asked very intelligent questions about level of risk, and listened to her recommendations. For men, there seems to be much less that they can actively do to mitigate this elevated threat. Cancers related to the 

 mutation in men include prostate, pancreatic, and male breast cancers, as well as melanoma.

 mutations came alive with Angelina Jolie’s revelation in 2013 of her own 

positivity. The “Angelina Jolie Effect” has resulted in greatly increased screening for this mutation in women. 

 Are there an equivalent number of men and women carrying these mutations? Isn’t the impact on them just as important? Risk of inheritance is 50/50 regardless of gender.

Consider the labeling of this mutation—

ancer; this can be misleading, even for women. The mutation elevates the risk for ovarian cancer as well. Men are rarely recognized in the literature or public commentary when it comes to awareness and discussion about the influence of this unfortunate mutation.

In addition to the effect this gene had on Michael and Ann, other family members have been impacted. Ann’s daughter Rachel tested positive for the mutated gene at age 19. She was advised to wait until her mid-20s to pursue “vigilant monitoring.” When her cousin was diagnosed with breast cancer, Rachel made contact with a high-risk breast clinic and underwent extensive genetic counseling, gathering current and evidence-based information about her options. Subsequently at age 25, she chose to have bilateral mastectomies and reconstruction to reduce her risk of breast cancer.

Mollie, Rachel’s cousin and another one of Michael’s nieces, was unfortunately diagnosed with breast cancer at age 27 in 2013. Mollie has completed surgery and adjuvant treatment for her breast cancer and is actively considering fertility treatment along with preimplantation genetic diagnosis (PGD). This procedure would allow for testing the embryos for the 

mutation and selecting those without the gene.

As for my son, he is now well informed about the importance of cancer prevention, being aware of his body, and reporting changes. He has followed most of these healthy habits for years, such as going to the gym, maintaining a healthy weight, and using sunscreen regularly. He may need to begin prostate cancer screening earlier than usual, but that is still years away. He is also aware of the implications for a family in the future.

 mutations we need to remember that men matter. Clinicians and the public need to be aware that being positive for 

mutations has consequences for men and their families, too. It’s time to start talking about—and including&mdash;men in these discussions.

Linda Penwarden, MN, RN, AOCN has been a nurse for more than 27 years and is an oncology clinical nurse specialist at Mountain States Tumor Institute in Boise, Idaho. More importantly Linda is a mom and family member in which cancer genetics have played a significant role in the lives of those mentioned and not mentioned in this article. Linda wants to get the word out to others affected by this genetic mutation.

Helping Patients to Understand Their Risk

The National Cancer Institute reports that from 5% to 10% of prostate cancer cases are believed to be primarily caused by high-risk inherited genetic factors or high-risk susceptibility genes. Although genetic testing for prostate cancer is not currently standard practice, research has shown that risk is elevated in men with mutations in 

, and on a smaller scale, in mismatch repair (MMR) genes.

 In particular, prostate cancer has been observed at higher rates in men who harbor the 

A recent study by Mersch et al of approximately 1000 patients testing positive for a deleterious

 mutation, reported that individuals with a 

 mutation had significantly higher numbers of cases than expected for pancreatic cancer in both men and women (Standard Incidence Ratio [SIR] = 2.17; CI 95%, 13.1-34.0; 

 < .001) and for prostate cancer in men (SIR = 4.9; 95% CI, 2.0-10.1; 

The US Preventive Services Task Force (USPSTF) issued guidelines in May 2012 recommending against routine PSA screening. Research reported recently at the annual meeting of the American Urologic Association has demonstrated that the guideline has resulted in a decline in screening.

 The group Facing Our Risk of Hereditary Cancers Empowered (FORCE) notes that after concerns were raised about how this guideline would impact screening for men with 

 mutations, USPSTF modified its guidelines to acknowledge that they do not apply to men with 

 mutations. Experts recommend a PSA blood test and baseline digital rectal exam for all men with 

The international IMPACT trial is looking at the issue of PSA screening in men with and without 

 mutations, and early analysis suggests of benefit of PSA screening in men with 

 The trial, which involves five US research sites, is expected to be completed in 2020 and is continuing to recruit participants.

Oncology nurses have an important role to play in educating their patients about genetic risk for prostate cancer and directing them when appropriate to genetic counseling. A family history of cancer, particularly of the breast, ovary, and prostate, is known to be a major risk factor for developing prostate cancer. A man with a father or brother who had prostate cancer is twice as likely to develop the disease. The risk is higher for men with a brother or father with the disease and is much higher when several relatives are affected, especially if the relatives were diagnosed at a younger age.

			National Cancer Institute. Genetics of Prostate Cancer—for Health Professionals. http://www.cancer.gov/types/prostate/hp/prostate-genetics-pdq#link/_13_toc. Accessed June 2, 2015.

			Mersch J, Jackson MS, Park M, et al. Cancers associated with BRCA1 and BRCA2 mutations other than breast and ovarian. 

			Werntz R, Martinez-Acevedo AC, Conlin MJ, et al. Trends in PSA utilization by primary care physicians: impact of the USPSTF recommendation. Presented at: AUA Annual Meeting; May 15-19, 2015; New Orleans, LA. Abstract PD44-02.

			Facing of Our Risk of Hereditary Cancer Empowered (FORCE). Response to USPSTF Changes for Prostate Screening. http://www.facingourrisk.org/our-role-and-impact/advocacy/current-actions/psa.php. Accessed June 2, 2015.

			IMPACT Targeted Prostate Cancer Screening Web site. http://www.impact-study.co.uk/. Accessed June 2, 2015.

Clinicians and the public need to be aware that being positive for BRCA mutations has consequences for men and their families, too.

June 2015

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