For Johns Hopkins’ gastrointestinal cancer surgeon Mark Duncan, MD, those who help his patients to cope with their diagnosis and manage their often complex treatment and follow-up are critical members of the healthcare team—be they nurse practitioners, oncology nurses/navigators, or, as in his case, a physician’s assistant. In fact, as he told attendees at NCONN 2012, he would like to see more GI nurse navigators for a specialty where currently there are not enough.

Gastric cancers represent the second leading cause of cancer deaths worldwide, noted Duncan, associate professor of surgery and Oncology at the Johns Hopkins University School of Medicine and vice-chair of the Department of Surgery. Regardless of the tumor type, “surgery is front and center in these cancers,” and is frequently followed by some complication. At least initially, “all of my patients will lose weight,” and we have to ask ourselves, “if they don’t start to gain weight, is that the effects of surgery, or do they still have cancer?”

“With the tumors I treat, I don’t save most patients, but I treat all.” In getting them back on their feet, “a lot depends on the patient.” His patients tend to be older, with comorbidities to consider. Patients usually come to him with weight loss and malnutrition; fatigue is also an important factor, whether it stems from the effects of aging, the disease itself, or pretreatment of the tumor with radiation or chemotherapy. Radical GI cancer surgery can mean lifelong changes in body function and quality of life—making the patient’s overall fitness, as well as family support, crucial.

Duncan described several of his own surgical cases to illustrate the wide range of issues clinicians confront when treating cancer patients, and which are emblematic of why navigation services are so important. One typical older patient had to overcome her general distrust of physicians, simultaneously deal with her husband’s illness, and manage the basic logistics of getting to treatment and whom to call with questions. One younger patient raised understandable questions about fertility and sexual activity. A single parent wondered how she can take time off from her job, what to do about her children with her extended family living out of state, and whether to believe what she learns in an Internet chat room versus what her oncologist tells her.

Other patients must confront language and cultural barriers or cost issues, which can mean missed appointments and difficulties in understanding their diagnosis, treatment, and follow-up care.

“The navigator is the glue that holds this all together,” said Duncan, “the secret weapon,” which he said is deployed most effectively in the areas of communication and coordination. This means communication with patients and doctors, providing resources and guidance, ensuring understanding, and empowering patients to give them more control in setting goals for themselves and making decisions about their treatment. It also means a focus on patient- as well as family-centered care. “Cancer is personal. It doesn’t just affect patients; it affects people with families.”

While noting “a paucity of hard data” on navigation’s benefits, he cited a number of recentlyreported positive outcomes studies, including one by researchers at the Edinburgh Cancer Centre in Scotland (

. 2012. doi:10.1002/ pon.3093) who found that navigated patients with prostate cancer were more confident in making treatment decisions, more certain they had made the right decision after consultation, and had less regret about their decision 6 months later.

When the Connecticut Veterans Affairs Healthcare System hired an advanced practice nurse to serve as a cancer care navigator, researchers reported a reduction in the average time from suspicion of cancer to treatment for patients with non— small-cell lung cancer (NSCLC), from 136 days in 2003 (before the new position was established) to 55 days in 2010, as well as a trend toward diagnosis of NSCLC at an earlier stage (

. 2012;16(1):29-36). In another study, researchers at the University of Southern California found that oncology nurse navigation proved to be an effective outreach strategy for increasing black patient participation in cancer research and may be achieved at nearly half the cost of traditional methods of enrolling patients in clinical trials at cancer centers (

Duncan said that he would like to see more attention, funding, and advocacy for GI cancers. Such attention might yield more cancer navigators for the specialty, a development he would definitely welcome. He believes that more navigation also will help increase participation in clinical trials among those traditionally underrepresented and meet the real need of all patients to better understand these cancers and manage their treatments and follow-up care. Toward that end, he has authored a book, 

Patients’ Guide to Cancer of the Stomach and Esophagus

, as part of The Johns Hopkins Patients’ Guide series.

Dr. Mark Duncan on Measuring the Success of Patient Navigation

Survivorship is different in GI cancers, explained Duncan. He quoted the renowned Welsh surgeon Ivor Lewis, a pioneer in thoracic surgery with an esophagectomy procedure in his name: “The goal of radical cancer surgery is to (a) cure the disease, while (b) rendering the patient’s life useful or enjoyable— or at least bearable.” In support of that endeavor, said Duncan, “navigation is pivotal.”

Articles

Conference Highlights

For Johns Hopkins' gastrointestinal cancer surgeon Mark Duncan, MD, those who help his patients to cope with their diagnosis and manage their often complex treatment and follow-up are critical members of the healthcare team. 

A Surgeon's Perspective on GI Cancer Navigation

In the summer of 2010, 20-year-old physical therapy student Hannah Komai saw an orthopedic surgeon after 2 months of right knee pain and difficulty ambulating. When plain x-rays revealed an unspecified mass, Hannah was admitted to City of Hope in Duarte, California. After additional x-rays, bone scanning, and computed tomography (CT), magnetic resonance imaging (MRI) revealed a 6.6 cm x 3.7 cm x 3.5 cm right distal femur mass, and Hannah was diagnosed with low-grade osteosarcoma after an incisional biopsy.

She then began eight rounds of chemotherapy with ifosfamide (1800 mg/m2/day), doxorubicin (37.5 mg/m

/day) along with occupational and physical therapy (PT). The hospital’s child life specialist and psychologist helped Hannah prepare for treatment and deal with the implications of her diagnosis.

After definitive resection and reconstruction with insertion of a metallic endoprosthesis the following October, pathology revealed negative margins but only 80% tumor necrosis (versus the optimal ≥90%), indicating the need for additional treatment. Resumption of chemotherapy was delayed by a reaction to suture material, requiring treatment of knee cellulitis with IV antibiotics, followed by two surgical wound revisions.

Hannah resumed chemotherapy later that autumn, undergoing 16 cycles with the agents administered preoperatively, with the addition of etoposide (100 mg/m2/day x 5 days) administered with ifosfamide (2800 mg/m

/day). She continued with outpatient PT until she was able to walk without intense pain. She was initially followed with blood work every 2 months, and chest CTs, bone scans, and whole-leg x-rays every 3 months. Now age 22, Hannah is learning to deal with the limitations and chronic daily pain she attributes to her reconstructive surgery and, in particular, her endoprosthesis. She has recently graduated to twice-yearly evaluations and is currently cancer-free.

Osteosarcoma is a highly aggressive neoplasm and the most common primary malignant bone tumor in children and adolescents. As recently as the 1970s, surgery alone or with radiotherapy typically produced 5-year overall survival rates of only 15% to 20%. Adding pre- and post-resection multi-agent chemotherapy has enabled long-term survival in approximately 60% to 70% of cases.

“In my experience, the presence or absence of metastasis is the most critical prognostic indicator in these patients,” notes pediatric oncology/ hematology/bone marrow transplant nurse II Molly Lambert, RN.

“Thankfully, the clear margins achieved during Hannah’s resection demonstrated an absence of metastasis, but the 80% tumor necrosis revealed a less-than-optimal response to preoperative chemotherapy, and guided the decisions related to Hannah’s postoperative chemotherapy regimen.”

The chemotherapy agents used to treat Hannah are those shown to be the most effective for osteosarcoma. Hannah was treated as an inpatient. She was discharged between rounds when symptoms, such as pain and nausea, were sufficiently controlled, and readmitted for each subsequent round of treatment when her blood counts had recovered sufficiently, sometimes needing 10 to 14 days between treatments due to immune suppression—related fever and infection. During the weeks Hannah received methotrexate, IV fluids and the rescue drug leucovorin were administered to ensure that the drug had cleared her system prior to discharge.

Lambert explains that adverse effects are common and numerous with these agents, and include nausea and vomiting from the ifosfamide and doxorubicin, often managed with ondansetron, diphenhydramine, lorazepam, and sometimes dexamethasone. Other adverse effects include constipation or diarrhea, infection-related neutropenia, and mucositis, which is prevented and managed with scrupulous oral care.

Hannah initially tolerated her chemotherapy well but recalls unrelenting constipation that was especially uncomfortable despite dietary changes and medications. As treatment progressed, her once-mild nausea became “unbearable” despite pharmacologic treatment. For 6 to 8 months after completing treatment, Hannah continued to experience severe nausea daily, and finally found relief with the oral antidopaminergic domperidone, which she continues to take along with esomeprazole.

Today, Hannah is working on her prerequisites for nursing school—a change inspired by her nurses. “I once had 27 visitors in a single day,” she says, “but it was the relationships with my nurses that really pushed me through.”

“Reinforcing the need for treatment compliance is especially critical in patients of Hannah’s age,” says Lambert. “We tried our best to establish trusting relationships that would motivate Hannah, especially during the difficult times. This involved giving her as much control and as many choices as possible, and also involved a great deal of education to ensure that Hannah could be an active and informed participant in her care while remaining as independent as possible.”

Hannah realizes that recurrence and late metastasis remain sources of concern for the first 12 to 35 months after diagnosis, but are rare after 5 years. “It’s been a rough road,” she says, adding that the loss of several fellow patients is what has been most difficult. “In the end, you learn who your true friends are, and what’s truly important in life.”

Laura Bruck is a freelance writer and editor based in Cleveland, Ohio. She has specialized in healthcare reporting since 1987.

	1. Sakamoto A, Iwamoto Y. Current status and perspectives regarding the treatment of osteosarcoma: chemotherapy. 

Patient Focus

In the summer of 2010, 20-year-old physical therapy student Hannah Komai was diagnosed with low-grade osteosarcoma after an incisional biopsy.

A Life Redirected: Pursuing a Nursing Career After Osteosarcoma

		Certified genetic counselor and director of Cancer Genetic Counseling at Yale Cancer Center, New Haven, Connecticut

Genetic counseling and testing is a relatively new discipline now widely integrated into clinical practice. Newly diagnosed patients at increased risk for hereditary cancer are routinely offered these services, and most providers understand the usefulness of these new tools in surveillance and treatment. But what about a 70-year-old woman diagnosed with breast cancer 30 years ago? Or a 50-year-old man diagnosed with colon cancer 20 years ago? Or even a 60-year-old woman diagnosed with a triple-negative breast cancer 5 years ago, before we understood its association with hereditary cancer syndromes?

	Should the clinician discuss genetic options with cancer survivors?

Absolutely. This information may be critical in helping the survivor avoid a second primary cancer. Equally as important (especially for elderly and critically ill patients), this information may help prevent family members from developing cancer. As oncology providers know well, the risk to other family members is of utmost concern to many cancer survivors.

	When should this information be discussed?

As soon as the clinician learns that the conversation is relevant. This is sometimes months, years, or decades after diagnosis, because the field of genetics is evolving rapidly, and referral guidelines are changing all the time. Sometimes, the family history of cancer emerges many years after the initial patient is diagnosed, and the patient (and clinician) later become aware of a family history of cancer. Other times, the patient changes providers, and the new clinician realizes that a referral for genetic counseling and testing was never initiated.

Preferably, the issue of genetic counseling and testing should be raised when the cancer survivor is in a steady place in treatment or survivorship. However, not all cancer patients reach stable ground, and the opportunity to at least bank their DNA should not be missed. Too often these conversations are deferred until the patient reaches hospice or is critically ill; this is less than ideal for the patient, the family, and the provider. At this point, the patient may no longer qualify for insurance coverage for genetic testing, accruing steep additional expenses for the family who may have to pay out of pocket.

		Who Is at Increased Risk for Hereditary Cancer?

Any patient with a personal and/or family history that includes any of the following:

			Early-onset cancer (age <45 years for breast cancer and <50 years for colon or uterine cancer)

			Multiple family members in the same bloodline with the same type of cancer

			Related cancers within one bloodline (eg, breast/ovarian/ pancreas or colon/uterine/ovarian/sebaceous adenomas or carcinomas or melanoma/pancreas)

			Jewish ancestry + breast, ovarian, and/or pancreatic cancer

			Multiple primary malignancies in one person (eg, breast and ovarian cancer; colon and uterine cancer).

			A pathologic subtype of cancer (eg, triple-negative breast cancer diagnosed <60 years of age; medullary breast cancer; adrenocortical carcinoma <40 years) that is known to be overrepresented in hereditary cancer families

	Who should discuss this information with the cancer survivor?

It is helpful if a clinician with a strong personal connection to the patient raises the issue of genetic counseling and testing. In the world of cancer survivorship, this clinician is often the oncology nurse.

The oncology nurse frequently has a close, long-term relationship with cancer survivors and their families, and thus may be aware of extended family history information that will help determine if that patient is a candidate for genetic referral. The oncology nurse may also be able to help identify which family members are likely to benefit from this information.

	What are the barriers to discussing this information with cancer survivors?

Clinicians are sometimes reluctant to raise a new issue with a patient who feels that cancer is in his or her “outbox.” These well-meaning clinicians may assume that presenting the option of genetic counseling and testing will upset the patient. This is sometimes true, but in other cases, patients are thrilled to learn that they might offer their family members new strategies that may avoid an advanced cancer diagnosis.

		Common Survivor Questions About Genetic Testing

Why would I want genetic testing now? I’ve already had cancer.

 Genetic counseling and testing could provide you with information that could help you avoid developing a second primary cancer. This information could also help your family members avoid the development of an advanced cancer.

Why are you bringing this up now? I was diagnosed years ago.

 Genetics is a rapidly evolving specialty, and referral guidelines and options are changing all the time. These options may not have been available when you were diagnosed.

Would my insurance cover these charges this many years later?

 Many insurance plans cover counseling and testing for patients who need these services. Benefits are generally not time-limited.

Genetic Counseling

Genetic testing for cancer survivors may play a critical role in helping avoid a second primary cancer or it may help prevent family members from developing cancer.

The Benefits of Genetic Testing for Cancer Survivors

		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

Patients considering chemotherapy treatment need to understand the risks and benefits of treatment in order to make an informed decision to undergo—or forgo&mdash;treatment. This decision is fairly easy to make when the treatment intent is cure, and evidence exists that the treatment is, in fact, curative. The decision to not receive chemotherapy is much more difficult to make.

There is a fine line between hope and despair, and what is said is sometimes not heard. We have no crystal ball to tell us what the future holds for a particular patient, so we have to rely on aggregated data in our discussions about prognosis and possible treatment outcomes. Clinicians understandably tend to move quickly from talking about a poor prognosis and no chance of cure, to talking about doing something, such as palliative chemotherapy, rather than doing nothing at all. However, as we all know, there are instances where forgoing chemotherapy treatment would have been a better decision in terms of a patient’s quality of life, and even life expectancy, as sometimes treatment-related deaths do occur.

Depending on the patient’s perspective, treatment data can be taken any number of ways. Some patients believe that they are going to be in the 10% that respond to treatment and not the 90% who do not respond. Conversely, there are patients who are told that the likelihood of experiencing a certain side effect is low and consequently anticipate that it will occur. It’s partly the “cup is either half empty or half full” perspective and partly how well the information was conveyed in the first place.

In a national population cohort study of 1193 patients with metastatic lung or colorectal cancer, researchers found that 69% of the patients with lung cancer and 81% of those with colorectal cancer who were alive 4 months after diagnosis and had opted to receive chemotherapy had inaccurate expectations about the curative potential of the chemotherapy they received.

 Prior studies had found that only a minority of patients believed that palliative chemotherapy would be curative; however, in the prior studies, patients were asked only if the goal of their treatment was cure or palliation.

In this recently published study, patients were asked how likely they thought it was that chemotherapy would cure them, and most thought that a cure was possible. After accounting for the effect of other factors, including education and income, nonwhite patients were at higher risk for having inaccurate beliefs about chemotherapy, and paradoxically, patients who reported higher scores for physician communication were at higher risk for having inaccurate chemotherapy expectations. It may be the messenger, and not the message, that patients are hearing.

The study findings raise the questions of how well are we providing information on treatment intent so that patients can make informed decisions about chemotherapy treatment, and how are patients receiving and interpreting the information we provide? In addition, since most of the patients were not clear on the intent of treatment, what is the possible impact of this misunderstanding on initiating end-of-life planning and care?

Although treatment intent is usually verbally communicated to a patient, and also often is stated on chemotherapy consent forms, data suggest that patients with advanced cancer may not understand that the chemotherapy is unlikely to be curative. I’m not suggesting that we dash all hopes of disease control or a longer life, but discussions with patients need to be clear about treatment intent. Patient navigators and nurses who provide navigation assistance may be able to improve patients’ understanding of treatment intent and guide patients to timely and appropriate care, such as earlier discussions of end-of-life wishes and earlier referral for palliative care.

	1. Weeks JC, Catalono PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. 

Nurse's Notes

Patients considering chemotherapy treatment need to understand the risks and benefits of treatment in order to make an informed decision to undergo-or forgo-treatment.

Navigating Patients' Chemotherapy Decision Making

Cancer impacts the lives of patients in many different ways, but one way in which adults facing a cancer diagnosis may be affected is the impact that the disease and its subsequent treatment can have on sexual function.

Estimates on just how many cancer patients are impacted vary, depending on the tumor type. However, since general treatment options such as chemotherapy and radiation are similar across tumor types, assessing the sexual needs of a cancer patient may benefit in part from a universal approach, still keeping in mind the individual needs of each patient.

That was the message passed along at NCONN 2012 by Michael Krychman, MD, medical director of sexual medicine at Hoag Hospital and executive director of The Southern California Center for Sexual Health and Survivorship, both in Newport Beach, California.

“There are treatments that we do as healthcare professionals like chemotherapy and radiation that can have far-reaching implications on sexual function, as well as medications that we put our patients on that may be for an extended period of time—that all can have an impact on the sexual response cycle,” Krychman said.

For example, women treated with radiation for their tumors often experience a range of similar side effects that impact sexual function across tumor types, including vaginal changes, erythema and ulcerations, superficial or deep dyspareunia, and local effects due to placement. For patients treated with chemotherapy, sexual side effects can include premature ovarian failure, amenorrhea, menopausal syndrome, and vaginal mucosal erythrodysesthesia.

Some types of cancer have their own impact on sexual healt h beyond these side effects, however. Lung cancer patients of - ten have difficulty breathing, so Krychman recommended that intimacy be scheduled during optimal breathing times and avoided after consuming a heavy meal or alcohol because of the impact that fatigue may have on breathing; in addition, bronchodilators and oxygen therapy should be used prior t o intimacy, if prescribed. Anot her example is Hodgkin’s lymphoma, where intensive treatments such as bone marrow transplants and high-dose chemotherapy can lead to sexual problems and fertility issues.

Krychman said that when it comes to sexual health, patients with cancer may need to establish a “new normal,” which may include the use of various therapies to address sexual complaints. Krychman said that there are more options than ever before when it comes to safely and effectively improving sexual function.

	It’s very important to normalize the experience and create a safe environment where sexuality can be discussed. ”

He reviewed a number of therapies at the conference, including ones that are currently under clinical investigation. One such product is ospemifene, a selective estrogen receptor modulator that is under review by the FDA to treat vulvar and vaginal atrophy in patients who have gone through menopause in order to treat moderate to severe dyspareunia, or painful sexual intercourse. If approved, it would be the first oral alternative to vaginal estrogens. Additionally, intravaginal dehydroepiandrosterone (DHEA) suppositories, which have been shown to restore and revive the vaginal epithelium without affecting estradiol levels, are under clinical investigation as well.

While DHEA suppositories are being studied in cancer survivors, ospemifene is not being explored specifically in cancer patients with sexual health concerns. However, Krychman believes that cancer patients could benefit from these new therapies if studies back up their clinical efficacy.

“We’re waiting to see what will happen in terms of the FDA with ospemifene, and then maybe they would consider further postmarketing studies in the oncologic patient,” Krychman said. “But it’s a very exciting time for sexual medicine in general, particularly when there is some concern for the cancer patient.”

A continually expanding assortment of viable treatment options is available, but Krychman said the only way that a patient is going to benefit from these options is if the channels of communication remain open. Krychman said that the nurse navigator is an essential part of establishing a safe environment for the patient so that he or she feels comfortable enough in discussing sexual health issues, and even then, only when the time is appropriate.

“We need to individualize and prioritize with our patients who come in,” Krychman said. “Some may not benefit from early discussion. Others may benefit during therapy, and others may benefit in their survivorship phase. There’s really no one hard, fast rule, but I think it’s very important to normalize the experience and create a safe environment where sexuality can be discussed and resources can be accessed as well.”

Dr. Michael Krychman on the Awareness of Sexual Health Concerns 

If a patient is not ready to talk to a nurse navigator or a treating oncologist in person about sexual health concerns, Krychman suggested a number of online resources that could be of some assistance and lend themselves to eventual discussion in person. One website he suggested was the International Society for the Study of Women’s Sexual Health (ISSWSH), where patients can find providers in their region who address sexual health concerns.

“I think it’s important for patients to become educated and mark down their questions so they’re prepared for their visit,” Krychman said.

Sexual Health Considerations in Cancer Treatment and Survivorship

If there were just one takeaway about prostate cancer navigation that Frank delaRama, RN, MS, AOCNS®, would like his peers attending NCONN 2012 to remember, it would be the important role they have in helping patients make informed decisions about their treatment.

A strong advocate for empowering patients through a shared decision-making (SDM) model, delaRama, clinical nurse specialist with the Cancer Care Centers, Palo Alto Medical Foundation, noted that prostate cancer is different from other cancers in many respects, and that in its early stages, physicians are not always able to determine how the cancer will act. Information is key, as patients with early-stage prostate cancer typically choose among three standard treatment options: watchful waiting/active surveillance, surgery, and radiation—the latter two options carrying the risk of both physical and psychosocial side effects.

For later-stage patients, “again, it’s all about information and education, whatever the stage is,” delaRama stressed. Logistics remain important supports that the oncology nurse navigator (ONN) can provide—for example, making sure patients get to their appointments, setting up a timeline for scheduling them, and assisting with transportation needs&mdash;but he also sees a vital role for ONNs in arming patients with information, resources, and decisionmaking tools that will help them in choosing the best options for their own treatment (

Frank delaRama on Patient Education in Prostate Cancer

He suggests patients use an SDM process to make their treatment choices, starting with having all relevant clinical information on their cancer, knowing the treatment options, and then prioritizing goals and outcomes, such as removing the cancer, avoiding long-term side effects, maintaining quality of life, convenience, and cost. “We are not giving medical advice, but rather giving patients tools to come to an informed decision—a decision that they will own,” said delaRama.

“In prostate cancer, the ONN provides a unique, valuable service as an SDM coach. Patients who use SDM are more satisfied with their treatment decisions, regardless of outcomes,” he concluded.

Information is key, as patients with early-stage prostate cancer typically choose among three standard treatment options: watchful waiting/active surveillance, surgery, and radiation.

December 2012

A Surgeon's Perspective on GI Cancer Navigation

A Life Redirected: Pursuing a Nursing Career After Osteosarcoma

The Benefits of Genetic Testing for Cancer Survivors

Navigating Patients' Chemotherapy Decision Making

Sexual Health Considerations in Cancer Treatment and Survivorship

Helping Prostate Cancer Patients to Make Informed Treatment Decisions