No one deserves a cancer diagnosis, yet some patients feel stigmatized by their diagnosis, explained Lee Ann Johnson, PhD, RN, an assistant professor of nursing at the University of Virginia School of Nursing. Stigmas can be associated with a wide variety of cancer types including lung cancer and a possible association with smoking; human papilloma virus-related cancers such as oral, cervical, and anal cancers; male breast cancers; and male-specific cancers such as testicular, prostate, and penile cancer. 

Johnson understands these stigmas well. Her mother, who never smoked, died of lung cancer. Her grandfather, a former smoker, received a lung cancer diagnosis decades after quitting.“ 

In my family, we never made a big deal out of the smoking either way, but I have been to medical conferences and heard patients speak who often feel like their family blames them for getting the disease or their spouse...resents them for having to take care of them,” Johnson said. “Lung cancer is an awful disease with a high symptom burden; feeling stigmatized can add a layer of depression and anxiety.” 

Johnson and colleagues conducted a small study of patients with lung cancer to examine the influence of stigma on social support, symptom severity, and quality of life, among others.

 They found that about one-third of participants reported experiencing a high level of stigma, which was significantly related to a lower quality of life. There was higher symptom severity for feeling distressed, problems remembering things, and feeling sad. Greater symptom interference was reported related to mood, relations with others, and enjoyment of life. Cancer-associated stigma can come in other forms as well, according to Barbara A. Murphy, MD, director of the Head and Neck Oncology Program and director of the Pain and Symptom Management Program at Vanderbilt-Ingram Cancer Center. “Patients may have stigma associated with sequelae of their cancer,” Murphy said. “For example, a patient with head and neck cancer who has a large surgical procedure with visible scarring or disfigurement may have body image issues.” Such issues can profoundly affect emotions, result in depression, and decrease quality of life. There may also be less visible issues, she added. 

“Patients may have chronic fatigue and...no longer [be] able to maintain the same level of activity,” Murphy said. “They often feel a burden because they cannot work or fulfill their family roles in the same way as they used to. On the outside, people will look at them and say they look fine, but they do not feel fine.” 

Health care professionals and oncology nurses play an important role in reducing these stigmas and helping patients feel comfortable and welcome. For example, the results of a 2019 survey assessing lung cancer stigma showed that both doctors and nurses felt the most common way patients with lung cancer are treated differently was that they “received less sympathy from medical staff.”

According to Johnson, one of the best ways a nurse can have a positive effect is by asking the patient, perhaps even in the absence of their caregiver, about their experience. “Be upfront,” she said. “Ask them about how they are feeling and, if they are having issues, connect them to resources that could be helpful, such as therapy or social workers.” In fact, a study of prostate cancer stigma suggested that oncology nurses can improve patient experiences within the health care system and reduce stigmatization by improving psychosocial support. Nurses can improve communication between the patient and the physician and act as navigators to offer informational and emotional support.

Nurses may even have to look inward to assess their own conscious or unconscious bias toward patients whose diagnosis includes some of the more commonly stigmatized cancers. 

“As the whole field becomes more culturally sensitive and inclusive, I think we should also be developing programs that include stigma training,” Johnson said. “Addressing these possible biases would help us to provide the best care we possibly can to our patients.” 

Murphy agreed that oncology nurses have an important role to play.  

"Nurses are some of the most empathetic human beings I know, and there is a tremendous trust that patients place in nurses...more so than even in physicians,” she pointed out. “One of the important roles a nurse has is providing patients with the opportunity to ‘unload’ in a nonjudgmental environment.” 

Nurses can help to educate patients and their families and caregivers to address or reduce stigmas associated with certain cancers, Murphy continued. 

“We have to be champions of under-standing,” she said. “We have to constantly remind ourselves that patients are human beings and walk in their footsteps in order to effectively address their problems.”


1. Johnson LA, Schreier AM, Swanson M, Moye JP, Ridner S

. Stigma and quality of life in patients with advanced lung cancer.

2019;46(3):318-328. doi:10.1188/19.ONF.318-328

2. King JC, Rapsomaniki E, Rigney M, et al. Lung cancer stigma: a ten-year look at patient and oncology attitudes about lung cancer. 

2019;37(suppl 15):11619. doi:10.1200/JCO.2019.37.15_suppl.11619

3. Buote R, Cameron E, Collins R, McGowan E. Understanding men’s experiences with prostate cancer stigma: a qualitative study. 

2020;47(5):577-585. doi:10.1188/20.ONF.577-585

Articles

Some cancers carry stigma or cause people to feel guilty about their diagnosis. 

Cancer Stigmas Persist, But Nurses Can Help

Oncology nurses have an important role in the discussion of and education about complementary therapy, more commonly called integrative care.

“The word ‘integrative’ is key in the discussion,” said Eugenie Spiguel, MSN, ANP-BC, a nurse practitioner in the integrative medicine department at Memorial Sloan Kettering Cancer Center (MSK) in New York, New York. “When people look at the term ‘alternative,’ those therapies tend to be ones outside of the norms of cancer treatment—alternatives to standard of care. With integrative medicine, we are looking to complement standard of care.”

Education about the role of integrative medicine compared with alternative therapies is important, as more than 1 in 3 Americans believe that cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology’s 2020 National Cancer Opinion Survey.1 Among women with breast cancer, only about half of patients disclosed use of complemen-tary and alternative medicines to their health care providers.2

Done successfully, integrative medicine can help manage a patient’s adverse events and enhance quality of life before, during, and after treatment into survivorship. “When you combine evidence-based treatments with the supportive services, that integrative approach to cancer care treats the disease with surgery, chemotherapy, and other conventional tools, [you're] supporting patients’ strength, stamina, and quality of life,” said Carolyn Lammersfeld, MBA, MS, RD, CSO, LD, vice president of integrative care services at Cancer Treatment Centers of America (CTCA).




Integrative care can include modalities as varied as behavioral health services, nutritional support, oncology rehabilitation, and pain management.

One example of integrative medicine used at MSK is acupuncture, according to Spiguel. Acupuncture involves the use of very thin needles along with heat, pressure, or electricity to stimulate points on the patient’s body.

“We have a robust acupuncture program and have used it to help patients deal with peripheral neuropathy associated with chemotherapy,” Spiguel said.

Researchers at MSK published a meta-analysis in 2012 that showed that acupuncture was an effective option for treating chronic pain.3 The center also has ongoing clinical trials to evaluate acupuncture in other areas, such as comparing it to massage for pain management in people with advanced cancer.4

“We also use acupuncture for hot flashes experienced by patients with breast, ovarian, or pros-tate cancer as a result of their treatment,” Spiguel said. “It can be used for joint pain caused by immunotherapy or other treatments and for the prevention of nausea and vomiting from chemotherapy.”

Spiguel also discussed treatments like meditation. “When we think about stress and anxiety from upcoming scans, or even while in an MRI machine, meditation can be helpful,” she said. “Patients can participate in classes and guided meditation.”

Clinicians may recommend integrative services as a complement to a patient’s initial treatment plan or at any point over the course of their treatment or survivorship, Lammersfeld said.

“For example, nutrition services may be used to complement antiemetics or antinausea medications to help reduce chemotherapy-induced nausea, making the treatment more tolerable and reducing treatment delays or interruptions,” Lammersfeld said. “Sexual health counseling may be offered to patients who have completed their cancer treatment and are now looking for a way to return their lives to normal.

”Another aspect of integrative medicine that should be discussed more with patients, Spiguel said, are physical activity and good sleep practices. During active treatment, studies have shown that regular physical activity can reduce fatigue, improve physical functioning, and have positive effects on self-esteem and quality of life.5-7

“When you consider that up to 80% of adults living with cancer are malnourished, and 1 in 2 patients has some form of nutritional deficit at the time of their diagnosis, nutritional support can be extremely important, too,” Lammersfeld said.

Alternatively, there are some things that oncology nurses should be on the lookout for that could cause harm to the patient. “We advise our patients to steer clear of any ‘therapy’ that is promoted as an alternative to evidence-based treatments like surgery, radiation, chemotherapy, and immunotherapy,” Lammersfeld said.

“For example, if a patient chooses to explore laetrile/shark cartilage, etc, instead of the chemotherapy recommended by their medical oncologist, they are not likely to change the trajectory of their cancer.”Patients should be cautioned against the use of vitamins, herbs, and supplements as a whole during active treatment. Supplements should be discussed with their provider or a medical professional with expertise in herbs and supplements and the effect on chemotherapy. Initiation of ServicesThese important services can be initiated by the patient or by the health care provider. “We have seen a lot of referrals from providers, whether they are advanced practice providers or physicians, as well asnurses who have seen good results with our services,” Spiguel said. “In other cases, the patients may have seen our services on the website."

Patients are pleasantly surprised, Lammersfeld said, when their health care providers offer supportive services as part of the treatment model.

Any conversation involving integrative medicine should be an open conversation, Spiguel said.

“You can’t just tell a patient no without discussing it; that shuts the patient down and they may end up taking things without discussing it with their providers,” Spiguel said. “Instead, open the conversation and explain things to your patient.

”For example, a nurse could explain that chemotherapy is metabolized by enzymes and herbs or supplements could interfere with that metabolism, causing side effects or making the treatment less effective.

The patient is at the heart of any treatment plan, so each conversation should take place on an individual basis, Lammersfeld said. “Create a safe environment for patients to share what they are doing or considering and allow them to ask questions,” she said. “Encourage their motivation to participate in their care by providing information on evidence-informed modalities, which may be helpful, while gently discouraging modalities which may be harmful or not safe during treatment.

”Nurses and patients looking to get more information about integrative medicine can look to the Society of Integrative Oncology (integrativeonc.org), which holds a conference each year, the American Holistic Nurses Association (ahna.org), which is not oncology specific but has great resources for integrative therapies, or the American Consortium of Integrative Medicine and Health (imconsortium.org), which has a nursing special interest group.

In addition, both MSKCC’s Integrative Medicine website and CTCA’s website contain great information for patients on the benefits of integrative care. “A lot of providers still view integrative or complementary medicine as a little bit outside of the realm of oncology, but a truly integrative approach can really provide benefits,” Spiguel said. “Every person who comes into contact with a patient can listen and dig deeper, especially if a patient is discussing problems they are having.”





1. National Cancer Opinion Survey, Harris Poll on behalf of the American Society of Clinical Oncology, 2020.
2. Wanchai A, Armer JM, Stewart BR. Complementary and alternative medicine use among women with breast cancer: a systematic review. 

2020; doi:10.1188/10.CJON.E45-55
3. Vickers AJ, Cronin AM, Maschino AC, et al. Acupuncture for chronic pain: individual patient data meta-analysis. 

 2012;172(19):1444-1453.
4. Memorial Sloan Kettering Cancer Center. A study comparing acupuncture with massage for pain and related symptoms in people with advanced cancer. Accessed December 8, 2020. 

https://www.mskcc.org/cancer-care/clinical-trials/19-341


5. Mishra SI, Scherer RW, Snyder C, Geigle PM, Berlanstein DR, Topaloglu O. Exercise interventions on health-related quality of life for people with cancer during active treatment. 

 2012(8):CD008465.
6. Courneya KS, Segal RJ, Gelmon K, et al. Six-month follow-up of patient-rated outcomes in a randomized controlled trial of exercise training during breast cancer chemotherapy. 

 2007(16):2572-2578.
7. Courneya KS, Sellar CM, Stevinson C, et al. Randomized controlled trial of the effects of aerobic exercise on physical functioning and quality of life in lymphoma patients. 

Integrative services offer modalities that can complement—not be used in place of—standard cancer treatments. 

Open Discussions Help Nurses Introduce Integrative Services

Getting an accurate family history can be one of the most challenging things that nurses face, according to Suzanne Mahon, DNSc, a clinical nurse specialist at SLUCare physician group, St Louis, Missouri.

“Part of the issue is our electronic medical record which will phrase the question generally, like, ‘Does anyone in your family have health problems?’” Mahon said. “That does not dig deep enough.”

When discussing family history, Mahon recommended asking specifically about siblings, then parents, then grandparents, then aunts and uncles, nieces and nephews, and cousins. By asking about each, it forces the patient to think more granularly.

Different familial cancer syndromes can present differently in families. Someone may be diagnosed with ovarian cancer, and another family member may have had a history of melanoma, whereas another may have had prostate cancer. Although the patient may not think all of those are related, different syndromes can lead to different combinations of disease, Mahon said.

It is also important to review a family history each time you see a patient, she added. “I worked with a breast surgeon who sent a patient to see us who had surgery four or five years ago,” Mahon recalled. “Originally, there was no family history, but when the patient was seen later for follow-up and the surgeon asked again about her family history, her cousin and sister had both since been diagnosed. Family history should never be stagnant.”

Getting an accurate family history can be one of the most challenging things that nurses face, according to Suzanne Mahon, DNSc, a clinical nurse specialist at SLUCare physician group, St Louis, Missouri.
 

Assessing Family History: A Moving Target

In her role as a genetic professional, Suzanne Mahon, DNSc, a clinical nurse specialist at SLUCare physician group in St Louis, Missouri, recently met with a 46-year-old single mother who had been diagnosed with metastatic triple-positive breast cancer and referred for genetic counseling and testing.

The woman had marketplace insurance and was denied coverage for genetic testing, but Mahon worked with the testing laboratory. Together with other compassionate care resources, the cost of testing was able to be covered. Testing revealed a CHEK2 mutation, a germline mutation that has been linked with up to a 37% lifetime risk for breast cancer.

“This information will guide her treatment decisions regarding use of bilateral mastectomies, as well as her long-term follow-up, such as more frequent colon, gynecologic, and thyroid screening,” Mahon said.

The patient had a 22-year-old daughter who was also concerned about her risk and sought genetic counseling. After 2 counseling sessions, the daughter decided to proceed with genetic counseling; however, she was uninsured. Again, compassionate care funding was used to cover the cost of her testing, which revealed she was negative for the CHEK2 mutation and at average risk for developing cancer. Now, Mahon said, the daughter can focus on her studies and caring for her mother.

Inherited genetic mutations play a role in between 5% to 10% of all cancers, according to the National Cancer Institute.

 Specific genetic mutations have now been associated with more than 50 hereditary cancer syndromes. The National Comprehensive Cancer Center (NCCN) offers guidelines on genetic testing organized by both disease and syndrome type.

More generally, though, nurses can look for several characteristics or situations that might point to genetic or familial high-risk situations, according to Mahon.

The first, and often easiest to spot, is the diagnosis of a cancer in a young person that typically occurs at an older age. For example, the diagnosis of breast or colon cancer at age 50 or younger. “Cancers that we usually see in 60- or 70 year-olds occurring in younger patients, that is always a red flag,” Mahon said.

Another group of people often flagged for possible genetic testing are those diagnosed with very rare tumors, such as male breast cancer, paragangliomas, or medullary thyroid cancer.

Specific characteristics of a cancer diagnosis might also point to the need for genetic testing. For example, people with colon cancers that show high microsatellite instability (MSI-high),3 a patient with more than 15 or 20 colon polyps in a lifetime, or a patient with a lot of atypical moles.

“These are not necessary malignant conditions, but when they occur they often can be the beginning of something or an indicator that something else is going on,” Mahon said.

Any or all of these factors might point to the need for genetic testing, and that is before even diving into a patient’s family history.

“This is the very first thing that nurses on the front line take in every type of medical practice,” said Wendy Brouwer, NP, of The University of Texas MD Anderson Cancer Center in Houston, who deals mostly with hereditary breast and ovarian cancers.

For example, the NCCN guidelines for high-penetrance breast cancers call for genetic testing among women aged 45 to 50 with one or more blood relatives with any breast, ovarian, or pancreatic high-grade prostate cancer. Testing is also indicated in those diagnosed at any age with one or more blood relatives diagnosed with breast cancer at age 50 or younger, or ovarian, pancreatic, or prostate cancer at any age, and in anyone with 3 or more breast cancer diagnoses in close blood relatives.

“These things do not always mean there is a mutation there, but it does mean that if there is one we don’t want to miss it,” Brouwer said.

Undergoing testing to look for genetic risk for cancer can be difficult, but there are ways in which nurses can help guide patients through the process.

One of the most important things to emphasize, according to Mahon, is that counseling is not testing.

“Counseling means that you are coming in to learn about your options,” she said. “We emphasize that the counseling appointment is not where testing is done.”

Mahon has seen a wide variety of outcomes after genetic counseling. Some patients who were intent on getting testing done decide to delay after exploring their options. Others who were set against testing learn more and ask for tests to be done immediately.

It is also important for nurses not to trivialize testing and what it could mean to the patient and their families. Explain that it is OK for them to be scared. It is ok for them to be hesitant. Those feelings are normal.

Nurses can also encourage patients to bring another family member to the genetic counseling and testing appointments. Sometimes dealing with a cancer diagnosis and the burden of having to share information about familial risk can be too much for the patient alone to take on, Mahon said.

Finally, Brouwer said, patients may respond to the information that the results of their genetic testing could not only affect treatment decisions for their care, but could help increase prevention of future cancers in themselves and their family members.

Mahon said that she will not conduct genetic testing for any mutations that are not considered “actionable,” meaning knowledge about the mutation can affect treatment decisions or future cancer prevention.

Women who have BRCA 1/2 mutations and are diagnosed with breast or ovarian cancer may qualify for treatment with PARP inhibitors.

Patients with Lynch syndrome, an inherited cancer syndrome associated with increased risk for colon and other cancers, tend to have higher rates of MSI-high tumors, which may respond to immunotherapy with pembrolizumab.

For prevention, knowledge of a BRCA 1/2 mutation in breast cancer can affect decisions made about choice of breast surgery, for example. Women with these mutations have a higher risk for a second breast cancer and may opt to undergo bilateral mastectomy rather than lumpectomy.

Genetic testing for Lynch syndrome could encourage people to undergo increased screening for colon cancer, endometrial cancer, ovarian cancer, and more. People found to have a genetic mutation for medullary thyroid cancer can encourage family members to undergo screening, as there is a nearly 100% lifetime risk for developing malignancy associated with these mtuations.

“Where you are really getting into some conundrums are testing in some hematologic malignancies,” Mahon said. “Identification of genetic mutations [is] not really actionable for family members, but [is] important to know if you need to select possible transplant donors.”

Nurses will play an important role in guiding patients through their testing results, and discussing sharing any positive results with family members.

“The HIPAA rules prohibit me from calling these family members,” Mahon said. “All I can do is tell the patient, ‘These are the family members at increased risk.’ [For] people with the greatest risk, like siblings and offspring, we make the biggest deal about offering the option of testing.”

Looking to the future, Mahon said she hopes to begin to see more oncology nurses specializing in genetic counseling.

“I do this and only this all day long,” Mahon said. “We have to have more training programs for nurses to learn this and devote their practice to it. That would allow for more excellent care for families across the board.”

Brouwer said she hopes that a focus on genetics spreads even further than just among oncology nurses. She belongs to the International Society of Nurses in Genetics (ISONG), a global nursing specialty organization dedicated to genomic health care, education, research, and scholarship.

“This organization represents a really up-and-coming field,” Brouwer said. “Oncology nurses are on the second line, when cancers have already started to happen. If nurses can all start to have a lot more knowledge about genetics, enough to pick up on risk in family history, we can start to play more of a role in the prevention side of things.”

1. Weischer M, Bojesen SE, Ellervik C, Tybjaerg-Hansen A, Nordestgaard BG. CHEK2*1100delC genotyping for clinical assessment of breast cancer risk: meta-analyses of 26,000 patient cases and 27,000 controls. 

2008;26(4):542-548. doi:10.1200/JCO.2007.12.5922

2. The Genetics of Cancer. National Cancer Institute. Updated October 12, 2017. Accessed May 4, 2020. 

https://www.cancer.gov/about-cancer/causes-prevention/genetics

3. Genetic Testing, Screening, and Prevention for People with a Strong Family History of Colorectal Cancer. American Cancer Society. Updated February 21, 2018. Accessed May 4, 2020. 

https://www.cancer.org/cancer/colon-rectal-cancer/causes-risks-prevention/genetic-tests-screening-prevention.html

4. NCCN. Clinical Practice Guidelines in Oncology. Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic, version 1.2020. Accessed May 4, 2020. 

https://www.nccn.org/professionals/physician_gls/pdf/genetics_bop.pdf

5. Yurgelun MB, Hampel H. Recent advances in Lynch Syndrome: diagnosis, treatment, and cancer prevention. 

 2018;38:101-109. doi:10.1200/EDBK_208341

6. Roy M, Chen H, Sippel RS. Current understanding and management of medullary thyroid cancer. 

 2013;18(10):1093-1100. doi:10.1634/theoncologist.2013-0053

As genetics in cancer care grows, so will the role of the oncology nurse.

Leah Lawrence

Articles

Cancer Stigmas Persist, But Nurses Can Help

Open Discussions Help Nurses Introduce Integrative Services

Assessing Family History: A Moving Target

Nurses Unlock Role in Cancer Genetics