Theresa Sullivan Barger

During the two years after Nelda Blair turned 50, her gynecologist urged her to get her first colonoscopy, and she finally agreed. After the test, her gastroenterologist told her she had a rare tumor on her anus and referred her to an oncologist.

Blair and her gynecologist had thought the growth was a hemorrhoid, even though it wasn’t red or painful. It turned out to be stage 2 anal cancer, most likely caused by the human papillomavirus (HPV).

“I had no symptoms,” says Blair, a married stepmother and lawyer who lives and works in The Woodlands, a Houston suburb. “When (the gastroenterologist) went to do the colonoscopy, the tumor was right there. It’s not hard to see. My gynecologist didn’t know what it was.”

Although anal cancer is rare, the number of people developing and dying from it has steadily increased since 2001, according to a study published in November 2019 in the Journal of the National Cancer Institute. From 2001 to 2015, the incidence of anal cancer, or squamous cell carcinoma of the anus, rose by 2.7% per year, making it one of the nation’s fastest-growing cancers.

Over the years, the disease has also become more likely to be diagnosed at later stages, when it is more difficult to cure. If the cancer is caught early, survival is likely; nearly half of patients receive their diagnoses at this point, and 82% are alive five years later. For those with metastatic disease, which has spread further into the body, the five-year survival rate is 32%.

Because a higher proportion of patients are receiving diagnoses of advanced disease, the associated death rate jumped by 3.1% in each year of the study, the authors found.

The main culprit behind this trend is HPV, a sexually transmitted infection that causes more than 91% of anal cancers. Nearly all adults encounter HPV at some point; it can spread through skin-to-skin contact, including deep kissing, oral sex, hand-to-genital contact and intercourse.

When the anal cancers now being tracked began to develop, years or even decades before they were diagnosed, little could be done about the HPV that sparked them. Now, however, there is a way to stem the tide for future generations.

This opportunity lies in the HPV vaccine, which can prevent anal, cervical, oropharyngeal (throat, mouth or tongue), vulvar, vaginal and penile cancers throughout life in the eligible children and young adults who receive it.

Anal cancer became preventable when the Food and Drug Administration (FDA) approved the HPV vaccine Gardasil in 2006. The goal in giving the vaccine is to inoculate people against HPV before they are exposed to it. Initially, the Advisory Committee on Immunization Practices (ACIP) within the Centers for Disease Control and Prevention (CDC) recommended the vaccine for girls and women ages 9 to 26, but in 2011 it added boys and men ages 9 to 26. Although young adults may already have encountered some strains of HPV, the vaccine can help them avoid others.

The inoculation program evolved further in 2014, when the FDA replaced the vaccine with Gardasil 9, which protects against the same four strains as the original, plus another five. Although the HPV vaccine was approved for use in adults up to age 45 in June 2019, it’s not routinely recommended for those older than 26; the ACIP recommends that patients consult their doctors to determine if vaccination is likely to be beneficial. Possible candidates in the older age group would be those who have not had sex or are recently widowed or divorced, and thus may not previously have contracted HPV, Dr. Mona Saraiya, an epidemiologist with the CDC, says.

Although there are more than 100 strains of HPV, Gardasil 9 specifically prevents infection from the strains that cause most of the cancers — HPV-16, HPV-18 and five others, as well as two known to cause 90% of genital warts.

The HPV vaccine has been administered to millions of patients and proved safe and effective, Saraiya says. New data show that in the youngest populations, genital warts and precancerous conditions have decreased, she says.

Study findings show that HPV vaccinations provide lasting protection when given prior to HPV infection, reduce precancerous lesions and likely result in fewer cancers. If vaccination rates reached the federal government’s goal uptake of 80% of children by age 13, the incidence of anal and cervical cancers could be reduced enormously, and cancer-causing strains of HPV would virtually disappear due to herd immunity, meaning that so many people would be vaccinated that it would be difficult for HPV to infect the unvaccinated.

Yet, in the United States, only about 51% of those eligible are up to date with their HPV vaccines. Among the primary reasons cited for the relatively low level: When the vaccine was first introduced, pediatricians emphasized its role in preventing a sexually transmitted infection. Some parents feared that this would give their children a false sense of protection and encourage promiscuity. Multiple studies have disproved that concern.

Some parents questioned the vaccine’s safety. “Anti-vaxxers are very passionate about their position, but it’s based on no science,” says Dr. Joel Palefsky, a professor of medicine and an infectious disease specialist at the University of California, San Francisco. “We feel they cause a lot of harm by influencing others.”

Other studies showed that, instead of presenting the shot as one more routine childhood vaccine to be given during the annual physical, doctors introduced it as something parents could think about and return for later.

Educating physicians and parents about cancer- prevention aspects for girls and boys has improved vaccination rates, especially among Blacks and Hispanics, says Sherrie Flynt Wallington, an assistant professor of health disparities and oncology at The George Washington University School of Nursing at the Milken Institute School of Public Health. Although these two populations have high rates of seeking out vaccines, their rates for completing the HPV two- or-three- shot series are still low, she says. Vaccination rates remain low among whites and in rural areas.

“We need to do more work educating the physicians about the complete story of HPV from a biological standpoint (and why they need to be) holding those conversations with parents,” Wallington says. “You’re seeing a shift now, from parental hesitancy to provider hesitancy.”
In the United Kingdom and Australia, where children get vaccines at school, 90% of the eligible population is vaccinated.

In the U.S., four jurisdictions require that students receive the HPV vaccine to attend school: Rhode Island, Virginia, the District of Columbia and Puerto Rico. Virginia requires the vaccine only for girls.

Do mandates work? The CDC doesn’t take a position, Saraiya says. According to the National HPV Vaccination Roundtable, a coalition of 70 organizations, early studies found that these orders do not promote increased vaccination uptake because parents are able to opt out.

“Parents don’t think the government should usurp decisions made about their children. What really works is educating parents so they can make an informed decision and equipping providers with the knowledge and skills to make strong HPV recommendations. Providers are the key,” Wallington says.

One recent study credited Rhode Island’s school-entry requirement with an 11% increase in HPV vaccination rates for boys but not girls. Washington, D.C., has a 78% HPV vaccination rate and Virginia has a 59% rate, but the Roundtable reports that it’s unknown whether this uptake is linked to school-entry mandates.

The HPV connection explains a lot about some of the groups most affected by the rise in anal cancer — people who are immunocompromised and less likely to be able to fight off HPV.

Those with HIV or AIDS are at higher risk of developing anal cancer, and, in a related statistic, Black men born in the mid-1980s receive five times as many diagnoses as black men born in the mid-1940s.

“Our speculation was that the rise in incidence (in young Black men) was due to the fact that HIV infections are higher,” says Ashish Deshmukh, assistant professor of medicine at The University of Texas Health School of Public Health in Houston and lead author of the 

Journal of the National Cancer Institute 

article on the rising incidence of anal cancer. “It’s very hard to speculate why it’s increasing in women,” he added.

Women may be more at risk than men because of anatomical differences and the “HPV field effect,” Saraiya says: If the virus is in or around the cervix, it can easily spread to the anus.

Others at risk of anal cancer include women who have had an irregular Pap test or cervical or vulvar cancer, people who have had organ transplants and those with autoimmune diseases, says Dr. Van Morris, assistant professor of gastrointestinal medical oncology at The University of Texas MD Anderson Cancer Center (MD Anderson) in Houston. Middle-aged and elderly people also are experiencing a greater incidence of anal cancer, Deshmukh says. The rate of increase has been smaller for Hispanic people, and there were very few cases in Asian people, Deshmukh says.

The average age of those diagnosed with anal cancer is 62. Each year in the United States, an estimated 8,590 adults — 5,900 women and 2,690 men — will receive the diagnosis.

Anal cancer is highly curable when caught early, but there are no official guidelines for screening, says Dr. James M. Cleary, a gastrointestinal medical oncologist at Dana- Farber Cancer Institute. Experts recommend screening for those who are HIV positive and for men who have sex with men, who also face a higher risk of anal cancer, making up 10% of the population that has the disease. However, there’s disagreement within the medical community about screening men who have sex with men, partly because demand would exceed the supply of doctors who know how to perform the screening, say Morris and Palefsky.

The current screening practice isn’t great, Morris says: “There’s a need for increased vigilance among providers.”

To improve screening, the ongoing NCI-funded ANCHOR clinical trial involving HIV-positive men and women ages 35 and older seeks to find an anal cancer equivalent of the Pap test, which detects cervical cancer and has slashed deaths from the disease. In this test, doctors swab the anal lining and look at the cells under a microscope for signs of cancer or precancerous cellular changes.

In the study taking place at 17 sites across the country, people are screened for precancerous anal lesions. Those with lesions are enrolled and randomized to either receive treatment or be monitored every six months.

Although imperfect, Palefsky would like another method known as the digital anal rectal exam (DARE) to become a routine part of the annual physical for men and women. The more common digital rectal exam (DRE) is designed to look for tumors in the rectum, which is different from the anus. In both tests, doctors use their fingers to feel for lumps.

“We found that practitioners were not paying that much attention to the anus. We want them to feel more carefully for tumors in the anus,” Palefsky says. “If someone does it and feels something hard, the earlier you catch an anal cancer, the better the survival.” One condition that might be found is anal intraepithelial neoplasia, or precancerous lesions. There is no one standard of care for these lesions, which can be burned away with a low-voltage probe, cut out surgically or treated with a cancer-fighting topical cream version of the drug imiquimod or fluorouracil.

Gastrointestinal oncologists advise people to know the signs of anal cancer and see a physician as soon as they experience symptoms. These include a new growth, thinning of stools, incomplete evacuation, rectal or anal pain or itching, rectal bleeding, or discomfort during a bowel movement.

In 2004, Michael McKnight, 64, of Scottsdale, Arizona, noticed anal pain and bowel movement discomfort and changes. A few weeks later he saw a doctor, who told him it was probably an anal fissure and would heal itself. McKnight, who is gay and married, knew it wasn’t that simple. He called his primary care advanced practice registered nurse, who referred him to a proctologist. The proctologist examined the area with a scope and did a biopsy.

“It came back as anal cancer, stage 0,” says McKnight, who is retired after selling his advertising and marketing business. He underwent five surgeries within a month to remove the tumor and get margins that showed no sign of cancer, he says. He continued to go for follow-up visits, and in 2010, he received another diagnosis of anal cancer, classified as stage 2. The surgeon removed the growth, and McKnight received simultaneous chemotherapy and radiation treatment, called chemoradiation.

In fact, chemoradiation — sometimes after surgery to remove cancerous tissue — is the standard of care for anal cancer in stages 1 through 3. Most cancer treat- ment centers use a combination of two chemotherapy drugs: 5-fluorouracil and mitomycin C, Morris says. His institution uses the chemotherapy cisplatin instead of mitomycin C: “We believe it’s equally effective and less toxic for patients,” he says.

If chemoradiation doesn’t rid the patient of cancer permanently, abdominal perineal resection, which involves removing the whole rectum, can be done, Cleary says. Although the surgical procedure saves lives, it results in the need for a colostomy.

If anal cancer spreads to areas such as the lungs, bones, liver or brain, it can’t be cured, but doctors can try to halt or slow the progression with 5-fluorouracil and cisplatin and sometimes radiation. Surgery also might be an option.

Until recently, there weren’t many options for those with metastatic, or stage 4, anal cancer. An MD Anderson team led a study of immunotherapy treatments offered to patients at 10 U.S. academic centers. Early results involving 37 patients showed that 24% responded favorably to treatment with Opdivo (nivolumab), an inhibitor of the protein PD-1 that activates the immune system to attack tumors, according to findings published in 

“We’re extremely excited about this, but we still have a lot of work to do,” says Cleary, who is involved with this research. “The group that was being ignored was the metastatic patients. Fortunately, that’s changed with the PD-1 immunotherapy. ... We’re trying to figure out what to do with the 80% of patients in whom it doesn’t work.”

When anal cancer is caught early, most, like Blair and McKnight, return to their normal lives. “Don’t stop your life and do cancer,” says Blair, who continued to work through her treatment, walking around with a chemotherapy bag tucked into a black-fringed, leopard-print purse.

“My new normal is different,” she says, because her colon doesn’t work like it did before. “I no longer gain weight. Nothing stays in me very long.”

But Blair sees the silver lining: “I’m a big chocolate lover. Now I can eat a chocolate chip cookie every day if I want to.”

Articles

To halt the rise of anal cancer, everyone eligible needs to be vaccinated against HPV, which causes most cases of the disease.

Anal Cancer: Locking Out an Intruder

After enduring two surgeries that amounted to a complete hysterectomy and the removal of both ovaries, Dionne Shepperson was thrown into early menopause at 44. The mom of a 4-year-old, she had considered herself young before her surgery.

“I felt like I woke up at 65,” says Shepperson, who received a uterine leiomyosarcoma diagnosis in May 2018. She found herself dealing with hot flashes, night sweats and disturbed sleep, which she says required a huge adjustment.

“On a psychological level, I’m just trying to figure out who this new woman is. There are days when I don’t feel like a woman. (I lost) that sense of sexiness you feel when you’re combing your hair — that spark,” says Shepperson, who lives in Richmond, Virginia. “I’m still trying to find that again.”

Shepperson’s emotions reflect those of many women with gynecologic cancers. Patients and survivors grapple with feel&shy;ings of isolation, depression, distress and anxiety; sexual dysfunction; infertility; body image issues; and fatigue and pain. The changes to their body, coupled with the fear of recurrence, make it difficult to snap back to how they felt and functioned before their diagnosis. When family, friends and colleagues, who may have been supportive during surgery and treatment, expect a return to normal, survivors can feel especially misunderstood and alone.

Dionne Shepperson with her daughter, Amira Shepperson-Wood, faced fatigue and fear of recurrence.

Gynecologic cancers, which involve the female repro&shy;ductive system, include ovarian, endometrial/uterine, cervical, vulvar, vaginal and fallopian tube cancer. Six percent of all new cancers diagnosed this year will be gyne&shy;cologic, affecting more than 100,000 women, according to the American Cancer Society.

Unlike patients with breast cancer, which affects more than 260,000 women in the United States each year, women with gynecologic cancers struggle to find advocacy and support. Breast cancer awareness and fundraisers have led to early detection and more research for this disease; however, gynecologic cancers are rarely discussed, even by women in active treatment.

The public looks at cancer in stark terms — diagnosis, treatment, cure or death. But for a growing number of people, 

gynecologic cancer has become a chronic illness

, says Sharon Bober, Ph.D., director of the sexual health program at Dana-Farber Cancer Institute in Boston. “People live with the distress, the psychological worry, the adjustment to quality of life, and that is not always an easy, feel-good chapter in the whole book,” she says. “We live in a culture that doesn’t allow for narratives that are more complex.”

Survivors would feel less isolated if their family and friends allowed them to have a balance of emotions, including less upbeat feelings like worry, loss and distress, Bober adds.

Shepperson, now 45, says that when she returned to work after surgery, she still experienced extreme fatigue and fear of recurrence. She began bringing healthier lunches to work, and a fellow teacher chided her for eating an organic salad. Shepperson, a single mom, replied that she had a daughter to consider. “Her comment was ‘We’re all gonna die sometime,’” Shepperson says.

Another day, after Shepperson had a mini meltdown at work prompted by fear of leaving her daughter motherless, her boss pulled her aside and asked why she was still upset. “She (asked), ‘Didn’t they take it out?’” Shepperson recalls. “It was kind of frustrating, having that conversation.” Still, she understands the reasoning behind that assumption: “(Before getting cancer,) I think my understanding also used to be ‘Well, you took it out, so it’s gone.’”

The mental, emotional, social and spiritual effects of a disease such as cancer are known as psychosocial concerns, according to the National Cancer Institute. Mental and emotional health can be affected by not only the disease itself but also the side effects of treatment like surgery, radiation and chemotherapy.

Sexual dysfunction affects 75 to 90 percent of women treated for gynecologic cancer, Bober says. Like Shepperson, some women experience sudden menopause and estrogen depletion from chemotherapy. Pelvic radiation may lead to thinning, drying and inflammation of the vaginal wall. “Women experience pain, loss of desire, loss of arousal and (the) inability to have an orgasm,” Bober says. “These are not uncommon problems, but we don’t really talk about them.”

That includes physicians, who may not be comfortable with the topic, says Timothy Pearman, Ph.D., director of the Supportive Oncology Program at the Robert H. Lurie Comprehensive Cancer Center and a professor at Northwestern University Feinberg School of Medicine in Chicago. “Research shows that women don’t bring it up because they want their medical team laser-focused on curing their cancer,” he says. “They fear that pointing out unpleasant side effects will cause their physician to cut back on their treatment.”

Tina Vetreno’s cervical cancer was caught early, when she was 31 and had been married just four years. She had always wanted to have children. But after three surgeries to remove her cervix and lymph nodes from her pelvic area, Vetreno learned that if she got pregnant, she would need complete bed rest for her entire pregnancy and still face a high risk of miscarriage. She and her husband felt they couldn’t handle the emotional toll that would take.

After seven years of horrific pain with every period, Vetreno needed a full hysterectomy. Not only was that emotionally difficult, but the surgeries and medication robbed her of her sex drive. Her husband felt she was pushing him away, she says. “That has done so much damage to our relationship. We love each other very much. We see a marriage counselor together. We’re strug&shy;gling to get back to where we were before,” says Vetreno, 41, of Sudbury, Massachusetts. “We are trying very hard to work through the process so we don’t resent each other. It’s a challenge.”

Meanwhile, she is trying to work through her feelings. “You question yourself. You are not a whole woman. I felt like I can’t be there for my husband physically,” she says. “The piece that a lot of people don’t understand is how stressful and hard that is for the individual.”

Tina Vetreno lost her fertility because of cervical cancer, but found support from women who had been through a similar situation.

If a woman doesn’t get good care for her vaginal health, that will affect her and her partner’s quality of life, says Heidi Donovan, Ph.D., RN, a professor at the University of Pittsburgh School of Nursing. She recommends that women who have had radiation to the cervix or vagina get a vaginal dilator. Other ways to treat sexual issues from cancer treatment include hormone pills or a patch that can ease vaginal dryness and hot flashes, as well as water-based lubricants and vaginal moisturizers.

Women need to take both a physical and psychosocial approach to treatment, Donovan says: “Either one alone is not enough. Physical problems can lead to anxiety around sex. Other times, the anxiety and fear around mortality and cancer interfere with women’s emotional health.”

When Amy Murrah awoke from laparoscopic surgery for endometriosis, her doctor told her she had borderline ovarian cancer and would probably not need chemo&shy;therapy. The doctor suggested a hysterectomy, but Murrah was 29 and wanted children. The surgeon removed her right ovary, right fallopian tube, lymph nodes and omentum, part of her stomach wall lining.

Murrah later received a diagnosis of stage 3a micropapil&shy;lary serous carcinoma, a type of ovarian cancer. “I was an emotional wreck. There was the fear of never getting married, never having kids, of what my life would hold for me. Would I survive?” says Murrah, who lives in King George, Virginia.

She was far younger than most women who receive a diagnosis of a gynecologic cancer — the median age for an ovarian cancer diagnosis is 63 &mdash; and none of her friends had any experience with cancer. Murrah, who later married and had two miscarriages before under&shy;going a hysterectomy, couldn’t find a support group for young women like her.

Along with her best friend, Murrah attended a cancer march in Washington, D.C., and found it cathartic, she says, but that was a one-time event. She tried joining online chat groups but pulled away because other participants were dying, which made the prospect of her own death too real.

Wendy Ericsson and her niece, Lindsay Sweet, participate in the National Race to End Women’s Cancer.

For Shepperson and Vetreno, online support groups have proved helpful. Talking with women who described similar experiences, such as judgement around cervical cancer and stories of hurtful, ignorant comments, helped Vetreno learn, she says. “I got to talk through the stigma and emotional impact — and the fact that I can’t have my own children &mdash; with a group of women who understood,” Vetreno says. “It was pretty amazing.”

Shepperson joined a Facebook support group. Although she still fears encountering someone with a similar cancer who isn’t doing well, the connec&shy;tion has been a huge blessing overall, she says. “There’s no one who can get what you’re going through physically and emotionally like these ladies. You can talk about anything,” she says. “You can say, ‘Today I’m thinking about what will happen to my daughter. I just feel really afraid.’”

The women also share photos of their scars — their badges of honor. “Nobody in your regular life wants to see it, but for me, it’s a reminder of what I have gotten through,” Shepperson says.

Although no one-size-fits-all approach can manage side effects, exercise can help in many ways. 

It is the most important thing you can do,” says Pearman. “It affects fatigue, pain, anxiety, depression, body image and sexual dysfunction.”

Twenty years ago, knowing how important it would be to her emotional and physical health, Murrah continued teaching group fitness classes. “It gave me a purpose and a reason to get up in the morning,” says Murrah, now 50 — and cancer-free for 20 years. “It was a challenge, and I had to modify my activity level, but it was a joy to see the students return to root me on during every class. That was a tremen&shy;dous part of keeping my emotional health in check.”

After Wendy Ericsson completed surgery and six months of chemotherapy for fallopian tube cancer, which accounts for 1 to 2 percent of all gynecologic cancers, she was so fatigued that walking felt like moving through wet cement. As soon as she could muster the energy, she took advantage of Livestrong’s 12-week YMCA member&shy;ship that provides free or low-cost exercise regimens for cancer survivors, along with professional advice tailored to survivors.

“It was wonderful to be surrounded by others in the same situation, working toward the same goals of feeling stronger and better,” says Ericsson, 59, of Worcester, Pennsylvania. “I went in feeling like a limp noodle and left feeling like I could do things again.”

Encouraged by a friend, she took up restorative yoga, which incorporates meditation and mindful breathing. It has been extraordinarily helpful, she says, producing complete and total relaxation. “I don’t care if you’re diagnosed with stage 1a or stage 4b, recurrence becomes a lifelong worry,” she says.

Ericsson has chosen to channel her energy into advocacy work. She attends survivors’ courses to learn how to live with cancer and surrounds herself with positive, encouraging people. She has also learned to accept help from friends. “Let people help you. It can be uncomfortable, but it’s important for both of you,” she says. “It strengthens your relationships and makes people feel useful.”

Patients speak up on the rarely discussed side effects of gynecologic cancers.

Under the Spotlight: Patients Speak Up About Gynecologic Cancer Side Effects

When she learned her breast cancer had metastasized, Kim Green found acceptance by turning to her Roman Catholic faith. 

When Kim Green learned that her breast cancer had metastasized two years after her original diagnosis, she turned to her Roman Catholic faith.

At 36, she didn’t know if she would live to see her children start school and decided to turn the worry over to God: “This is too much for me to handle. I’ll let you handle it, and I’ll tag along for the ride.”

Her children are now 23 and 20, and her faith has deepened during the 19 years she has lived with incurable stage 4 cancer.

“I became very comforted going to my church. I found a lot of love and support and prayer,” Green says. Church members and neighbors raised money to send Green and a friend to Lourdes, France, a major Roman Catholic pilgrimage site where people have reported miraculous cures. Green drank from the spring and bathed in its waters, believed to be healing. She extended her stay to a full week, forgoing a planned trip to Paris.

“That was when I came to a point of acceptance. I was just going to live my life as best as I could each day and not wait to die,” says the Farmington, Connecticut, resident. Patients with cancer who have a religious or spiritual belief system report better physical health, according to the results of a meta-analysis of studies involving more than 32,000 adults with cancer. Those who believe in something outside themselves, whether it involves an organized religion, faith in a higher power or a spiritual connection to nature, report a stronger ability to cope with a cancer diagnosis and whatever follows.

“People who are more religious or spiritual say they feel better,” says Heather S.L. Jim, lead author of the study published in 2015 in Cancer, a peer-reviewed journal of the American Cancer Society. “One reason they may feel better is because they may get more social support. We know physical, emotional and social health are all interconnected.”

Because the study was based on how patients said they felt, Jim says, the authors can’t conclude whether religious or spiritual beliefs help people live longer or delay their cancer’s progress — the data aren’t available. Social connectedness, on the other hand, is associated with longer life; for example, patients with prostate cancer live longer if married rather than single.

Researchers for the studies included in Jim’s metaanalysis looked at age, gender and clinical variables such as type and stage of cancer, and the correlation with better physical health was consistent across all patient characteristics, says Jim, an associate member at Moffitt Cancer Center in Tampa, Florida.

The form of belief system didn’t seem to matter. “It wasn’t going to church, praying or meditation. It was having a purpose in life, feeling a belief in something greater than oneself,” Jim says. “It’s the sense of connection that seems to be important, not the content of the religious beliefs.” Those who were isolated reported worse physical, emotional and social health. People who attend religious services may be surrounded by a community that provides prayer and perhaps meals, visits and practical support.

Those who are spiritual say they feel lifted by the knowledge that people are sending good thoughts or praying for them, say Jim, chaplains and cancer survivors.

The form the support takes is as varied as the people who offer it. Toward the end of Bambi Fass’ life, when she could no longer make it to services, friends from her Oakland, California, synagogue and her rabbi visited daily to pray with her. The rabbi and a longtime friend played their guitars and sang. This comforted both Fass and her husband, Richard Tash.

The Rev. Susan J. Dunlap recalls that when a member of her church in Durham, North Carolina, finished chemotherapy, each person on the church’s care team brought the patient one flower from their garden to create a bouquet. Another person living with cancer said that instead of accepting the pastors’ offer to lay hands on him, he’d rather receive paper cutouts of church members’ hands. People fulfilled the request, adding messages of support.

“It was very meaningful to him to receive all those hands. It really communicated the love and care and the continued belonging in our community,” says Dunlap, who teaches at Duke University Divinity School and leads a dual-degree master of divinity program at the University of North Carolina at Chapel Hill School of Social Work. “A lot of times when people are sick, they’re cut off from the community. It’s helpful for communities to reiterate, ‘You’re one of us. We’re praying for you. We love you.’”

Rabbi Gershon Albert, right, helped Richard Tash's wife through her journey. - PHOTO BY MARIELLE HAYES

Regardless of their belief system, many people face a crisis of faith when they learn they have cancer. This is normal and, as the Book of Psalms shows, part of human history, says the Rev. Jill Bowden, M.Div., director of chaplaincy services at Memorial Sloan Kettering Cancer Center in New York City. In many psalms, the writer describes feeling abandoned by God.

At the time of diagnosis, people often ask why they’ve gotten cancer. They wonder if God is angry with them and sometimes blame themselves, say Bowden and other chaplains.

Before her death two years ago, Fass had melanoma for five years, continuing to work as a physician assistant. She received immunotherapy and didn’t appear to be sick until the last nine months of her life, when treatment stopped working, her husband says.

“I think Bambi struggled with questions many people struggle with, such as: Why do bad things happen to good people?” says Rabbi Gershon Albert, senior rabbi of Beth Jacob Congregation in Oakland. “She found comfort in the Jewish tradition and had the ability to believe while still holding onto those questions. We have a lot of sources for continuing to believe when all hope is lost. I don’t think there was ever a day when she didn’t pick up her Book of Psalms. She took a lot of comfort in knowing that people were praying for her. She lived in that paradox.”

Studies show that those with a deep belief system have stronger coping skills during treatment and more peace at the end of life — and that includes atheists. Interfaith chaplains say they can help atheists feel peace by asking where they find support and strength. The chaplains mirror patients’ language so they feel comfortable expressing their fears and questions, says Larisa Waya, interfaith chaplain at Dana-Farber Cancer Institute in Boston.

“I think people who have meaning and purpose in life, and have a focus which allows them a sacred space to refocus on what’s most important to them, experience better outcomes because they’re able to process better,” says the Rev. Regina Pair Allen, senior chaplain at The University of Texas MD Anderson Cancer Center in Houston. “Those who have no outlet, no core, no compass, are wandering in the desert of the journey of cancer.” Those with strong faith demonstrate higher rates of acceptance of their fates, chaplains say.

Green, who left Lourdes with a sense of peace and calm, says her faith has helped her look at each day as a gift. Rather than counting birthdays, she says, she embraces each day. Sure, she has her bad moods, anger and frustrations like anybody, she says, but her morning meditation practice centers her and reminds her to soak up smells, sights and experiences.

Before her diagnosis, Green’s faith was strong, but she didn’t attend Mass every week. After returning from Lourdes with a deepened faith, she began a daily habit of reading from the devotional book “Jesus Calling: Enjoying Peace in His Presence,” by Sarah Young, as well as meditating, journaling, observing nature and enjoying her coffee.

The average life expectancy for someone with metastatic breast cancer is two years, and Green has lived with this form of the disease for 19 years, long enough to celebrate her 23rd wedding anniversary. “I’m very, very grateful. I try to express that many times during my day,” says Green, 54. “That’s one of the things that I love having changed about myself because of this disease. I’m not just flying through life. I mentally try to slow down. I try to absorb as much as I can when I’m in a situation. I need to make sure that each day is not spent worrying about the day I’m not going to be here.”

For instance, when her daughter recently visited her for a couple of days, Green focused completely on their time together: “I wanted to smell her and be near her,” she says. Green does not believe that God gave her cancer.

“Cancer happened, and God gave me a way to deal with it,” she says. During her stay in Lourdes, she says, she hoped to get closer to God and deepen her understanding. She saw immense suffering among the other pilgrims and encountered people who were loving, kind and hopeful.

“That’s where a lightbulb went off,” she says: “‘Just go with this, Kim. Stop trying to feel like you have to control this. Just let go and stop waiting to die.’ ”

Similarly, Fass lived fully and intentionally. When her treatment stopped working, she transitioned to hospice care and embraced her impending death, her rabbi says: “I think that was made easier because of her faith.”

Witnessing his wife’s faith gave him strength, Tash says. At the time she switched to in-home hospice care, he was raising his 3-year-old granddaughter, too, so he was a caregiver to two people. “(That) made me dig deep about who I am and what I can accomplish,” he says. “Her faith — her energetic faith &mdash; helped me a lot.”

Contrary to assumptions that doctors focus solely on science and leave spiritual and emotional matters to chaplains and social workers, some doctors pray for their patients daily, before treatment or surgery, chaplains say. “We have doctors who pray over their patients. At shift change, you’ll see doctors and nurses going in and out of the chapel,” Allen says. “We provide prayer every morning before we do our rounds, to bless our work and pray over our patients that they feel the tangible touch of God.”

Similarly, if patients request it, Dana-Farber Cancer Institute chaplains invite everyone in the room before a stem-cell infusion to gather in a circle for a blessing over the bag of stem cells, Waya says.

That remains a mystery. On a scientific level, the factors that contribute to whether a person stays cancer-free or experiences progressive disease are multifaceted and interconnected with the illness, genes and other biological factors; behavioral factors, such as smoking; the patient’s social and emotional health; and other conditions, including, perhaps, faith, according to Jim. “There are so many factors at play that I don’t think we can identify all of them and model their interactions in a way to really be able to tell whether people can experience spontaneous healings and why. There are things outside the realm of science and more within people’s spiritual faith,” says the researcher.

She adds: “There’s so much of living and dying that we don’t understand that’s outside the realm of human understanding that we may never know.”

People with cancer who subscribe to a strong spiritual belief system report a better ability to cope.

Keeping the Faith: Spirituality May Help Patients Cope

NANEA M. HOFFMAN found it helpful to adjust some family traditions as she faced the holiday season after treatment for cancer. - PHOTO BY: TRIFON ANGUELOV

Nanea M. Hoffman had recently completed six months of treatment for breast cancer — a double mastectomy, six rounds of chemotherapy and immunotherapy &mdash; when the holidays rolled around.

Her Thanksgiving had been shot because of fatigue and a diminished ability to taste, and she expected to be feeling better by December. To her surprise, she felt her weakest, had no energy and hurt from head to toe. Yet her friends and family wanted her to celebrate.

“Around the holidays, we put so much emphasis on joy and gratitude,” says Hoffman, 47, of Santa Clara, California. “It’s very difficult to find your joy and gratitude. You’re just thinking about, ‘How am I going to make it to the bathroom?’ ”

Regardless of where people are in their cancer journeys, the holiday season often poses extra physical and emotional challenges. Those coping with cancer can expect this season of Hanukkah, Christmas, Kwanzaa and New Year’s — and any other holidays throughout the year &mdash; to be different, even if their treatment is over, mental health experts and cancer survivors advise. They suggest that patients make a list of what they want to do and let go of the rest. Ask for and accept help, they say. All feelings are OK, even conflicting and contradictory emotions.

Like many mothers, Hoffman typically coordinated holiday celebrations, but last year, her family stepped up.

“I’m a control freak. One of the best things was for me to be so weak that I couldn’t even boss anybody around,” she says. “‘OK, whatever’ is the best coping strategy I know.”

Because clinicians know when various treatments are likely to cause the heaviest burden of side effects, patients can ask them about adjusting the action plan, suggests Richard Dickens, M.S., LCSW-R, 64, a twotime cancer survivor and director of client advocacy at the patient advocacy group CancerCare (cancercare. org), based in New York City. For instance, patients may be able to postpone surgery or take a week off from chemotherapy.

In addition, mental health experts advise that patients make a list of holiday traditions and decide with loved ones which routines to keep and which to modify or skip.

“If hosting is something that fills your cup rather than drains it, then it might be a tradition to keep,” says clinical psychologist Wendy Lichtenthal, Ph.D., of Memorial Sloan Kettering Cancer Center in New York City. “This being said, one of the most important things is to be flexible and not continue to do something that isn’t working for you.”

Hoffman and her family normally host a New Year’s celebration with their friends and their kids, and she was determined to keep that tradition. So, last year, her husband devised a plan that would allow them to have friends over, enjoy the party and still accommodate her diminished energy level.

They told their friends in advance that, when Hoffman got tired, she would go to bed but wanted everyone to stay and enjoy themselves.

When she hit a wall, she says, “I felt OK to say that. It meant a lot to me that it didn’t have to be a thing. I was able to participate on my own terms.”

Keeping traditions, with modifications, could mean sitting and putting hooks on the ornaments while loved ones hang them on the tree. Or those who lack the energy to lead the holiday baking could select the music or sit in the kitchen so they’re part of the conversation, even if they’re not putting the cookies in the oven or frying the potato latkes or doughnuts.

The Christmas after Jane McGovern completed months of treatment for breast cancer, instead of cooking the customary Christmas Eve feast, she went to a restaurant with her family. She chose the traditions she wanted to continue, such as Christmas morning brunch, and scaled back on the rest.

She told her husband and three kids, then ages 15, 18 and 22, “This year, we’re going to do a tree, but I’m not going to go crazy (with decorating) outside,” says the Scituate, Massachusetts, resident, now 54. “I tried to keep things as normal as possible for my kids,” she says. “Christmas is always important to me and my family. The holidays are a joyful time for me.”

McGovern embraced the idea of picking and choosing, especially when it came to holiday parties, which she found draining physically, mentally and emotionally.

“You don’t blend in with the crowd when you’re bald. By Christmas, I had my ‘Marine do,’ like a buzz cut,” she says. “You have to deal with people who don’t know what to say, and you have to make them feel better. … Sometimes people will tell you things, (like) they had a (cancer) scare. They don’t know what to say. We’ve all been there. I’ve been that awkward person.

“As the person going through that, you only have so much energy to give. It does take energy to try to make someone feel better,” she says. “Respect the fatigue. Give into it.”

During and after treatment, with compromised immune systems, survivors can give themselves permission to avoid shopping malls, airplanes and holiday parties. Wendy Griffith, M.S.S.W., LCSW, OSW-C, senior social work counselor with the University of Texas MD Anderson Cancer Center, advises patients who have compromised immune systems to let loved ones know that they can’t go to a holiday party if there are guests sick with something contagious. That allows the host to be aware of the patient’s needs and that it will be necessary to ask either the person with a cold or the person with cancer to stay at home. Most of the time, she says, people respect that.

The expense of cancer treatment — copayments, time away from work, medications and hospital parking fees &mdash; can crimp holiday spending.

When Dickens, of New York City, was 37 and recovering from initial treatment for non-Hodgkin lymphoma, he couldn’t fly to his parents’ house in Chicago for Christmas, as he normally would have. He felt badly that his family was saddened by his absence. Since Dickens had been out of work on disability and didn’t have the money or the strength to buy and ship gifts, he ordered from catalogs and went without a tree.

Luckily, he had a strong support network of friends to help him through the season. Accepting assistance, as Dickens did, allows people with cancer to keep their routines as close to normal as possible. Cancer survivors and social workers advise asking for help when needed and accepting help when offered, saying it comforts both the patient and the friends and family members who want to do something, especially in the season of giving.

“Ninety percent of the time, people genuinely want to help you. Use that help,” says Griffith. “Put yourself in their shoes. Would you be OK with bringing a dish to someone’s house if they had cancer? Even if it’s a little bit of an injury to the ego to ask for help and admit to things you can’t do, allowing loved ones to participate makes them feel good about being able to contribute to your well-being.”

The holidays can be fraught for anyone, but throw in a cancer diagnosis, and patients and their loved ones are bound to feel a wide range of emotions, mental health experts say.

“It’s not spoken, but everyone’s wondering, ‘Is this going to be the last Christmas we’re all together?’ ” says Jane McGovern’s husband, Gary.

To change that focus, he says, he told his kids, “‘With all that Mom has been through this year, this Christmas is going to be especially nice for her. So, let’s make a point to chip in and do as many things together as we can.’ Never once did I say to the kids, ‘This is really serious.’ You don’t have to. The kids knew. They could see the physical changes.”

Patients themselves can have the same kinds of concerns and may even be thinking of friends they met through treatment or support groups who died. “There’s a certain amount of grief that comes along with cancer during the holidays. Even if you’re able to do a lot of your traditions, you may still be wondering, Is this my last Christmas? Is this my last New Year’s? What will next year be like?” says Griffith.

Parents of children with cancer, and patients with cancer who are parenting youngsters, tend to work hard to hide their fear and sadness from their children. Griffith recommends that they write in journals, take baths or practice whatever form of selfcare that allows them to express those emotions.

She notes, “You’re allowed to cry during the holidays. You can be angry. You can be sad. You can be everything and anything you feel.” It’s OK for loved ones to see the patient cry, she adds. If the person with cancer needs to leave the room, that’s fine too. In general, Griffith advises patients to let go of any “shoulds.” Acknowledging and working through emotions may be difficult at first, but eventually it allows people to “really feel happy, versus feeling fake happy,” she says.

“We hope that patients can give themselves permission to feel whatever they may be feeling: sadness, frustration, anxiety and grief over what has changed,” Lichtenthal says. “A cancer diagnosis and related circumstances, such as treatment side effects, often feel beyond one’s control, but how patients choose to respond to these circumstances is within their control. Patients can choose what the holidays mean to them. They can decide the holidays are a time to connect to those most important to them. A time to celebrate tradition. A time to get away. A time to give themselves the gift of self-care, respite or engagement in some other meaningful activity.”

Hoffman remembers telling her husband that he’d have to figure out what she and the family needed — paddle his own canoe and maybe do a little paddling for her. He and her closest friends gave her the freedom to be “ugly and messy,” she says. “I wanted to be able to say I hated everything.

I wanted to be with a friend who could see me, and (to be able to) say that everything sucked. It’s a very lonely experience, sometimes especially when you’re surrounded by people you love.”

The best gift for those living with cancer during the holidays is the freedom to cope by changing traditions and acknowledging emotions.

Theresa Sullivan Barger

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