Diane Lore

At 59, Andrea Ziltzer’s mother was diagnosed with breast cancer. A year later, she died. Of course, there are no words to describe the agony of losing a mother, but in Ziltzer’s case, it also forced her to make several decisions regarding her own health.

The Westchester, New York, mother of two didn’t know whether her mother carried either of the two genetic mutations for breast cancer, BRCA1 or BRCA2, but she decided to be tested. She learned at age 45 that she carried the BRCA2 mutation.

Then she made another decision: to have a  preemptive prophylactic mastectomy. “Getting tested was a much harder decision to make than deciding whether to get a mastectomy,” Ziltzer says. “I was much more scared of cancer than any operation.”

After extensive research, Ziltzer picked a one-step, nipple-sparing mastectomy in which the breast tissue is removed and replaced with an implant. In traditional reconstruction, the nipple and areolar are removed and recreated.

The nipple-sparing surgery is still uncommon and lacks consensus among breast surgeons, but it is becoming increasingly popular among health consumers as they look for less invasive options.

The main concern of opponents revolves around the fact that the nipple complex is rich in breast ducts from which most breast cancers arise. What health professionals agree on is that the pool of candidates for nipple-sparing surgery is small and falls into three major groups:

 who are considering a mastectomy as a preventive measure.

 that are not located in danger zones near the nipple.

 have biopsied the breast tissue and determined that the locations of tumors do not pose risks for the nipple-sparing procedure.

Typically, the nipple and areola are removed along with the breast tissue for reconstruction because traditionalists worry about them harboring cancer cells. One study showed tumor cells in about 20 percent of mastectomy specimens done for breast cancer, but no tumor cells were found in cases of prophylactic removal. But in recent years, researchers have revisited the danger of cancer cells lurking in the nipples or nearby tissue—and whether the risk is low enough to leave them.

The results have been mixed. One study by the Cleveland Clinic found very low rates of recurrence in 149 nipple-sparing mastectomies it performed between 2001 and 2007. Another by the Memorial Sloan-Kettering Cancer Center had similar results, with doctors concluding that the procedure could lead to excellent results with the right candidates.

This has revolutionized reconstructive surgery.

The two- to three-hour operation, with the official name of “total nipple areolar sparing with direct-to-implant reconstruction,” is a process where implants are immediately inserted after the mastectomy, according to C. Andrew Salzberg, MD, a pioneer of the surgery and chief of plastic surgery at Dobbs Ferry Hospital in New York.

“This has revolutionized reconstructive surgery,” says Salzberg, who has done 800 procedures in the past nine years. “And it has made the decision of having a mastectomy much easier for some patients because they will know they’ll look just as good—or better&mdash;almost immediately.”

However, some physicians fret that the study groups have not been large or controlled enough to give the procedure a green light.

Sally Knox, MD, a breast surgeon at Baylor University Medical Center in Dallas, says she hasn’t adopted the procedure primarily because she hasn’t seen the need.

“We are doing areola sparing, and we can save the pigment, and the plastic surgeons build a nipple that looks great,” she says. “Why save the tip of the nipple where all the ducts converge if you are getting a good cosmetic result?”

Knox says that no sensation is saved in the nipple-sparing procedure, which means the only difference is that the woman is saving the nipple and has all her own skin for the possibility of an improved cosmetic appearance.

“Some surgeons will love it, and others won’t,” she adds. “The ladies should talk over the benefit and risk with their surgeons.”

Ziltzer says the initial recovery “was not a piece of cake.” But as the healing began, “it was absolutely manageable.” And even though the immediate post-surgery look is “really unattractive,” Ziltzer says it’s a process.

Eventually, she felt she looked better than before the mastectomy.

Articles

Surgeons disagree on whether nipple-sparing surgery has benefits.

Under Reconstruction

As with any patient, it is extremely important that he or she understands what the doctor and other health care professionals are saying. That means the medical facility should provide an interpreter and not rely on a family member, especially a child, to translate. Even if the family is more comfortable translating for a patient, the hospital should try to have someone who can also speak the language present to make sure information is being delivered accurately. If a diagnosis is being presented, it should be done in the native language so patients and their families are not dealing with the stress of the diagnosis and the stress of translating. 

 Eastern philosophies and religions often embrace suffering as a state of being far more than Western philosophies and religions. However, this can pose several challenges related to guilt, shame and stoicism related to cancer and death. This also needs to be explored with the caregivers, who might feel it is their duty to be solely responsible for a patient when it’s not a good medical fit. Also, for some cases, getting several different versions of the Bible, from German to Amish to Korean, is a good first step. 

 Although every family is unique, some trends do emerge: Hispanics still tend to provide caregiving support in large family groups, as do the Amish. Several cultures encourage patients to cede their decisions to a matriarch or patriarch, who must be treated with respect by medical professionals. Many cultures expect there to be one spokesperson for the family, and it’s important that the hospital determine who that is.

 Although Americans might like to look people directly in the eye, other cultures—especially in Southeast Asia&mdash;do not. Women, especially, might not be comfortable with such communication, where it might be perceived as disrespectful, or even as a flirtatious pass. Male and female patients might want to have same-gender physicians. Personal body space is also important, with medical professionals taking a clue from the culture to determine how close is too close. 

 Different cultures might have solutions beyond traditional American medicine, and health professionals need to make sure they know what the patient is eating or taking, such as  supplements or herbs. Also, it’s critical that hospitals offer foods that follow religious guidelines, such as Kosher criteria.

 Although several cultures might traditionally have many family members to help with caregiving, the assumption of help can’t be made, since patients might be in the U.S. alone or with a minimal support group.  

Whether for good or bad, communication can start with that first glance. Here are some guidelines for health care in a diverse world. These reflect trends, not stereotypes.

Culturally Competent Care

The diagnosis was bad enough: Breast cancer.

But while Norma Davila, a native of Peru, was reeling from the news, she was also desperately trying to translate English into Spanish.

“The first time was bad,” she says. “I was very stressed out. Trying to understand what they were telling me, trying to understand the English in the middle of this very bad news.”

Now a cancer survivor, Davila is grateful for the medical treatment that saved her. But, like others who come from different cultures, countries and beliefs, she and her children wish that the nation’s health care system would also try to understand the nuances of what these families might need beyond chemo, radiation, surgery and post-op.

“Doctors just need to realize that we’re human beings too,” says Maria Louisa Aliaga, the caregiver for her 78-year-old mother, Maria Cordelia Carcamo who was diagnosed a year ago with lymphoma. “They need to work at more communication, more understanding of other cultures. It seems so basic, but it still doesn’t happen.” 

It’s a problem that hospitals know exists and one that they address in the best way they can, often with limited resources. Some have created programs run by volunteers and operated with donations, while others have made small steps by providing one or two staff members to coordinate translations. 

“We still have a long way to go,” says Gordon Hay, MSW, and director of Life with Cancer at Inova Health System in Fairfax, Virginia. “Many of us are realizing that we are not a melting pot, and that we need to recognize the differences of cultures—and how that plays into how families deal with cancer.” 

When her mom was in the hospital, Aliaga says she constantly tried to get physicians to discuss treatment and medication plans. “I would say, ‘What do you mean by that? What is this medication?’ and they would just brush me off, saying, ‘She’ll be OK. The nurse will tell you anything you need to know.’ ” 

Even worse, because her mom, from El Salvador, shared the room with an American, Aliaga got to see the contrast even more clearly. Behind the curtain, she says, there was “lots of talking with that patient and family … not so much with us.” 

Cancer can create a perfect storm of distrust and disconnect between patients and health care workers, stirring up attitudes regarding death, gender, spirituality and power. And all of that can come up in any family. 

For patients from other cultures, it can provide even more challenges. 

In Islamic communities, the very word “cancer” can be considered taboo, according to Monty Fakhouri, the Minority Cancer Outreach Program Coordinator at Beaumont Hospitals in Southeast Michigan. “They refer to it as the ‘other disease’ and the ‘unknown’ disease and do not like using it in a conversation.”  

Fear of authority can keep caregivers silent; religious or ethical beliefs can hinder the administration of traditional medication; family traditions can dictate that patients cede decision-making to the matriarch or patriarch of the family.

Norma Davila’s son, Roal Echevarria, is 24. And yet, he has been the head of the household since he was 18 and is now caring for his mother and grandmother. (His sister also helps but has been serving in Iraq.) 

“I knew since I was very young that this would be my role,” he says. “I need to be strong so that she can stay strong.” But he admits that the responsibility can take its toll. “I think I have a lot more patience than others my age,” he says. “And yes, sometimes I do think it would be easier to be at home [in Peru]. No one has time here; everyone is very busy. I think in our country, families are more unified when someone is sick.”

From Detroit to Buffalo to Atlanta, the story is the same. The learning process often is difficult. But in the past few years, more hospitals and cancer centers are making an effort to bridge the gap. 

“We need to recognize that the first part of the journey is to be able to communicate in a meaningful way with our patients,” says Stephanie Taylor, director of cultural competency at WellStar Health System in Atlanta. “And often that starts by showing respect: Respect of the culture, respect of the beliefs, respect that we might be different—but we will strive to find common ground.” 

Taylor is part of a new niche in health care treatment called, “cultural competency.” This aspect of care concentrates on bridging the gaps between traditional medical treatment and diverse populations that so many hospitals and doctors now see.In addition, WellStar has also created a “cultural diplomats” program, which taps into the thousands of names at the facility, encouraging those from different communities to be a resource for those who might encounter a patient who is facing cultural or communication barriers. 

We need to recognize that the first part of the journey is to be able to communicate in a meaningful way with our patients.

At Roswell Park Cancer Institute in Buffalo, New York, Beth Lenegan, PhD, director of pastoral care, embarked on a project to interview more than 40 different clergy members in the area. Through these interviews, Lenegan helped the Institute delve into cultural traditions regarding spirituality, illness and death, as well as modesty, dietary concerns and familial customs. 

The project, which resulted in the booklet, “Caring Across Cultures,” revealed the following cultural differences: 

 rarely have easy access to phones, which means follow-up care needs to be done personally—sometimes on the farms. Amish also prefer German Bibles and come en masse, meaning groups of 10-15 at a time. This practice tests the standard regulation of “no more than two visitors.” 

 believe it’s extremely important to keep clarity of mind during the last stages of dying, meaning pain medications are a challenge for the patient and the physician.

 still struggle with lingering issues of guilt and shame with a diagnosis of cancer, which can greatly hinder survivorship support and family caregiving.

 might want to provide traditional rites for a dying member of the tribe in the hospital, which is far different from the rites provided by a pastor or priest. 

Now the Roswell Park Institute offers German and Korean Bibles as well as the Koran and other religious texts. For Orthodox, Jewish and Muslim women, the hospital is investigating buying new hospital gowns that are longer and more modest than the traditional mid-thigh, tie-in-the-back version. And its medical professionals learned that the concept of suffering is vastly different between Eastern and Western cultures.

Roswell also has  patient navigators who help patients and their families work through the medical system as well as a program for the families that follows up as long as a year after a hospice patient has died to see how they are doing.  

“We can’t expect any one individual to be a cultural expert on every group,” says Lenegan, who’s been at the Institute for 11 years. “But this has definitely been a solid, positive start.”

Even when the extended family is present, problems in communication can be overwhelming.

Veronica Martinez, MSN, Hispanic Outreach Coordinator for Life with Cancer, recounts the case of a 21-year-old Latina with brain cancer: The patient’s mother had become so distraught that she had a grand mal seizure and was being treated on another floor. Thus, the eldest brother took over as the spokesman and caregiver for both women. 

Some of his decisions involved determining where the young woman should go for her final days. At first, he was compliant with the medical team’s recommendations for a nursing home. After he realized a nursing home’s limitations—no 24/7 visitation by her family, no regular visitations with her young son&mdash;he refused to cooperate.

The family was angry. The medical team was frustrated. 

Martinez stepped in as the family’s advocate and began the slow process of educating the family about their options. In the end, the young woman was moved into home hospice—a much better cultural solution for everyone. And one of the best developments before she left the hospital: She attended her 3-year-old’s baptism in the hospital with all of her family.

Caregivers of diverse backgrounds may need special care themselves. 

Diane Lore

Under Reconstruction

Culturally Competent Care

Minding the Cultural Gap

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