The Unmet Needs of African American Women with Breast Cancer

doi:10.4236/abcr.2012.11001

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Advances in Breast Cancer Research, 2012, 1, 1-6

http://dx.doi.org/10.4236/abcr.2012.11001 Published Online April 2012 (http://www.SciRP.org/journal/abcr)

The Unmet Needs of African American Women with

Breast Cancer

Marlene M. von Friederichs-Fitzwater1, Reverend Tammie Denyse2

1University of California Davis, School of Medicine, Sacramento, USA

2Carrie’s TOUCH, Sacramento, USA

Email: marlene.vonfriederichs[email protected]

Received February 28, 2012; revised March 27, 2012; accepted April 5, 2012

ABSTRACT

Breast cancer is the most common cancer in women and treatment includes various combinations of surgery, chemo-

therapy, and/or hormone therapy. The multimodal treatment of breast cancer improves survival outcomes, but it also

contributes to a prolonged period of medical intervention with associated physical and emotional consequences. How-

ever, we know less about the specific clinical experiences of African American (AA) women during treatment for breast

cancer and in survivorship. The studies that have addressed the issue of breast cancer in AA women have focused pri-

marily on early detection and epidemiological variables such a screening, mortality and staging at diagnosis. In our

study, in-depth semi-structured phone interviews were conducted to explore the clinical experiences, concerns and

needs of AA women who had survived breast cancer. The AA women reported that their physicians did not provide

adequate disease and treatment information; did not discuss clinical trials with them; and did not offer access to support

services.

Keywords: Breast Cancer; African American Women; Treatment; Survivorship

1. Introduction

Breast cancer is the most common cancer in women and

treatment includes various combinations of surgery, che-

motherapy, and/or hormone therapy [1]. The multimodal

treatment of breast cancer improves survival outcomes,

but it also contributes to a prolonged period of medical

intervention with associated physical and emotional con-

sequences [1]. Research has demonstrated that women

with disease-free survival beyond five years often experi-

ence psychological d istress, concerns about reh abilitation,

and employment difficulties as a result of the diagnosis

[2-5].

However, we know less about the specific experiences

of African American (AA) women during treatment for

breast cancer and in survivorship. The studies that have

addressed the issue of breast cancer in AA women have

focused primarily on early detection and epidemiological

variables such a screening, mortality an d staging at diag-

nosis [6-9]. The few studies from the 1990s that add-

ressed psychosocial issues among breast cancer patients

found that AA women experience a high degree of fa-

talism, lack of knowledge, lack of trust in the medical

system and concerns about social and emotional support

[10,11]. A study by Ashing-Giwa and Ganz [12] used

three qualitative methods to obtain more information

about the breast cancer experiences of AA women find-

ing a lack of adequate social support and a need of AA

women for advocacy and support during their breast can-

cer diagnosis and treatment. The women in their study

also lacked specific information about their diagnosis and

treatment options.

In our study, in-depth semi-structured phone inte rview s

were conducted to explore the experiences, concerns and

needs of AA wom e n who ha d s ur vived breast cancer.

2. Method

A mixed-methods approach (qualitative and quantitative)

was used in the study. The participants were recruited

from breast cancer support groups for AA women, sur-

vivorship events, community groups and breast cancer

support agencies. A semi-structured instrument was de-

veloped that included open and close-ended questions on

demographics, diagnosis, treatments, clinical trials, in-

formation seeking, support services, lingering effects of

treatments, insurance coverage and employment history.

The instrument was field tested with five AA breast can-

cer survivors. AA breast cancer survivors were called to

verify their eligibility and willingness to be interviewed

and consented; telephone interviews were then scheduled

and conducted with those who agreed to participate. All

identifying information was removed from the data and

stored separately.

M. M. VON FRIEDERICHS-FITZWATER ET AL.

3. Results

A total of 137 participants completed the surv ey, with the

average age of 52 years at time of diagnosis; 49% were

not married; and 56% had graduated high school or com-

pleted a two-year degree, 30% had completed four years

of college. Seventy percent had been diagnosed with

breast cancer within the past five years; 30% had been

diagnosed prior to 2006; and six of the participants had

experienced a recurrence of cancer since their initial

diagnosis.

3.1. Treatment Experiences

Participants reported waiting from 0 - 60 days from diag-

nosis to the beginning of treatment with 30% reporting 0

- 15 days, 43% reporting waiting 16 - 30 days, 16% wait-

ing 31 - 45 days and 5% waiting 46 - 60 days. Five per-

cent did not respond to the question. Participants said

they believed that beginning treatment promptly after

diagnosis was important and the majority indicated that

they were comfortable with the length of time they ex-

perienced. The women (22%) who reported waiting be-

tween 31 and 60 days before beginning treatment were

not satisfied with the wait time; they reported a desire for

some type of support during the time between diagnosis

and the beginning of treatment. See Figure 1.

Sixty percent of the women surveyed had surgery (ma-

stectomy single breast or mastectomy double breast; lum-

pectomy) frequently followed with radiation and/or

chemotherapy. None of the women had breast recon-

struction at the time of the initial surgery and one woman

had breast reconstruction after her initial surgery. Four

women reported “Other” treatments along with surgery

(e.g., hormonal treatment) (See Figure 2 for types of

treatment received.).

The majority of women (78%) received the treatment

(s) recommended by their doctors (oncologist, surgeon);

70% reported that the treatment was what they would

have chosen while 19% said they weren’t sure and had

wanted more information; 5% would not have chosen the

treatments they had.

Eighty-one percent of the participants did not receive

any complementary medicine (e.g., acupuncture, acupre-

ssure, massage, homeopathy, herbal remedies, etc.), but

said they would have liked to have information about

such options to help with side effects and overall well-

being.

3.2. Information Needs

Ninety percent of the women were satisfied with their

treatment, but 24% were not satisfied with the informa-

tion they received from their doctors on breast cancer and

treatment options. The women who were not satisfied

with their treatment or with the amount of information

Time Lapsed Between Initial Diagnosis & Beginning

of Treatment

30%

43%

16%

5% 0% 0%5%

10%

20%

30%

40%

50%

0-15 days

16-30

days

31-45

days

46-60

days

Longer

t han 60

days

Not Sure

Response

Figure 1. Time lapse between diagnosis and treatment.

Treatments Received

0510 1520 25

Surgery - Lumpectomy

Sur g e r y - Mas t e c t o my Si ngle Br e as t

Su r ger y - Mastect om y D ouble Bre ast

Chemotherapy

Radiation

Breast Reconstruction at Time of Surgery

Breast Reconstruction After In itial Surgery

Other

No Response

Figure 2. Treatments received.

received reported that they wanted more aggressive treat-

ment, a second opinion and more information specific to

AA women (e.g., how they might respond to treatment,

side effects they might expect, etc.).

The majority of participants (60%) did seek informa-

tion on their own with 45% of them using the Internet;

9% using print materials and another 9% getting second

opinions. Almost half of the women (43%) said their

doctor or other healthcare provider did not provide in-

formation about support services while they were going

through treatment.

3.3. Support Services

Sixty-two percent of the women reported wanting sup-

port services such as opportunities to have one-on-one

discussions with a woman who was a breast cancer sur-

vivor such as a peer navigator to help them understand

what to expect and provide accurate and credible infor-

mation. They also wanted a list of support groups and

someone from a support group to meet with them before

leaving the hospital. Some participants wanted access to

complementary services such as massage and yoga.

When asked what support services they actually expe-

rienced, the majority said “none,” with one woman re-

porting that she went to an American Cancer Society

Look Good, Feel Better class and another stating she had

met with a therapist. Of those who responded to the

question, 24% were not at all satisfied they received dur-

M. M. VON FRIEDERICHS-FITZWATER ET AL. 3

ing treatment. With respect to the support services they

received after treatment, 22% were not at all satisfied.

3.4. Clinical Trials

AAs tend to be underrepresented in clinical trials and

78% of the women in this study reported that their doc-

tors did not talk with them about enrolling in a clinical

trial or even discuss the option. The majority of women

(78%) said they would have liked to know about clinical

trials and if appropriate, would have enrolled.

3.5. General Health Status

Over half of the participants reported that on average

their health was about the same as it was a year ago and

68% said they did not h ave any current health condition s

that limited their ab ility to work or carry out daily activi-

ties. However, 8% reported “lingering side effects” such

as pain and lymphoedema; and 11% said they suffered

from insomnia and fatigue since treatment. Twenty-two

percent have other chronic diseases such as diabetes, hy-

pertension and arthritis.

3.6. Lingering Effects

Participants reported such lingering effects as fatigue,

anxiety, depression, stress, new health problems (“heart

problems,” “hypertension,” “joint pain”), recurrence or a

new cancer type diagnosis and neuropathy. They also

reported not being satisfied with the results of surgery

and swelling around chest area. Ninety-two percent said

they had an ongoing fear of recurrence of cancer and

were more aware of their bodies than before their diag-

nosis and treatments.

3.7. Insurance and Employment

Eighty-six percent of the women had some form of in-

surance during treatment and continued to have coverage

after treatment. They reported that having adequate in-

surance was a major concern, but they were able to util-

ize private or public coverage.

When asked if they had trouble taking time off work

during treatments (if they worked), 27% said they did

have problems and one woman who reported not having

problems taking time off also reported that her position

was filled during her absence. Thirty-five percent did not

answer the question and 27% said they didn’t work out-

side the home.

While the participants d id not have to worry about co-

verage for their treatments, those women who worked

outside the home did struggle with work-related prob-

lems during treatment and when they return ed to work (if

their former jobs were available). This caused additional

stress for women who had to deal with co-workers and

supervisors who treated them differently upon their re-

turn, and for those who had to seek new jobs. Partici-

pants reported being uncertain about to how to commu-

nicate with supervisors or colleagues about their cancer

experience.

3.8. Specific Concerns as AA Women with Breast

Cancer

When asked specifically about they thought their experi-

ences were different from non-AA women diagnosed

with breast cancer, the majority of participants reported

the following concerns relevant to the quality of their

care:

 Uncertainty about whether or not healthcare providers

understand the possible differences in response to

treatments of AA women diagnosed with breast can-

cer;

 Potential for poor quality care or lack of adjuvant

therapies because of race or socioeconomic circum-

stances;

 Perceptions that information was being withheld be-

cause of their race; and;

 Unavailability of resources and support groups spe-

cifically for AA women diagnosed with breast cancer.

4. Discussion

While the sample size for this study was small, the data

obtained adds new insights into understanding AA wo-

men’s experiences with breast from diagnosis through

short-term and long-term survivorship and will help to

guide the development and delivery of patient education

and support services to better service AA women.

We learned that the time between initial diagnosis and

the beginning of treatment can be from 0 - 60 days with

21% of the women waiting 31 - 60 days. Studies indicate

the highest levels of anxiety occur between diagnosis and

the beginning of treatment [13]. The waiting time pro-

vides an opportunity to reach out to AA women diag-

nosed with breast cancer to help them prepare for their

first visit with an oncologist or surgeon and their subse-

quent treatment. Providing one-on-one support during

this time by a trained peer or patient navigator, prefera-

bly AA, would lay the groun dwork for contin ued support

through treatment and fulfill the reported need for more

accurate and credible information as well as support.

They could also be linked to other resources such as the

Breast Cancer Network of Strength and the American

Cancer Society during this time as they plan to begin

treatment.

Many of the survivors lacked adequate information

from their physicians about their diagnosis, treatment and

symptom management. Some sought information on their

own from the Internet, print materials and getting second

M. M. VON FRIEDERICHS-FITZWATER ET AL.

opinions, but were not confident that it was accurate or

credible. This lack of adequate information sometimes

resulted in treatment decisions that women later regretted

or questioned. Clearly, there is need to provide the amount

and level of information required by patients prior to

their treatment decision-making and to help patients

make sense of the available information.

In addition, the women did not receive information

about support services and resources to the extent they

desired. With the majority of women single, widowed,

separated or divorced, they often did not have adequate

family support, but some did report that they received

assistance from their churches and friends. Some of the

women raised the need for support groups and resources

specifically for AA women and reported that they felt

uncomfortable in support groups where they were the

only AAs. One woman said:

I went to a support group and it was all these white

women talking about their families and their jobs. I felt

out of place, like a sore thumb. I am not married, don’t

have family here and I don’t work. I never went back.

In addition to the demographic make-up of the support

group, some women are comfortable in a group format

for support and some are not. For the latter, there need to

be options so that women have choices about receiving

support (one-on-one support, telephone support, Internet

support groups, video-confer ence support groups, etc.).

Although many factors contribute to poor cancer sur-

vival rates among racial and ethnic minorities, health-

related behaviors such as information-seeking and par-

ticipation in treat ment decision-making, remain a power-

ful factor in cancer mortality rates among all groups [14].

Additional research is needed to identify behavioral fac-

tors associated with poor outcomes in AA cancer patients,

particularly in those areas that may be amenable to in-

tervention [14]. According to Pope-Davis & Coleman,

culture reflects a group’s or individual’s social and phy-

sical environment, communication patterns, and shared

beliefs, values and traditions, all resulting in common

lifestyles, attitudes and behaviors [15].

These same factors can result in insufficient informa-

tion seeking and acquisition, which can lead to ill-consi-

dered decisions about alternative treatment options [16].

Patients who are adequately informed about their illness

and treatment options are better able to maintain a sense

of control (cite) and to cope with the uncertainty of the

illness and its treatments (cite). Twenty-four percent of

the women in this study were not satisfied with the in-

formation they received on their breast cancer and treat-

ment options and said they did not understand treatment

options, did not understand the information provided,

were not told about long term side effects, and did not

receive information on how medications would effect

AA women. They also reported that physicians did not

spend enough time talking to them. These are all issues

that can be addressed and ameliorated with tailored pa-

tient education materials, tools for healthcare providers

to assess patient information needs and the use of under-

standing strategies such as “Repeat-Back” by healthcare

providers (doctor asks the patient to repeat back what

he/she said).

Enrollment in cancer trials is low for all patient g roups.

Racial and ethnic minorities, women and the elderly are

less likely to enroll in cancer clinical trials than were

white, men and younger patients, respectfully [17]. It is

well known that minority recruitment into clinical trials

faces a problem with rates of participation, ranging from

3% to 20% [18]. The proportion of clinical trial partici-

pants who are black has also declined in recent years

[17].

There are a number of reasons for low enrollment of

all patients and some specific reasons for low enro llment

of minority patients: setting of care (community clinic,

academic institution, etc.); ineligibility of patient for

ex isting trials; lack of available clinical trial for patient’s

cancer type/stage; patient’s health status; and in some

states, lack of insurance to cover clinical trial participa-

tion. Patients in California are guaranteed coverage for

standard of care while participating in appropriate clini-

cal trials, but there are at least two specific reasons for

the lack of minority enrollment. Past discussions and re-

search on minority enrollment have highlighted several

barriers that are more prevalent among specific minority

groups [17]. First, minorities are more likely to express

concerns about exploitation, dishonesty regarding risks

of experimental treatment, and motivations of researchers

[14]. A strong belief that physicians are not strong allies

for their AA patients contributes to lack of trust and fear

of being lied to/or experimented on [14].

For some this distrust is based at least in part on the

abuses of AAs in the Tuskegee experiments. Other stu-

dies have suggested that minority patients may be less

likely to be offered trial participation [18]. In our study,

we found that in the majority of encounters with patients,

physicians did not raise the topic. Several of the women

indicated they would have liked to discuss the option

with their physicians, but didn’t because the doctors

didn’t bri ng it up.

This might also indicate the usefulness of trained peer

navigators being assigned to newly diagnosed patients

and available to provide information on clinical trials as

well as suggest strategies for discussing them with phy-

sicians. It may also be that physicians are more reluctant

to discuss clinical trials with minority patients and may

appreciate the assistance of a trained peer navigator of

the same race/ethnicity and age in doing so.

Fatigue, breast and arm pain, and problems with lym-

phoedema are the most commonly reported late effects of

M. M. VON FRIEDERICHS-FITZWATER ET AL. 5

treatment by both younger and older women in previous

research [19]. Rather than the need for specific treatment

of their symptoms (e.g., fatigue, pain), many women

speak of their unmet need to determine whether their

symptoms were or were not a sign of recurrence. This

study was no exception. One woman said:

I am so tired now, never used to be. I get wore out do-

ing simple things. My grandkids, they don’t understand.

Why I can’t play with them like I used to. It makes me

feel like I am a patient, still going through treatment...

and it worries me. Does it mean there is cancer some-

where in my body? Is that why I am so tired?

Participants in this study reported issues with returning

to work and concerns about the overall quality of their

care. The women reported concerns about not receiving

the same quality of care and options that their non-AA

counterparts might receive. While they could not report

specific detailed examples, the concerns were significant

to them.

This study has limitations. First, the sample size was

small and participants were not selected randomly, thus,

may not accurately reflect the experiences of all AA

women diagnosed with breast cancer. Because this study

was largely a qualitative study, the generalizability of

results beyond study participants is not recommended nor

is it the intent of qualitative research.

Findings do, however, provide important implications

for future research and program development. First, more

research regarding the feasibility and efficacy of recruit-

ing and training AA breast cancer survivors as peer navi-

gators (cancer coaches) to work with newly diagnosed

AA women immediately following diagnosis. Second,

more attention should be paid to ensuring support ser-

vices are in place that are culturally acceptable and ap-

pealing to AA women diagnosed with breast cancer and,

then, ensuring that healthcare providers as well as AA

patients are informed about their availability. Collabora-

tions with existing community groups, faith-based or-

ganizations and AA churches continue to be an over-

looked resource for disseminating information to newly

diagnosed AA women. With regard to work-related is-

sues, research and programs need to be developed that

will make the transition back to work smoother for all

cancer patients at all employment levels.

5. Acknowledgements

We thank the AA women who participated in this study,

the Sutter Foundation and the Breast Cancer Network for

Strength for funding support and Carrie’s TOUCH, a

nonprofit community organization for AA women with

breast cancer, for instrument development and recruiting

assistance.

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