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
Marlene M. von Friederichs-Fitzwater1, Reverend Tammie Denyse2
1University of California Davis, School of Medicine, Sacramento, USA
2Carrie’s TOUCH, Sacramento, USA
Received February 28, 2012; revised March 27, 2012; accepted April 5, 2012
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
Keywords: Breast Cancer; African American Women; Treatment; Survivorship
Breast cancer is the most common cancer in women and
treatment includes various combinations of surgery, che-
motherapy, 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 con-
sequences . 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
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  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
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.
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
opyright © 2012 SciRes. ABCR
M. M. VON FRIEDERICHS-FITZWATER ET AL.
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
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
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-
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
5% 0% 0%5%
t han 60
Figure 1. Time lapse between diagnosis and treatment.
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
Breast Reconstruction at Time of Surgery
Breast Reconstruction After In itial Surgery
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
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-
Copyright © 2012 SciRes. ABCR
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
3.8. Specific Concerns as AA Women with Breast
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
Uncertainty about whether or not healthcare providers
understand the possible differences in response to
treatments of AA women diagnosed with breast can-
Potential for poor quality care or lack of adjuvant
therapies because of race or socioeconomic circum-
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.
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 . 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
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
Copyright © 2012 SciRes. ABCR
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 .
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 . 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 .
These same factors can result in insufficient informa-
tion seeking and acquisition, which can lead to ill-consi-
dered decisions about alternative treatment options .
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
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 . It is
well known that minority recruitment into clinical trials
faces a problem with rates of participation, ranging from
3% to 20% . The proportion of clinical trial partici-
pants who are black has also declined in recent years
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 . First, minorities are more likely to express
concerns about exploitation, dishonesty regarding risks
of experimental treatment, and motivations of researchers
. 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 .
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 . 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
Copyright © 2012 SciRes. ABCR
M. M. VON FRIEDERICHS-FITZWATER ET AL. 5
treatment by both younger and older women in previous
research . 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
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.
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
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