Hindawi Publishing Corporation
International Journal of Breast Cancer
Volume 2012, Article ID 908547, 5 pages
Experienceof Initial Symptomsof Breast Cancerand Triggersfor
Timothy D.Dye,1,2Solomon Bogale,3ClaireHobden,1YaredTilahun,4
Teshome Deressa,5and AnneReeler1
1Division of Global Health Systems and Research, Axios International 75001, Paris, France
2Department of Public Health, Food Studies and Nutrition, Syracuse University, Syracuse, NY 13210-2938, USA
3Radiology Department, Addis Ababa University Faculty of Medicine, Tikur Anbessa Hospital, Addis Ababa, Ethiopia
4Ethiopia Breast Cancer Project, Axios Foundation, Addis Ababa, Ethiopia
5Ethiopian Cancer Association, Addis Ababa, Ethiopia
Correspondence should be addressed to Timothy D. Dye, email@example.com
Received 26 August 2011; Accepted 24 November 2011
Academic Editor: Maria Paula Curado
Copyright © 2012 Timothy D. Dye et al. This is an open access article distributed under the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly
Objective. This study assessed the initial experiences, symptoms, and actions of patients in Ethiopia ultimately determined to have
breast cancer. Methods. 69 participants in a comprehensive breast cancer treatment program at the main national cancer hospital
in Ethiopia were interviewed using mixed qualitative and quantitative approaches. Participants’ narratives of their initial cancer
experience were coded and analyzed for themes around their symptoms, time to seeking advice, triggers for action, and contextual
factors. The assessment was approved by the Addis Ababa University Faculty of Medicine Institutional Review Board. Results.
Nearly all women first noticed lumps, though few sought medical advice within the first year (average time to action: 1.5 years).
Eventually, changes in their symptoms motivated most participants to seek advice. Most participants did not think the initial lump
would be cancer, nor was a lump of any particular concern until symptoms changed. Conclusion. Given the frequency with which
lumps are the first symptom noticed, raising awareness among participants that lumps should trigger medical consultation could
contribute significantly to more rapid medical advice-seeking among women in Ethiopia. Primary care sites should be trained and
equipped to offer evaluation of lumps so that women can be referred appropriately for assessment if needed.
Breast cancer is an increasingly visible disease, and a rapidly
growing cause of mortality, in developing countries . In
Africa, where breast cancer may often present at an earlier
age and can progress more aggressively [2, 3], little is known
about pathways and triggers for women to take action
(e.g., seek medical advice) based on their recognition of
In Ethiopia, breast cancer is typically a fatal disease with
high mortality [4, 5], unlike the experience of the Western
world where breast cancer is frequently treatable and with
lower mortality . Ethiopia has an increasingly compre-
hensive set of breast cancer prevention, diagnosis, and treat-
ment interventions available for women  though stigma
and treatability, and system overload continue to account
for delays in reaching care . An important component
of the knowledge-action chain is understanding Ethiopian
women’s recognition of symptoms of breast cancer and their
motivations for taking action. Ethiopian women typically
present for care at a late stage in the disease , where
treatment is most ineffective, and while system-related
barriers to care account for a portion of that delay in access,
women’s attitudes and lack of awareness of breast cancer
symptoms also account for a stalled initiation of action .
As the health system and treatments available for breast
cancer in Ethiopia continually expand and are accessible to
the population, more women can potentially access care at
2 International Journal of Breast Cancer
women recognize and take action when they experience a
symptom that could potentially signal breast cancer.
This evaluation includes a qualitative and quantitative
assessment of the experience of participants with breast
cancer who, ultimately, successfully accessed the services of
the Ethiopia Breast Cancer Project (EBCP) and reports on
their recognition of symptoms, their attitudes upon noticing
those symptoms, and their motivations for and experiences
with taking action.
This projectfocusesupon womenwhoaccessedcarethrough
the Ethiopia Breast Cancer Project (EBCP). EBCP aims to
strengthen human resource capacity, technical competency,
and advocacy and improve access to treatment for breast
cancer in Ethiopia, working closely with all related depart-
ments and services of Tikur Anbessa Hospital (TAH), the
Ministry of Health, and the Ethiopian Cancer Association
. Patients, their families, and health practitioners were
interviewed as part of the larger impact assessment using
semistructured interview protocols developed following
open-ended ethnographic interviews and observations.
Interviewers were fluent in written and spoken Amharic
and English and sequentially identified EBCP program
participants to interview over a one-month span. Informed,
ers participated in a one-day training session that included:
study overview, ethical conduct of research, role play, and
pilot test interviews and review. The teams debriefed each
day with investigators for major points and discussion items
for the group. Qualitative data was analyzed through
theme analysis predominantly using ATLAS.ti, Version 5.5
(ATLAS.ti Scientific Software Development GmbH, Berlin,
Germany), and quantitative data was analyzed using JMP,
Version 8 (SAS Institute, Inc., Cary, North Carolina). Where
necessary, translated English grammar in direct quotes is
corrected from transcriptions to ease readability and where
necessary, placed in the first person context, though content
2.1. Sample Characteristics. In total, 55 patients directly
participated in the study, in addition to 14 proxies (children,
spouses, others) representing other patients, for a total of
69 patients represented. Most participants were married and
female, and more than half were age 50 years or younger.
About two-thirds of participants lived in Addis Ababa,
and almost three-quarters of the population was Ethiopian
Orthodox. Two-thirds of the participants were diagnosed
with breast cancer in the immediate two years prior to the
assessment. The average interview lasted 41 minutes. When
compared to the clinic treatment population for the first
half of 2008 from EBCP programmatic data (unpublished),
the study sample did not differ significantly from the clinic
treatment population on any of the following parameters:
age, gender, or residence of patient.
2.2. Data Collection. Participants were asked in an open-
ended way to tell their story of how they came to learn they
Table 1: First and subsequent signs of breast cancer noted among
breast cancer patients, ethiopia breast cancer program, prior to
taking action (n = 69).
First sign noted
Subsequent sign noted
Noted any lump
had breast cancer. If necessary, participants were prompted
for relative dates when they first noticed symptoms, when
they first accessed care, and their navigation of the care
system (see Dye et al. ). These narratives of participants’
experiences were subsequently coded to identify symptoms,
triggers for action, timing of action, and contextual factors
occurring in their stories.
2.3. Ethical Review. This project was reviewed and approved
by the Addis Ababa University Faculty of Medicine IRB.
Additionally, project team members were trained in research
ethics using materials from the CitiProgram (https://www
.citiprogram.org/). Participant names were not collected as
part of this project, and indirect identifying information was
grouped and presented in general categories or in aggregate.
As shown in Table 1, most participants in the assessment
(82.6 percent) indicated that a lump was the first symptom
(of what was to become breast cancer) that they experienced.
The only other significantly mentioned symptom noted in
participants’ narratives of their cancer experience was a
sensation of itching or burning, either on the breast or at
a lymph node site. Most participants indicated that they
also, ultimately, experienced subsequent symptoms, most
commonly described as pain (often near or around the site
of the original lump), which was experienced by 36 percent
additional lumps (14.5 percent) subsequent to their first
symptom. Nearly all participants (89.9 percent) indicated
that they noticed a lump at some point prior to seeking
advice for their symptoms.
Most participants did not expect that the lump they no-
ticed was of any concern, at least initially:
“About 2 years back, I found a small hard lump
no pain, I was not that much concerned about it.
But it kept getting bigger and bigger...(Case 47)”
“I came with my sister in law. She had a lump
starting a year back. At first it was painless.
International Journal of Breast Cancer3
Table 2: Ignored first signs of breast cancer, patients in the Ethiopia
breast cancer program (n = 69).
Mean time ignored
Ignored symptoms for how long
Did not ignore
Over three years
Time not specified/ambiguous
1.6yrs 95% CI Mean: 1.0–2.2
Around 6 months later the lump become harder
and painful. (Case 56)”
“Three years back, I started feeling sharp, tingling
kind of pain in my right breast. I went to a nearby
clinic and was diagnosed to have a cold, and I
started oral medication. Then after some time, I
developed a pea-sized hard nodule over the same
breast, which was getting bigger at time passed on
by. (Case 23)”
on her breast about two years back. We were not
worried that much because it was painless. But,
took her to [a clinic]. (Case 28)”
Similarly, as shown in Table 2, most participants (69.6
percent) ignored their symptoms, at least initially, for an
average of more than one and a half years until they took
some form of action. While many participants were ambigu-
ous or uncertain for how long they ignored their symptoms,
more than one-third indicated that they waited at least a
year or more, some waiting as long as five or six years.
This period represents the time participants waited to take
action regarding their symptoms; it does not reflect typically
additional delays throughout the care system once the
participant made a decision to access it.
“About two years ago, I noticed a small lump on
my right breast. I just ignored it, considering it a
simple swelling. After a year, I went to [Eastern
Ethiopia] where my biggest child lives. I told him
that I had a lump on my breast. I think he heard
about breast cancer. He immediately took me to
nearby clinic... (Case 37)”
“I saw a lump on my left breast. It was painless at
that time and I thought it will resolve by its own.
Finally the lump became harder... it be come [sic]
very painful within two years. I went to a health
center the physician examined me and told me
that it is breast cancer, and I will not live more
than 2 months... (Case 41)”
Table 3: Triggers for action among breast cancer patients, Ethiopia
breast cancer program (n = 69).
Change in 1st symptom
Secondary to other care
Finally, participants indicated that the most common
reason for initiating some form of action to address their
symptoms (Table 3)—including seeking a traditional or con-
temporary healer—was that they experienced symptoms
in addition to their primary one (42.0 percent). Further,
21.7 percent of participants indicated that they took action
becauseof a change in their original symptom. Taken togeth-
er, nearly three-fourths of all participants in the assessment
were motivated to take action because of changes in or
additions to their symptoms. An additional 5.8 percent
indicated that family pressure motivated them to take action,
and also 5.8 percent indicated that they did not deliberately
take action but rather their breast cancer was detected
secondarily at another health care visit.
“Before 2 years, I started feeling sharp pain over
my left breast with a little swelling. But I did not
under the consideration that it will go away by
itself. But after about 4 months, I had to go to a
nearby health center because the mass was getting
bigger and the pain was getting worse. (Case 49)”
“Three years back, I started nursing my last child.
After 1 month, I started to experience severe pain
on my left breast. I went to a physician [who]
told me that it is cold and gave me an antibiotic.
and got similar medication. After a month of
this medication I noticed a small lump on the
same breast. I showed it to my husband, and my
sisters they told me that it simple lump and not
to worry about it. After 2 and 1/2 years, I met
my old friend who works in Addis Ababa as a
nurse and I showed her too. She told me to go
to the health center and get treated. After doing
some investigation it is found to be cancer. I was
shocked. (Case 27)”
“Two years back, I noticed a small nodule over
my left breast but I was not that much concerned
about it. Then when I got pregnant in that year,
the mass started becoming very painful which
forced to seek medical attention. Then I was told
that it could be cancer and that I would get the
treatment after giving birth. (Case 65)”
Clearly, in Ethiopia lumps are the first noticeable signs of
breast cancer typically recognized by participants. Almost
4 International Journal of Breast Cancer
all of the participants in this study noticed a lump at some
point and most participants also dismissed the lump, at first,
as nothing to be concerned with. In fact, some participants
ignored their lump for several years. In time, participants
noticed more lumps or changes in symptoms (pain, itching),
and that triggered them to seek advice, from a traditional
healer, clinic, or other health care source. A few women were
motivated to seek advice from their friends or family, and for
some their cancer was discovered in the course of obtaining
medical care for something else.
Several other studies have similarly found that lumps
are the dominant symptom noticed by women with breast
cancer and that most women find lumps as their primary
symptom [12–15]. Further, breast pain was identified as a
trigger for seeking care in Ghana , and Montazeri et
al.  showed that painless mass was the most commonly
it as potentially cancer.
Studies also indicate that women in low-resource areas
delay seeking care longer than women in other parts of
the world, with delays of a year or more from detection
of symptom to seeking advice [12, 14, 15, 17]. This delay
could reflect the relatively recent (and yet incomplete, in
many areas) inclusion of cancer in public health programs
and awareness campaigns . African women already face
considerable delays in accessing care through overburdened
health care systems and with limited resources; adding
more than a year of delay from noticing a symptom to
action increases the chances that their disease will progress
significantly before care initiates.
Notably, this study included participants who, at least
eventually, obtained care at the national cancer hospital in
from noticing to acting on symptoms was considerable. This
study is limited in that delay, symptom recognition, and the
dynamics of triggers for action are unknown among women
not entering the care system in Ethiopia.
Given the importance of lumps in initiating the cascade
of events that could lead to breast cancer diagnosis, increas-
ing women’s knowledge of lumps as a trigger for advice
may help reduce the lag time between initial notice of the
symptom and eventual action in Ethiopia. Focused public
campaigns and other strategies to increase awareness may be
effective in promoting action when confronted with a lump
(e.g., see Remennick ). Strengthening the capacity of the
health system to respond to women’s queries about lumps
is also necessary , especially moving local primary care
sites—the most common initial point of entry for breast
cancer patients in Ethiopia —to the basic level of capac-
ity recommended by the Breast Health Global Initiative.
Though there is debate about the effectiveness of Breast
Self-Examination (BSE) in lowering breast cancer mortality
(see Reeler et al. ), perhaps promoting breast lump
awareness to encourage women to seek advice on lumps
promptly, in a resource-poor country such as Ethiopia, may
trigger action and entry into care sooner, while more com-
prehensive population-based and -accessible screening and
diagnostic programs are developed and implemented over
T. D. Dye supervised development and implementation of
participated in study design and implementation, and proto-
col development; C. Hobden authored sections of the paper
and led background reviews; Y. Tilahun contributed to the
study design, supervised data collection, and contributed to
authoring the paper; T. Deressa contributed to study design,
supervised data collection, and contributed to authoring the
Conflict of Interests
The authors declare that there is no conflict of interests.
This study protocol was reviewed and approved by the Addis
Ababa University Faculty of Medicine IRB.
The Ethiopia Breast Cancer Project is funded by an unre-
stricted grant from AstraZeneca to the Axios Foundation.
Project, but did not participate in the design and implemen-
tation of this evaluation and did not participate in review of
or comment upon this paper.
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