Brianna DeFoe

Writing in the Sciences, Department of English

North Dakota State University, Fargo, ND 58108

Effects of Prophylactic Care

on High Risk Ovarian Cancer
Individuals
July 29, 2016
ABSTRACT

One of the deadliest (gynecological) cancers to date is high-grade serous ovarian cancer. Most
women find that they are diagnosed in later stages, III or IV, where treatment options become
much more limited and the cancerous cells become much harder to treat. In these more
advanced stages, many women are faced with chances of cure being less than 40% for those
in stages IIIa, IIIb, and IIIc, and less than 17% for those in the final IV stage. The life expectancy
for most of the women that have been diagnosed in the higher stages ranges from 9%-34%,
based upon the availability of treatment as well as the form of carcinoma present within the
body.1
With the mortality rate so high of women who contract ovarian cancer due to genetic
malformation, the available preventative care must be honed and developed such as to
prevent the disease from occurring within the human body and also to provide the best
lifestyle possible (in both psychological and physiological aspects) for high-risk patients. There
is little information available about the long term effects of different types of prophylactic care.
This research is paramount in the development of such information, as it will open doors to the
betterment of patient care options.

OVERVIEW

Prophylaxis, also known as preventative care, has been the proposed method for reducing the
risk of developing genetically inherited cancers over the last few decades.9 One of the most
common first stages of prophylactic care for women is genetic testing. Genetic mutations have
become one of the keys in the forefront for unlocking new information about this form of
gynecological cancers. Current research is exploring the causes of type II tumors (highly
aggressive high-grade serous ovarian carcinomas) stemming from the genetic mutation of
BRCA1 and 2 genes, as well as TP53.1,2,5

TP53 is a gene that functions as a tumor suppressor and regulator in the cell cycle. This gene
actively works to prevent cancerous growths within the body.5
1

BRCA1 and 2 are DNA-damage repair genes.1,2

BRCA2 works to regulate RAD51, a gene that is
responsible for homologous recombination; while BRCA1 works to repair DNA through
signalling damage to DNA as well as working to repair through homologous recombination,
nucleotide excision repair, and also is thought to play a role in nonhomologous end-joining.2
Blood tests are conducted on women who are termed high-risk to analyze certain genes
(BRCA1/2 and TP53) to determine if the malignant malformation has been passed from parent
to child, grandparent to grandchild, etc.2,6,7 The level of risk is determined based on the
relationship of the patient in question and the nearest relative who is a known carrier of the
malignant mutation. If the closest relative of the patient is a parent who is positive carrier of the
malignant mutation, this puts the patient in question at the level of high-risk.
There are many different prophylactic options available to women today including:
hysterectomy (removal of the uterus), bilateral salpingo-oophorectomy (removal of both sets of
fallopian tubes and ovaries), chemoprevention, consistent use of oral contraceptives, and
many more options that are in clinical trial stages or in development.10
Much is known about the
physical effects of each of these prophylactic care options, but there is little to no information
that has been research about the effects of persisting physical and psychological effects on the
patient. That is to say, how do the use (or lack thereof) of these treatments affect the lifestyle of
the patient in the long term? The information gleaned from this research could add much to the
knowledge of the cancer and its physiological and psychological effects on those who
develop it.
Mayo Clinic Proceedings published a paper in December of 2010 discussing the advantages
and disadvantages of certain preventative therapies. One of the leading discussions of the
paper was the effects of the b
ilateral salpingo-oophorectomy and/or a hysterectomy. The
paper went on to discuss that some of the leading assets of this surgery for young women,
which include: reducing the risk of ovarian cancer by up to 80-90%, enduring anxiety related to
cancer is reduced, and may potentially detect early stages of carcinoma should it already be
developing.9 However, for every advantage, there are also many disadvantages associated
with this surgery. These drawbacks include: a risk of about 10-20% that cancer may still
develop, any associated risk associated with the surgical proceedings, induction of menopause
and impact on ability to bear children, reduced production of estrogen and progesterone
(which could cause residual mental effects including but not limited to depression), lack of
sexuality, and cost.9,10

Chemoprevention is also a popular prophylactic measure today. It includes medications such

as Tamoxifen and Raloxifene. These medications are selective estrogen receptor modulators
that are often prescribed to high-risk patients who do not wish to undergo surgery. Another
form of chemoprevention includes oral contraceptives. Research has shown that the use of oral
contraceptives for three years or longer has a positive correlation with a reduced risk of
development of ovarian cancer of 40% to 50%.9 Some of the downsides with chemoprevention
are related to the fact that little is known about the long-term effects of continual treatment,
and there is a need to semi-annually or annually screen via blood tests and/or ultrasound for

potential cancerous growths, and also continue to experience some cancer-related anxiety to a
larger degree.9
I would like to propose the following hypothesis in relation to the proposed research: Women
who have engaged in genetic testing and not assiduously taken with a form of prophylactic
care experience more negative stressors and anxiety related to their health than women who
have opted to engage in a form of prophylactic care.

GOALS
1.

To better understand the lifestyle changes of high-risk individuals due to prophylactic

treatment or lack thereof
2. Develop a working knowledge of which preventative care options may have the most
positive correlation with a positive lifestyle

PROJECT OUTLINE
SUMMATION OF PROJECT AND METHODOLOGY
I propose that the focus group of this study will be, with the permission and cooperation of the
medical center, the patients of the Gynecologic Oncology Center at The Mayo Clinic. As there
are many types of gynecologic cancers prevalent today, and with such a large group at hand,
an initial listserv survey will be sent out on August 1, 2016. This survey will be completely
voluntary and the information provided in the surveys will be completely confidential. The
survey composition will include closed-ended questions along with a brief section at the
beginning to provide contact information if the volunteer is willing to go on to the personal
interview stage, should they be a potential candidate. The candidates that will be chosen will
be females, between the ages of 18-55, who are considered to be high-risk and have had
genetic testing for BRCA1/2 and/or TP53 genetic mutations, and also have been informed by a
healthcare provider of future health-related options and risks dependent on the result of the
genetic test. A secondary survey will be released on August 8, 2016 to patients who had not
completed the initial survey in order to provide a final option should they wish to be part of the
project. The initial and secondary surveys will be closed and collected on August 15, 2016.
That same week the data compiled from the surveys will be analyzed and the candidates
narrowed down such that any potential volunteer fits within the parameters needed to
complete the research. In order to develop sound research 100-150 women will be selected to
participate in the interview process. Once the eligible volunteers have been found and
selected, the large body will be broken down into randomized groups of 25-30 individuals via
computer software. This will allow for five to six individual interviews to be conducted every
five business days. The candidates will be notified of their chance to participate in the personal
interviews on August 19, 2016.
The personal interviews will be conducted in a one on one capacity between the volunteer and
the interviewer. The questions asked during the personal interviews will be open-ended. The
questions asked will be regarding the results of their genetic testing, what types of care was
suggested to them based on said results, what types of prophylactic care they may be
3

engaging in or have engaged in to prevent cancer occurrence, how it has changed their
attitudes towards medical care, and the effects the treatment (or lack thereof) has had on their
current lifestyle.
After the final individual interviews have been completed, all of the nameless, confidential data
will be compiled and analyzed. The information collected will be sorted into graphs and charts
describing the results found in the raw data. A final report will then be compiled detailing all
steps taken in the research and providing all the results of the raw data that was analyzed. A
final end date for the project and submission of the final report will occur on October 17, 2016,
78 days after the proposed inception of the project.

ETHICAL IMPLICATIONS
As this is such a personal and sensitive topic, any potential ethical and/or social complications
that may arise must be taken into account. One of the main goals of this project is explore
potential lifestyle changes due to prophylactic care in high-risk individuals without the
accession of any extra distress in the patient. Open communication with the patients is of the
utmost importance while conducting this research.
Prior to the start of the project, consent will be obtained from all individuals who wish to
participate. Any and all information collected from the surveys and personal interviews will be
completely anonymous, and voluntary. The information collected throughout the entirety of the
project will also remain completely confidential until the publication of the research. Patient
anonymity and confidentiality of results reduces the risk of any personal or social bias and also
reduces addition of psychological stress and potential fear related to stigmatization due to
genetic predispositions.
Another ethical consideration that must be deliberated is the social and cultural backgrounds
of those participating in the study. As the party being considered comes from an array of social
and cultural atmospheres, it is imperative that the researchers conducting personal interviews
are sensitive to not only the health issue at large but also the values and beliefs of the patient
being interviewed.

SELECTION OF METHODOLOGY
In the initial stages of the project, listserv surveys are used. These particular format of surveys
allow for the distribution of the material to large amounts of people, through the use of e-mail.
Listserv surveys allow for anonymity and privacy as the user may choose to/or not to complete
the survey and disclose their private contact information. The surveys provide instant
information and allows for the short period of a week to sort through the information obtained
to find the best candidates to participate in the project.
Personal interviews allow for the continuation of private and confidential exchange to the
open-ended questions asked of the volunteer. The knowledge gleaned from the interviews is
collected and sorted throughout the five week duration of the personal interview process. This
allows for a quicker assessment of the verbal transcripts from the interviews during the
following two weeks post-interviews.

PROJECT SCHEDULE
Assignment

Date of Initiation

Distribution of initial listserv survey

August 1, 2016

Distribution of second listserv

survey

August 8, 2016

Collection of completed surveys

Evaluation of collected survey data
and selection of candidates

Date of Completion

August 15, 2016

August 15, 2016

Notification of candidates

August 19, 2016

August 19, 2016

Personal interviews with group one

August 22, 2016

August 26, 2016

Personal interviews with group two

August 29, 2016

September 2, 2016

Personal interviews with group three

September 5, 2016

September 9, 2016

Personal interviews with group four

September 12, 2016

September 16, 2016

Personal interviews with group five

September 19, 2016

September 23, 2016

Analysis of data collected in

personal interviews

September 26, 2016

October 7, 2016

Compilation of final report

October 10, 2016

October 14, 2016

Hand in final report

October 17, 2016

WORKING BIBLIOGRAPHY
1.

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(accessed July 1, 2016).
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Cancer Center, 2013.
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