Seeking genetic counseling
Most of the participants were self-admitted to genetic counseling.
Others discussed genetic cancer risk in their families with
their doctors, who then referred them to genetic counseling. One of
the most salient aspects of the women’s dealing with genetic
cancer risk is related to the experience of losing a mother. To understand
these women’s motivations for seeking genetic counseling,
one must realize the importance of the women’s family
history and of the loss of their mothers.
One woman’s quote shows that her reasons for seeking genetic
counseling was closely related to the loss of her mother, and she
wished to prevent that the same would happen again:
Me and my brother, we are concerned about the children. And there
was . there was so much grief . when I lost my mother . and
then it was natural to think that.we will not experience it again.
Another woman gave a similar explanation:
But I thought on the background of my mother and all that we had
been through . we were three sisters and brothers, and I myself
have one boy who is twenty, and a girl who is 16.and if I could do
anything to prevent [ovarian cancer] .
One woman was asked if she thought new genetic counseling
would be beneficial, and she responded as follows:
Yes, maybe so, maybe to have a thread of things.We tend to.in
other words . life goes so fast and things happen . right? And
maybe you forget something, but perhaps it is not forgotten . I
know it when I sit here and talk to you.
Though this quote is an answer to a question on the need for
new genetic counseling, we cannot fail to notice a common need in
the women’s interviews of a “thread of things.” Throughout the
interviews we see how the women, by talking of their situation and
history, touch on things and feelings that they seldom talk about.
Dealing with genetic cancer risk in the family
Living in families with a genetic cancer risk, the interviewed
women reflected on the different risks they were confronted with
after the prophylactic removal of their ovaries. Reading through the
interviews, we saw that the women found a newfound sense of
safety after operation.
In regard to the prophylactic removal of her ovaries, one woman
stated the following:
I think it was . yeah, for the better, because then a sense of safety
was returned to me. Yes, because otherwise you can spend your
time worrying on things that might not happen . but now you
take away something that you know is difficult to detect .
something you certainly do not control.
However, this newfound sense of safety is not a certainty, and
some of the women expressed a kind of ambivalence toward the
thought of future risk. One woman had a gene test, and her genetic
counselor informed her that none of the six most frequent mutations
were found in the BRCA1 and BRCA2 genes. Still, the genetic
counselor stated that there might be a risk that she could be a
carrier of a gene defect in other areas of her BRCA1/BRCA2, or in a
gene related to breast-ovarian cancer syndrome that scientists had
not yet discovered. In regard to this information, the woman stated
the following:
I amthinking probably more about risk than others, I believe. I have
more risk factors and I focus more on all the risks.diet, to keep in
shape, right? I think I have a lot of that in mind.and not smoking.
I think I got very conscious about it when my mother died, because
she smoked for 25 years . but now I have not become ill. I have
never smoked. I am very like that . member of the Cancer Society
.trying to keep, that is, to keep the cancer at a distance.if I can
keep it at a distance. I do not feel that there is a control because I
know I have no control over it. So I have that thought also, right?
The statement above speaks to the woman’s ambivalent attitude
toward her risk. On the one hand, she tries to keep the cancer at a
distance in her mind, yet on the other hand, she does not feel that
she has control over the risk of cancer.
Another woman spoke on her cancer risk:
Yes, as I said, I have never thought that I would die of ovarian
cancer. That, I have really not thought. So in a sense, it has not been
a problem to me.
The quote above may also reflect a degree of ambivalence. On
the one hand, the woman had her ovaries removed prophylactically
due to a cancer risk in the family, yet on the other hand, she did not
think that she would die of ovarian cancer.
The importance of a close relationship
Thirteen out of 14 women in the study were in a paired relationship.
For these women the support they got from their husbands
was of significant importance.
As the following quote illustrates, how a partner responded to a
participant’s new situation after her ovaries were removed was of
great importance to her:
Yes, I had a partner and it went well then. I think that was the
reason why I felt good. Because together we had a good life.
One woman who had her husband with her at the genetic
counseling setting stated the following:
Yes, he was with me when I got to know the result of the blood test.
So, if you have got friends who you can talk with [that helps a lot]
. I have a man who is very nice, he is very understanding.
The woman who was not in a paired relationship lacked the
support that the others had, and displayed in the interview a
vulnerability related to the loss of a mother that was particularly
apparent. She was a child when she lost her mother, and she spoke
about loneliness as one of the worst challenges in her life:
Because it is a part of what has been bad forme.to be much alone
.