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The french writer Anne-Marie
de Grazia wrote Dr. Kubitschek this letter
concerning the prophylactic mastectomie (removal of the breast
by a surgeon)
In 1995, when I was 46, I took one of the most fateful decisions
of my life: I had my breasts surgically removed. Yet, I did
not have cancer. Between the age of 18 and 22, I had followed
through stage after horrendous stage of my mother’s battle
with breast cancer. I wanted to avoid, if at all possible, a
similar fate for my own body. Severe, irreparable maiming as
a means of prevention? Had I maybe gone mad? That was another
possibility over which I must agonize, week after week, before
I was able, with the help of my husband, to reach a decision.
In September 1994, the world media had announced the discovery
of the first breast cancer gene, BRCA-1, by a research team
at University of Utah, the winners in a breathtaking race, which
had pitted against each other several prestigious research laboratories
in the United States and abroad. At this occasion, statistics
were cited, which had long been known to experts but had rarely
appeared in the copious, popular literature on breast cancer:
some women, the number of whom was by no means insignificant,
had at least an 86% risk of getting breast cancer during their
life-time. Before reaching the age of 50, 60% of these women
would be diagnosed with the illness. By the time they reached
age 60, their risk had already risen to 80%.
These women had inherited a defective gene, which had now been
identified, and the presence of which could be traced up to
then in biological families, ever since the mechanisms of genetic
transmission had become known around the turn of the century,
through the cases of breast- and related cancers (ovarian-,
uterine-, and prostate cancers) among blood-relatives, usually
women, although the defective genes are transmitted equally
through the male and female lines, to 50% of the offsprings
of every carrier. Still, in books and articles destined for
concerned women, breast cancer experts would assure us, again
and again, that "nobody could have a risk for breast cancer
that was higher than 27%."
My mother died at 47 and her illness could be said with near
certainty to have been of the genetic kind, as a clear pattern
of genetic transmission was apparent in her own mother’s
family: all three of my grandmother’s sisters had died
between the age of 48 and 65 of breast- and, in one case, of
ovarian cancer. Two daughters of a brother of my grandmother
also had come down with breast cancer. (My grandmother herself,
who must have been a carrier of the defective gene, as she transmitted
it to my mother, died cancer-free at the age of 86 - no doubt
one of the 14% lucky ones, provided for by these gruesome statistics.)
This meant that I myself had a 50% chance of having inherited
my mother’s 86% risk. For me as an individual, this did
not mean that I had a 43% risk, but that I had either an 86%
risk or, in case I was lucky, "only" the ca. 13% risk
shared by all women who do not carry the defective gene, a risk
which is already frightening. There existed one means, rarely
employed, that was likely to diminish considerably the chances
of getting breast cancer for high-risk women: prophylactic mastectomy,
and this I decided to have done.
I am French, a writer, born in Alsace, married to an American
professor and living in the USA for most of two decades. A woman
breast surgeon at the Robert Wood Johnson Hospital in New Jersey
agreed with my assessment of my risk and declared herself ready
to undertake the operation. A date for the surgical intervention
was set. Yet, our American health insurance refused to cover
the costs. Despite the unambiguous position of the surgeon,
our health insurance company maintained that there existed no
proof that mastectomy could effectively prevent breast cancer.
We were told then, in an ironic non sequitur, the insurance
would carry the cost of the preventive operation under certain
conditions: namely if, besides my mother, I could also
provide a sister who was a victim of breast cancer. With that
I could happily not oblige! I had neither sister nor brother,
which could have had no bearing on my risk anyway! We took the
decision to have the operation at our own cost in Germany (where
it was considerably cheaper). It was performed in May 1995 by
Dr Werner Audretsch at the Gerresheim Krankenhaus in
Düsseldorf.
A second breast cancer gene, BRCA-2, has been discovered, and
tests allowing to identify these two most common, breast cancer
causing genetic defects became widely available in 1996. It
did not happen without a fight! These tests were at first withheld
by pharmaceutical companies under the pretext that it was better
for individual women not to know if they had such a drastically
elevated risk for breast cancer. This position of the pharmaceutical
companies could not be sustained for long in a free market:
a small laboratory in Fairfax, Virginia, Genetics and I.V.F.
Institute, soon broke ranks and made the test available on the
Internet at a price of $295 to anybody who was interested and
with that, the cat was out of the bag!
The new mantra became: one cannot possibly know if prophylactic
mastectomy is effective in the long term prevention of breast
cancer, because the operation has been performed so rarely that
there existed no valid, reliable statistics of success. Moreover,
women would not want to give up their breasts only in order
to prevent an illness which they might never have gotten in
the first place.
In January 1999, the controversy about the effectiveness of
prophylactic mastectomy was decided once and for all through
the publication, in the New England Journal of Medicine,
of a study of the prestigious Mayo Clinic in Rochester, Minnesota:
it turned out that, between 1960 and 1993, the Mayo Clinic had
undertaken prophylactic mastectomies on 639 healthy women who
had had a risk of contracting breast cancer which had been rated
at medium to high, and it possessed impressive follow-up data
as to the effectiveness of the prophylaxis. This data was carefully
studied and gauged, and
compared with the breast cancer data for the sisters, who had
not had prophylactic mastectomy, of the women who had undergone
the operation at the Mayo Clinic. (Of course, these surgical
interventions had all been done without the benefit of tests
revealing the presence or absence of genetic
defects). The results were unambiguous: prophylactic mastectomy
had prevented breast cancer in over 90% of the women who had
had the procedure, and could therefore be considered to be highly
effective in the prevention of breast cancer in women who had
an elevated risk. Of the 214 women in the highest risk group
who had the operation, only 3 got breast cancer (1,4%); of the
403 non-operated sisters of these women, 156 got breast cancer
(38,7%). All in all, the prevention was ineffective in 7 cases,
medium and high risk included. Yet, it must be added that, among
these 7 cases of failed prevention, only two women died. The
5 others were still alive and were all considered to be cancer-free
after an average of 10 years following their diagnosis. Their
subsequent cancer had been found to be localized to the chest
wall and could be treated locally. Therefore, even in cases
of failed prophylaxis, the mortality from breast cancer appeared
to be significantly reduced.
In fact, the results of the Mayo Clinic are rather conservative:
around 90% of the surgical interventions considered in the study
had preserved the nipple, in many cases replacing the breast
tissue with prosthetic devices, in a procedure known as "subcutaneous
mastectomy," and were therefore more akin to cosmetic surgery,
These particular interventions are no longer practiced, mainly
because a considerable number of the failed preventions were
due to the appearance of a cancer involving the nipple area.
In the 64 cases of prophylactic mastectomy in which the breast
tissue including the nipple had been removed, there was not
one single case of cancer. These numbers are statistically too
small to allow one to conclude a rate of success of 100%.
Yet, one is allowed to hope that with the generalization of
this more radical procedure, future results could reach way
above 90% of successful prophylaxis, maybe up to 95% or more
(experiments with mice have yielded results over 99%).
Yet, whenever prophylactic mastectomy is mentioned as a possibility
of prevention of breast cancer, women are automatically told
that this operation "doesn’t afford a 100% protection
against breast cancer." The 90% success rate is usually
not even mentioned. Is there even one medical preventive intervention
which pretends to a success rate of 100%? Despite the clear
results of the Mayo Clinic study, preventive mastectomy goes
almost entirely unmentioned under the rubric "breast cancer
prevention" on breast cancer websites in the United States
and elsewhere.
My sister in law, who is a psychotherapist in New York, and,
needless to say, a well informed woman, regrets not having been
advised to have preventive mastectomy despite the fact that
one of her sisters and a maternal aunt had died of breast cancer:
because of this worrisome family history, she had subjected
herself to especially close scrutiny. Yet, when she was 61,
a tiny tumor was detected through mammography, only about 2
mm, which was found to have already attacked two lymph-nodes.
Early detection is not prevention, and genetic breast cancer
is often particularly aggressive! This event was experienced
as a catastrophe by all of us and certainly helped trigger my
own decision to undertake prophylactic mastectomy.
A relative of another sister-in-law had a prophylatic mastectomy
eight years ago, after her mother and sister had both died of
breast cancer at age 36 (!). In 1999, this woman was tested
for the breast cancer genes and discovered that she didn’t
have the genetic defects after all. She rejoiced at the news,
which meant that none of her children or grandchildren were
at risk of inheriting, or of having inherited, the genetic defect
which had killed her mother and sister. She vouches that she
feels no regret for the loss of her breasts, despite the fact
that, according to the results of the test, she would not have
needed the operation. Her risk of breast cancer is now, like
mine, significantly below the 13% risk of a normal woman, who
has not inherited either of the genetic defects.
I am still a rather good-looking, very vain woman, by no means
on the shadow side of Eros, and I love and appreciate the beauty
and wholeness of man and woman, but I confess that feel very
well with my reduced risk! Dr Audretsch is an artist among breast
surgeons and instead of the usual, straight, uninspired cuts,
he gave me scars with an almost graceful upward curve. Yet,
make no mistake, mastectomy is a severe maiming, and it took
me almost a year before I was able to look at my scars in the
mirror without averting my eyes, however masterly they had been
carved. I am maimed, but dying is worse!
I have decided not to have reconstruction and I have nevertheless,
with the help of yoga and a reasonable diet, a now 51 year old
body of which I am by no means ashamed, and which I have been
looking at for years now every day with a feeling of reconciliation
and even with pleasure. And I am quite sure that, despite the
absence of my breasts, I have lost out on nothing in the way
of love, of friendship and consideration of others, and this
should certainly come as no surprise. It is tragic that healthy
women will go on becoming victims of a deadly illness only because
they are deemed not to be responsible enough, and mature enough
in their judgement, to be let in on information about this very
effective, if radical, means of preventing breast cancer.
Anne-Marie de Grazia , Winter 1999/2000
Dr.
med. Jochen Kubitschek , Wissenschaftsjournalist
LaHave
Media Services Limited
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