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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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