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British Medical Bulletin Advance Access published online on April 4, 2007
British Medical Bulletin, doi:10.1093/bmb/ldm003
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© The Author 2007. Published by Oxford University Press. All rights reserved. For permissions, please e-mail: journals.permissions@oxfordjournals.org

Prophylactic mastectomy: ethical issues

Francois Eisinger*,{dagger},{ddagger}

{dagger} Department of Oncogenetics Prevention and Screening, Paoli-Calmettes Institute, France
{ddagger} INSERM UMR 599, ERMES, Marseille, France

* Correspondence to: Francois Eisinger, 232 Bd St Marguerite, 13009 Marseille, France. E-mail: eisinger{at}marseille.inserm.fr


   Abstract
Top
 Abstract
Introduction
 Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
 Acknowledgement
 References
 
Introduction: Why in particular should prophylactic mastectomy be seen more as an ethical concern than as a strictly medical question? In this article, four main explanations will be discussed.

Main points: First, a risky condition is not a disease and prevention does not improve well-being. The benefits are only statistical and make sense at the population level. Secondly, the cause of the risk is a genetic factor and some might argue about genetic ‘exceptionalism’. Thirdly, there is no organ as, connected to femininity, sensuality, sexuality, adulthood and motherhood as the breast. Lastly, making tough and complex choices requires assistance from ethics.

Areas of agreement: Among ethical principles, western countries often rely on autonomy. The physician has to deliver all the relevant information; based on this ‘knowledge’ and using their own values, patients will take a decision.

Area of controversy: In 1998 in France, national recommendations set a list of criteria to fulfil, reducing autonomy.

Emerging areas for developing research: It might be expected that this tough issue will be solved, thanks to the improvement of prevention and therapeutic efficacy.

Keywords: genes BRCA1 • genes BRCA2 • risk management • personal autonomy


   Introduction
Top
 Abstract
 Introduction
Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
 Acknowledgement
 References
 
The issue of prophylactic mastectomy for women with a germline mutation of BRCA genes, which has been called ‘the price of fear’,1 has brought this intervention back to the fore.2

According to Jacobson,3 the first prophylactic mastectomy reported was carried out in 1917 for a rather paradoxical reason: ‘... the fear of having the breast mutilated keeps patients away and allows a tumour to run a progressive course’. The decision to treat women before the disease actually occurred was at that time subsequently thought to be justified because some women with breast cancer (BC) are likely to refuse either the diagnosis or the treatment. This has been described as ‘pre-commitment’4: to intervene at a given time not only despite the fact that the decision might be different if it is taken later, but also because the decision is bound to be different. Only a strong paternalistic worldview can underpin this intervention for such reasons.

Besides the physician's perspective, for women also the willingness to be treated could be different according to the perceived cause of the disease. In what seems to be the first report of hereditary BC,5 a nun affected with BC refused the treatment, arguing that her disease was hereditary and that ‘her blood was corrupted by a cancerous ferment natural to her family’.

Knowledge, representations of diseases and the paradigm of decision-making have dramatically changed over time, but prophylactic mastectomy is still controversial.

The first time I came across this intervention was as a scientist reading the contribution of Houn et al.6 in the respected American Journal of Public Health. The first time I considered it as a clinician was something like 6 months later. At the end of a consultation, I was summarizing the situation and acknowledging the likelihood that the woman (who was disease-free) belonged to a high-risk family; my advice, at that time, was to dismiss the ‘standard’ screening procedure: a mammography every other year starting at the age of 50; and adopt a ‘personalized’ one: a mammography every year starting at 30. After a moment of silence, the woman very quietly, but sadly, just answered: ‘Yes ... that's what my sister did ... she is dead’. Retrospectively, I wonder if it was really the first time a woman sent me that kind of message, or alternatively ‘thanks’ to the article of Houn et al., if it was the first time I was able to ‘hear’ it.

Why in particular should prophylactic mastectomy be seen more as an ethical concern than as a strictly medical question?

I will argue that there are at least four reasons.

  1. A risky condition is not a disease; the advent of ‘unpatients’.7
  2. The cause of the risk is a familial/hereditary/genetic factor; the genetic ‘exceptionalism’.8,9
  3. The breast is not the thyroid gland.3,10
  4. The assistance of ethics is, all the more required, for making tough and complex choices (as is the case for prophylactic mastectomy).
However, the first ethical issue I want to discuss concerns the words we use. Using the ‘correct’ words and understanding that they may have multiple meanings (polysemy) might be the right way to begin. According to the Merriam–Webster dictionary*, the verb ‘to prevent’ means ‘to keep from happening’ but also ‘to deprive of power or hope of acting or succeeding’. Part of the debate lies within the ambiguity of keeping a cancer from happening at the cost of losing a major symbolic organ.

Should we talk of prophylactic (Greek etymology) or preventive (Latin etymology) mastectomy? Neither one. Instead, I would personally advocate the use of ‘risk-reduction surgery’ for two reasons: first and foremost because it includes the term ‘risk’. Indeed, we know for sure that not every woman with a BRCA germline mutation will be affected with BC. We are not dealing with a disease, but with a risky condition; secondly, because using the word ‘reduction’ explicitly conveys the message that the protection is not absolute. Indeed, BCs after mastectomy do occur.11,12 Therefore, we are sure neither that the disease will occur nor that the intervention will always succeed in protecting the woman. Interestingly, we can observe that this debate (which word should be used: prevention or risk reduction?) has been settled in favour of risk reduction with regard to the preventive effect of tamoxifen on BC.13 Currently, however, to the best of my knowledge, very few authors use this terminology of risk-reduction surgery.14

The other debate about risk-reduction mastectomy is about mutilation (one definition from Merriam–Webster is ‘to cut off or permanently destroy a limb or essential part’). Is mastectomy a mutilation? In an article submitted in 1998 tackling the issue of prophylactic mastectomy, we wrote ‘prophylactic surgery is in fact a mutilation’; an anonymous reviewer stated: ‘... your sentence is quite loaded and might be offensive to some’ (s)he wanted our text to ‘... use more dispassionate language’. I am not sure we are able to know for sure who was right, because I think a mutilation can be seen like that in a specific culture.


   Medical background: it is a matter of life and death (but not only)
Top
 Abstract
 Introduction
 Medical background: it is...
A risky condition is...
 Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
 Acknowledgement
 References
 
This paragraph will deal with the medical rationality for risk-reduction surgery, having in mind that it is not an end per se, but a prerequisite for the other questions to be tackled.

Prophylactic surgery is not limited to cancer prevention, but nowhere else is it so hotly debated. For other ‘conditions’, the argument advanced to justify some decision to perform a prophylactic operation is the desire to reduce the risk of death, as in appendicectomy for sailors before a long race or for people from developed countries who go for hiking in medically underdeveloped countries. Besides death, other irreversible events such as cord15 or neurological damage16 or blindness17 are thought by some authors to justify the use of prophylactic surgery.

For a woman with a germline mutation of BRCA1 (more threatening than BRCA2), the risk of being affected with BC increases. The rate is almost 10–15% each decade after the age of 30. By the age of 70, in western countries where the life expectancy is close to or above 80 years, almost two out of every three of these women will have experienced this disease18 whereas for women without the germline mutation, the risk is one out of 10 or 12.19 Currently, after 15 years of follow-up, the survival rate for BC is 58%.20 Such a long-term analysis is relevant since in France, for instance, the mean age at diagnosis for BC is ~61 years of age.21 The mean age at diagnosis for BRCA1 BC is ~10 years younger.22 The prognosis for BRCA1-associated BC may be worst or more probably equivalent to sporadic BC. Thus, it can be roughly estimated that 15 years after a diagnosis of BC, almost one out of two women will have died from that cancer. We have to note also that when a woman dies at the age of 75, there is a loss of almost 10 years of life, but when she dies at 65, almost 20 years are lost.

The efficacy of risk-reduction surgery is really high, even if not absolute. Neither the real level of efficacy is known with accuracy due to potential bias,23 nor the factors that might impact on that level. It could, however, be assumed that the quality of the surgical procedure, including a subtle and critical balance between the risk of local complication (necrosis) and the level of protection, will vary depending on the experience/quality of the surgeon. I think the comparative study that could theoretically give us answers to these questions will never be carried out. Randomization might be perceived as offensive and unrealistic.24

Many surveys converge on a reduction rate > 90%. A publication gave, after a short mean follow-up (6.4 years), two BCs (1.9%) observed in 105 women who had undergone a bilateral risk-reduction mastectomy, although 184 (48.7%) of 378 matched controls were affected.11

The efficacy of other risk-reduction strategies is much lower. First among these is screening. Screening is not prevention. It reduces the risk of dying from a disease, but not of being affected (it could even be said that it increases the risk of being diagnosed with the disease). Women who choose this strategy have to accept being ill (many of them will undergo chemotherapy) and some of them will die despite an early diagnosis. Even with an improved strategy such as magnetic resonance imaging (MRI) it can be expected that 10% (or more) of these women will die from BC. The issue of adjuvant chemotherapy is not insignificant. Women affected with their first breast cancer who are BRCA1-gene defect carriers and who ask for controlateral risk-reduction surgery often gave me an explanation ‘I'm not afraid, as such, to be affected with a second cancer, but I don't want to undergo a new chemotherapy’.

Other preventive risk-reduction strategies are (or will be) available, such as prophylactic oophorectomy (which impacts on the risk of BC) or chemoprevention using hormono-intervention.25 For both interventions, the risk reduction of being affected by BC is ~50%.26 Therefore, theoretically, the association of prophylactic oophorectomy in the forties (after childbearing is over) and a screening programme based on MRI could achieve a high level of risk reduction. But how safe is safe enough?27

Lastly, the Cochrane organization made a review of the topic of ‘Prophylactic mastectomy’ and the authors' conclusion was ‘data ... support a large benefit ... but ... prophylactic mastectomy is such an extreme intervention that a single recommendation for practice is probably not appropriate’. When decisions are tough, ethics (and casuistry28) is required.


   A risky condition is not a disease
Top
 Abstract
 Introduction
 Medical background: it is...
 A risky condition is...
Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
 Acknowledgement
 References
 
The benefits of risk-reduction surgery will never be visible at the individual level. As for every preventive action, the success of the operation can be evaluated only at the population level, whereas in contrast, failures are seen at the individual and collective levels: ‘The silent beneficiaries and the resounding victims’. Many women who undergo prophylactic mastectomy will undoubtedly benefit from it,29,30 but nobody will ever know which ones, even after a life-long follow-up. Indeed, because the penetrance (the probability of being affected) of BRCA is not 100%, all cancer-free women who have undergone preventive breast surgery may think (and their physicians too) that the outcome might have been the same without resorting to surgery.

No one can ever be more than healthy. Prevention does not improve well-being, but reduces the risk of becoming affected. The benefits are only statistical and make sense only at the population level. Although from a neutral utilitarian standpoint, 10 identified lives saved are the equivalent of 10 anonymous lives saved; risk specialists, however, acknowledge that this is not so. Identifiable fatalities are not perceived with the same meaning as statistical fatalities.31

Besides the visibility of successes and failures, risk perception32 is another critical issue. The physician's task is to assess and communicate about actual risk, but on the ‘other side of the desk’, the patient's processing of ‘hard data’ is complex with many biases (from the so-called ‘neutral’ perspective).

What is the meaning of a probability?33: knowing the chance or the chance of knowing?34

It is a useful cue to remain humble when we look at how lay people understand probability and risk,35 particularly for surgical decisions.36 Despite improvement, risk perception after counselling is still not accurate (with regard to the ‘neutral’ risk assessment).37–39 and probably never will be.

Psychological and cultural factors40 have been used to explain why two women with the same risk assessment have huge differences in their risk perception. How risk communication is done41 also impacts on risk perception.

This is really critical because individual decisions are taken on the basis of perceptions, not on a neutral risk measure: ‘We see the world not as it is, but as we are (Emmanuel Kant)’. It is neither right nor wrong, it is just the way it is. We have to acknowledge in the construction of risk perception that there are factors that we do not understand or even know. However, this is no reason to dismiss clear risk communication about actual risks and benefits. Women will take these ‘neutral’ data into account, they will be a part of the decision process but they do not summarize it. The evidence for this complexity is our inability to predict what the choice of women will be; we are far away from Homo Economicus.

Lastly, some authors wonder whether risk management is really a legitimate field of medicine or a kind of extension of the mandate physicians receive from society, a kind of imperialism?42

However, the evidence that our modern societies are ‘risk-averse’ and ‘control-prone’ is mounting. The Risk Society43 and Surveillance Medicine44 are working together with positive feedback from one to the other. I think that biomedicine answers a perceived need of (global) ‘safety’, rather than creating it. Nevertheless, the question still is: do we answer or over-answer with well proportionate actions?45,46


   Genetic exceptionalism
Top
 Abstract
 Introduction
 Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
The breast is a...
 Why ethics matters: the...
 Acknowledgement
 References
 
Genetic testing{dagger}, almost a necessary step for accurate risk assessment, is not seen like other tests (cholesterolaemia, blood pressure, questionnaires about tobacco consumption and so on). Ad hoc reports have been presented and some common recommendations and fears have been expressed.47 In France there is specific legislation for genetic testing with specific constraints. This makes sense since genes do two things:48 they act at the biological level and they may impact on health, but they also connect relatives, therefore carrying all the symbolic meanings attached to these connections.

It has long been known that risk is not only a quantitative factor but that qualitative characteristics are also relevant.32 For example, genetic risk factors are small, invisible and not under control (unlike speeding or smoking). Characteristics like these usually increase the anxious perception of a risk factor.

However, if for specific issues such as disclosure and discrimination, the genetic dimension is highly relevant and deserves attention, training and experience; in the case of risk-reduction surgery, I assume that the terms of the debate would probably be the same if we were dealing with women whose high risk is related to phenotypic characteristics, such as atypical hyperplasia plus high density of the breast plus young age at menarche and exposure to ionizing radiation between the age of 10 and 20. One issue that might occur is that two sisters, one an individual at high risk for BC and the other carrying a BCRAI germline mutation, may both be considered for risk-reduction mastectomy and might have to take a decision within the same time frame. This might increase the tension and the difficulty for each of them to reach the decision that is best for her.


   The breast is a special organ
Top
 Abstract
 Introduction
 Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
 The breast is a...
Why ethics matters: the...
 Acknowledgement
 References
 
The cause of the whole controversy over prophylactic surgery and the main reason for this article boil down to asking the following question: why is there such a huge difference between prophylactic surgery for an asymptomatic abdominal aneurysm and prophylactic mastectomy?

The former strategy has been discussed mainly in terms of its efficacy and the risk/benefit analyses that may justify its adoption. Although the latter strategy is reported to have a high level of efficacy,29,30 its justification is still a matter of debate:1,49 medical efficiency is not the sole criterion involved here, and other parameters need to be taken into account.50

In the concise family cancer syndrome handbook,51 prophylactic surgery was recommended for four syndromes (Table 1), but surprisingly, was not mentioned for breast/ovarian hereditary cancer (BRCA1 and BRCA2{ddagger}) and was given as a possibility for Cowden's Syndrome. For two syndromes (FAP and MEN2), it was not a matter of ‘if’ but a matter of ‘when’. For two others (HNPCC and Cowden), it was stated that surgery could be ‘considered’. Lastly, for other syndromes (gastric, prostate, testicular, etc.), prophylactic surgery was not included among the possible options.


View this table:
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  		Table 1 Positions about prophylactic surgery for hereditary cancer conditions (constructed from the family cancer syndrome handbook)51

 
Decision-making should be interpreted and understood in the perspective of socially structured meanings of both breast and feminity. In western society at least, there is no organ as connected to femininity, sensuality, sexuality, adulthood and motherhood as the breast. It is therefore not surprising that irreversible ‘mutilation’ deserves caution and attention. If societies were less bound up in the sexualization of women's breasts, then the decision to ‘choose’ mastectomy might be less loaded.

These values are highly cultural oriented and this might impact on observed heterogeneous choices and recommendations.53,54


   Why ethics matters: the issue of autonomy
Top
 Abstract
 Introduction
 Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
Acknowledgement
 References
 
Ethics is everywhere (almost 120 000 references in PubMed). There are only a few tools to reach a decision: the logic, the law and ethics. Single-criterion decisions require nothing but a yardstick (I want the position with the highest income, I want to live the longest life possible...), but as two criteria are at stake (trade-off between quantity and quality of life, income, dignity, etc.), measuring each one is not enough; we also need a tool for weighing and this is where values, perceptions and ethics converge.

Among the ethical principles available, western countries often rely on autonomy. This pattern of the physician–patient relationship could be simplified as follows: the physician/counsellor has to deliver the relevant information, facts and figure; on the basis of this ‘knowledge’ and using her/his own values, the patient will take a decision.49 No further ethical analysis is needed. The advantage of this kind of arrangement is that it bypasses the risk of the paternalistic style and is coherent with the philosophical and economic background of the rational Homo Economicus who is aware and able to foresee his best future. The disadvantages are the risk of self-service medicine, and of patients taking decisions based on a false or incomplete comprehension of information.33

What should I do if...? A young woman 20 years old, deeply affected by her mother's death from BC (BRCA1 and BRCA2-negative), after full counselling and explanation still wants risk-reduction surgery. If there is no psychological pathological disorder impeding decision-making, ‘whose body is it anyway’?...

It might be said that autonomy is the worst paradigm of decision-making, except for the others that have been tried§. However, in 1998 in France, national guidelines/recommendations set limits to the possibility of prophylactic surgery using a list of criteria to fulfil. This could be regarded as a return to paternalism.55 One of the controversial recommendations was the imposition of a mandatory 6-month waiting period before undertaking bilateral prophylactic mastectomy (this 6-month waiting period was also required in France before a woman could have a surgical sterilization). In our update published in 2004, the mandatory 6-month waiting period was removed, based on the argument that the whole process from the first consultation to the time at which molecular results are available is long enough for women to make up their mind without the necessity of a mandatory extra time. I am now wondering whether, in 1998, our willingness to impose that waiting period was established to protect the women (from irreversible decisions made in haste) or to protect ourselves as guideline writers from criticism. Indeed, we were at that time under crossfire from autonomy advocates who looked at us as paternalistic while on the other side some people asked us whether we were ready to consider male castration for risk of seminoma!

Even if the Descartes model of decision-making is an oversimplification, I assume that for every risky condition (including the risk of seminoma), the step by step process will encompass: risk–benefit assessment of the different options: do nothing and wait for the disease before treating, prevention, screening or risk-reduction surgery, and then reach a shared decision56 under the primacy of the patient's will.

Many complex ethical and critical issues have not been tackled in this article, among which:

  1. the collective perspective on topics such as cost and availability;
  2. the fact that the decision for a risk-reduction mastectomy for BRCA1 and BRCA2 mutation cannot be taken independently of the decision about risk-reduction oophorectomy (BRCA1 and 2 increase both risks and the risk of dying of an ovarian cancer for women with a BRCA1 mutation is similar or even higher than the risk of dying from BC);
  3. the age at which surgery takes place;57
  4. identifying high-risk women is not that simple and classifying genetic variants of uncertain significance is a really tough issue;58
  5. in France (but the rate elsewhere should be close) for index cases, almost 85% of the high-risk individuals tested are not identified as mutation carriers. There is still a residual risk for these women to have a deleterious germline mutation (risk of false negative);
  6. the risk of being affected with BC (the momentum of all this debate) is an average and may be lower (or higher) in some families59 or for some women.60

In our society, we claim that the final word belongs to the woman involved, notwithstanding external barriers: legal, economic and internal ones: psychological and cultural. Even if challenged by other ethical values,61 taking for granted the primacy of autonomy,62 sometimes I feel comfortable to help and support women who choose this intervention. This has been the case particularly for a young woman affected with a first BC, treated with mastectomy and having a good prognosis. She knows what it means to be affected with BC and she knows the meaning of a mastectomy. Alternatively, I do not support a request for a woman affected with BC (or ovarian cancer) that seriously impinges on her life expectancy since the benefit of such an intervention is greatly reduced. I am not that comfortable with the intervention, but my comfort is not what women expect from me. When discussing that issue, I usually say: ‘I'm here to tell you what the risks, the expected protection and the feared side-effects are’. I usually end this part of the consultation by saying: ‘I know the protection I can offer you, but only you know the cost ... therefore it's up to you to say whether the benefit is worth the cost or isn't, but whatever your decision may be, our team will stand by you’.

Conflict of interest: none.


   Acknowledgement
Top
 Abstract
 Introduction
 Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
 Acknowledgement
References
 
The author is grateful to Gwen Terrenoire for her help and meaningful remarks.


   Footnotes
 
* www.m-w.cpm. Back

{dagger} In order to avoid confusion, I prefer to keep the word screening for looking for a disease, i.e. BRCA1 testing and mammography screening. Back

{ddagger} However, in this review, the article of Burke et al.52 is quoted, this later mentioning the availability of prophylactic surgery for both organs. Back

With conservative parameters: 1 h to read an article, working 40 h a week, 45 weeks a year and 40 years, it will take two lives (while more new papers will be published). Back

§ By analogy with what Churchill said about Democracy (from a House of Commons speech on November 11, 1947) http://wais.stanford.edu/Democracy/democracy_DemocracyAndChurchill(090503).html. Back

Accepted for publication February 6, 2007.


   References
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 Abstract
 Introduction
 Medical background: it is...
 A risky condition is...
 Genetic exceptionalism
 The breast is a...
 Why ethics matters: the...
 Acknowledgement
 References
 

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