Les femmes à haut risque (p. ex. porteuses de BRCA) regrettent-elles la mastectomie de réduction du risque — ou d'avoir choisi la surveillance ?
Si vous agissez
Subir une mastectomie de réduction du risque (prophylactique)
19%
Si vous n’agissez pas
Choisir une surveillance intensifiée plutôt que la chirurgie
14%
Pourcentage de personnes qui regrettent ensuite chaque choix. Les barres et le registre complet s’affichent ci-dessous.
Santé
Dernière révision 2026-07-14
Qualité des preuves 4.25/5
Score d’évaluation en huit dimensions selon la
grille de qualité
. Chaque dimension notée de 1 à 5.
D1 Vérification des sources
5/5
D2 Autorité et indépendance des sources
5/5
D3 Précision du taux de regret
3/5
D4 Comparabilité des sources
3/5
D5 Motif de Gilovich
4/5
D6 Qualité de la prose
5/5
D7 Complétude des réserves
5/5
D8 Qualité de l’échantillon
4/5
Moyenne4.25/5
Données de substitution — aucune enquête directe sur les regrets n'existe pour cette décision. Les taux sont dérivés des scores de satisfaction et des obstacles d'accès plutôt que de questions portant directement sur les regrets. Voir les mises en garde ci-dessous.
Regret d'action
Subir une mastectomie de réduction du risque (prophylactique)
19%
19 % insatisfaites de l'intervention en moyenne 14,5 ans après (Frost) ; dans une cohorte distincte, 7 % ne rechoisiraient pas l'opération et 33 % ont trouvé le résultat esthétique différent de ce qu'elles attendaient
Porteuses de BRCA / femmes à haut risque après mastectomie prophylactique bilatérale
en moyenne 14,5 ans après l'intervention
Regret d'inaction
Choisir une surveillance intensifiée plutôt que la chirurgie
14%
aucune enquête directe de regret — proxy : l'inquiétude face au cancer monte au lieu de baisser sous surveillance, et 14 % des femmes ayant choisi la surveillance ont développé un cancer du sein (28/201 sur une médiane de 5,9 ans ; 9,9 % cumulés à 5 ans)
Porteuses de BRCA / femmes à haut risque choisissant une surveillance mammaire intensifiée
incidence brute sur un suivi médian de 5,9 ans ; inquiétude mesurée sur 6–8 mois
% regrettent ce choix
Subir une mastectomie de réduction du risque (prophylactique)Choisir une surveillance intensifiée plutôt que la chirurgie
19%14%
balanced — À peu près équilibré — les deux choix entraînent un regret similaire.
Décisions associées
Décisions sémantiquement similaires — même terrain, compromis différents.
At long follow-up, roughly one in five women is dissatisfied with a risk-reducing mastectomy. The largest long-term study — 572 women a mean of 14.5 years after bilateral prophylactic mastectomy at the Mayo Clinic — found 19% dissatisfied with the procedure, alongside 74% who reported diminished emotional concern about developing breast cancer (Frost et al., 2000). That dissatisfaction is mostly about the body rather than the decision: about a third reported an unfavourable effect on satisfaction with body appearance, and a quarter on feelings of femininity. An independent Norwegian cohort of BRCA1/2 carriers pins the narrower figure down — only about 7% would not choose the same operation again, though a third said the cosmetic result was not as expected, and lower satisfaction clustered among women who found the decision process difficult or felt unsupported by their clinicians (Hyldebrandt et al., 2025). The regret that exists tends to attach to reconstruction complications and to decisions that felt externally initiated, not to the cancer-risk reduction the surgery reliably delivers.
The surveillance side has no direct regret survey at all, so its rate is a proxy assembled from two things. First, the harm that materialises: in a Canadian cohort, 14% of women who chose surveillance developed breast cancer (9.9% cumulative at five years), against 6% among those awaiting surgery (Macadam et al., 2021). Second, the burden that persists: on the one measure taken comparably on both arms — cancer worry — surgery lowers it and surveillance does not. A prospective cohort found anxiety fell over six to eight months in women who chose mastectomy but rose in women who chose surveillance, ending higher in the surveillance group (Dick et al., 2022). Developing a cancer is not the same as regretting the choice, and many surveillance-detected cancers are caught early, so the 14% inaction figure is a materialised-harm-plus-worry stand-in, not a measured regret rate.
The two numbers land close together, but the closeness is fragile: it depends on which proxy anchors each side. They are not measuring the same thing — the action rate is long-term dissatisfaction with an irreversible operation, while the inaction rate is cancer incidence plus unresolved worry among women who kept their breasts. Swap the broad 19% dissatisfaction for the narrower 7% who would not choose the surgery again, and the balance tips toward surveillance; anchor the inaction side on the 9.9% five-year cumulative incidence instead of the 14% crude rate, and it tips the other way. On the worry axis alone the surveillance side carries more — the Gilovich-typical pattern in which the road not taken keeps generating unease — but risk-reducing mastectomy is permanent and exacts body-image and reconstruction costs that surveillance never imposes, which is what holds the action-side dissatisfaction up to meet it. None of the underlying data is a US survey of the surveillance arm, and no study asks surveillance-choosers directly whether they would decide differently, so the near-balance is a direction with wide error bars, not a settled equivalence.
Sources : action
Registre des sources
Chaque chiffre ci-dessous correspond à ce que la source a rapporté, avec la citation textuelle sur laquelle nous nous sommes appuyés et la méthode de calcul. Cliquez sur un lien pour vérifier directement.
[1]JAMA (Frost et al. 2000, Mayo Clinic) — Long-term satisfaction and psychological and social function following bilateral prophylactic mastectomy
Revue par les pairs
Among 572 women (94% of survivors), mean 14.5 years after bilateral prophylactic mastectomy: 70% satisfied with the procedure, 11% neutral, 19% dissatisfied; 74% reported a diminished level of emotional concern about developing breast cancer; negative effects were reported on satisfaction with body appearance (36%) and on feelings of femininity (25%)
Extrait
“"Most women (70%) were satisfied with the procedure; 11% were neutral; and 19% were dissatisfied. Among the psychological and social variables, the most striking finding was that 74% reported a diminished level of emotional concern about developing breast cancer. The majority of women reported no change/favorable effects in levels of emotional stability (68%/23%), level of stress (58%/28%), self-esteem (69%/13%), sexual relationships (73%/4%), and feelings of femininity (67%/8%). Forty-eight percent reported no change in their level of satisfaction with body appearance; 16% reported favorable effects. However, 9%, 14%, 18%, 23%, 25%, and 36% reported negative effects in these 6 variables, respectively."
”
Données source de
2000-07-19
Consulté le
2026-07-14
Calcul
The action-side anchor. Frost et al. is the largest long-term follow-up of prophylactic mastectomy (n=572, mean 14.5 years, US Mayo Clinic cohort) and the standard reference for durable outcomes. It measures satisfaction, not "regret" directly: 19% were dissatisfied with the procedure at long follow-up, which we take as the action-side proxy for a lingering negative decision outcome. This overlaps with — but is broader than — outright decision regret (see the Hyldebrandt cohort, where only ~7% would not choose the operation again). The 19% dissatisfied largely reflects body-image, femininity, and cosmetic outcomes rather than a wish to have skipped the surgery altogether.
[2]Familial Cancer (Hyldebrandt et al. 2025) — Experiences with risk-reducing mastectomy in Norwegian BRCA1/2 carriers without prior breast cancer
Revue par les pairs
Of 190 BRCA1/2 carriers who had undergone risk-reducing mastectomy: 78.9% (150/190) satisfied and would choose the same procedure again; 13 (6.8%) would not choose the same operation again; 63 women (33%) said the operative result was not as expected; satisfaction with healthcare-system support gave an OR of 5.5 for being satisfied with RRM (p<0.01), and finding the decision difficult lowered the odds (OR 0.2, p=0.02)
Extrait
“"78.9% (150/190) were satisfied with their decision and would choose the same procedure again. [...] 13 (6.8%) [would not have chosen the same operation]. [...] 63 women (33%) expressed that the result was not as expected. [...] Feeling satisfied with support from the health care system gave an OR of 5.5 for being satisfied with having undergone RRM (p < 0.01). Those who found the decision difficult had lower odds of being satisfied (OR 0.2, p = 0.02)."
”
Données source de
2025-01-01
Consulté le
2026-07-14
Calcul
Independent corroboration from a Norwegian cancer-unaffected BRCA1/2 cohort (n=190 who had RRM, of 272 respondents). It supplies the cleaner decision-regret figure: 6.8% would not choose the operation again — a floor well below Frost's 19% dissatisfaction, because "dissatisfied with the result" and "would not do it again" are different constructs. The third of women whose result was "not as expected" tracks the same body-image/reconstruction dissatisfaction Frost measures. The finding that a difficult decision process and weak healthcare support predict lower satisfaction is the source for the prose claim that RRM regret concentrates around reconstruction outcomes and decisions that felt externally driven rather than chosen.
Sources : inaction
Registre des sources
Chaque chiffre ci-dessous correspond à ce que la source a rapporté, avec la citation textuelle sur laquelle nous nous sommes appuyés et la méthode de calcul. Cliquez sur un lien pour vérifier directement.
[1]Hereditary Cancer in Clinical Practice (Dick et al. 2022) — Psychological factors and the uptake of preventative measures in BRCA1/2 pathogenic variant carriers: results of a prospective cohort study
Revue par les pairs
Prospective cohort (n=98). Anxiety in the intensified-breast-surveillance (IBS) group rose over 6–8 months (mean ~6.2 → ~6.6), while anxiety in the risk-reducing-mastectomy group, elevated just after test-result disclosure (T1 ~8.2, up from ~7.6 at baseline), fell to ~5.7 over the same period; elevated post-disclosure anxiety predicted opting for RRM (OR 1.2, p<0.01)
Extrait
“"Baseline anxiety levels in women opting for RRM were high but decreased over time, while they increased in women opting for intensified breast surveillance (IBS). [...] Elevated levels of anxiety after genetic test result disclosure (T1) were associated with the decision to undergo RRM (p < 0.01; OR = 1.2, 95% CI = 1.05–1.42)." [Reported group means: RRM T1 8.2 → T2 5.7; IBS T1 6.2 → T2 6.6, so at follow-up the surveillance group's mean anxiety (6.6) exceeded the mastectomy group's (5.7).]
”
Données source de
2022-12-01
Consulté le
2026-07-14
Calcul
The construct-matched half of the inaction proxy, and the reason the two sides can be compared at all. On the one axis measured comparably on both arms — psychological burden / cancer worry — surgery lowers it and surveillance does not: the surveillance group's anxiety rose and ended higher than the mastectomy group's. This is the residual worry that is the honest analogue of "regret" for the surveillance choice. It is not a regret rate and yields no percentage; it fixes the direction of the worry burden, not the magnitude.
[2]Current Oncology (Macadam et al. 2021) — Prophylactic Surgery in the BRCA+ Patient: Do Women Develop Breast Cancer While Waiting?
Revue par les pairs
Of 333 BRCA carriers, 201 chose surveillance and 132 chose prophylactic mastectomy with immediate reconstruction. 28/201 surveillance patients (13.9%) developed invasive breast cancer vs 8/132 (6.1%) in the surgery group; 5-year cumulative incidence 9.9% (surveillance) vs 4.9% (surgery). 89% of surveillance-detected tumours were <20 mm
Extrait
“"During this period, 6% of patients developed breast cancer compared with a 14% incidence of breast cancer in patients choosing surveillance. [...] At five years, the cumulative incidence of breast cancer in the surveillance group was 9.9% compared with 4.9% in the PM/IBR group." [Results: "201 patients chose S, 132 chose PM/IBR"; "Twenty-eight of the 201 surveillance patients and eight of 132 patients in the PM/IBR group developed invasive breast cancer"; median surveillance follow-up 5.9 yr; 89% of tumours <20 mm.]
”
Données source de
2021-02-01
Consulté le
2026-07-14
Calcul
The materialized-harm anchor for the inaction proxy. The inaction-side rate is set at 0.14 — the crude cited figure: 28 of 201 surveillance-choosers (13.9%) developed invasive breast cancer in this Canadian cohort over a median 5.9 years. No worry adjustment is applied; an earlier draft nudged this to 0.15 to "fold in" the rising cancer worry, but that increment has no source basis (Dick 2022 yields no regret percentage) and has been removed. The 5-year cumulative incidence of 9.9% is the alternative anchor; choosing it instead would move the rate to ~0.10 and the delta to ~0.09. Developing cancer is not itself "regret" — 89% of the surveillance-detected tumours were under 20 mm, i.e. screen-caught early, and no survey asks surveillance-choosers whether they regret the decision — so this is a materialized-harm-plus-worry proxy, not a regret survey. It is the closest available inaction anchor and is deliberately flagged as a proxy. Boundary call: with action 0.19 and inaction 0.14 the delta is exactly 0.05, sitting right on the rubric's balanced/action_dominates line (|delta| < 0.05 is balanced). The label is deliberately kept at "balanced" rather than tipped to "action_dominates" because the two rates are non-comparable proxies (long-term dissatisfaction vs materialized cancer incidence); a signed delta at the boundary between them carries no interpretable direction, so "neither side clearly dominates" is the honest reading.
Réserves
Les deux taux sont des proxys issus de cohortes non comparables, et cette entrée est publiée avec une mention de proxy pour cette raison. Les 19 % du côté action sont un chiffre de satisfaction/insatisfaction mesuré en moyenne 14,5 ans après une mastectomie prophylactique bilatérale (Frost 2000, États-Unis, n=572) ; le chiffre plus propre de regret de la décision, issu d'une cohorte BRCA indépendante, est bien plus bas — environ 7 % ne rechoisiraient pas l'opération (Hyldebrandt 2025, Norvège, n=190), un tiers rapportant que le résultat esthétique n'était pas celui attendu. Les 14 % du côté inaction ne sont pas du tout un taux de regret : ils sont ancrés sur les 14 % de femmes ayant choisi la surveillance qui ont développé un cancer du sein (Macadam 2021, Canada, n=201 ; 28/201 sur une médiane de 5,9 ans, 9,9 % cumulés à 5 ans), un dommage matérialisé, avec la trajectoire ascendante de l'inquiétude face au cancer sous surveillance (Dick 2022, Europe, n=98) comme corroboration au construct apparié. Aucune enquête publiée ne demande directement aux femmes ayant choisi la surveillance si elles la regrettent, si bien que le taux d'inaction porte une large incertitude. Les deux côtés mesurent des constructs différents — insatisfaction à long terme envers une chirurgie irréversible contre incidence de cancer plus inquiétude résiduelle — de sorte que le delta de 0.05 se situe à la frontière de l'équilibre et n'est une grandeur interprétable dans aucune direction ; il doit se lire comme "aucun côté ne domine clairement", pas comme une égalité précise ni comme un regret plus fort de l'action. Ce quasi-équilibre est aussi, en partie, un artefact du choix des ancres : prendre pour le côté action le chiffre plus propre de regret de la décision (les 7 % de Hyldebrandt qui ne rechoisiraient pas, plutôt que les 19 % d'insatisfaction de Frost) ferait basculer le signe vers l'inaction, tandis que prendre pour le côté inaction l'incidence cumulée à cinq ans de 9,9 % élargirait l'écart à environ 0.09. L'équilibre est donc une propriété des proxys choisis, pas un résultat. Le seul axe mesuré de façon comparable sur les deux bras, la charge psychologique, penche vers le côté surveillance : l'inquiétude baisse après la chirurgie et monte sous surveillance, le schéma d'inaction typique de Gilovich. En face, la mastectomie prophylactique est irréversible et impose des coûts d'image corporelle, de féminité et de complications de reconstruction que la surveillance n'a pas, ce qui maintient l'insatisfaction du côté action assez haute pour compenser. Les populations sont américaine, norvégienne, canadienne et européenne ; aucune des données de regret/satisfaction n'est une enquête américaine du bras surveillance. Le regret après mastectomie de réduction du risque se concentre sur les complications de la reconstruction, les attentes esthétiques déçues et les décisions ressenties comme venues de l'extérieur plutôt que choisies (Hyldebrandt 2025) — pas sur la réduction du risque de cancer elle-même, que la chirurgie délivre de façon fiable.
