The actress's decision increases requests for unnecessary bilateral mastectomies. This option is only recommended if the cancer is familial, between 5%-10% of cases
The announcement of Angelina Jolie's preventive double mastectomy continues, a year and a half later, very present in oncology consultations. The well-known actress's decision to spread the word that she had decided to have her breasts removed has had positive effects, such as greater awareness of the disease and the benefits of genetic counselling. But it has also increased the number of breast cancer patients who request unnecessary aggressive treatments, such as completely amputating the breast or even extending this option to the other breast, the one that is not affected by the tumor, while professionals strive to explain that This option, the double mastectomy, is an extreme and exceptional therapeutic alternative, limited to tumors of familial origin such as that of the American interpreter (rare, between 5% and 10% of cases). "The matter has spilled over," says Ana Lluch, head of oncology at the Hospital Clínico de Valencia and one of the leading specialists in Spain for breast cancer. It is the unintended consequence of the Jolie effect.
The feeling that the double mastectomy is the best solution has spread so much that Lluch dedicates a good part of her consultations to explaining the particularities of the Jolie case, and to convincing her patients that this radical intervention is not necessary. "This week it has already happened to me with two young women," she recounts. “We have reached a point where a high percentage of women want to remove the other breast, when there is no indication to do so,” she adds. "We notice it above all in young patients, the most sensitized by the actress, and less in the elderly," says Agustí Barnadas, head of oncology at the Santa Creu i Sant Pau hospital in Barcelona. "These are people who are willing to minimize the risk to the maximum and go through it [the double operation], even if it is not necessary."
Most of these patients in whom a tumor is detected do not know that Angelina Jolie did not have cancer, but rather a very high probability of suffering from it. A small number of tumors are of familial origin. In these cases, a genetic mutation is inherited that predisposes to developing the tumor. The actress was detected with an alteration in the BRCA1 gene which, as she herself indicated, raised the risk of developing breast cancer throughout her life to 87% and 50% in the case of the ovary. In fact, her mother and her aunt have died of ovarian and breast cancer, respectively.
Given this genetic profile, specialists offer the possibility of undergoing a preventive mastectomy, although this is not the only option. Some people choose chemoprevention: taking a medication (tamoxifen, for example) to reduce the risk. Or for an exhaustive follow-up (alternating mammograms and resonances every year) to detect cancer early if it appears, and fight it in its initial stages, when it is easier.
The third alternative to family cancer, in addition to chemoprophylaxis and controls, is what Jolie decided on: the operating room. The actress did not opt for a radical mastectomy -the total removal of the breast-, but a bilateral adenomastectomy, an intervention that empties practically the entire mammary gland and preserves not only the skin, but also the nipple and areola, for which, together with a prosthesis, the aesthetic effect is much higher compared to the removal and reconstruction of the breast.
These cases are usually identified when the doctor prepares the clinical and family history of new patients. Circumstances such as whether there are direct antecedents (sister, mother, aunt); if the cancer is bilateral or if there are breast tumors in males in the family, this is reason enough to recommend that the patient go to genetic counseling units -all the regional health services have referral units- to find the origin of the disease and be able to alert the rest of the family.
When there is no risk as definite as that of Angelina Jolie, her mother, or her aunt—which happens in the overwhelming majority of diagnoses—there is no need to take such forceful and traumatic measures. However, the drag effect motivated by the actress is difficult to stop. “We have to combat the iconic effect of Jolie”, says Miguel Martín, president of the Spanish Breast Cancer Research Group (Geicam), “people come up with the idea that if a person so famous, so rich and so powerful has opted for this [double excision] is the best thing to do.”
“We give them the explanation that her cancer is not of family origin, we tell them that her case is not that of Angelina Jolie; but even if you insist, sometimes the patient already comes with the idea that it is best to remove both breasts, despite the fact that there is no clinical indication”, adds Ana Lluch, “I see it constantly in consultations”.
Fernando Martínez Regueira, a surgeon specializing in breast pathology at the Navarra clinic, however, highlights the increased interest in the possible genetic origin of the tumor as the greatest impact of the Jolie effect. In the center of it, points out this member of the Spanish Society of Surgical Oncology, the number of genetic consultations have gone from 22 in 2013 to 49 throughout this year.
Martín alludes to studies in the United States that warn of an increase in double mastectomies, a circumstance to which the powerful American Society of Clinical Oncology (ASCO) has drawn attention and that predates the interpreter's decision. US. The head of oncology at the Gregorio Marañón hospital in Madrid links this situation to the eminently private structure of US healthcare: "two interventions charge more than one." In Spain there are no records of the number of mastectomies that are performed — "there are no statistics here," he says — but the oncologist at Gregorio Marañón points out that in public medicine this intervention is not practiced when it is not necessary, "the whole process is very protocolized”. The intention is always to apply the most limited surgery possible.
It is true that a woman who has had breast cancer, even if she has not inherited the Jolie gene (BRCA1) or BRCA2, which also increases the risk of breast and ovarian cancer, has a slightly higher than average chance of the population to develop a tumor in the other breast. Lluch puts this rate at 15% or 20% more. And it is also true that it is not easy to live with the suffering that this can generate, the tension due to healthy chest controls and the uncertainty about the results.
But, in any case, there is still no evidence that the double intervention is a better response against the tumor, according to the oncologists. A study published in the Journal of the American Medical Association (JAMA) Surgery in March suggested that most women who underwent double excision did not need it: 70% of them had a "very low risk" of developing a double excision. healthy chest tumor.
The conservative option has received a new endorsement in an article from early September, also in JAMA. After analyzing the medical records of more than 189,000 California breast cancer patients who were followed for at least seven years, researchers at the Cancer Prevention Institute of California concluded that death rates are similar among those who undergo conservative surgery and women who choose double mastectomy. Bottom line: “There is no guarantee that removing the healthy breast will do better for the patient,” in the words of American Cancer Society deputy chief medical officer Len Lichtenfeld.
