Not everything is rosy
The data are there. In 2019 there were 6,621 deaths from breast cancer according to the Spanish Society of Medical Oncology. “I thought this was not going to come back and when it comes back, and they tell you that it does so in a more severe form, immediately, you associate the word metastasis with death. You assume that you are going to die, then you try to prolong your life a little longer and as the years go by, you have some hope that the drugs will work,” says Pilar Fernández. Managing emotions at such a complicated time is not easy. The president of the AECMM tells us that “when you receive the diagnosis, you need a period of acceptance: of the disease, of the side effects, of giving up many things and of living with fear. It is essential to try to manage that fear so that you can go about your day-to-day life and not let it rob you of good moments.
But as Pilar assures, “the diagnosis is hard, but what comes after is also hard”. All metastatic patients every 3 to 4 months undergo tests to see whether the disease has progressed. If there is progression it means that the drug has not worked and you have to move on to a new line of treatment. Again, uncertainty. Life changes completely. Pilar recognizes that you never go back to your old life, neither occupationally, nor socially, nor physically are in the same conditions.
According to AECMM, breast cancer is currently the leading cause of death in women between 35 and 50 years old and the average life expectancy is 3 to 5 years.
Dr. Miguel Ángel Seguí Palmer, head of the Medical Oncology Service of the Hospital Parc Taulíexplains that “any diagnosis of metastatic cancer is a very important impact for the patient because in the end we are telling her that she has a disease that we can treat but that we cannot eliminate or cure. That means that she will live with it for the rest of her life.”
As the doctor explains, when the disease is localized, all efforts are aimed at guaranteeing cure with chemotherapy, surgery or radiotherapy. In the case of metastatic breast cancer, the goals change. “As aggressive as we want to be when we’re going to cure someone, when we’re not going to cure them it has to become what treatment can we apply to make them better, but without making their quality of life worse.”
A diagnosis of metastatic breast cancer in a woman impacts every sphere of life. “It changes her whole family situation, her personal situation and obviously changes her whole outlook for the future,” he recalls.
Metastatic triple negative
Within breast cancer, there is one with a first and last name that is more severe than the rest: triple negative. This cancer represents between 10% and 15% of all breast cancers according to the American Cancer Society.. The term refers to the fact that the cells of this cancer do not contain estrogen, progesterone or HER2 receptors. “It is a tumor that in general has a more aggressive behavior,” explains the doctor, who adds that “it has a higher mortality rate than other breast cancers”.
“Triple-negative carcinoma is the breast cancer that is the hardest to treat because we have fewer treatment options.”
– Dr. Miguel Ángel Seguí Palmer.
Triple negative affects younger women. “Normally, breast cancer is a disease that has to do with the woman’s hormonal history: pregnancies, childbirth, breastfeeding, age at menopause… In the case of triple negative, it does not. We are dealing with a tumor that frequently affects younger women than usual and that in some cases it has a hereditary relationship,” argues Dr. Seguí.
The expert points out that it is the tumor that works the least in screening programs because it is a disease that grows rapidly and in younger age groups in general. “One problem is that many times young women have the false sensation of premenstrual breast alterations, benign tumors… The advice is still the same, a monthly breast self-examination and in case you notice any tumor between the breast and the armpit, you have to go to the doctor,” argues the doctor. However, he recognizes “that most of the time when a consultation is made, it is usually nothing, but it is important that, at the slightest doubt or alteration in the mother, tests should be done”.
At the Spanish Association of Metastatic Breast Cancer, Pilar Fernández has colleagues who are living this reality. “Our hope is placed in research.” The goal of these patients is for metastatic breast cancer to be chronified.
“Information doesn’t have to be scary, what has to be scary is disinformation.”
– Pilar Fernández, president of the AECMM.
Empathy, key in the relationship between patient and oncologist.
Throughout this tough process, the role of the oncologist is fundamental. Pilar Fernández acknowledges that “proximity to the oncologist is very important”. This has become more evident during the pandemic with online consultations. In this sense, Dr. Miguel Ángel Seguí knows that his figure is fundamental in these crucial moments in patients’ lives, so “we have to develop our capacity for empathy to understand the woman’s situation and put ourselves in her place. Above all, we have to be able to convey the reasonable and real objectives of the treatment”. Patience, time and empathy.
Not all patients want to know all the information and although this is a legitimate reaction, the ACMM advocates that patients should be active during this process and have all the information about their situation so that they can take control of the disease and make decisions together with their oncologist. Pilar Fernández concludes that “information should not be scary, what should be scary is disinformation”. But it must always come from the hands of the medical team.
About the Spanish Association for Metastatic Breast Cancer
Pilar Fernandez is the president of the Spanish Association of Metastatic Breast Cancer. The AECMM was born from the initiative of Chiara Giorgetti, who in January 2017 created a closed group on Facebook in order that women with metastatic breast cancer had their space, since they live a different reality from women with bed cancer.
In the group there are 1,500 patients from 12 countries who are provided with information and support and are also encouraged to support and interact with each other. Pilar Fernández acknowledges that “many times, no matter how much your family supports you, they cannot understand you the way we understand each other”.
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3. Metastatic Breast Cancer Alliance. Quality of life key findings. Available here. Last accessed: October 2021.