They are not agoras or sad women but neither identify with the topic of fighters nor wear pink bows. There are only seven women aware that they have an incurable disease and should live with it. Without ambiguities. Clinging to the progress of science. They don't hide their heads, they eat their fears and walk with a metastatic breast cancer in tow. Sometimes with more strength, sometimes with less. Like other 6,000 women, they belong to 20% to whom the tumor wants to bend. Six of them were cured or "disease free" but years later a radiological test or a biopsy confirmed no. Breast cancer that is cured by 80% of women in Spain , they then invaded the bones or became infatuated with nesting in the liver or lung.
They live "with death on their heels," says Soraya Mendoza. "On the death row," Beatriz Muñiz adds, "but it hurts us all," jokes Bel De la Cruz. Because laughter and desire to live do not lack. As Amparo Medina, Almudena García, Lola Navarro and Guiomar Lliatas, the youngest of the entourage, belong to the Metastatic Breast Cancer Association , a collective dedicated to raising funds to investigate treatments under the motto More research for more life . Because the average survival with metastases is between 5 and 10% in five years.
They have created the Chiara Giorgetti prize for research worth 50,000 euros and fund another 43,000 part of the Chronos-Hope project. All while each one has their own countdown and they see companions staying on the road.
None thought that after overcoming primary breast cancer, metastasis would come. «They don't tell you because it's awkward. How do you tell someone who is supposed to be cured that he can get sick again? »Guiomar asks aloud. At 26, she 'debuted' with sternum metastases and one of the most aggressive cancer subtypes. "My oncologist told me that they all died," he recalls. «I am very clear that the cancer is not pink , neither breast cancer nor pancreatic cancer. We do not want to make the metastatic visible because it is associated with death, but we need it. You have to investigate to know him. We are playing our lives and we are in the hands of science, ”he says.
The hardness of Guiomar's words contrasts with his serenity despite the fact that his personal and work life has been trapped in an impass. The treatment they apply to it is one of the best results, but continues to go to the hospital every 21 days hoping it will continue to act as a barrier. Everyone knows they will not be cured. "There is a lot of progress in treatments, which lengthen our lives with quality, but we have to manage to chronify the disease and it is like diabetes, which is not cured but you prick your insulin and continue living," explains Amparo.
At the moment, it is not possible. « We know that sooner or later, the treatment expires and is no longer effective , or its toxicity is already dangerous, and we will have to change. We live three to three months, from review to review, ”says Beatriz, who has multiple metastases throughout the skeleton.
Lola is described as "invaded." His dream of leaving to see the world after his retirement was parked. «When I was nine years old, and before starting a mountain crossing, I felt tired and went to a review. Tumor markers shot out ». Until then I didn't know that possibility either. « Not even in conferences you are named metastatic cancer . At most they tell you advanced. We must have more information, however uncomfortable. His fight also raises awareness among oncologists of the need to meet the demand for patient information. «What happens to me is better if they tell me clearly, even if I'm going to die the day after tomorrow. I want to be the one who manages my life, who decides when the treatment is over, ”he claims.
Almudena García was told nine years after her breast cancer that the liver was not going to heal again. "It was a shock." It goes through the second line of treatment pending the third because it has "a small progression." "We don't know how many lines we have and, although you try to follow, anything creates a problem for you, even a mosquito bite has had me hospitalized." And smile. That does not lose it.
Soraya Mendoza today has no tumor activity. It is "clean," but has linked a relapse every three years since the age of 28. And between the primary and the relapse, she had a daughter. «You are scared and every three months, when you have to do the CT scan, even more so. But I also feel lucky because the medication works for me and that doesn't happen to us all. In fact, we count the lines that lie ahead in case the next one fails us ».
Bel is in the first. It is the hopeful case of the group. He was found cancer cells in a rib years after overcoming his tumor in the chest and after being a mother of twins, but his tumor activity does not appear since then. "Maybe the cells were removed at that biopsy." Medically the disease is considered "in remission." However, he is still in treatment and his "ITV" every six months weighs on the calendar.
Because of their appearance, nobody would say that these women have metastatic breast cancer or that they will never be cured. "There are no more aggressive side effects and you die great, from illness or toxicity," they said. While they are still looking for wings in science to run in front of a plane that they can't stop.
"You have to know the disease"
Breast cancer is cured . In more than 80% of cases. «You don't have to stigmatize the word cure, because there is when the disease is localized. We apply the treatments so that it does not reappear, but we must know that about 30% of patients end up developing metastases ». Cristina Hernando , an oncologist from the Breast Cancer Unit of the Clinical Hospital of Valencia and the Incliva Health Research Institute.
These patients «have to learn to live with the disease , and we must make them understand that it is forever, that we are in another scenario for which there is no cure, but that the results of the research allow a control of metastatic breast cancer during longer , they increase survival and improve the quality of life, ”he explains. These advances are the result of investment in pharmacological research through clinical trials but also in basic ones. "You have to know the disease and many human and economic resources are needed for it," claims the oncologist, who considers network work to be key, in cooperative groups that allow any patient to access the most innovative treatments.
How is a metastatic patient emotionally treated? «It depends on what you demand. Without generating fear, I think you should know the more information the better, because you will have more ability to carry the disease. I think you have to be clear and it is very important that you know that the treatments are depleted and that there will be others , that some will work better and others worse, ”he warns.
«But there are also patients who demand information that we do not have. We can give statistics, but it's not real life and we don't know how something will evolve in a patient. That's why I think you have to go step by step, without advancing events, ”he explains.
Targeted Therapies
Targeted therapies have been developed in recent years "that have changed the natural history of the disease and guarantee an 80% survival in five years". "We have not chronicled the disease, but we must continue investigating because steps are taken that bring many benefits," says Hernando.
«One of the most significant milestones without a doubt in recent years was the knowledge of the heterogeneity of breast cancer . It is a disease with different biological subtypes that require specific treatments. The molecular subclassification of breast cancer is allowing us to better treat patients and with increasingly effective drugs , ”said the oncologist who, like the women of the Metastatic Breast Cancer Association, demands that the focus and funds be put on .
«It is necessary to guarantee the future of both public and private research and for this the creation of tools that favor patronage is essential, in addition to the reduction of bureaucracy , the structural improvement of the system and the increase of public investment.
Currently, there are 31 active trials in the Incliva , which are being developed in collaboration with 40 cancer patients, not only breast cancer, and in which 17 researchers work.
BREAST CANCER SUBTIPOS
- POSITIVE HER2. The most aggressive with the best prognosis. The discovery of cancer types with different biological profiles has allowed the incorporation of monoclonal antibodies such as trastuzumab to the treatment of HER2 positive breast cancer, until then of poor prognosis due to its greater aggressiveness. Patients with HER2 positive breast cancer no longer have only trastuzumab, the association of a second antibody -pertuzumab- to treatment has been shown to significantly increase survival in advanced stages. Also T-DM1, a modern drug that combines chemotherapy and trastuzumab) is highly effective.
- LUMINAL More survival and quality of life for the most common subtype. In patients with "hormone-sensitive" disease, new biological drugs have also been developed that, associated with classic treatments such as hormone therapy, improve results. Everolimus first, and more recently CDK4 / CDK6 inhibitors such as palbociclib, ribociclib or abemaciclib have further improved the survival and quality of life of these patients. Molecular and tumor mutations knowledge allows the search for new targeted treatments and targets to make precision medicine a reality in patients with metastatic breast cancer.
- TRIPLE NEGATIVE. Chemotherapy and treatment in clinical trials. Immunotherapy has also shown benefit in a subset of patients with triple negative breast cancer. These are tumors with absence of hormonal expression and Her2 and that also have PDL1 protein expression> 1%. They benefit from the combination of drugs directed against this protein combined with chemotherapy. It is a target located in the immune system called PD-L1 and that, by measuring it, will identify those patients who could benefit from immunotherapy. It is the first step that opens the way to research in this therapeutic line.
- BRCA + PATIENTS . Among patients with metastatic breast cancer and with a mutation in the germline BRCA1 / 2 gene, PARP inhibitor drugs (also called poly (ADP-ribose) polymerase inhibitors such as olaparib and talazoparib have been shown a significant benefit by decreasing the risk of progression compared to standard chemotherapy therapy.
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