With their words they carve a “supernatural fear.” He doesn’t sleep, he doesn’t eat, he vomits. You feel dread in the interval of time that passes from when your body enters the CT scanner until the oncologist gives you the results. It has happened every time, invariably, since Ció Lerma, a 51-year-old cancer patient, overcame her first kidney cancer in 2021. Similar symptoms accompanied Eva Martín “with very little variation from the first check-up to the last” eight years ago, when She was diagnosed with cervical cancer: “The stress is brutal, the head starts to go all over the place. That week everything hurts and I start to find strange things.” Violeta Assiego, who is disease-free although still undergoing hormonal treatment after being diagnosed with breast cancer two and a half years ago, describes it like this: “It’s so deep that you feel like you can’t catch it.”
Three women, still undergoing medical follow-up, express a very widespread emotion among those who have recovered from the disease. The fear does not end with the end of the treatments or with the good news that they have worked. Nor with the return to a life similar to the previous one, before the diagnosis, and sometimes not even with the passing of the years, explains Álvaro Gonvano, psycho-oncologist at the Spanish Association of People Affected by Linforma, Myeloma and Leukemia (AEAL). The matter was part of the conferences of the last Ibero-American Congress of Cancer Patients organized by GEPAC at the end of November.
However, this fear does change form until it is constituted with this name and this surname: “Fear of relapse.” Or recurrence, in medical terms. “It is very common and begins to appear as the therapeutic itinerary ends. With treatments you have a goal and the presence of the healthcare team in your life, very stable, generates many elements of security. But as that moves away, it becomes more spaced, concern appears,” develops Paloma Romero Martín, who works as a psycho-oncologist at the Spanish Association against Cancer.
The result of “many losses”
In his consultations, Romero tries to convey to patients that they are not doing anything wrong, that fear is a common emotion “because they have experienced many losses” in recent months: health, energy, weight, security. Sometimes the lack of understanding of the environment, the question of “why are you not feeling well if everything has turned out well”, makes this discomfort deeper. And also more invisible, more secret.
“There is a contrast, a moment in which you feel very alone in your emotions because people are turning the page a little and you have already overcome the hardest thing on a physical level,” admits Violeta, whose fears were triggered when her sister-in-law, one of his references died of breast cancer. “With the help of the psycho-oncologist, I felt that I could touch that deep fear by talking about it, holding it and looking at it. Beyond that professional space it is very difficult to do it with someone.” For Ció, each death, more or less close due to this pathology, makes him “plummet.”
Go ahead, Romero repeats, that fear does not weigh equally on all people. In some it is more attenuated while in others it is more pronounced and for longer. Patients can enter a complicated state of hypervigilance in which any symptom – a catarrhal cough or back pain from contractures – is filtered through the illness. It has happened to Ció and Eva. Also Violeta. “It’s logical because they don’t want to have a bad time again. “It is a fear that makes a lot of sense,” defends Gonvano.
Cancer is suffered first-hand by the patient, but those who accompany him in his closest circle also experience discomfort, worry and sadness. “Sometimes – the psycho-oncologist explains – there are dynamics of overprotection that lead to silence. The caregiver does not want to share because they feel that they are supporting the other person and as a patient you do not want them to see you down so that the person who loves you does not sink. In the end both people are at the same point and no one shares.”
Psychological support resources are far from universal. “They exist only in some centers and services,” confirms Dr. Rebeca Lozano, oncologist at the University Hospital of Salamanca and scientific secretary of the Spanish Society of Medical Oncology (SEOM). This lack of specialized care is covered through patient associations, support groups or private services, “although the ideal is for this type of services to be fully integrated into the public health system,” claims Lozano, because the stage “after of cancer” not only requires medical follow-up.
Accompany without hiding
Relapse is a possible scenario, not the most frequent, but feasible. It depends on factors such as the type of cancer and its stage. “Our work as oncologists is not limited only to ruling out relapses, but we must also accompany the patient in this process with the greatest possible empathy and clarity, but always based on evidence,” Lozano points out. It is important to “listen to their concerns, validate them, and avoid downplaying their thoughts,” Lozano continues. But also offer “clear and adapted to each patient” explanations about the risk of relapse.” That is, not hiding what can happen in a delicate balance between not feeding fear and not ceasing to be realistic.
There are more or less universal issues that are known risk factors: smoking, drinking, eating poorly, not practicing physical exercise. “We receive a lot of information about things that are good for us, let’s say controllable habits. In other words, if you do this, it is easier to avoid recurrence. And that means that sometimes when I eat something that is not positive because it is not in my daily diet, like sugar or meat, I have a point of fear,” Violeta shares.
Ció is worried because she has been feeling unwell for a few weeks and they have detected blood in her urine. The malignant cells appeared again in 2022 in the good kidney, the one that had not been removed. He has a CT scan scheduled for January and, although he has asked to bring it forward, since there is little time left, they have kept the appointment. “I took the relapse very badly, I plummeted, and since then the fear has multiplied exponentially. In principle I am free of illness, but I don’t know.”
The follow-up period for a diagnosis that has required invasive treatments such as surgery, chemotherapy or radiotherapy can last between five and ten years until discharge. Over time and after many revisions, Eva says, “the Damocles sword that I felt I had on me at the beginning has become a little knife.”
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