Global Cancer Movement: Fear of Recurrence in Cancer – Emotional Impact and Patient Support

In the inaugural event of the Global Cancer Movement, initiated by OncoDaily, Adrian Pogacian explores the emotional impact of cancer, addressing fear, hope, and mental resilience. Cancer not only affects the body but also deeply influences the mind, with fear of recurrence being a major challenge for many patients.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

What is cancer? Till now, many presentations were about cancer as a disease from the medical oncology point of view. So, I would like to bring into attention that cancer is more than a disease.
Cancer is also emotions. As human beings, we are, let’s say, made also from emotions. We are human beings, so we are thinking and we care about ourselves and about the others.

Because therefore, cancer remains a very important disease from a psychological point of view. Cancer, as I mentioned before, is emotions. The first emotions that come into our mind is fear.
Cancer is fear. We have to admit this. What that means?

That means that the word itself, fear, stirs up with an imminent danger. Something is going to happen. When I receive the diagnostic of cancer, my body is entering in a defense mechanism.
Because something is going to happen. Because it is a danger. Fear is always associated with danger.
Moreover, cancer is sadness. The word itself suggests that something at all might be loose. We are very sad when we receive this diagnosis, this oncological diagnosis.

We are very sad because within 24 hours, which means pre-diagnostics, diagnostics and post-diagnostics phases, we see our whole life for once at all. So, sadness is a consequent emotion after fear. And not the least, it’s anger.
The word itself can bring into attention the fact that we might have a limited life. Anger with sadness are the two emotions that, along with fear, create or is the base or the foundation of the future trajectory of every oncological patient from psychological point of view. Psychological point of view, which for sure, it will influence also the medical acceptance or the treatment acceptance of medical oncology.

As I mentioned before, despite the progress in medicine and technologies, as everybody knows, we are living tremendous times in development of technologies regarding cancer disease. But cancer remains a persistent disease. Cancer remains a danger, as I mentioned before.
Regarding fear and why I choose for my intervention fear, I choose it because fear comes as natural. Fear is the first emotion that every oncological patient experiences when they hear the oncological diagnostic. Fear, as I mentioned here, is something primordial, yes?

It has a history, it has a culture and ultimately it has a purpose. Fear is the only negative emotion out of all the emotions that a human person can experience. Fear was the first emotion that a person ever experienced in the history.

Moreover, fear led to this emotional troika, as I name it, anxiety, depression and suicide. That is the most dangerous issues for every oncological patient. If we, as psycho-oncologists or clinical psychologists, we are not working with a medical oncological team together, in a multidisciplinary team, this anxiety, depression and especially the suicide danger are increasing very, very much because of the fear.

The oncological patient, from psychological point of view, when he hears the fact that he has cancer, for him everything is lost. He enters in a new reality. It depends on him, in the first place, but it depends also on us to see or to create or to explain or to show or to prove how this new reality will look like.

The life for every oncological patient will never be the same. But the most important thing is that not only the patient life will be changed, but the life of his family, which represents the first line of defense in the fight with the cancer. The whole structure of a family with a cancer patient is changed.
So everything has to be and will be restructured, rethinking. As I mentioned before, fear of recurrence is a broad concept marked by a focus of emotions on latent symptoms related to cancer. Even though fear of recurrence is a broad concept, I have to mention the fact that it is a quite new concept on the psycho-oncological field.

It was developed in 2017 for the first time by Dr. Sophie Lebel, with whom I had the pleasure to have an interview. After she developed this concept, after, I guess, 4 or 5 years of studies, and it is in a permanent, let’s say, debate how we could improve this fear of recurrence. We can’t say in our, let’s say, in our daily patience or daily counseling, which patient will experience fear of recurrence or which not.

Which patient will experience an increased fear of recurrence or which patient will not experience at all. We can’t say how much this fear of recurrence will impact the future trajectory of cancer patients, the treatment of cancer patients. But for sure, this fear of recurrence will remain for the patient as long as he will live.

So the official definitions, as Dr. Sophie Lebel mentioned, is fear of cancer recurrence is defined as a fear, worry, or concern that cancer will come back or progress. I want to accentuate not the fear, but the other two words, worry and concern. So fear of recurrence, it’s fear, it’s worry, it’s concern that cancer will come back or progress in the same organ or in other organ or in other types of cancers.

Fear, as I mentioned before, it’s a natural emotion, but worry and concern, it depends on every oncological patient. Worry, it is very important to mention this. Worry, it’s the biggest challenge and the biggest threat for every oncological patient.

Why? Because worry, it’s something in the future with a probability or possibility that might happen, but in 90% of the cases, it will not happen. So the oncological patient is already worried about something that it will never happen.

There are cases, and Dr. Sophie Lebel presented very nice to a patient that she was thinking so much, worried about the cancer recurrence so much, that she almost reactivated her own cancer only by the power of emotion. She was so worried, she was thinking all the time that the cancer is there, the cancer is there, even though after the first session of chemotherapy, the cancer wasn’t there. But she was convinced that she will have again that cancer.

It depends on every oncological patient to understand that fear, it’s a normal emotion, but worry and concern, it depends on every patient point of view. This is an image just to simplify the definition. Yes, we have feelings after the oncological diagnosis, which create our thoughts, which create our behaviors and so on and so forth.
We see that feelings and thoughts create our behavior, how we think, how we feel. Of course, an oncological patient is not rational. This is a fact, we all agree with this.

He lives in another reality, but our job as psychoncologists is just that, to help the patient live in the quotidian reality, not a parallel reality or another reality. Therefore, we have to reduce this fear, in our case of recurrence, but also the fear of progression. So, their thoughts to be positive and in this way to affect their behavior, to continue the treatment, the medical treatment and for the body to accept the treatment.

Because if you are so frightened that cancer will never live or cancer will progress, the body will accept very, very hard the medical treatment. And there were cases where patients didn’t follow the medical treatment, the chemotherapy, the radiotherapy, because of the fear that they were doing for nothing this treatment. There are some issues in the specialty literature that I want to mention here, that sometimes create confusion.

Fear of recurrence versus fear of progression. Even though the two terms recurrence and progression might look different, we are talking about progressions as fear of recurrence. There are not or not till now evidence that an oncological patient, when he experiences fear of recurrence, can make a difference between recurrence or progression.

For him is the same, because the fear, it’s so powerful that he can’t make this difference. If you ask him, why are you afraid of recurrence or progression of your cancer, he can’t answer. He just said, I’m afraid of the cancer.
So, for the moment, they are not two different concepts. We are talking about one concept, which is fear of recurrence, which includes this fear of progression. As I mentioned before, fear versus worry.

It is okay to be fear, it is a normal emotion, but worry is something else. Worry is something that oncological patient creates with his power or her power of mind. And not the least, what is the most important for you in this moment?
This is a question that I always ask patients. Why? Because they are asking me, how other patients in my situation succeed to overcome this fear of recurrence or to overcome the cancer.

And I always ask them, think what is the most important for you in this moment. And more than almost 100% said, I want to be cancer free. So, if you want to be cancer free, let’s work together, let worry apart and just concentrate on the fear and start build the hope.
Because the hope is the opposite of the fear. The hope, it is that emotion, the concepts, however you want to mention it. Hope is the only thing that keep motivates the every oncological patients.

Here is a picture of the challenges of returning to a normal life, a normal life on our reality. Yes, a normal life as we can define it on nowadays for example. And we see that 8 persons out of 10 experienced physical difficulties, included cancer related fatigue.
7 out of 10 people reported emotional concern, including fear of cancer recurrence. And 4 out of 10 said that they have practical difficulties in returning to work. Not in the end, I want to mention the factors, the most important factors associated with fear of recurrence.

The first one and the most important, it’s age. If we are talking about adolescence and young adults, the fear is not so increased. But if we are talking about elderly people or let’s say a parent that has cancer at home, children are waiting for him, the fear is very, very increased.

Another important factor is socio-economic. The majority of oncological patients, as we know, can’t afford an oncological treatment. Therefore, this fear of recurrence, it is very increased for them.
Because I know many cases when patients overcome a type of cancer, but on the second cancer, they can’t afford to do the treatment. So this fear of recurrence was very, very high. Another factor is anxiety.

All which is related to do radiotherapy, to do CT, to do whatever the medical treatment means. Level of education, not in the way of educated or non-educated people, but the access of psycho-education. If we have a psycho-oncological education in every community, the level of fear of recurrence for sure will decrease.
But since there are countries, regions that can’t have cancer care access for their citizens, this level of fear of cancer recurrence is high again. The general of the patient, women in general, experience a fear of recurrence much more accentuated than the men. And not at the least somatic factors.

And now there are two very, very important cancer-related fatigue and insomnia. Because we can’t rest as cancer patients, we can’t sleep, our mind is full of worries. So this fear of recurrence is increased by these worries.
So these are the most important factors that make our fear being so hard to deal with, to overcome it. And instead of conclusion, to conclude my presentation for today, fear comes as natural, but hope is learned. We have to learn hope, we have to help cancer patients learn how to cope with hope, and in this way we can, we can overcome fear of cancer recurrence.

We can’t make it disappear, because fear of cancer recurrence will follow every oncological patient for the rest of his life or her life. But we can control it, we can manage it. How?
With hope. Thank you very much for your attention.