Barcelona, SPAIN — Up to 13% of cancer survivors experience moderate-to-severe fear of their disease recurring, regardless of their prognosis or time since diagnosis, a new study shows.
The results, presented here at the European Society for Radiotherapy and Oncology (ESTRO) 3rd Forum, come from the CAESAR study, conducted in more than 6000 long-term survivors.
The findings point to a need for psychological support for cancer survivors, especially women, as well as individuals who are socially isolated or aged under 60 years, all of whom face triple the risk for severe fear of recurrence (FoR) compared with other cancer survivors, said study investigator Lena Koch-Gallenkamp, (Dipl-Psych), from the German Cancer Research Center in Heidelberg, Germany.
"It is very important to understand that fear of recurrence is not comparable to anxiety disorders," Dr Koch-Gallenkamp told Medscape Medical News. "It is not necessarily an irrational fear, but a response to a real threat, a life-threatening disease. So people experiencing these fears should be taken seriously, no matter how long ago their diagnosis, how good their prognosis, or how they seem to be doing health-wise."
The study was a cross-sectional analysis of data from 6057 cancer survivors from six different German population-based cancer registries.
These subjects had been diagnosed with cancer between 1994 and 2004, and at the time of the study were a mean of 8 years after diagnosis. Most of them were older at the time of diagnosis (70% were aged 65 years or older), and were diagnosed with either breast (44%), colorectal (20%), or prostate cancer (36%).
About half of the subjects (52%) were female, and 47% had more than 10 years of education.
While moderate-to-severe FoR, assessed using the short form Fear of Progression Questionnaire (FoP-Q-SF), was prevalent in 13% of the entire cohort, prevalence varied among different groups.
"It seems like breast cancer survivors are experiencing higher levels of fear of recurrence than colorectal or prostate cancer survivors," said Dr Koch-Gallenkamp, showing a 17% prevalence of moderate-to-severe FoR in breast cancer survivors compared with a 12% and 8% prevalence in colorectal and prostate survivors.
Multivariate analysis showed these differences were not related to cancer type per se, but rather to gender, with female patients experiencing more FoR than males (odds ratio [OR], 3.49; P = .002). Indeed, among colorectal survivors, 18% of women experienced moderate-to-severe FoR compared with 8% of men.
Age younger than 55 years was also a risk factor for FoR (OR, 3.32; P < .0001) as was age 55 to 60 years (OR, 2.70; P = .0002), she added.
Other risk factors included education of less than 10 years (OR, 2.28; P < .0001), having suffered from a recurrence or metastases (OR, 2.48; P < .0001), and being socially isolated (OR, 2.78; P < .0001).
"Most medical factors like cancer type, stage and time since diagnosis do not seem to influence fear of recurrence, while psychosocial and personal factors like age, sex and social support play a far bigger role," she said.
"So it's very important to keep in mind that not only the objective severity of the disease but also subjective representations may influence fear of recurrence," Dr Koch-Gallenkamp commented. "So just because you have a good prognosis doesn't mean you don't experience fear of recurrence."
She suggested that survivors at high risk for FoR should be monitored and offered extra support.
Approached by Medscape Medical News to comment on the study, Jimmie Holland, MD, Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering Cancer Center in New York, said it was "a welcome insight into how long term cancer survivors are coping today," and "a testament to the increasing numbers of cancer survivors and the new attention being given to their physical and mental health."
"The presence of severe fears in 13% of the population is small overall, but it suggests that some people are unable to function in their normal day to day life out of fear that the tumor will return, even though the likelihood is diminishing each year," she said. "Survivorship clinics in many cancer centers are increasingly routinely screening survivors for distress and referring them to mental health services as needed. Survivors' fears can be substantially reduced by counseling them in better ways to deal with the fears which everyone who has ever had cancer can attest to."
Although the study included survivors who were at least 5 years postdiagnosis, Dr Holland said the worst FoR may occur earlier. "The anxiety is enormous at times immediately following the finishing of treatment," she said. "We called it paradoxical anxiety — one would expect they would feel better but they fear the good medicine is stopped and the doctors won't be seeing them. They say 'I'm on my own now and I am scared to death.' Usually by five years, it is getting much better."
The study was funded by the German Cancer Agency. Dr Koch-Gallenkamp and Dr Holland have disclosed no relevant financial relationships.
European Society for Radiotherapy and Oncology (ESTRO) 3rd Forum. Abstract SP-0317. Presented April 26, 2015.
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Cite this: Fear of Recurrence Persists for Many Cancer Survivors - Medscape - Apr 29, 2015.