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Better Support for Long-Term Symptoms is Needed to Help Patients Live Life After Cancer [ESMO Congress 2021 Press Release]

18 Sep 2021

LUGANO, Switzerland - Previous standards of cancer follow-up care and support may no longer meet current needs as improvements in screening practices, early diagnosis and treatment of cancer have put long-term survival beyond five years following diagnosis within reach for more than half of patients in Europe. (1) While beating cancer should be followed by a return to normal life, the side-effects of anticancer medicines and impacts of the illness itself that sometimes persist after the end of treatment can hinder this process. Confirming the need for new approaches to cancer survivorship, a study (2) [to be] presented at the ESMO Congress 2021 shows that a significant proportion of survivors continue to suffer from burdensome symptoms for several years and reveal widespread dissatisfaction with the assistance received.

Prof. Dorothy Keefe, CEO of Australia’s national cancer agency, Cancer Australia, chair of the congress’s supportive and palliative care track, not involved in the study, underlined its importance in a context where survivorship research has lagged behind research on cancer treatment. “This is probably due to the increase in survival rates itself lagging behind the introduction of new therapies, but also to a lack of prioritisation compared to the need to develop a cure,” Keefe said, and highlighted the scale of the issue today: “We now have millions of cancer survivors in Australia, hundreds of millions around the world – and an ever-increasing number who could potentially have long-term side-effects.”

One of the most common symptoms experienced by patients and survivors alike is cancer-related fatigue (CRF), a persistent sense of exhaustion that is not alleviated by sleep or rest and that interferes significantly with the person’s usual functioning. The FiX study initially evaluated the patterns, severity (3) and management (4) of CRF among 2,508 patients with 15 different types of cancer two years after the discovery of their illness. In a follow-up survey about 36 potential long-term problems, completed by participants around four years after diagnosis, almost 40% of survivors continued to report fatigue that they rated as a moderate or severe burden. In addition to fatigue, more than 40% of patients reported being at least moderately burdened by loss of physical capacity and over one third suffered from trouble sleeping, sexual problems, joint pains and anxiety.


Although recommendations exist on managing side-effects like CRF, including ESMO Clinical Practice Guidelines for its diagnosis and treatment, (5) study author Dr. Martina Schmidt from the German Cancer Research Centre (DKFZ) in Heidelberg, Germany, underlined that their implementation is still lacking and reported that more than one in three affected individuals in the study evaluated the support they were offered for fatigue as poor. “Despite increasing awareness of the effectiveness of mitigating measures like exercise to reduce fatigue, patients are still too often left alone to seek help for symptoms that cannot be directly addressed with medicines in the same way as something like pain, for which satisfaction with the support received was high in our study.” 

Commenting on the results, Keefe observed: “This research shows that a staggeringly high number of patients still suffer from significant health issues years after being declared disease-free. Their dissatisfaction with the care available is a wake-up call that we should be paying more attention to these individuals, trying to understand the mechanisms at play in order to identify interventions that could help them to better recover.”

According to Schmidt, cancer follow-up care should therefore no longer focus only on the immediate side-effects of treatment and on the detection of metastases or recurrence of the cancer, but also incorporate more systematic screening for additional symptoms that can burden patients. “The first step should be to make sure that patients themselves are better informed about these potential issues early on, so they know that conditions like CRF are not only expected, but often manageable and that they should not wait for symptoms to disappear on their own,” she said.

Recognising that possible models of long-term support remain largely untested, Keefe further advocated that all patients should be provided with a survivorship care plan when they reach the end of their treatment. “Going forward, we need to develop these models of care in a way that minimises the burden on healthcare systems, implement them and research their impact so that we can come back in five years’ time and evaluate whether they have made a difference for cancer survivors,” she concluded.

Notes to Editors

Please make sure to use the official name of the meeting in your reports: ESMO Congress 2021

Official Congress Hashtag:  #ESMO21


This press release contains information provided by the author of the highlighted abstract and reflects the content of this abstract. It does not necessarily reflect the views or opinions of ESMO who cannot be held responsible for the accuracy of the data. Commentators quoted in the press release are required to comply with the ESMO Declaration of Interests policy and the ESMO Code of Conduct.


  1. Source: European Cancer Information System
  2. Abstract 1669O_PR ‘Late effects, long-term problems and unmet needs of cancer survivors‘ will be presented by Martina Schmidt during the Proffered Paper Session on Tuesday 21 September, 13:30 to 14:50 (CEST) on Channel 4. Annals of Oncology, Volume 32, 2021 Supplement 5
  3. M. E. Schmidt, S. Hermann, V. Arndt and K. Steindorf. Prevalence and severity of long-term physical, emotional, and cognitive fatigue across 15 different cancer entities. https://doi.org/10.1002/cam4.3413
  4. M. E. Schmidt, S. Bergbold, S. Hermann and K. Steindorf. Knowledge, perceptions and management of cancer-related fatigue: the patients’ perspective. https://doi.org/10.1007/s00520-020-05686-5
  5. A. Fabi, R. Bhargava, S. Fatigoni, M. Guglielmo, M. Horneber, F. Roila, J. Weis, K. Jordan and C.I. Ripamonti. Cancer-related fatigue: ESMO Clinical Practice Guidelines for diagnosis and treatment. https://doi.org/10.1016/j.annonc.2020.02.016

M.E. Schmidt1, S. Hermann2, K. Steindorf1 

1Division Of Physical Activity, Prevention And Cancer, DKFZ - German Cancer Research Center, Heidelberg, Germany, 2Epidemiological Cancer Registry Baden-Württemberg, DKFZ - German Cancer Research Center, Heidelberg, Germany  

Background: Great efforts and impressive progresses are being made in tumor treatment. Research and care concerning long-term problems and late effects of cancer in disease survivors is, however, still insufficient. 

Methods: The FiX study enrolled 2,508 patients across 15 different cancer entities around 2 years after diagnosis via an Epidemiological Cancer Registry in Germany, with the primary aim to assess pattern, severity, and impact of fatigue. A follow-up survey was conducted between 12/2020 and 04/2021. Using a list with 36 potential long-term problems or late effects, participants were asked how much these are/were a burden to them (no / little / moderate / significant / extreme burden), and, in case of burden, how they rate the received support for this problem (good / moderate / poor). 

Results: 1,874 participants (76%) completed the follow-up survey at a median (Q1, Q3) of 4.2 (3.8, 4.8) years after cancer diagnosis. This population had a mean (SD) age of 65.8 (11.2) years, and 49% were female. The most frequently reported problems rated with at least moderate burden were: loss of physical capacity (40.7%), fatigue (38.5%), sleep problems (36.6%), sexual problems (35.4%), arthralgia (33.4%), anxiety (33.2%), and neuropathy (28.9%). Cardiac disorders and osteoporosis burdened 15.6% and 11.9% of survivors, respectively. Extreme burden was most frequently rated for sexual problems (10.1%), mainly in men with prostate cancer. This was also the problem with the highest proportion of dissatisfaction with received support (44.7% of affected survivors rated support as poor). Support for fatigue was rated as poor by 37.7% and as good only by 29.5% of affected survivors. Support was also reported as poor for neuropathy (35.9%), cognitive problems (35.3%), weight gain (34.7%), or hot flashes/night sweats (33.7%). In contrast, support in case of pain was rated as good by a majority (51.3%). Determinants of the different burdens and of satisfaction with support have been identified. 

Conclusions: A significant number of cancer survivor suffer from long-term effects. Our study identified several groups with open needs for improvements in supportive care. 

Clinical trial identification: ClinicalTrials.gov: NCT03318224 

Legal entity responsible for the study: N/A  

Funding: Has not received any funding  

Disclosure: All authors have declared no conflicts of interest. 

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