{"id":1141,"date":"2020-02-04T15:53:22","date_gmt":"2020-02-04T15:53:22","guid":{"rendered":"http:\/\/horizon.peachpuff-wolverine-566518.hostingersite.com\/?p=1141"},"modified":"2020-02-04T15:53:22","modified_gmt":"2020-02-04T15:53:22","slug":"treating-cancer-is-only-part-of-the-journey-the-overlooked-needs-of-cancer-survivors","status":"publish","type":"post","link":"https:\/\/scienceblog.com\/horizon\/1141\/treating-cancer-is-only-part-of-the-journey-the-overlooked-needs-of-cancer-survivors\/","title":{"rendered":"\u2018Treating cancer is only part of the journey\u2019: the overlooked needs of cancer survivors"},"content":{"rendered":"
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As more people live for years and even decades after being diagnosed with cancer, the question of how best to support survivors is a challenge now facing health systems in Europe. More research into survivors\u2019 specific care and support requirements is now needed, say experts.<\/strong><\/h3>\n<\/div>\n<\/div>\n<\/div>\n
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For many people, it is a word to be whispered in a hushed voice; others refuse to even mention \u2018cancer\u2019 at all due to the fear it evokes.<\/p>\n

And it is hard to blame them. An estimated\u00a01.9 million people die from cancer in Europe<\/a>\u00a0each year, accounting for around a fifth of all deaths in the region. Few people can say their lives have not been touched by the disease, either personally or through friends and family.<\/p>\n

But at the same time, mortality rates from cancer have\u00a0plummeted over the past five years<\/a>. Improved awareness, diagnosis and treatments are helping more people to survive and live longer. More than\u00a0five million deaths from cancer<\/a>\u00a0are estimated to have been avoided since 1989, and in 2018 alone, an estimated\u00a0392,300 cancer deaths were avoided<\/a>.<\/p>\n

But these falling death rates also mean a growing portion of the population are becoming cancer survivors, with their own unique needs and requirements. Exactly how to support and care for this growing group of people is still a greatly underexplored area.<\/p>\n

\u2018Four out of five of those diagnosed with childhood cancer will survive for more than five years after diagnosis,\u2019 said Professor Leontien Kremer, a paediatrician at the Princess M\u00e1xima Centre for Paediatric Oncology in Utrecht, the Netherlands.<\/p>\n

\u2018About 75% of those survivors will have one or more health problems, often due to the treatments they have received. They range from heart failure due to the chemotherapy they received, to secondary malignancies as a result of the radiotherapy.\u2019<\/p>\n

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\u2018They (cancer survivors) can have scars inside and outside the body that not only affect their health, but their confidence.’<\/p>\n

Anne Lise Ryel, Norwegian Cancer Society<\/p>\n<\/blockquote>\n<\/div>\n

Longer-term<\/strong><\/p>\n

These longer-term effects of cancer and its treatment are now a growing problem not just for survivors of childhood cancers but also adults as well. Aggressive chemotherapy and radiotherapy treatments can have long-lasting side effects, while surgery to remove cancers can also lead to chronic problems. Patients can also suffer from chronic fatigue along with mental health problems such as post-traumatic stress disorder and depression.<\/p>\n

\u2018Psychologically, cancer survivors don\u2019t look very different from the rest of the population, but certain sub-groups like brain tumour survivors can have more psychological problems,\u2019 said Prof. Kremer.<\/p>\n

Unlike older adults, children who survive cancer may have to live with these problems for many decades after being given the all clear from their disease. Currently, there are around\u00a0300,000 survivors of childhood and adolescent cancers<\/a>\u00a0living in Europe.<\/p>\n

Prof. Kremer says that many paediatric oncologists are focused on treating children and are less aware about the care that the children will need later when they become adults.<\/p>\n

\u2018We have identified nearly 80 different diseases that can affect survivors,’ she said. ‘They can\u00a0<\/strong>(for example) have fertility problems, intestinal problems.\u2019<\/p>\n

The kind of health problems that survivors can suffer from as they live for decades after being diagnosed with cancer are still to be fully understood. How treatment dosage affects fertility, for example, is poorly understood, as is how radiotherapy interacts with other treatments to damage organs.<\/p>\n

\u2018We also know some treatments for heart failure work in the general population, but we don\u2019t know how they work in children who have been treated for cancer,\u2019 said Prof. Kremer.<\/p>\n

Survivors<\/strong><\/p>\n

According to the World Cancer Research Fund<\/a>, many recommendations for the diet and lifestyle of cancer survivors are simply extrapolated from those for cancer prevention.<\/p>\n

This misses many of the specific needs that cancer survivors have, according to experts. The research on adult survivorship that does exist is primarily based on breast cancer survivors and may not be applicable to other cancers.<\/p>\n

Prof. Kremer is now leading an ongoing project called\u00a0PanCareFollowUp<\/a>, aimed at improving the care of young adults who have survived childhood cancer. Using guidelines that have been drawn up based on the experiences of groups\u00a0around the world, they are examining how to deliver personalised follow up care for young survivors.<\/p>\n

This includes not only working out what regular screening different survivors need, but also what other support they might require.<\/p>\n

In the Netherlands, for example, Prof. Kremer and her colleagues have been working with medical insurance companies to give cancer patients the \u2018right to be forgotten\u2019 if they have been free of the disease for a certain number of years, allowing them to get insurance again. France has already enshrined this right into law, followed by Belgium and Luxembourg last year. Cancer groups have also been calling for the European Parliament to grant similar rights in its other member states.<\/p>\n

\u2018It can also be difficult for patients to find work because they perhaps can\u2019t do a full week in an office,\u2019 added Prof. Kremer. The team has been researching ways patients can overcome these problems too.<\/p>\n

Support<\/strong><\/p>\n

Currently, there are big differences between countries within Europe on how much care cancer survivors receive. In some areas, stigmas and taboos around talking about cancer also prevent people from accessing all the support services they need.<\/p>\n

\u2018Cancer survivors may have changed in a number of ways as a result of their treatment and experience,\u2019 said Anne Lise Ryel, chief executive of the Norwegian Cancer Society and herself a breast cancer survivor. \u2018They can have scars inside and outside the body that not only affect their health, but their confidence. They might find it difficult in social situations or to flirt or to partner with someone because their body is not the same as it was before.\u2019<\/p>\n

Ms Ryel is now a member of the board for the\u00a0EU\u2019s mission on cancer<\/a>, which will identify an ambitious goal for the future of research under the Horizon Europe programme. She sees the gaps in research for cancer survivors as being a key part of what needs to be done.<\/p>\n

\u2018Most of the focus to date has been on treatment and prevention, but more and more people are living after cancer or for a long time with cancer,\u2019 she said. \u2018They want more research that can help them. In Norway we do a lot of work on survivors and their quality of life. Not everyone gets side effects, but our research shows one third of people cured of cancer or living with cancer get side effects. We need to understand why that is.\u2019<\/p>\n

She also believes that more work is needed into how to help the family and loved ones of cancer patients, and how they can help survivors after their treatment.<\/p>\n

\u2018Palliation is also an area where research is not so highly valued,\u2019 she added. \u2018Not everyone survives, so we need to know how to better help those who do not recover so they can have a better quality of life.\u2019<\/p>\n

The EU has already placed the needs of survivors as one of the key pillars of its\u00a0Beating Cancer Plan<\/a>\u00a0and has now launched a consultation aimed at identifying where research is needed most.<\/p>\n

\u2018Treating cancer is only part of the journey,\u2019 said Ms Ryel. \u2018We need to help those people who are on that journey navigate their lives in what has become a new normal for them.\u2019<\/p>\n

The research in this article was funded by the EU. If you liked this article, please consider sharing it on social media.<\/em><\/p>\n<\/div>\n<\/div>\n<\/div>\n","protected":false},"excerpt":{"rendered":"

As more people live for years and even decades after being diagnosed with cancer, the question of how best to support survivors is a challenge now facing health systems in Europe. More research into survivors\u2019 specific care and support requirements is now needed, say experts. For many people, it is a word to be whispered … Read more<\/a><\/p>\n","protected":false},"author":322,"featured_media":1142,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"generate_page_header":"","_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[12],"tags":[],"class_list":["post-1141","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-health"],"yoast_head":"\n\u2018Treating cancer is only part of the journey\u2019: the overlooked needs of cancer survivors - Horizon Magazine Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/scienceblog.com\/horizon\/1141\/treating-cancer-is-only-part-of-the-journey-the-overlooked-needs-of-cancer-survivors\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"\u2018Treating cancer is only part of the journey\u2019: the overlooked needs of cancer survivors\" \/>\n<meta property=\"og:description\" content=\"As more people live for years and even decades after being diagnosed with cancer, the question of how best to support survivors is a challenge now facing health systems in Europe. 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