Cancer survivorship goes beyond successful medical treatment, patients say

While the number of cancer survivors in the EU increasing due to medical advances, patient organisations have highlighted the need to better incorporate financial and psychosocial aspects when addressing quality of life.

The European Cancer Organisation estimates that there are 20 million people living after a cancer diagnosis in Europe – a number set to increase due to advances in early diagnosis and innovative new treatments.

While this is good news and celebrated by stakeholders, patients and lawmakers, it also opens a new working field: how to ensure the best quality of life possible for patients who have finished treatment or face long-term care needs. 

Françoise Meunier, founder of the European Initiative on Ending Discrimination against Cancer Survivors, highlighted these new challenges that increasing survivorship brings to the table during the European Cancer Summit (15-16 November).

“Today, it is no longer a death sentence, thanks to all the progress that we have made. But this gives us some responsibilities,” she explained, adding that sometimes healthcare professionals overlook the long-term effects and discrimination, lacking awareness about the problem and not giving the patients enough information.

Stakeholders highlighted during the discussion that contrary to the common idea of “survival” and assumptions that life just goes on after finishing treatment, the reality is far from that. 

“It is important to let people know that it’s not that easy sometimes either, to be a cancer survivor, because you still have it in your mind. It’s not only a physical disease or diagnosis,” Penilla Gunther, member of the EU Cancer Mission Board and former cancer patient, explained to Euractiv.

Financial barriers for cancer patients

During the discussion, patients who had, or currently have, cancer explained the financial hit of a diagnosis. Some are forced to leave their jobs for a long period of time, while some continue in informal care roles, or face new expenses related to their health situation. 

“You want to focus on your treatment, but you can’t focus on your treatment because you also have financial issues,” said Charles La Haye, founder of Sterk en Positief, a foundation raising money for brain cancer investigation and a cancer patient himself. 

Gunther also agreed that financial issues are one of the main barriers cancer patients face during and after treatment. 

“Sometimes people around you think that you will feel well immediately after your last treatment and it’s not the case,” she explained. She added that most people need time to adjust to their new situation, recover and get a new mindset which can lead to longer work absences. 

She explained that being a single mother of two small children at the time of her diagnosis, she could only work part-time during the treatment which led to financial stress.  

The financial issues derived from the cancer diagnoses are sometimes aggravated by difficulties in accessing financial services like insurance or mortgages, years after successfully completing treatment. 

La Haye stressed during his intervention that despite having finished treatment, “I’m not a survivor, I’m still a patient. At least I am if you look at insurance companies”.

Despite efforts by the EU Institutions to introduce the right to be forgotten in all member states only seven countries explicitly recognise it: France, Belgium, Luxembourg, the Netherlands, Portugal, Romania, and  Spain. 

The right to be forgotten aims to end the barriers cancer patients face after certain years have passed since finishing treatment, which also varies from country to country. 

In Belgium, Luxembourg, the Netherlands and, Portugal, it is ten years, while in Romania it is seven and in France and Spain five. 

Implementing this right by law in every country will mean that banks and insurance companies won’t be able to make any differentiation for former oncological patients when contracting financial services and it will not be obligatory to disclose previous cancer diagnoses. 

Need for psychosocial support

Gunther explained that experiencing a difficult financial situation has further consequences than economic ones. 

“It is really a hurdle for people that they get so stressed over their personal economic situation it affects their health,” she explained. 

“I don’t think that anyone can feel any better if they are stressed about rent or about having to buy new clothes for their children and seeing that they cannot afford it properly,” she added. 

During the discussion, they all agreed that another big unmet need is for psychosocial support both for the patients and their caregivers. 

Carina Schneider, managing director of Childhood Cancer International Europe and former cancer patient, explained that during her treatment the thing that kept her going was listening to the people who told her that everything was going to be fine again, “then I noticed that is not the case”. 

“From the external, you get the impression that I should be so happy I’m alive. So I shouldn’t complain about the things that are different, about the things that are not working,” she added. 

Schneider explained that she later found support in a patient group that made her realise more people were feeling the same way. 

Gunther stressed the need for psychological support for caregivers and the close environment of cancer patients. She explained that it is very difficult to continue with a normal life “when you don’t know how it will go. Will your partner, mom or sister die?”. 

[Edited by Nathalie Weatherald]

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