Living with cancer after cancer (Guest Blog)

As a society, we are all responsible for comprehensive inclusion and return of cancer patients to normal life after their treatment is over. This was one of the key messages of the first virtual international cancer survivorship conference titled “Living With Cancer After Cancer”, held on 20 October 2021. The conference was co-hosted by the Forum of international research and development pharmaceutical companies, the Association of Slovenian Cancer Patients Organizations ONKO NET, the Medical Chamber of Slovenia, and the Simpozija Institute.

This is the first conference to be held in Slovenia about one of the most topical and also often overlooked subjects in integrated care for cancer patients - life with cancer after cancer. Why? Times when extending life was the sole objective of cancer treatment are slowly ending. Successful screening programs, improving diagnostics supported by molecular science, personalized treatment and numerous awareness-raising campaigns of patient organizations have had a massive impact on survival rates. Today more and more types of cancer can be classified as manageable chronic diseases. These advances have brought excellent results, but they have also opened many new questions concerning quality of life after the treatment is completed.

“20 years ago, we did not dare think we would ever hold a conference about life after cancer and survivorship. Just ten years ago only five percent of patients with malignant melanoma survived for more than five years after their diagnosis. Now the number is fifty percent, that is a tenfold increase! Today’s conference is proof of just how far we have come in oncology in the past decade,” noted Alexander Roediger, Chair of the Oncology Platform at the European Federation of Pharmaceutical Industries and Associations (EFPIA) in his opening address.

Bettina Ryll, EU Cancer Mission, President of the European Association of Melanoma Patients, noted that “all patients should first be provided with treatment tailored to their needs and then given the necessary assistance to enable them to return to normal life as much as possible. To achieve this, we should think about survivorship care and plan appropriately since the very beginning, when a person becomes ill, and not only after the medical treatment is completed.”

One of the main reasons for increased survivability and ever greater numbers of recovered patients or patients with successful long-term treatment has been rapid development of innovative medicines that work in tandem with molecular testing to provide increasingly personalized treatments. Inequalities in accessibility of such treatment were addressed by Panos Kanavos from the London School of Economics.

Some of the most pressing issues mentioned by speakers at the conference included those associated with returning to work and employment, financial difficulties for those that were forced to retire partially or fully due to disability, difficulties in obtaining loans and life insurance, social inclusion or exclusion, fear of disease recurrence, the issue of progeny, late consequences of cancer, cancer in young persons, especially hereditary forms, as well as the issue of the so-called right to be forgotten. The simplest definition of this right is that people who recover from cancer have the right to forget their past and no longer need to tell anyone that they had cancer in the past, said Joke Verbaan from the Dutch insurance company De Hoop.  

Barbara Wilson, Founder and Director of Working with Cancer, reflected on the difficulties that patients confront when trying to get back to work particularly with their employers who often do not understand what legal commitments they have, there is a lot of inequality in the workplace. Kristine Soerensen from Global Health Literacy Academy stressed the importance of health literacy for all patients, oncological ones in particular, and pointed out that oncology health literacy means that we know how to find information relevant to our treatment and health, financial, insurance, and legal information included.

The issue of cancer is common to the entire EU area. Patients experience very similar issues before the diagnosis and during and after treatment, so we need common and coordinated political action to improve the current state.

“Cancer was once a binary disease, meaning that patients either overcame it due to a sufficiently early diagnosis, or died soon after the diagnosis, especially in cases where cancer was discovered in a late stage. Today the situation is much more varied, and we have more patient categories. There are also those whose cancer was found in a late stage, but the disease can still be managed and transformed into a chronic condition - a solution that only years ago was simply impossible. And then there are those that require supportive treatment and care with all the dignity they deserve. We should know that it is not all just about survival, even though it is the ultimate goal and what we are most proud of. It is equally important to assure that all patients continue to thrive in the future,” concluded Doc. Dr. Tit Albreht from the National Institute of Public Health and head of Joint Action iPAAC and Program Manager of the Life With Cancer after Cancer Conference.

You can watch the recording of the conference here.