There is no such thing as cancer

It's ten years ago that I was diagnosed with metastatic colorectal cancer. We are ten years later now, and I am in perfect health. I do everything today that I did before I got cancer. In this respect I am extremely grateful to the medical team that treated me, the oncologists, surgeon, nurses and other staff. I am grateful to the pharmaceutical and medtech companies that provided the technology to do so. I am grateful to be living in a country with universal healthcare and with solid reimbursement: my whole treatment cost around €70,000 and I think I paid €0 myself.

Nevertheless, I am also very critical of the system: many things can be improved and should be improved. Screening programmes should improve, cancer care should be concentrated in Comprehensive Cancer Care centres, the outcomes of patients should be more systematically captured, and plans for each type of cancer should be developed. The whole perspective of cancer care is still very much the perspective of the medical teams, and almost never the perspective of the patient. It's all about performance, about input, about money for interventions. It is hardly ever about outcomes, quality of life, subjective well-being, outcomes improvements, etc. Anyone active in the system, should be open to accept feedback from patients, and from the family of deceased patients to fully understand what is happening and what needs to be done more and better.

To give one exampe: there is no such thing as cancer. Many governments have "a cancer plan", that deals with some common elements to prevent several types of cancer. There are some commonalities here: lifestyle, smoking, drinking, exposure to carcinogenics. Suggestions which are equally recommendable to avoid diabetes, obesity, cardiovascular diseases and many more. A real plan is disease-specific. We need a plan for lymphoma, for breast cancer, prostate cancer, leukemia, lung cancer, colorectal cancer, pancreatic cancer, etc. Many of these cancers are not the result of lifestyle choices. Many of these cancers require completely different detection systems, diagnostics, types of treatment, follow-up, support, integrative care, etc. People who advocate for "a cancer plan" sound to me like people who would claim that we do not need a Covid-19 plan, because we already have an 'infectious disease' plan which also covers HIV/AIDS, hepatitis C, and flu. To develop a "cancer plan" give some comfort to the policy-makers who designed it: you think you have achieved something for all patients with cancer, when in fact you have not achieved anything. From a patient perspective, cancer does not exist. It's too abstract a word to make it workable, practical, applicable.

Patients with childhood leukemia have totally different challenges than older men with prostate cancer. The approach, the support, the consequences, the life impact are totally different. We typically have one type of cancer: that is our perspective. As long as health policy is not designed with this level of granularity, we will not move forward or make progress. And many changes can be made. We once calculated with Digestive Cancers Europe that if all Europeans were treated in the best hospital in Europe, 120,000 colorectal cancer patients would be kept alive annually, without any new technology, just as a result of the better organisation of current care. That is the challenge: how do we truly understand what matters to patients, what will increase adherence, what will integrate mental, social, physical care to achieve the best possible results, which data do we need to identify the best practices, the best hospital, the best care and follow-up?

Our suggestion is simple:

1. Co-design a plan for each type of cancer in which the perspectives of the medical community and the patient community are integrated

2. An observatory consisting of representatives of the medical and patient community will supervise the work

3. Co-determine a set of key performance indicators that will form a dashboard that will be evaluated annually to course-correct the plan

4. Within the plan, identify the new techniques and tools that you will integrate to improve care, such as "shared decision-making models", information checklists, best practices, collaborations with patient organisations, personal follow-up and patient support, patient navigation, exit interviews, patient panels, patient surveys, and every initiative that will help to have real-time feedback about complications, incidents, quality of life, and outcomes, performance data by hospital, etc.

This is no rocket science. It is common sense. It is a collaborative effort that is based on systems-thinking. How to get the best possible outcome for as many people as possible with reasonable efforts? How do we divide tasks and finance this? This can only be achieved in an open and constructive environment when all stakeholders are willing to discuss with more openness and willingness.

Here is my question for World Cancer Day to all politicians: if cancer is so important to you, why don't we have concrete co-designed plans for each and every type of cancer? With statistics and targets at every step of the patient pathway? With a list of best practices and changes we need to implement? Is this too difficult? Too specific? Too complex?