For Mia, the diagnosis became a drive to make care better

Fourteen. That’s how many times, Mia Rajalin visited primary care before she received the chest X-ray that showed the tumor. And the X-ray referral was sent with hesitation – she was too young and had never smoked a cigarette.

Photographer Petra Kyllerman

The diagnosis became drive and commitment. Mia  wants to work so that no one else suffers from what she, and many others, have gone through. To not receive a diagnos in primary care even though you yourself suspect that you are sick. Mia’s 14 visits occurred over a period of one and a half years. One difficulty in detecting lung cancer, which Mia was diagnosed with, is that the first symptoms are so common. Cough, fatigue, pain. However, visiting primary care so often in such a short period of time, that is not common. 
– I felt dismissed many times. Before this, I had hardly ever sought medical attention.

The whole society would benefit from early detection. People of working age can continue to work, loved ones feel good, children do not have to undergo the trauma of losing a parent to cancer.

Mia believes that there is an acceptance of the low proportion of lung cancer cases detected in stage one and two. You’ve gotten used to it, you see it as a silent cancer. Most often, the care system detects the cancer in stage four when it is not curable. But patients report symptoms long before they are diagnosed.  Many lives can be saved, and early detection would also have other positive effects.
– ­The whole society would benefit from it. People of working age can continue to work, loved ones feel good, children do not have to undergo the trauma of losing a parent to cancer. And the cost of care of course – the new treatments are good, but expensive. If it is possible to operate more in stage one and two, that would be half the cost.

Artificial intelligence could detect whether a patient has sought care several times in a short time. It can help to see changes in the visiting pattern, where the various symptoms altogether can point towards cancer.

At the same time, Mia points out that shortcomings are in the structure and not in competence. To only get 10 minutes per patient, not have time to read medical records, learn that smoking is the only cause. Then, of course, cancer cannot be the first suspicion when a patient comes in and is tired. What is needed is supportive tools. She lists examples used by other countries. As risk assessment tools, screening, and symptom checkers.
– ­It’s pretty simple stuff, which would go pretty quick to put in. I myself filled out a symptom checker  with all the symptoms I had before the diagnosis. The result was that it is something, and it could be these diseases. Lung cancer was on that list.
Mia also talks about the possibilities of digital tools.
– For example, artificial intelligence could detect whether a patient has sought care several times in a short time. It can help to see changes in the visiting pattern, where the various symptoms altogether can point towards cancer.

Vision Zero Cancer can work cross-border and convey conversations without anything being sensitive, where the common goal is what matters. They have a unique position as a spider in the web.

Two of Mia’s engagements are the Lung Cancer Association and Vision Zero Cancer, where she is part of the core team as a patient representative.
– I have a foot in both worlds because I myself work in health care. I can understand the problems of care but also see that the patient’s needs have to be better met. It should not take 14 visits before the detection of lung cancer.  Healthcare needs to be given more time with the patient and systemic support support.

She sees one of the benefits of Vision Zero Cancer as being a neutral forum.
– Vision Zero Cancer can work cross-border and convey conversations without anything being sensitive, where the common goal is what matters. They have a unique position as a spider in the web. They can make sure it’s a collaboration. Because that is what it needs to be.

How do we detect cancer earlier?

The earlier cancer is detected, the greater are the chances of survival. With new systems and knowledge, we can pick up on symptoms earlier and more quickly come to treatment. And get better chances to reach vision zero.

Early Detection and Diagnosis
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“Sweden has to be braver if lung cancer is to be detected early”

The Lung Cancer Association wants to change lung cancer care. Especially in the case of early detection, where many other countries have already introduced tools and methods to support healthcare.  But in Sweden it takes too long, says Karin Liljelund, the association’s vice chairman. And lung cancer does not wait.

Porträtt på Karin Liljelund, vice ordförande i lungcancerföreningen

Karin was diagnosed seven years ago. She went with cough until her children made her go to the medical center. She was lucky to have a doctor who reacted immediately. It turned out that she had a 9 centimeter long tumor in her lung and metastases in her back and legs. The fight against the disease has taken several turns with various medications and treatments. She has chosen to try to make something good out of it. Among other things, by getting involved in the Lung Cancer Association. Their activities range from meeting over a coffee to  support by phone to advocacy. In the advocacy work, there is a lot of focus on early detection.
– 55% of all lung cancers are detected in stage 4 in Sweden. Then it cannot be cured, and the survival rate is 12%. It is a very poor forecast. Early detection is thus incredibly important.

The worst thing that can happen is that it continues to be as it is today. 

Most people who get lung cancer are up to 60 years old. 85% of them are smokers, but today more and more young people who have never smoked are diagnosed with the disease. Here, the development of risk assessment tools can help with early detection. Today, patients are entering specialist care far too late. Research projects take four to five years of discussions before anything happens. Unrelated activities must be carried out in Sweden. Soon.
– Healthcare must dare to try different tools and methods. In Sweden there is a fear of not getting things right and making mistakes. But this is not about making surgical procedures wrong, these are tools for early detection. Tools that can be improved and adjusted gradually. The worst thing that can happen is that it continues to be as it is today. 

A lot of hope of change lies on Vision Zero cancer, that they can catalyze processes that otherwise take too long. The Lung Cancer Association and Zero Vision Cancer share the focus, also in areas other than early detection. Karin welcomes the competence and will of the innovation milieu.
– Vision Zero cancer can work both with long-term research and innovation projects and with quick solutions. And they also think that it is important that things happen, that there will be results. I look forward and hope for it. That we are not sitting here two years later and still just waiting for something to happen. We need to be able to tick off on the To-Do list– now we have done this.

Lung cancer is not the same as death sentence today. It is also important to spread the message of hope.

To detect lung cancer early, Karin believes that it is important to provide information to the public. Young and older – everyone can get lung cancer. You can be an elite athlete who has never smoked but still get sick. If you have had symptoms for a time such as coughing, fatigue and headaches, you must seek care. But there is also a need to inform the public that lung cancer can be cured.
– An incredible amount has happened on the treatment side in recent years. Lung cancer is not the same as death sentence today. It is also important to spread the message of hope.

How do we detect cancer earlier?

The earlier cancer is detected, the greater the chances of survival. With new systems and knowledge, we can catch up on symptoms earlier and more quickly come to treatment. And get more chances to reach vision zero.

Early Detection and Diagnosis
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Why we start with lung cancer

Lung cancer is one of the cancers where the fewest patients survive. In Sweden, every year, nearly 4,000 people are diagnosed. Almost as many die. Therefore, innovations in cancer control can make a big difference.

Porträtt på Suzanne Håkansson, AstraZeneca

– It is possible to save many lives, says Suzanne Håkansson from AstraZeneca, who is part of the core team for the recently established Swedish innovation milieu Vision Zero Cancer. So we have chosen to focus on lung cancer the first two years, and hope that we can learn a lot.  Which we can then apply to other diseases and cancers.

Suzanne hopes that Vision Zero Cancer within those years has been involved in actions that are solving both minor and larger problems. That the innovation milieu has contributed to a national level of ambition and national cooperation; and of course, created results for the patients.

It is possible to save many lives.

Only 20% of patients diagnosed with the most common form of lung cancer live after five years. The diagnosis often comes too late.

–Lung cancer is often detected as metastases in the brain, in stage four. Before that, the cancer may look like migraines, fatigue, depression. We need to identify the symptoms earlier and faster. That way we can save many lives.

Only 20% of patients diagnosed with the most common form of lung cancer live after five years. The diagnosis often comes too late.
– Lung cancer is often detected as metastases in the brain, in stage four. Before that, the cancer may look like migraines, fatigue, depression. We need to identify the symptoms earlier and faster. That way we can save many lives.

Diagnosis could be faster through screening, or new ways of analyzing the symptoms. However, the most effective way to get fewer people to die from lung cancer is to work proactively – tobacco smoking is behind a large proportion of cases. But everyone already knows it is dangerous to smoke. The cigarettes give something else. Comfort, reward, something to do. You choose to enjoy now and suffer later. Suzanne thinks we need to look more at behavior science.
– How people view risk in the short and long term, where we can learn from other industries. Like retirement savings and insurance. How do they work there?

How people view risk in the short and long term, where we can learn from other industries. Like retirement savings and insurance. How do they work there?

Nollvision Cancer is based on different professions and actors working together for a common vision. That no one should have to die of cancer. Everyone should contribute with their skills and perspectives to find solutions that give the best results for patients, relatives and society. Companies working for early detection. AI that detects symptoms. Technology companies looking to innovate rehabilitation and survivorship.
– It is by talking to each other that we find the medical advances. There are many professions involved in cancer care, all of which play a major role for patients. Collaboration is key. No single actor can do this.

A lot of cancer is preventable

A third of all cancer depend on living habits. This means that one third of all cancers are preventable. And if fewer people get sick, we reduce people’s suffering, increase public health and save society’s resources. The only question is how.

Prevention
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How do we detect cancer earlier?

The earlier cancer is detected, the greater the chances of survival. With new systems and knowledge, we can catch up on symptoms earlier and more quickly come to treatment.

Early Detection and Diagnosis
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Vision Zero Cancer brings together actors to improve care

With national cancer care programs, standardized care processes and accessibility initiatives, cancer control in Sweden has come a long way in recent years. Now the focus will be on research and innovation. Among other things, through Vision Zero Cancer.

Porträtt på Hans Hägglund, nationell cancersamordnare

Nollvision cancer ska vara en visionsdriven innovationsmiljö. Men vad innebär det? Hans Hägglund, projektledare, berättar:

Vision Zero Cancer should be a vision-driven innovation milieu. But what does that mean? Professor Dr. Hans Hägglund, National Cancer Coordinator and chairman of Vision Zero Cancer, says:
– Vision Zero Cancer should be platform for integrating research and innovation into healthcare. We want to move from today’s isolated initiatives to greater cooperation, all actors driven by the same vision – to turn cancer into a curable or chronic disease. Together we can create even greater benefit for patients and society.

We want to move from today’s isolated initiatives to greater cooperation, all actors driven by the same vision – to turn cancer into a curable or chronic disease.

Hans Hägglund describes Vision Zero Cancer as a catalyst, where patient, care, academia, industry, and politics come closer together. The innovation milieu wants to sharpen collaboration, not create a parallel system.
– For example, we can bring together projects that are not synchronized, focus on the issue, or fund good ideas and solutions that have not been tested or discussed before.

While it is about getting closer together, Hans looks far ahead. Nationally and internationally. One of Vision Zero Cancer’s goals is that Sweden will become a world leader in prevention, early detection, diagnostics, treatment, and organization for person-centered cancer management. Just as it is about medicines, gene therapy or better diagnostics, it can be about new work processes, registers, and ways of analyzing data. He talks about a system transformation, daring to challenge the existing one.
– Technological development has been rapid. We need to evaluate and reconsider whether the organisational systems that exist are up to date today.

A slightly shorter view ahead is Vision Zero Cancer’s own organization.  Cancer is a tough issue, and it is important to keep up the energy.
– That we keep the passion for system transformation and continue to be engaged. But also to make sure that interest in us does not cool down. We want more actors to join the milieu, and that we get enough funding to continue to innovate care.

It is an issue that should come early – what goals the patient has with life. So that it becomes a meaningful life after a tough treatment.

That no one should get sick with cancer is not so likely. But that no one should have to die of cancer, Hans Hägglund thinks it is attainable. However, this makes one issue even more apparent. To what life do we save the patients?
– The focus has been on treating the patient in the best way and then following up that the patient does not return. Now it becomes all the more important – to return to work, have a social life, eat, drink and feel good. It is an issue that should come early – what goals the patient has with life. So that it becomes a meaningful life after a tough treatment.

This is Vision Zero Cancer

Vision Zero Cancer challenges the prevailing ecosystem and connects new ones. We want to engage the whole community, from the healthy citizen to healthcare, academia, industry, and policy, to benefit patients all over the world.

Who we are
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No one should have to die from cancer

Vision Zero is the long-term goal that no one should die because of cancer. It’s a tough goal, so we have set some milestones and objectives.

How to reach vision zero
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