One in three of us will develop cancer at some point in our lives. But survival rates have improved to the point that two-thirds of those diagnosed live more than five years.

This extraordinary shift over the past few decades introduces new challenges. A large and growing proportion of people diagnosed with cancer are living with it, rather than dying of it.

In our recently published research we examined the cancer experiences of 81 New Zealanders (23 Māori and 58 non-Māori).

We found survivorship not only entailed managing the disease, but also “wrangling” a complex health system.

Surviving disease or surviving the system

Our research focused on those who had lived longer than expected (four to 32 years since first diagnosis) with a life-limiting or terminal diagnosis of cancer.

Common to many survivors’ stories was the effort it took to wrangle the system or find others to advocate on their behalf, even to get a formal diagnosis and treatment.

By wrangling we refer to the practices required to traverse complex and sometimes unwelcoming systems. This is an often unnoticed but very real struggle that comes on top of managing the disease itself.

The common focus of the healthcare system is on symptoms, side effects of treatment and other biological aspects of cancer. But formal and informal care often falls by the wayside, despite being key to people’s everyday experiences.

The inequities of cancer survivorship are well known. Analyses show postcodes and socioeconomic status play a strong role in the prevalence of cancer and survival.

Less well known, but illustrated in our research, is that survival is also linked to people’s capacity to manage the entire healthcare system. That includes accessing a diagnosis or treatment, or identifying and accessing alternative treatments.

Survivorship is strongly related to material resources, social connections, and understandings of how the health system works and what is available. For instance, one participant who was contemplating travelling overseas to get surgery not available in New Zealand said:

We don’t trust the public system. So thankfully we had private health insurance […] But if we went overseas, health insurance only paid out to $30,000 and I think the surgery was going to be a couple of hundred thousand. I remember Dad saying and crying and just being like, I’ll sell my business […] we’ll all put in money. It was really amazing.

Assets of survivorship

In New Zealand, the government agency Pharmac determines which medications are subsidised. Yet many participants were advised by oncologists or others to “find ways” of taking costly, unsubsidised medicines.

This often meant finding tens of thousands of dollars with no guarantees. Some had the means, but for others it meant drawing on family savings, retirement funds or extending mortgages. This disproportionately favours those with access to assets and influences who survives.

But access to economic capital is only one advantage. People also have cultural resources – often described as cultural capital.

In one case, a participant realised a drug company was likely to apply to have a medicine approved. They asked their private oncologist to lobby on their behalf to obtain the drug through a compassionate access scheme, without having to pay for it.

Others gained community support through fundraising from clubs they belonged to. But some worried about where they would find the money, or did not want to burden their community.

I had my doctor friend and some others that wanted to do some public fundraising. But at the time I said, “Look, most of the people that will be contributing are people from my community who are poor already, so I’m not going to do that option”.

Accessing alternative therapies, almost exclusively self-funded, was another layer of inequity. Some felt forced to negotiate the black market to access substances such as marijuana to treat their cancer or alleviate the side effects of orthodox cancer treatment.

Cultural capital is not a replacement for access to assets, however. Māori survivorship was greatly assisted by accessing cultural resources, but often limited by lack of material assets.

Persistence pays

The last thing we need when faced with the possibility of cancer is to have to push for formal diagnosis and care. Yet this was a common experience.

One participant was told nothing could be found to explain their abdominal pain – only to find later they had pancreatic cancer. Another was told their concerns about breathing problems were a result of anxiety related to a prior mental health history, only to learn later their earlier breast cancer had spread to their lungs.

Persistence is another layer of wrangling and it often causes distress.

Once a diagnosis was given, for many people the public health system kicked in and delivered appropriate treatment. However, experiences were patchy and variable across New Zealand.

Issues included proximity to hospitals, varying degrees of specialisation available, and the requirement of extensive periods away from home and whānau. This reflects an ongoing unevenness and lack of fairness in the current system.

When facing a terminal or life-limiting diagnosis, the capacity to wrangle the system makes a difference. We shouldn’t have to wrangle, but facing this reality is an important first step.

We must ensure it doesn’t become a continuing form of inequity, whereby people with access to material resources and social and cultural connections can survive longer.

Kevin Dew, Professor of Sociology, Te Herenga Waka — Victoria University of Wellington; Alex Broom, Professor of Sociology & Director, Sydney Centre for Healthy Societies, University of Sydney; Chris Cunningham, Professor of Maori & Public Health, Massey University; Elizabeth Dennett, Associate Professor in Surgery, University of Otago; Kerry Chamberlain, Professor of Social and Health Psychology, Massey University, and Richard Egan, Associate Professor in Health Promotion, University of Otago

This article is republished from The Conversation under a Creative Commons license. Read the original article.

All cancers begin in a single organ or tissue, such as the lungs or skin. When these cancers are confined in their original organ or tissue, they are generally more treatable.

But a cancer that spreads is much more dangerous, as the organs it spreads to may be vital organs. A skin cancer, for example, might spread to the brain.

This new growth makes the cancer much more challenging to treat, as it can be difficult to find all the new tumours. If a cancer can invade different organs or tissues, it can quickly become lethal.

When cancer spreads in this way, it’s called metastasis. Metastasis is responsible for the majority (67%) of cancer deaths.

Cells are supposed to stick to surrounding tissue

Our bodies are made up of trillions of tiny cells. To keep us healthy, our bodies are constantly replacing old or damaged cells.

Each cell has a specific job and a set of instructions (DNA) that tells it what to do. However, sometimes DNA can get damaged.

This damage might change the instructions. A cell might now multiply uncontrollably, or lose a property known as adherence. This refers to how sticky a cell is, and how well it can cling to other surrounding cells and stay where it’s supposed to be.

If a cancer cell loses its adherence, it can break off from the original tumour and travel through the bloodstream or lymphatic system to almost anywhere. This is how metastasis happens.

Many of these travelling cancer cells will die, but some will settle in a new location and begin to form new cancers.

Particular cancers are more likely to metastasise to particular organs that help support their growth. Breast cancers commonly metastasise to the bones, liver, and lungs, while skin cancers like melanomas are more likely to end up in the brain and heart.

Unlike cancers which form in solid organs or tissues, blood cancers like leukaemia already move freely through the bloodstream, but can escape to settle in other organs like the liver or brain.

When do cancers metastasise?

The longer a cancer grows, the more likely it is to metastasise. If not caught early, a patient’s cancer may have metastasised even before it’s initially diagnosed.

Metastasis can also occur after cancer treatment. This happens when cancer cells are dormant during treatment – drugs may not “see” those cells. These invisible cells can remain hidden in the body, only to wake up and begin growing into a new cancer months or even years later.

For patients who already have cancer metastases at diagnosis, identifying the location of the original tumour – called the “primary site” – is important. A cancer that began in the breast but has spread to the liver will probably still behave like a breast cancer, and so will respond best to an anti-breast cancer therapy, and not anti-liver cancer therapy.

As metastases can sometimes grow faster than the original tumour, it’s not always easy to tell which tumour came first. These cancers are called “cancers of unknown primary” and are the 11th most commonly diagnosed cancers in Australia.

One way to improve the treatment of metastatic cancer is to improve our ways of detecting and identifying cancers, to ensure patients receive the most effective drugs for their cancer type.

What increases the chances of metastasis and how can it be prevented?

If left untreated, most cancers will eventually acquire the ability to metastasise.

While there are currently no interventions that specifically prevent metastasis, cancer patients who have their tumours surgically removed may also be given chemotherapy (or other drugs) to try and weed out any hidden cancer cells still floating around.

The best way to prevent metastasis is to diagnose and treat cancers early. Cancer screening initiatives such as Australia’s cervical, bowel, and breast cancer screening programs are excellent ways to detect cancers early and reduce the chances of metastasis.

New screening programs to detect cancers early are being researched for many types of cancer. Some of these are simple: CT scans of the body to look for any potential tumours, such as in England’s new lung cancer screening program.

Using artificial intelligence (AI) to help examine patient scans is also possible, which might identify new patterns that suggest a cancer is present, and improve cancer detection from these programs.

More advanced screening methods are also in development. The United States government’s Cancer Moonshot program is currently funding research into blood tests that could detect many types of cancer at early stages.

One day there might even be a RAT-type test for cancer, like there is for COVID.

Will we be able to prevent metastasis in the future?

Understanding how metastasis occurs allows us to figure out new ways to prevent it. One idea is to target dormant cancer cells and prevent them from waking up.

Directly preventing metastasis with drugs is not yet possible. But there is hope that as research efforts continue to improve cancer therapies, they will also be more effective at treating metastatic cancers.

For now, early detection is the best way to ensure a patient can beat their cancer.

Sarah Diepstraten, Senior Research Officer, Blood Cells and Blood Cancer Division, Walter and Eliza Hall Institute and John (Eddie) La Marca, Senior Resarch Officer, Walter and Eliza Hall Institute

This article is republished from The Conversation under a Creative Commons license. Read the original article.