Bugging The System

A blog about microbes, diseases and biomedical research advances. Posts in English or German.

Post-cancer quality of life in the limelight

Cancer survival has doubled since the 1970s. Today, around 1 in 2 people live on after their cancers have been treated. This is a huge progress, but there is a dark side to these statistics we do not normally talk or think much about: quality of life.

Pediatric_patients_receiving_chemotherapy

Two children receiving chemotherapy. Image by Bill Branson for the National Cancer Institute via wikimedia (public domain image).

In discussions about cancer, we often focus our attention on survival. Survival can be measured easily, and we can create nice graphs and figures showing how it has improved with new treatments. Unfortunatly, much less consideration is given to another important, but hard-to-measure factor: how treatments impact the quality of life of cancer patients. A common preconception of many is “What doesn’t kill you makes you stronger”. We tend to imagine cancer survivors to come out of their ‘fight’ with the disease stronger and more vital than before. In the end, we may see them as “the lucky ones”, the ones that got away and ‘beat’ cancer. Sometimes cancer survivors may feel this way, but at other times this may be far from true. A cancer diagnosis and cancer treatment can have lasting effects on someone’s physical and mental health.

As a cancer researcher, I personally believe that it is time for us to discuss the consequences of cancer diagnosis and treatment more, and to increase our efforts to improve the quality of life of people with cancer. In recent years, more research has been dedicated to this topic, but I feel we can still do more. Most of all, it is important to recognise that long-term effects exist and to raise awareness of them. This way, we can all push to do more about the lingering effects of cancer diagnosis and treatment. By writing this post, I hope to add my bit to this discussion, and I hope some of you may join me in doing so.

If you and I are diagnosed with cancer today, statistics say one of us would survive. To do so, we both would have to go through different treatment regimens, depending on which cancer either of us had developed and how far the disease had already progressed at the time of diagnosis. Many treatments are combinations of drugs, often in addition to surgery or radiation therapy. When no treatment is effective, a patient may decide to try experimental regimens that are not fully tested yet.

What all of these interventions have in common is that they are not free of side effects. The nasty sides of many chemotherapeutics – hair loss, vomiting, bowel problems and fatigue – are well known. With many experimental drugs and drug combinations, there is no way telling which side effects, especially in the long-term, might develop. Operations will cause some pain and they may demand long recovery periods where patients could be bedbound. Worse still, sometimes operating a cancer also means that a substantial amount of healthy tissue has to be removed with the tumour. This could mean taking bits from organs that have vital functions in our bodies. Sometimes, ‘substitutes’ for these organ bits have to be fitted.

This can, for example, be the case with colon cancer: in some cases a bit of colon has to be removed, which may make it impossible to connect the remaining bowels to the anus, temporarily or permanently. A surgery, the so-called colostomy, may be done to create a hole in the belly that serves as new exit for the colon. Excretions that would normally pass through the anus are afterwards collected in a bag that is connected to the belly of the patient. It is not hard to imagine that this intervention can greatly affect the life of the patient, even once they have ‘beat’ their cancer.

In some cases, tough decisions have to be made that can affect the future life of the patient if they survive. A schoolmate of mine was diagnosed with cervical cancer shortly after our A levels. I met her about one year after her diagnosis and she talked about her treatments. She told me that the doctors wanted to remove her reproductive organs – her cancerous cervix along with her womb and ovaries. She denied, because she said that if she made it out of this alive she wanted to have children. She said they did operate her, to ‘stretch’ her cervix out to make it easier to irradiate it. She had radiotherapy and a chemotherapy regimen. The time we talked was the last time I saw her. She died less than a year later, shortly before her 20th birthday. There is no way telling if removing her womb together with the treatments would have cured her, but she undoubtedly had to make a very difficult choice: increasing her chances of survival in return for giving up on the possibility of having children.

These decisions can have a psychological toll. A survivor may feel guilty about what they sacrificed to improve their odds of living, or develop depression or other mental illnesses following the continued stress of the ‘fight’ with cancer. The post-cancer life can be vastly different to what a person imagined before being diagnosed with cancer. They may need prolonged care, or they may not be able to start a family. They may have learned that they have inherited a DNA mutation that they could pass on to their children, which would make them likely to develop the same cancer they had.

Sometimes, drugs or radiation can also affect organs that do not harbour the cancer. Childhood leukaemia treatments have made tremendous progress in the last few decades, and most children now live long and fulfilled lives after their therapy. Drug and radiation regimens for leukaemias have known culprits though: depending on the age of the patient, the drug methotrexate and radiotherapy of the brain can affect the young patient’s brain development or lead to some mental difficulties. Chemotherapy can also cause heart or lung problems later in life. It is hard to predict which children will suffer most from side effects, but research is under way to find out more about the mechanisms of how the treatments cause these side effects, and how we may prevent them from doing so. This is important, because the treatments are so effective – developing a new therapy that works at least as well will take a long time, and we also have a responsibility to help the children that are sick to today to have the best chance of survival with least side effects.

The points mentioned above are by no means a comprehensive list. They only serve as examples for what a cancer patient may go through during or after treatment. Every patient will have a different experience, and for me, it is important to acknowledge and consider that. We should never assume that someone that had cancer was just ‘lucky’ – they may have made big sacrifices to still be alive today. Without knowing of the specifics of their experience, we simply cannot imagine what their journey was like for them. In many cases, this voyage will have included pain and some suffering, and we should work hard on limiting this in the future. Rather than mostly focusing on boosting survival, we should spare some thoughts for improving the quality of life for people that are struck by cancer.

And for that, we need to talk more about the life after cancer and challenge the “stronger-than-before survivor” stereotype. We need to demand improvements in care, treatment and monitoring. More than that, we need to be more empathic with people that ‘beat’ cancer, but still suffer from its consequences. Many cancer survivors will feel incredibly lucky to be alive; some will feel that this experience has made them stronger. Some will feel differently. If we want to help future cancer patients, we need to improve cancer outcomes – both in terms of survival and the quality of life of the patients.

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This entry was posted on April 17, 2016 by in Science and Society and tagged , , , , , .
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