First, do no harm

Almost every form of cancer is treated multi-modally. Multi-modal means that multiple modalities are used to treat the disease. In my case that is surgery, radiotherapy and drug therapy.

The surgery is over, the radiotherapy – that will not surprise readers of previous blogs – I do not wish to undergo now, and we are drifting towards drug treatment. This is adjuvant treatment. That is to say: tumor cells are no longer detectable, but they are still there in a certain percentage of patients. The treatment is directed against those invisible cells. And because they are invisible, you don’t know if your treatment is successful. After all, you can’t measure anything. You also do not know whether the individual patient will benefit from the treatment, you treat an entire group on the basis of research data from the past. So by nature you treat many people for nothing, but because you cannot know who they are: better safe than sorry.

All this means that a careful trade-off must be made between the chance that the adjuvant treatment will have a favorable effect on survival and the chance that permanent damage will be caused by the treatment. Because: Doesn’t help, it always hurts.

If I zoom in on chemotherapy, the scientists find that adjuvant chemotherapy in breast cancer should give a 3 to 5 percentage point survival gain. With a breast cancer-specific 10-year survival of 88 percent or more, the benefits of the therapy do not outweigh the harm. And to calculate this 10-year survival, various prediction models are in circulation.

Then what is that damage? I think permanent damage is the most relevant. Of course it’s awful when your hair falls out, when you’re very nauseous, when you just feel bad. Knowing it’s temporary can help you through that. But permanent damage, such as cognitive impairment (the ‘chemo brain’), polyneuropathy, heart failure, chronic fatigue, that’s a different story. The ‘chemo brain’, the cause of which has not yet been determined but which occurs in 30 to 70 percent of treated patients, can ensure that you can no longer do your work, with the associated (significant) drop in income. Chronic fatigue: ditto. Heart failure: ditto. And not only paid work, also taking care of children, parents, animals; be socially active, play sports.

‘Chemotherapy – Doesn’t help, it always harms’

I think it is very good that the damage that chemotherapy can cause has already been taken into account when drawing up the directive. Primum non nocere, first, do no harm, a statement attributed to Hippocrates, who had never heard of chemo. Medicine has increasingly become an art of assessing opportunities and risks and finding your way in that uncertainty. Ovid, not a doctor and centuries after Hippocrates, understood this problem perfectly: “Nothing is useful that cannot be harmful at the same time.” A firm discussion about those opportunities and risks is necessary, and my three questions are again very useful: what is the effect on the disease, what is the effect on me, to what extent does it suit me?

But the chance that you will receive a treatment that suits you depends on many things. Example from another field. A friend developed a swelling in his neck, which turned out to be due to a haematological malignancy. He goes to the hematologist. Systemic treatment necessary, good prospects and the haematologist says that my friend is ‘fit for chemo’ and will therefore receive a combination of drugs with significant side effects. However, my friend is a self-employed person who could not afford disability insurance. He has children studying and his partner has no income of his own. The proverb applies here: whoever does not work will not eat. Informed by me of the schedules given to ‘unfit’ patients, who are much less toxic, he expressed his desire to have such treatment. It was desperately necessary for him and his family that he could continue to work. That turned out to be quite a struggle, and in the end the specialist gave in. Friend has been treated, in complete remission, and has remained fully operational.

A hematologist friend to whom I told this thought this course of action was very wrong. He thought it was outrageous that this relatively young and healthy patient had not received the most effective treatment. “Another solution should have been found for that period when your friend was unable to work!” He didn’t know what that should be either. “In addition,” he growled, “that mild schedule, in this case is not reimbursed separately by the health insurer, so the hospital has to pay for it itself!”

See, this is the whole problem in a nutshell. The medical specialist thinks that the biomedical outcomes are the most important, and he is sure that he is right. This great point is reflected in the guideline, which distinguishes between ‘fit for chemo’ and ‘not fit for chemo’. The health insurer will rely on what the guideline says, and will or will not attach separate reimbursement for certain resources to it. The patient is then not even offered the choice between highly effective and extremely toxic versus slightly less effective and much less toxic. Because directive, because costs.

It will never work like this with primum non nocere.

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