Many promises about new cancer drugs are false

Her cancer is no longer small and is no longer in one place. She stoically undergoes chemotherapy. It will help, she thinks, “because if I don’t do anything I will die and the tumor looks a bit smaller on the scan.” Nowadays you don’t vomit your stomach inside out, but most chemotherapy treatments are not improving life quality. Tired, bald, sore fingers and toes from the nerve infections, the list of side effects is long. You stumble from one control visit to another and your child is at home at the lab and the X-rays. The size of the tumor, the amount of blood cells or the tumor markers, how tolerable the side effects are, are measuring points.

All those visits are – if you’re lucky – about the value you place on life. Of course, at the end of a consultation, doctors also ask if it is still going and if you still see your grandchildren and so on.

Cancer researchers like to talk about personalized medicine these days. A strange term, because good doctors have been taking personal circumstances into account for years. Those researchers and the pharmaceutical industry actually mean something else, namely: precision medicines. Means that, after first unraveling the entire DNA of cancer cells, precisely respond to the protein production in tumor cells. But that term “precision oncology” is also fading again. The idea that there are super resources and that there are even better ones will keep people on their feet and researchers off the street. The problem is: many recent cancer drugs often do not work: only 1 in 5 overall survival increases slightly.

It would make sense if researchers looked at whether patients live longer and how good that life is. That is only expensive: you have to look long. As an alternative, researchers usually use a “derived endpoint”: for example, the decrease in the size of the tumor (response) or the time between the start of treatment and the tumor regaining (progression-free survival).

That tumor size decrease is quite subjective. If a drug has an average response rate of 30 percent, researchers already think that it is good and your drug can be registered – just through the corner. In a sobering book by Vinay Prasad (Malignant: how bad policy and bad evidence harm people with cancer), I read that this choice originally came from the 1970s: 16 experienced oncologists could just feel the so-called size difference with foam rubber balls. Nice and important. Also, progression-free survival is often not linked to “real” survival, let alone quality of life.

Patients should ask their oncologist how good the cure is: do I really live longer and better than doing “nothing”? Let them start by asking whether their doctor has read Prasad’s book.