PATIENTS’ STORY

She was 39 when her lung cancer was discovered – metastasized and not curable. Targeted therapy has kept the cancer under control. The treatments are developing together with Inge. Every time a medicine has run its course, the doctor takes a biopsy and looks for the right new medicine. Inge herself picked up her life again after the initial shock. ‘I make plans for a maximum of three months.’

Inge: ‘I was playing tag with my niece when I noticed that I couldn’t breathe properly. At night I became short of breath when I lay on my right side. After a hiking holiday in the Alps, the persistent shortness of breath made me realize something had to be done. A week after an X-ray of the lungs that showed fluid behind the lungs, I heard that it was lung cancer. That first night, after hearing that news, I was shocked and terrified. Until that moment I was fit and healthy and not worried about getting sick. Now I had the feeling that I could die at any moment.

I turned out to have a DNA error in the tumor, for which targeted, inhibiting medication exists in tablet form. It was a matter of waiting and seeing if the medication would work and for how long, but it worked for me. I was saved from the classic image I had of cancer, with chemotherapy, nausea, and a bald head. It didn’t take me long to turn the fear into the full enjoyment of what I had. I really enjoy my work and wanted to get back to it three weeks after the diagnosis. My employer responded fantastically. “Tell me what you need to be able to continue working,” he said. Within a week there was a bed in the office so that I can rest when necessary. I started working a day less, so I have enough time for friends and family. I don’t have a bucket list. I make plans for a maximum of three months, I live in the here and now.

I did well on that first medication for a year. I had a scan once every three months on which you saw the tumors shrink. At one stage there was nothing left to see. Misleading, because the cancer is still there and you know that it will grow again. And yes, a year later, a new biopsy showed that the tumor had changed. It had changed to an aggressive but treatable variant, because at that time a study was open with a combination treatment of a new experimental drug with a light dose of chemotherapy. I had to go to the hospital for administration one day a week. I was very sleepy then, but I had enough energy for the rest of the week. The treatment worked again.

Two years ago, a new biopsy showed that the tumor had shifted again and that a second mutation had developed in it. I have been taking another new medicine since then, it had been on the market for only two months when I got it. But then I got neck complaints. The MRI scan showed that my small brain was full of metastases. It took some persuasiveness from my doctor, I hoped that brain radiation was not necessary if the new medication caught on quickly, but eventually I underwent that radiation. I was scared but managed to talk about it. I am a researcher myself, so I know that there is not always one answer, but that there are considerations in choosing a certain treatment over another. Because my doctor discussed his considerations with me, gave me time, but also clearly said: it is important to do it this way, I thought: he is right, I have to do this. It worked out well. After the radiation, I had a few weeks of fatigue, but that was soon over and many metastases in my brain disappeared.