Patient story: A cutting-edge DNA test put Inke Logtenberg on the right treatment path. Now she hopes others with Cancer of Unknown Primary (CUP) will have swift access to personalized care
Inke knew something wasn’t right. She had some swelling in a lymph node in her groin, prompting a trip to the doctor. After a physical examination, the doctor was not very concerned and recommended a ‘wait and soon’ approach.
‘One month later, it hadn’t gone away, so I went back to the doctor because I was worried that it might be more serious,’ Inke recalls. ‘I was referred to the regional hospital where I had blood tests and was given another appointment.’
In the meantime, while waiting for her next hospital visit, things went downhill. Swelling spread to Inke’s neck and she began to feel quite ill. ‘I was really unwell. At one point, I thought that I might collapse if I didn’t sit down immediately. Inside, I knew this was serious.’
That was mid-January 2021. The next time she saw a doctor, they could see that Inke’s condition had deteriorated. A series of blood tests and biopsies revealed metastatic cancer in the lymph nodes, but the original source was unclear.
‘After a while, the doctors said the cancer did not originate in the lymph. It was a mystery,’ she says. ‘I learned a new term: I had Cancer of Unknown Primary.’
Diagnosis guides treatment
For patients and doctors alike, this is often a diagnostic cul de sac. Without knowing where the cancer began, there is no off-the-shelf guideline to tell clinicians how to proceed. This can be dispiriting for doctors and deeply distressing for the person with CUP.
But Inke was in luck. She was referred to a specialist CUP clinic in Amsterdam where the latest advances in cancer testing are changing the prognosis for patients.
‘I went from the GP to the regional hospital and then to a specialist centre and it was frustrating to find that my personal health information sometimes took a week to follow me to a new doctor,’ she says. ‘It was ridiculous in the age of the internet.’
When she was eventually connected with the right specialists and offered access to appropriate testing, everything began to move more quickly. ‘The most important aspect of my story is a DNA test they did in Amsterdam. This led them to conclude that I most likely had cancer of the cervix.’
Without the DNA test, there would have been no such diagnosis. Inke showed no sign of cervical cancer, but by sequencing the genome of cancer cells found in her lymphatic system, doctors could proceed with a specific course of chemotherapy.
‘I feel lucky’
For six weeks, she had treatment three times a week as part of a clinical trial for CUP patients. Having finished this line of therapy in July, Inke is now feeling better and is in good spirits. Her cancer is stable and doctors are working to ensure it remains that way.
While the two-month wait for a diagnosis felt like an eternity at the time, Inke says she feels lucky to have had access to testing and treatment. ‘When you’re waiting from January to March for something to happen, it’s really difficult. There’s so much uncertainty,’ she says.
One month after Inke’s diagnosis, a new policy passed by Dutch lawmakers ensured that the whole genome sequencing (WGS) testing that put her on the path to treatment would be more widely available. The first centres are now offering this technique, and a growing number of other centres across the country are preparing to offer this test to people with CUP. This can help to end the uncertainty patients have faced in the past and give unprecedented hope.
‘I know not everyone has been lucky enough to have the tests and treatment that I had,’ Inke says. ‘By speaking about this, I hope it will help more people to access the right care for CUP.’