DISCOVER study | Prostate Cancer Foundation

Heredity and prostate cancer

Fortunately, hereditary factors in cancer are receiving more and more attention. The Prostate Cancer Foundation has been involved in the initiative for the DISCOVER study, financed by the Dutch Cancer Society.

The beautiful name of the study stands for: Detecting Increased Susceptibility for Cancer in relatives by Offering genetic Vmoney Evaluation as Regular healthcare. In other words: investigate whether it is useful to include research into hereditary factors in standard health care. This means that the healthcare professional who treats a patient requests DNA testing himself, instead of referring the patient to a clinical geneticist. The DISCOVER trial is aimed at prostate cancer patients whose disease has spread. The study is a collaboration between UMC Utrecht, Radboudumc and NKI-AVL, supported by the Prostate Cancer Foundation and the Netherlands Genetic Cancer Foundation.

The editors of News spoke about the study with Prof. Dr. Margreet Ausems, (principal investigator of this study and professor of Clinical Oncogenetics) and Drs. Michiel Vlaming (medical researcher).

What do you want to achieve with this study?

Margreet Ausems: ‘We want to trace new families with a hereditary predisposition to cancer. We then use DNA testing in the blood to look at a number of breast cancer genes, including BRCA1 and BRCA2. An abnormality (mistake) in those genes is not only important for male relatives, but even more so for female relatives. Because family members who are carriers of such a gene abnormality have an increased risk of breast or ovarian cancer. DNA testing can therefore have important consequences.

Men who are carriers of a BRCA2 gene abnormality are eligible for regular checks for prostate cancer from the age of 45. They also have an increased risk of breast cancer. Women who are carriers can be screened for breast cancer more often and for a longer period of time. For example, the diagnosis of cancer can be made earlier, and there is therefore often a better chance of survival.

In addition, women can also take preventive measures that greatly reduce the risk of cancer. Consider, for example, the preventive removal of the breasts or ovaries and fallopian tubes.’

How was the study set up?

Michiel Vlaming: ‘Heredity research is a relatively new phenomenon for the healthcare professionals involved. We have therefore developed an online training program. The urologists, oncologists and nursing specialists in the 15 participating hospitals have been invited to follow this program so that they gain more knowledge about DNA testing and also receive practical tips on how to discuss DNA testing. It is important that patients can give well-informed consent for the DNA test. This has worked well: healthcare professionals in 14 hospitals have now completed the training program and are now informing their patients with metastatic prostate cancer about DNA testing.

In December 2021, the first patient gave consent for the study, and by now (October 2022) almost 400 patients have already been included in the study. We aim for 800 participants, which we hope to achieve in the course of 2023.

The results of the DNA test (in the blood) are sent to the participants by letter from the Genetics department. According to previous international studies, 5 to 15% of men with metastatic prostate cancer are carriers of a hereditary gene defect. If such a hereditary gene abnormality has been found, the patient is invited to the outpatient clinic of the Department of Clinical Genetics. Here we discuss the results, the possible consequences for the patient himself and any further investigation in the family.’

How are the effects of the study monitored?

Michiel Vlaming: ‘We do this with three questionnaires for healthcare professionals and three questionnaires for patients.

The healthcare professional completes the first questionnaire before starting the online training program. Then three months later another questionnaire and six months later the third and final questionnaire. Based on the completed questionnaires, we can properly map out the experiences of the healthcare professionals.

The patient fills in his first questionnaire after talking to him about DNA testing, the next four weeks after receiving the results of the test and the last six months after the results. In the patient questionnaires we also pay attention to communication within the family when a gene abnormality is found.’

Will genetic testing become standard care for men with prostate cancer?

Margreet Ausems: ‘I hope so. In this study, we only look at patients with metastatic cancer. We still have to wait for these results. But patients with localized prostate cancer can also be carriers of an abnormality in a breast cancer gene. This is particularly common in patients who have a family member with breast, ovarian or pancreatic cancer. We also pay attention to this in our training program, so that healthcare professionals refer men with a family history of these other forms of cancer to the clinical geneticist more often.

With the DISCOVER study we hope to achieve more attention for hereditary factors in prostate cancer. Both with the healthcare professionals and with the patients.’

Can a reader of this magazine sign up somewhere to participate in the study?

Michiel Vlaming: ‘Participation in the DISCOVER study is only possible for men with metastatic prostate cancer who are being treated in one of the 15 participating centers listed below. If you have questions about DNA testing due to family history, you can contact your own treating doctor or nurse specialist.’

UMC Utrecht-Utrecht
Radboudumc – Nijmegen
Antoni van Leeuwenhoek – Amsterdam
Amsterdam UMC-Amsterdam
Erasmus Medical Center – Rotterdam
University Medical Center Groningen-Groningen
Canisius Wilhelmina Hospital – Nijmegen
Francis Hospital – Rotterdam
Catharina Hospital – Eindhoven
Elisabeth Tweesteden Hospital – Tilburg
Spaarne Gasthuis – Hoofddorp
St. Antonius Hospital – Utrecht
Rijnstate Hospital – Arnhem
Meander Medical Center – Amersfoort
Tergooi Hospital – Hilversum

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