Worrying about cancer in the family – what to do?
Cancer is seldom inherited. But genetic tests are getting cheaper and news about new findings in cancer research can cause extra worries. Many healthy people are wondering, if his or her cancer risk is higher than average.
The Cancer Society of Finland´s counselling services have since 1990s provided advice for those who are concerned about their familial cancer risk. From 1995 a clinical geneticist has participated in the counselling, making sure that counselling nurses are well trained and aware of latest research. Currently two medical doctors and around 50 counselling nurses form counselling services for familial cancer at the Cancer Society.
In 2015, there were 350 discussions via Cancer Information Services (CIS) and 43 customer visits face-to-face.
A specialist doctor assessed genetic risk of 130 patients and nearly 80 were referred to special health care.
A person who is worried about familial cancer risk can approach counselling services in many ways. If a face-to-face consultation is needed, a trained counselling nurse will help in filling in basic information. After that the nurse and the customer will draw a family tree to establish possible risks. In some cases customers will be referred to a specialist doctor who then decides if further referral to university hospital´s genetic clinic is needed.
But the contacting can also go other way around. A customer reads a story of hereditary breast cancer and removal of breasts, gets worried and contacts counselling nurses online – chatbox – or via email or telephone. The counselling nurse then assesses if further referral is necessary.
There is a peak in counselling services, if media tells about cancer. Some people prefer chatbox because it is a silent partner – at work there is more privacy asking questions online. The nurses are multi-tasking: answering the chatbox and seeking information online from national health information portal.
Testing yourself is principally easy. What comes afterwards is complicated. There is more to it than satisfying personal curiosity. Even if gene tests are becoming more frequent and cost less, a specialist should assess if testing is useful. Much more research is needed for most cancers – how should for instance diagnostics and follow-up be organised. What does hereditary pancreas cancer risk mean in practice?
“We have fairly well established standards for gene testing and follow-up for those with BRCA 1 or 2 genes and to some extent ovarian cancers. In Finland, about 10% of breast cancer are hereditary. In colorectal cancer 2–3% of these cancers are hereditary. But in most cancers, we do not have standards and we lack evidence that follow-ups are effective enough ”, says Dr Riikka Huovinen, Chief Medical Officer of Health department of the CSF, leader of counselling services.
Dr Minna Pöyhönen, clinical geneticist, bears the responsibility of annual training and developing genetic counselling services at the Cancer Society.
“People are more and more aware of familial risks, but it is crucial that special doctors interpret what the risk means in practice and in everyday life”, Dr Pöyhönen says.
Random test is not a good idea, both specialists say. From generic results it is very hard to tell what you should do. In the worst case scenario there is extra worry and over-diagnosis. This is why the CSF counselling services offer low threshold services free of charge or with a small office fee. Worrying is wasting time, counselling nurses are ready to help.
Submitted by: Satu Lipponen; Head of Communications & Managing Editor, Cancer Society of Finland
Chief Medical Officer Ms Riikka Huovinen, M.D., Ph.D.
Dr Minna Pöyhonen, genetic counselling, M.D. Ph.D.
Taina Häkkinen, Head counselling nurse