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Families in flux.

“How should I tell the family?”

Interview: Angelika Jacobs

Cancer sometimes runs in families and occurs as a result of a genetic predisposition. However, it can be challenging for those who have the genetic predisposition to tell their biological relatives that they might also be carriers of the same cancer gene. Professor Maria Katapodi researches ways of providing support in conveying information to family members.

UNI NOVA: Professor Katapodi, let’s imagine that I develop cancer. Should I be worried that my direct relatives also have an increased cancer risk?

MARIA KATAPODI: That depends on the type of cancer and your age at diagnosis. There are known genetic risk factors for around 10 percent of cancer types, and they are assumed to exist for another 20 percent. In the event of certain warning signals, the physicians treating you would suggest genetic testing.

UNI NOVA: What might those warning signals be?

KATAPODI: A cancer diagnosis at a relatively young age, meaning younger than 50 years old, a recurrence of the same type of cancer after a number of years, or previous cases of cancer in multiple relatives from the same side of the family. If your genetic testing shows that you have a cancer gene, you should let your biological relatives know so that they can also seek advice. However, only a small fraction of relatives receives this kind of information.

UNI NOVA: How high is the number of people left in the dark?

KATAPODI: There are no exact figures yet – that’s something we’re working on. However, there are estimates based on past studies. For genetic risk of breast and ovarian cancer, only around 30 percent of relatives are given the appropriate information. For Lynch syndrome, which is associated with a high risk of colorectal cancer, the number is as low as 15 percent.

UNI NOVA: Why is this?

KATAPODI: There are various reasons. One is a lack of communication within all members of a family. A patient may have long since lost touch with certain relatives, or barely know them at all. Another factor is poor networking among healthcare institutions. We are conducting a study called “Cascade” to determine the exact reasons and develop more effective strategies to reach out to relatives and give them the information they need.

UNI NOVA: Do you have any initial results?

KATAPODI: Yes. For example, we have found that most patients feel that they are responsible for informing their family members. They don’t want to leave this task to their physician. But the question “How should I tell my family?” is a difficult task for many of them.

UNI NOVA: What can be done to make the process easier?

KATAPODI: One option is to pass on the information via a proxy within the family. This role is often taken on by mothers. They and other female relatives can then pass on the information in a “cascade” process.

UNI NOVA: But what if no proxy can be found?

KATAPODI: Our surveys show that most patients consider a confidential web-based platform to be an appropriate tool to facilitate communication with relatives. Accordingly, we are developing a platform of this sort in a second study, “Dialogue”. We’re still in the early stages of that but we’re interviewing members of these families to find out how we can provide them with personalized cancer information.

UNI NOVA: Perhaps some relatives don’t want to know that they have a genetic risk.

KATAPODI: It’s obviously up to them whether or not they get tested. Many people are afraid of the possible consequences of a positive genetic test. For example, they are afraid of being pressured into a prophylactic operation. I’m sure you remember Angelina Jolie, who opted for this step in light of her very high genetic risk of breast and ovarian cancer.

UNI NOVA: It’s understandable to be afraid of such a radical intervention.

KATAPODI: But taking advice from a genetic specialist doesn’t mean that an operation will inevitably follow. No one would suggest that a 25-year-old with a high risk of ovarian cancer have her ovaries removed, triggering an early menopause. In a case like this, regular check-ups are a more appropriate option. For a 45-year old, a prophylactic operation is at least worth discussing. I can only recommend that people seek sound advice from a credible source, for example a genetic specialist, in order to make an informed decision.

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