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  • Writer's pictureManja Gideon Foundation

“Be a pain in the neck”

Lots of guests, lots of questions and an open, informal atmosphere – looking back at an evening full of surprises.

An evening full of surprises
Photo credit: ©Michael Kindermann Photo (from left to right): Monika Burkhalter (Zurich Cancer League), Erika Gideon (Manja Gideon Foundation), Dr Silvia Azzarello-Burri (Institute for Medical Genetics at the University of Zurich), Daniela Sprenger (cancer survivor), Stephanie Ringel (moderator), Dr Michael Rabner (FMH-certified specialist in obstetrics and gynaecology), Munirah Mokhtar (Zurich Cancer League)

Anyone who plans an event hopes for it, so it’s a pleasant surprise when it happens: nearly 100 guests gathered at Weisser Wind Restaurant in Zurich on the eve of World Ovarian Cancer Day 2019 for an information session organised by the Zurich Cancer League and the Manja Gideon Foundation.

Despite our enlightened age, people are often still too ashamed to talk about medical topics. Ovarian cancer is among the illnesses that do not get talked about enough. That’s why knowing about it is so important: it can save lives. The need for information is evident in the growing number of young women who come to the Zurich Cancer League’s counselling service wanting to know more about the topic.

In a short reading, Erika Gideon, President of the Manja Gideon Foundation, quoted passages from «traces manja gideon», a biography in words and pictures of founder Manja Gideon. Erika Gideon said she wanted “to speak with the voice of her daughter” in order to retrace her life and struggle with an invisible enemy. Remembering is a way of highlighting again and again that Manja’s experience is prototypical of this illness – there was a lack of early detection and subsequent lack of treatment.

Manja wished to establish her foundation – her last great idea – in order to spare other women the same fate. The goal of the foundation would be to raise women’s awareness about ovarian cancer and to encourage them to confidently stand up for their health. «And that is exactly the message this information session aims to get across», said Erika Gideon.

Six hundred women in Switzerland are diagnosed with ovarian cancer every year, making it the eighth most common type of cancer among Swiss women. Based on fatalities per year, ovarian cancer is actually the fifth-most common type, explained Dr Michael Rabner in his lecture entitled “Ovarian cancer: symptoms and early detection”. As a registered obstetrician and gynaecologist, he has been running a women’s health clinic in Zurich for 25 years. As Manja Gideon’s brother-in-law, he not only sees the topics from a scholarly or medical perspective, but from the perspective of a family member who has been affected by this disease.

«So what can you do?» to prevent developing ovarian cancer or if you are diagnosed with it? Rabner underlined the importance of differentiating between prevention and early detection. Prevention – before developing the disease – is about knowing and identifying risks. By contrast, early detection refers to when a woman already has the disease.

At this point, it is vitally important to know about and identify early symptoms. (Read more detailed information here: subpage of our website with explanations of prevention and early detection). The more these women know, the more they can do for themselves and their health. «Be a pain in the neck», Rabner advised. «Keep asking questions if you have been suffering the typical symptoms for a long period of time; do not let yourself be dismissed and trust the signals and messages your body is sending you. It can save your life».

One major keyword in prevention is genetics. Genetic mutations increase the risk of developing ovarian cancer. Dr Silvia Azzarello-Burri, head doctor at the Institute of Medical Genetics of the University of Zurich, also stressed that it is important to distinguish between types of genetic mutations: on the one hand, there is hereditary cancer risk (10–15% of cases) and, on the other, risk due to genetic mutations that develop over the course of a person’s lifetime. If many people in the same family have developed cancer, it would be a good idea to seek consultation, for example, during the office hours at her institute. Examining a person’s family tree can quickly indicate the risk and helps determine whether or not to perform a genetic test. The advantage of testing is that, if there are BRCA mutations, it gives the person an opportunity to plan for targeted preventative check-ups such as MRIs as well as for a prophylactic mastectomy and/or fallopian tube and ovary removal.

The use of PARP inhibitors enables targeted therapy in cases of advanced, recurring BRCA1/2 mutation-positive ovarian carcinoma, thus improving the patient’s prognosis. And if you want to do something yourself, you can reduce your risk of developing cancer by leading a healthy lifestyle, e.g., by being physically active and maintaining healthy body weight.

In the subsequent panel discussion, Daniela Sprenger told her story as a cancer survivor. She discovered by chance that she came from a family with several cancer cases and that she had a BRCA2 mutation. Her experience was also very typical: breast cancer, breastconserving surgery, chemotherapy, radiation. And then, when she finally had a genetic test done, she found out about her genetic mutation. At that moment she realised that if she wanted to rule out anymore risks, she needed to have both breasts, her fallopian tubes and her ovaries removed. She said: «Had I done the genetic test immediately, I could have spared myself a lot of trouble». The result was a shock at first, because, as she said, «it gets passed on – now my two sons are potentially at risk of developing cancer!» And so the topics that shaped her everyday life in the past two-and-a-half years would stay with her in the future: regular communication with doctors, financial issues, supplemental therapy like psychooncological care, self-help groups or other alternative services offered by the Cancer League. «I’m doing well again», said Daniela Sprenger at the end of her talk. «It’s very important to have a strong network and be informed.»

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