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Patient Voices


Digestive Cancers Europe believes that the patient voice is central to improving the patient experience. As experts in their own lives patients can provide insight into what it is really like to face a life changing disease and in particular colorectal cancer.

More and more we see patients becoming involved in initiatives aimed at improving health systems and we truly believe this to be the new age of patient involvement. However one of the most important roles for patients is to share their experiences and to provide hope to others facing similar challenges.

We want to hear your story. 

We hope that this section of our website will provide the platform and inspiration for patients/survivors to tell their own story. If you would like to contribute to this page please contact: Zorana Maravic at zorana@digestivecancers.eu

Robyn's Story

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I first realised something was wrong when – at 28 years old – I collapsed. It was 2005, and I was taken to hospital for several tests after it turned out I had haemorrhaged from my bowel. When the physician came to tell me the results of my tests he said one word that changed everything: cancer. 

The following minutes, hours and days were made up of a blur of information competing with mixed emotions of anger and confusion. Until that point I had been a mum with a husband and two young children, and I had just bought a hairdressing salon of my own. 

A week after the haemorrhage I had surgery to remove the tumour and part of my large intestine. The surgery was successful, as were the 12 months of chemotherapy that followed. By August 2006, things were looking positive and we were planning life without the interruptions that regular chemotherapy treatments bring. I was still having regular checkups with my doctor, including blood tests and scans, but my treatment was over.

In February 2007 we had another devastating shock. The routine checkups had shown that the tumour from my colon had spread into my liver. My diagnosis was now metastatic colorectal cancer. The emotion that flooded my body was indescribable. 

More surgery followed my second diagnosis. After the surgery, my physician and I discussed my options for a treatment plan, to target the cancer cells that had spread through my body and that couldn't be surgically removed. During the conversations, he mentioned a new test that was available – a RAS biomarker test – which could improve my medical team's understanding of my cancer and, more importantly, how we could best treat it. 

Every cell has a RAS gene, my doctor explained, and a RAS biomarker test would show if my RAS genes has mutated or not. By knowing the mutation status he could identify a treatment that would work best with the specific way my cancer was growing and spreading. The results of my test showed that I had ‘wild-type' (normal) RAS genes. Knowing this, my physician was able to develop a treatment programme specifically for me – one that would shut off my cancer's food supply.

Now, 8 years after receiving the news that my cancer had returned and spread, I am once again enjoying my life as a mother and a wife. For now, my cancer is behind me and I can focus on living life to the fullest. RAS testing certainly enabled my physician to give me the medicine I needed and avoid wasting time with other treatments that wouldn't have worked as well. 

I would urge anyone who has received the terrifying diagnosis of metastatic colorectal cancer to take control and make sure they ask their doctor for a RAS test – so that they too can have the best possible treatment plan, to give themselves the best possible chance of tackling this disease.


Robyn is the patient ambassador for the GetPersonal Campaign. More information can be found by clicking here
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Digestive Cancers Europe vzw/asbl
Terrestlaan 30
3090 Overijse
Belgium
Tel: Phone : +44 0)1722 333 587
info@digestivecancers.eu


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The information contained in this website is for general health education purposes only. Its objective is to give general guidance, and should not replace or be interpreted as a consultation with a physician or a healthcare professional. For any personal questions about your health, please talk to your doctor. Even if we try to keep the information on our website up-to-date and correct, we cannot guarantee that it covers all the latest medical and scientific insights.
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