The patients’ perspective in oral cancer – part I

Around 370.000 people worldwide are diagnosed with oral cavity cancer each year.[1]  Although this is a significant amount, there is little awareness of the symptoms and treatment of oral cancer. The primary, and most effective treatment is surgery. To raise awareness, SurGuide is issuing a trilogy of interviews to show how oral cavity cancer is affecting all age groups. The first interview will be with someone from the age group 20-40, the second from 40-60 and the third from the age group 60 years and older.

This is the story of Guido Brekelmans (26), currently captain of his team at korfball club DSC. At the age of just 19, Brekelmans discovered a lump underneath his cheek. Initial blood tests indicated glandular fever (Pfeiffer’s disease), but the lump kept growing. In January 2014, after a biopsy, he was diagnosed with a myoepithelial carcinoma, a rare form of a salivary gland tumour. “It was a real shock. You have no idea what to expect,” he said.

Brekelmans continued his patient journey in Nijmegen for further testing, where doctors told him that he most likely needed surgery together with radiotherapy. “At that moment it went quite well: it will be difficult the coming time, but I will get through it,” Brekelmans said. Nerves surrounding the tumour make this surgery very complex. The surgeon had to choose between removing more of the tumour and quality of life for the patient. Since the surgeons purposefully did not remove too much, Brekelmans had to undergo 33 irradiations in two months to remove the rest of the tumour.

During his treatments, Brekelmans was in the second year of his studies. “Throughout the whole treatment process, I followed one course. In that way I could still be a bit useful.” Brekelmans also kept himself busy with korfball. “It went quite well physically. Two or three weeks after the surgery I substituted in the cross-finals”, he said.

Guido Brekelmans
Guido Brekelmans (in red) during a korfball-match. Photo license is granted by DCI media.

However, it later turned out that the radiotherapy had been of no avail. In July, Brekelmans heard that he had to undergo another operation in August. Where the first surgery lasted 8,5 hours, the second surgery was a much heavier one of 18 hours. An incision was made from behind his ear, all the way down to his neck and a large part of his thigh muscle was removed as a skin graft for his face. “After that it was quite nerve-wracking. Doctors said in advance that ‘this is your last option’. The chances of succes are hard to say, but they dared to only give me less than 50% chance. That was quite intense,” he shared.

“I was relieved when the surgeon told me after a week that the resection margin was clean” – Guido Brekelmans

While waiting for the results, Brekelmans lay in the hospital with a lot of pain. After a week, the results came in. “The surgeon told me that the smallest resection margin was 1 cm, which is the best possible result in this situation. Then you can immediately look ahead again,” he said.

During his treatments, Brekelmans had a lot of help and support from his environment. When asked what helped him the most, he recalls a banner made by his korfball club DSC. “Before the first surgery, DSC made a banner. This was a huge banner with two pictures from when we played the finals and won. It almost did not fit in my room. That was the first thing I saw and it gave me a lot of energy and reminding me both of better times in life and the support of my friends and family. It is something that really helped me in this time.”

Brekelmans then focused on medical rehabilitation with physiotherapy. It took him four months to regain his physical condition and to play enough matches to get back his rhythm. After this intense treatment journey, he is again of continuous value to his korfball team. When asked if he thinks the coming period will bring something for DSC, he wholeheartedly says “Yes.”

Brekelmans’ story demonstrates the importance of a good first operation, in which the resection margin is clean immediately. With MarginGuide, SurGuide hopes to help patients like Guido Brekelmans and improve the surgical care for oncology patients.

For more information, take a look at the Dutch patient organisation to learn more about symptoms and treatment of oral cancer.