It started with an ulcer under the tongue that kept bothering her. Antoinette van Keulen, then 31 years old and the mother of a son, took him to the doctor and subsequent tests followed. It turned out to be tongue cancer, a disease that almost never occurs. Certainly not among young women. Fourteen years later she was diagnosed with another rare type of cancer and again in her mouth. Antoinette tells her story in the Week of Rare Cancers.
Antoinette (52) from Den Bosch still remembers that first time: that ulcer that just wouldn’t go away. “I was told it was a chronic condition,” she says. “It will have peaks and valleys,” said the specialist, “and if you suffer less from stress, it will decrease.”
Antoinette was advised to use mouthwashes, but her complaints continued to worsen. “I found it increasingly difficult to eat, had pain when talking and sleeping. My mouth, my ears, everything in my head hurt.”
“I realized the tumor had been growing for months.”
After about five months, Antoinette was no longer comfortable with it and decided to get a second opinion. “I saw another doctor and the first question she asked me was, ‘Has no piece of tissue from this really ever been examined?’ She then immediately referred me to a specialist for examination. Then I immediately knew that it was really wrong.”
It felt like falling into the deep end, without anything to hold on to or certainty. “My premonition came true and I realized that the tumor had been growing all these months. It was terrible. All I could think was: what now? What does this mean for my future and my family?”
Antoinette had never heard of head and neck cancer, now she was almost lost in the fast-moving medical mill. “A large part of my tongue probably had to be removed because the tumor was already very large,” she says. “But in the end it turned out to be possible to opt for an alternative treatment, in which I received radiation and chemo at the same time.”
It was a grueling treatment that made her mouth even more painful. After a while she was unable to eat anymore, after which she switched to tube feeding. She lost fifteen kilos in body weight. Eventually things got so bad for her that she was admitted to hospital. But, the treatment worked and Antoinette was cured of tongue cancer.
“I noticed that my teeth and molars were becoming loose.”
She was free of complaints for fourteen years. Then, completely unexpectedly, she started having complaints in her mouth again. “I noticed that my teeth were becoming loose,” she says.
The cause was not immediately clear. Several doctors from different hospitals were asked to contribute ideas. After a month and a half she got a definitive answer. “It was another rare form of cancer and again in the mouth. This time it was in my jaw.”
This so-called sarcoma turned out to be the result of the radiation she had previously received. “It happens very rarely,” she continues somberly. “But yes, you just have to be in the middle. And because almost nothing was known about this tumor, they didn’t really know how to tackle it.”
Despite everything, Antoinette did not lose her willpower. “It’s a matter of keeping yourself up. Because you know: if you get into trouble, it will be even harder.”
During the operation that followed, they removed most of her lower jaw. A piece of her fibula took its place. “They closed it up again as best as they could,” says Antoinette. “But I have to miss my lower teeth and you can also see that on the outside.”
“I can hardly pronounce the first letter of my last name.”
Talking is difficult, as are eating and swallowing. “I suffer every day from my limitations due to the operation. People sometimes don’t understand me. If I talk a lot, my tongue has already done so much that eating and drinking are even more difficult than normal. And the first letter of my last name is really worthless, I can hardly pronounce it. But I’m still here,” she says happily. “And when I look back at how I got through it, I can squeeze my hands.”
Antoinette decided to participate in the campaign of patient association Hoofd-Neck (PHVV), to raise awareness of the symptoms of head and neck cancer. “It is urgent that there is more attention and more understanding for these types of rare tumors,” she says.
“The uncertainty that you already have when you have a tumor is only greater when it concerns an unknown species. Being alert is essential. It is vital that you receive the correct diagnosis on time and end up at the right treatment center. “
Antoinette in a video from the Hoofd-Neck Patient Association:
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This is the Week of Rare Cancers. Of all the more than 250 forms of cancer, 86 percent are rare. More than 130,000 people in our country are affected by a rare form of cancer. About 20,000 people receive this diagnosis every year.