Salivary Gland Cancer

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Adenoid Cystic Carcinoma (ACC) is the name of the tumor discovered in my trachea in March 2020. It is a type of salivary gland cancer, one of more than 20 different types.

This slow-growing tumor usually occurs in the salivary glands, but is sometimes found in other parts of the body such as the breast, uterus or trachea. ACC is known for spreading along the nerves through a kind of thin tentacles. This makes treatment difficult and the chance of recurrence is high, also (or perhaps especially) in the long term.

In 2020, 115,047 people in the Netherlands were diagnosed with cancer. The most common cancers are breast cancer in women and prostate cancer in men. If I compare these figures and convert them to the percentage in relation to the total number of diagnoses, the enormous difference is clearly visible.

  • Breast cancer: 15,077 = 13%
  • Prostate cancer: 12,815 = 11%
  • Salivary gland cancer: 179 = 0.16%

About 10% to 15% of salivary gland cancers are ACC. That would be around 20 diagnoses for 2020, or about 0.017%. And then the number of people who, like me, have it in the trachea is even smaller.

Due to the rarity of ACC, there is little data about the course and possible treatment. And that makes me very insecure. Because what is known is that the chance of returning is at least real. And then?!? At the end of the month another CT scan is scheduled and I am a bit anxious about it. I try not to think too much about it but I can't let go completely.

I also looked at the survival rates of breast cancer, prostate cancer and salivary gland cancer. What struck me about these graphs (see images below the text) was that the percentages in breast and prostate cancer flatten much more compared to 40 years ago. In salivary gland cancer, the percentages have changed little. A big difference here is the amount of research that can be done into breast and prostate cancer simply because there is more data and money for it. 

The Radboud UMC in Nijmegen conducts research into salivary gland cancer. But like any research, money is needed. I would very much like to contribute to this. I have considered starting an action, for example walking to raise money. But unfortunately my health is not cooperating to make this happen. Instead of sending Christmas cards, I'm going to make a donation for this research. And of course it would be really nice if I could raise even more money. Hopefully the cancer will stay away and it will no longer be necessary for me, but at least for all people who do receive this diagnosis and need treatment.

The page for raising money from the Radboud Onologie Fonds is in Dutch, but you can find it here:

https://radboudoncologiefonds.voorradboudfonds.nl/actie/debbie-van-duist






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