Patient Stories

Hello to all, my name is Vincent Coonen and live, with my wife and our daughter, in Almere, the Netherlands.

In 2013 my story was posted on the Pheo Para Troopers website (merged with the Pheo Para Alliance) and as time passed by my story has extended. Back then I wrote:

“I fought a tough physical battle with paraganglioma which I have won. Mentally there were some down moments but I’ve come out even stronger, resilience pays off! I hope my story will be of support to you.”.

The character of a man is seen in the most difficult moments, when he has to fight for his life and for his loved ones. The difficulties can be overcome, no matter how difficult it may seem, no one should ever throw in the towel or sit down and cry. Taking the difficulties face to face shows courage, and in the end almost everything can be overcome!”

My journey started in October of 2010, I went to my primary care physician with complaints of constant headaches and feeling my heart beating in my right ear. At first the diagnosis was an ear infection but the prescribed medication did not help and as a new complaint I started to experience hearing loss. A CT scan made at the local hospital showed something in my middle ear which they could not identify so I was send on to a University hospital in Amsterdam.

In January of 2011, I was diagnosed with a jugulotympanicum paraganglioma. They told me this was a benign tumour and that they would follow up with more scans and tests as they still could not explain my headaches. I called this tumour “my little friend” unaware of the long road which was still ahead of me.

Through my own research on the internet, I discovered that these tumours are not always benign and can be hereditary, something I was not informed about. As this hospital was not specialized in these tumours I was send on to the University hospital in Leiden. In October of 2011, they attempted to remove the tumour without causing any collateral damage but sadly they had to leave some behind. After this surgery my headaches were gone and to celebrate that victory we went for a short trip to friends in Luxembourg.

With the help of a hearing aid I fully recovered, the genetic tests came back negative (so I am considered sporadic) and scans luckily did not show any other tumours.

In April 2012 I started to experience hearing loss again and scans showed the remainder of my tumour had started growing again and with a vengeance. Another operation in the Netherlands was ruled out so my wife and I went for a 2nd opinion to Switzerland. In the end I decided to go for Gamma Knife radiation here in the Netherlands. I received this one time only, albeit long, therapy in January 2013 and it was successful and a full recovery again!

Between 2013 and 2019 I did have some other medical issues but these can’t be directly linked to my tumour. Out of the blue in April/May 2019 though I started having complaints again. A new scan showed the tumour had returned with a vengeance. For the first time also my dopamine levels were way over the limits.

In early December 2019 I underwent neurosurgery to remove the new grown tumour tissue which was pressing into my small brains. A Gallium68 Dotatate Pet-CT taken in November 2019 showed metastases to my spinal cord and ribs. I was informed about my cancer on my birthday in December 2019, not the present I was waiting for.

Further research on my tumour tissue showed that I have a somatic (local thus not hereditary) SDHB mutation. In September 2020 I had another operation, this time to remove new tumour tissue from my ear canal as I was having a constant ear infection. From then on twice a year a scan to stay on the ball. As long as my discovered metastases stay stable no further treatment, when they become active and I qualify physically it probably will be treatment with Lutetium177 waiting for me.

These past years I’ve learned a lot, about paraganglioma and about myself. Meeting many of you online and the unconditional support I received from all over the world during the difficult moments still feels like a warm bath. We so often take things for granted, but since my disease even a glass of water tastes differently, not to mention a walk or feeling the warmth of the sun on my skin.

As per 2011 I try to give back, I became a member of the board of the Dutch patient association NVPG in 2011 and became chairman in 2016. I also started a Dutch language support group on Facebook in 2012.

I want to conclude saying thank you, especially to my wife and daughter but also to my family and friends worldwide for standing by my side. Without your support my fight would definitely have been much harder.