Dick had been a loyal participant in the Nijmegen 4Days Marches for many years. And he was very much looking forward to walking the 100th March with his granddaughter in 2016. But, in 2014 he suddenly developed a lot of pain while walking and was just able to finish the 4Days Marches with pain medication. In 2015, Dick was referred to an orthopedist by his primary care doctor, hoping to find out the cause of his pain.
The orthopedist couldn't find anything and referred Dick to a neurologist, where he was diagnosed with claudication (also known as leg syndrome). Surgery would be difficult, and the neurologist suggested starting Mensendieck exercise therapy. After six months of intensive exercise, there was little to no improvement, and chronic pain management was initiated. But because the dosage had to be constantly increased for just a bit of pain relief, surgery was decided upon.
Through an acquaintance, Dick comes into contact with a neurosurgeon who has a lot of experience doing this particular surgery. But because this doctor was affiliated with another hospital, Dick first had to be referred through a neurologist. This neurologist indicated that he did not have time for a second opinion and that it could take up to 13 weeks. This was not acceptable and Dick decided to write him a letter. It then turned out to be possible to skip the neurology referral and contact the neurosurgeon directly.
In that hospital, the waiting times were very long and it turned out that the surgeon was also operating in another hospital, where Dick could be seen a week later. In preparation for the operation, CT scans were made. The surgeon discussed the results with Dick and said, "You have something very unusual", to which Dick replied, "Then it must be a tumor?” The surgeon confirms and indicates this is either a chordoma (malignant tumor) or a chondroma (a benign tumor). But he would have to go to LUMC to get a definite answer because that's where the specialists in that field are located.
He had to contact the surgeon who had referred him again if the appointment wasn’t scheduled within three weeks. Those three weeks passed and after the surgeon made a call to remind LUMC, Dick was in Leiden a week later. More scans were done and also a CT-guided biopsy (with this, the doctor can very specifically remove a piece of tumor). It turns out to be a chordoma. The orthopedic surgeon recommends starting with radiation proton therapy, then surgery, followed by radiation again. For the proton therapy, Dick had to go to Heidelberg in Germany; fortunately, LUMC had a direct line to this proton center, so everything was arranged quickly and easily and he was also fully reimbursed by the insurance company.
When Dick was diagnosed with chordoma, he initially thought "When am I going to die?", however, by reading and learning more and contacting fellow patients in Holland, Dick sees that the diagnosis of chordoma is not an immediate death sentence and that there are chordoma patients who have been living with a chordoma for 15 -17 years. The contact with a fellow patient definitely helped Dick the most. He was several months ahead of Dick’s trajectory and it was nice to talk about treatment options and radiation.
In September 2016, Dick started in Heidelberg with a cycle of 30 radiations of 54 GyE (normally for chordoma at least 74 GyE is usual). Upon returning to the Netherlands, the planned surgery is called off, as the doctor believes Dick would be worse off after surgery. This came as a surprise. Through the fellow patient, Dick is informed of a clinical trial in the United States, which consists of radiation, followed by experimental treatment, and then followed by radiation again.
Dick contacts the proton center in Heidelberg to see if he can be considered for this. The answer is short and firm, "You have not yet had enough radiation and you must come back for another cycle”. In February 2017, the second cycle of radiation therapy follows in Germany. And that completes the treatment. Dick has annual MRI checks, which he always also sends to Heidelberg for verification, and always courteously receives a letter with their interpretation.
The tumor has remained stable since then. After the radiation treatments, the pain has also decreased. In 2018, Dick decided to wean himself off the painkiller Oxycodone, with success. Then, with the help of his primary care doctor, he also tapered off the painkiller Pregabalin in six weeks. Dick does have pain, but that pain is partly ignorable and otherwise tolerable. Some activities, such as walking and lying down do cause pain, and Dick has found adjustments for those to make it more bearable. For example, an electrically adjustable bed, so that Dick can sleep with a rounded back. Or a bar stool at the sink so he does not have to stand too long, and for walking he uses a walker. Dick is a volunteer at the Patient Platform Sarcoma where a working group is investigating how the (medical) information on the website can be made accessible and understandable for everyone.
As Dick himself says with a laugh, "I lead the life of a senior citizen, but at 79 years old that's exactly what I am.”
Tell us your Uncommon Story
Telling your chordoma story in your own words can help others in our community feel more connected and prepared to take on whatever may lie ahead. We invite you share your experiences and insights with others, who can benefit from knowing they’re not alone.