It was winter 2020, and I was driving back from a client visit in Warsaw to my hometown. The weather was good, and night had just fallen. Then, suddenly, the car in front of me seemed to have four lights instead of two. I was seeing double.
I still had about 15 miles to go, so I tried to ignore it. I told myself it was probably just fatigue after three hours behind the wheel and twelve hours at the client’s premises. I got home, fell asleep, and forgot about it. But the next day, I was still seeing double. The New Year was just around the corner, so I made a promise to myself that I would get it checked as soon as the holiday break was over.
My first stop was an ophthalmologist. He examined my eyes carefully, ran dozens of tests, and then gave me a chilling verdict: there was nothing wrong with my eyes. It had to be something in the brain, or some other neurological deficit. He ordered me to go to the ER. I went to the hospital emergency room, but unfortunately it was right in the middle of the COVID restrictions. Since I wasn’t in immediate danger, they didn’t do much. They told me I should see a regular neurologist the next day.
So I did. The next day, I went to a neurologist, whom I had found with great difficulty because not many doctors were available at the time. I described my symptoms, showed him the ophthalmologist’s report, and the ER referral. He suspected myasthenia gravis, but before prescribing medication, he ordered an MRI. After a week of waiting for the procedure, and then two more weeks waiting for the results, I finally had the honest but chilling truth in my hands: “Turkish saddle / clival tumor, 4 x 5 cm, penetrating the sphenoid sinus, with a protruding area reaching the pituitary gland. Possibly pituitary adenoma, meningioma, or less likely — chordoma.”
I did some quick research. Adenoma — good. Treatable with medication, not malignant. Meningioma — a little worse, but still treatable. And then chordoma — very rare, malignant, recurring, and not easily treatable. I was shocked, but I still hoped for the best. I went to a neurosurgeon to find out which of these options was most likely. He looked at the MRI for a long time, but he couldn’t tell. What he did say was that I needed surgery either way, because the tumor was in a very bad place and had to be removed. But since the pituitary gland was involved, he referred me to an endocrinologist first.
I got lucky. My endocrinologist was the kind of doctor who looks at the whole patient, not only through the narrow lens of her own specialty. She ordered a long list of blood tests, hormone tests, and neurotransmitter tests — some of which I didn’t even know I had. At the end of the visit, she asked me one last question: “Did you get a second opinion on the tumor?” I told her I had no other option at the time, and that I was really in a hurry to get it out. She directed me to another neurosurgeon, a specialist in tumors of the pituitary area.
So I went to him. He took the CD, put it into his laptop, and looked at the images in silence and complete concentration. He squinted his eyes, moved his head a few times, then looked at me over the top of his laptop and, in a steady voice, gave his verdict: “This is chordoma. It’s relatively small and treatable. The treatment is endoscopic surgery through the nose and sinuses. The possible complications include a cerebrospinal fluid leak, which is treatable with a skin transplant. Do you want the operation?”
My legs trembled. The least likely option had become reality. But the doctor’s calm tone and certainty gave me some courage and clarity. I answered, “Yes. Even today.” He signed me up for the procedure and ordered a few additional tests.
Two weeks later, I had the surgery. When I woke up, the doctor came to give me the follow-up. The tumor had been removed completely. No residual tumor. No cerebrospinal fluid leak. Everything was good. One week of observation, and then I could go home. It was brilliant. I felt like I had won the lottery. A one-in-a-million tumor had been removed, and I was clear. I was happy. My double vision was gone. I returned to work and to my normal routines. I rode my bike again. I enjoyed life.
Until two years after the first diagnosis. I was having control MRIs every six months, and one of them — two years later — showed regrowth. I was ordered to have another surgery. Because the first surgery had been so successful, I went into the second one full of hope and with great expectations. But this time, when I woke up, the follow-up was heartbreaking. They couldn’t remove it. The tumor was harder, and it had grown into the cavernous sinus. The risk of cutting the arteries there made it surgically untreatable. I don’t know if that is normal or not, but I believe my neurosurgeon. He simply couldn’t do too much.
I was advised to undergo proton radiation. In Poland, proton treatment is available in only one place: the National Oncology Institute in Krakow. To qualify, the tumor must either be untreatable or a recurrence that cannot be removed surgically — which was my case. So I contacted them immediately and went to see the doctors there. They reviewed my files, all my tests, and all the surgery reports, and they accepted me for proton beam therapy.
I spent three months there. I received 74 Gy to the original tumor site and 42 Gy to the possible growth area. I tolerated it quite well. There was no real discomfort, apart from nasal discharge and a little nausea. I was tumor-free again — and hopefully I still am. Sadly, the proton therapy caused temporal lobe epilepsy, which we are treating now, and things are looking good. I have scans of my head and body every six months to check for possible metastases. So far, everything is good. Now I am waiting to see what the future brings.
All of this — and this is the point I want to make in this already-too-long story — taught me one thing: don’t worry too much. Look at the bright side of life. Spend time in nature. Spend time with your family. Don’t overthink. Try to find positives, even in these crazy tumor stories. The possibility of dying from this tumor is high, but at the same time, no other tumor has so many talented people working on it. So you never know — the cure may be within reach.
Please, focus on the things that matter, not on the things you cannot control. Like this “devil-chordoma.”
Cheers and good luck,
Michał
6-year survivor