The road to diagnosis
I've been assured by many people that the diagnostics part can be the worst part of cancer - mostly the uncertainty of it all. I can hardly imagine that that's the truth but, hey, the thought helps mitigate some anxiety ahead of treatment. After I first went to see my huisarts/GP, it went from zero to 100 real quick and I'm still only beginning to settle down.
Monday, January 13 my huisarts called me to come in to see her to discuss the results of my ultrasound the day Friday before. Turned out that it was indeed swollen lymph nodes in my neck and that they had their own blood vessels. I was immediately referred to the ENT doctors at the national cancer institute here in Amsterdam for further investigation.
The following Monday began my 'sneldiagnostiek' (fast diagnosis) process at the cancer hospital. Fast is a relative term; in the end it took three weeks to reach a diagnosis but there was a small hiccup along the way.
In my intake appointment with the ENT team, a nasal endoscopy (nice little flexible tube with a camera on the end that they slowly feed into your nostrils and down your throat - it's very strange but not far beyond uncomfortable) showed some suspicious skin in my adenoids. They described it as 'woekerig' which means something along the lines of bumpy with overactive cells there and it was a bit bloody to touch. There was suspicion that the swollen lymph nodes in my neck were actually a metastasis of the tumor in my nasopharynx.
So kicking off the diagnosis process, the main suspicion was naspharyngeal carcinoma or maybe lymphoma with a far-shot risk of just a symptom-less infection, perhaps picked up earlier in the year in Vietnam. I underwent the whole nine yards to figure it out: bloodwork, x-rays, nasal biopsy, PET CT scan, MRI, ultrasound, fine needle aspiration for fluid from the lymph node... The testing is generally manageable but the sheer volume made it a real challenge. And most were tolerable, except for the nasal biopsy. That was under local anesthesia but no amount of local anesthesia can make it easy for you to accept a doctor shoveling tissue samples straight out of the back of your nasal cavity. In the end, doable, but wow.
Besides testing, I had meetings with all kinds of specialists to prepare for treatment - radiotherapist, anesthesiologist, ENT, speech-language pathologist, dentist, physiologist. This scheme was set up under the assumption of a carcinoma diagnosis which would bring a couple months of daily radiation into the center my face alongside chemotherapy so there was a lot of information to take in ahead of time about all the side effects, risks, and how to approach them.
After all these tests, the doctors and oncologists weren't able to come to a definitive diagnosis. The scans showed activity in my chest, neck lymph node, and adenoids, but the biopsies weren't conclusive. So the fast diagnosis took a little longer than expected. I needed to undergo an excisional biopsy which would determine once and for all what exactly it was.
Monday, February 3 was the date of the biopsy surgery. Under general anesthesia (thank God), they took a lymph node from the swollen cluster on my neck and took another couple good samples from my nose. That Friday, February 7, the lab results were already in. I called Dane and we biked straight to the hospital to speak with our doctor. At long last, we had the beginning of an answer: Hodgkin's lymphoma.
The diagnosis was surreal. It didn't come as a surprise - especially considering the peculiar Hodgkin's alcohol symptom. But it hit hard and took more than a few days to process. On the flipside, there was even some relief. Relief that we could confidently rule out the carcinoma, being sure that the cancer is in the lymph system itself, not a metastasis. Relief that the treatment wouldn't be as dreadful as expected. Relief that we finally had a diagnosis.
Monday, January 13 my huisarts called me to come in to see her to discuss the results of my ultrasound the day Friday before. Turned out that it was indeed swollen lymph nodes in my neck and that they had their own blood vessels. I was immediately referred to the ENT doctors at the national cancer institute here in Amsterdam for further investigation.
The following Monday began my 'sneldiagnostiek' (fast diagnosis) process at the cancer hospital. Fast is a relative term; in the end it took three weeks to reach a diagnosis but there was a small hiccup along the way.
In my intake appointment with the ENT team, a nasal endoscopy (nice little flexible tube with a camera on the end that they slowly feed into your nostrils and down your throat - it's very strange but not far beyond uncomfortable) showed some suspicious skin in my adenoids. They described it as 'woekerig' which means something along the lines of bumpy with overactive cells there and it was a bit bloody to touch. There was suspicion that the swollen lymph nodes in my neck were actually a metastasis of the tumor in my nasopharynx.
So kicking off the diagnosis process, the main suspicion was naspharyngeal carcinoma or maybe lymphoma with a far-shot risk of just a symptom-less infection, perhaps picked up earlier in the year in Vietnam. I underwent the whole nine yards to figure it out: bloodwork, x-rays, nasal biopsy, PET CT scan, MRI, ultrasound, fine needle aspiration for fluid from the lymph node... The testing is generally manageable but the sheer volume made it a real challenge. And most were tolerable, except for the nasal biopsy. That was under local anesthesia but no amount of local anesthesia can make it easy for you to accept a doctor shoveling tissue samples straight out of the back of your nasal cavity. In the end, doable, but wow.
Besides testing, I had meetings with all kinds of specialists to prepare for treatment - radiotherapist, anesthesiologist, ENT, speech-language pathologist, dentist, physiologist. This scheme was set up under the assumption of a carcinoma diagnosis which would bring a couple months of daily radiation into the center my face alongside chemotherapy so there was a lot of information to take in ahead of time about all the side effects, risks, and how to approach them.
After all these tests, the doctors and oncologists weren't able to come to a definitive diagnosis. The scans showed activity in my chest, neck lymph node, and adenoids, but the biopsies weren't conclusive. So the fast diagnosis took a little longer than expected. I needed to undergo an excisional biopsy which would determine once and for all what exactly it was.
Monday, February 3 was the date of the biopsy surgery. Under general anesthesia (thank God), they took a lymph node from the swollen cluster on my neck and took another couple good samples from my nose. That Friday, February 7, the lab results were already in. I called Dane and we biked straight to the hospital to speak with our doctor. At long last, we had the beginning of an answer: Hodgkin's lymphoma.
The diagnosis was surreal. It didn't come as a surprise - especially considering the peculiar Hodgkin's alcohol symptom. But it hit hard and took more than a few days to process. On the flipside, there was even some relief. Relief that we could confidently rule out the carcinoma, being sure that the cancer is in the lymph system itself, not a metastasis. Relief that the treatment wouldn't be as dreadful as expected. Relief that we finally had a diagnosis.
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