This post continues the story of my diagnosis, it follows “Getting the Ball Rolling”, so you may want to read that post first, cheers!
After a weekend of replenishing my body of the nutrients needed after the nearly 2 days of not eating and cleaning myself out, I return to work on Monday, with a doctors appointment in the afternoon. I sit restless in the chair waiting for her to come in and give me some results. A short time later the door creaks open and she appears says, “Hi Stephen”, and sits at her computer. She goes on to tell me the two procedures don’t yield any answers for my symptoms and that everything looked fine from either end. However my blood and urine lab work show elevated markers, signalling something is off. I’m book to go for an MRI and another CT scan.
Now here it’ s going to get dry as I attempt to explain some medical terms, and believe some of this lab work and numbers can be mis-leading. Even my Oncologist joked with me that its a bit of a “Voodoo science”. From my understanding, while the numbers are important the doctors are more concerned by the way they are trending from test to test. As the markers can be manipulated by the patients lifestyle, exercise and diet. So, markers trending down are good and usually means tumors are stable, even non-functioning. Markers trending up can mean tumor growth, more spread and are functioning, but it could also mean that you didn’t follow diet properly. I get lab work done every 3 months.
The blood test is called a Chromogranin A, now I believe and don’t get mad if I’m wrong a normal reading for this is under 100, but I also heard that 20 is the number your after. Before surgery I was around 150, I think and I’ve heard of numbers into the thousands, so even as high as that initially seemed to me there are many patients who struggle with much higher markers . As I sit here now my number is 25, and that my friends is a very good number for someone with this disease.
The 24 hour urine collect test is called the 5-HIAA and it finds out how much hydroxyindoleacetic acid is in your urine. This acid is a waste breakdown of serotonin by the liver. So, if you have an elevated markers during this test you have too much serotonin in your system. Neuroendricine tumors secrete serotonin, there by the higher the number the more the tumors are functioning or have spread. I believe the normal number for this is also around 20, before surgery this number for me was 110, and right after surgery dropped to 20. As of today it is 45, which is still a good number. Now like I said earlier, this test can be easily manipulated by your food and I have been guilty of not being very strict in the past and not eating foods high in serotonin anywhere from 24 to 72 hours prior to the 24 hour collect. It also seems to vary from doctor to doctor as how long beforehand to start with the diet and like I said they are more concerned about their patients trend, mine has been up and down for most of the year.
The nurses at Brantford General, in the cancer clinic are the best. I get my blood work done there and get my jug to collect my sample. I return 2 or 3 days later with the jug filled, it’s always a little embarrassing carrying a jug of urine into the hospital and the first time I awkwardly asked where to put it? To that they jokingly replied “Oh, look he brought us a present, liquid gold….” I think I blushed a little…..