A few weeks ago I had a CT scan plus
tests for 5-HIAA and chromogranin A
(CgA). The CT scan measures the visible
tumors and is compared against the prior one to see if there are any
changes. The good news is that my
visible tumors as seen by CT scan are stable.
I will be getting an MRI at the end of the month to see my liver tumors
better. I have some small liver tumors
but all of the specialists I have seen since diagnosis think I have reasonably low liver
involvement. This will be my first MRI
so I guess it will be used as a baseline to see how my liver tumors
progress.
In terms of my tumor markers, these are
tests that measure the activity or secretion of hormones by the tumors. The CgA marker is a general measure of tumor
activity. The 5-HIAA test is a 24 hour
urine sample that measures the level of serotonin that the tumors are
producing. In most patients with
carcinoid cancer, the levels of CgA and 5-HIAA are elevated.
Any lab tests (not just tumor markers)
are shown with the result that was measured and a range of what is considered
normal. This is called called the reference range. If you have lab tests over time that are from
different places with different ranges, one can divide the result by the top of
the reference range to see the percentage over or under the range. The CgA
table below shows some of my results from this test since my initial diagnosis
in August, 2010. Before I started
taking Sandostatin, my result was 1,243 when the top of the range was 50. My result was 25 times the top of the normal
range! Once I started Sandostatin LAR,
the results, while still high relative to the range, were much lower, averaging
around 2x the top of the range. Just
after my surgery in September 2013, my CgA level was 43 or half the range; the
following test in January 2014 was at the top of the range. Subsequent tests have been climbing with my
most recent test at 3.38 times the top of the range the highest since just
prior to my surgery. From what I
understand, CgA is a vague diagnostic marker and having this test elevated in
the absence of other symptoms or tumor growth is not enough to take
action. My doctor did not seem too
concerned with this CgA reading, despite the fact that it is rising.
CgA
|
|||
Result
|
Ref Range
|
% Over/Under Range
|
|
8/30/2010
|
1243
|
<50
|
24.86
|
8/15/2012
|
585
|
<225
|
2.60
|
2/14/2013
|
236
|
<93
|
2.54
|
4/5/2013
|
182
|
1.96
|
|
8/9/2013
|
295
|
3.17
|
|
10/4/2013
|
43
|
0.46
|
|
1/15/2014
|
93
|
1.00
|
|
2/13/2014
|
89
|
0.96
|
|
3/14/2014
|
109
|
1.17
|
|
6/5/2014
|
140
|
1.51
|
|
7/10/2014
|
138
|
1.48
|
|
10/1/2014
|
314
|
3.38
|
5-Hydroxyindoleacetic acid (5-HIAA), the
major metabolite of serotonin, is excreted in the urine. This test is more highly specific to
carcinoid tumors. Elevated levels of
serotonin as measured by 5-HIAA are associated with heart valve problems caused
by fibrosis. Fibrosis is defined as an
abnormal condition in which fibrous connective tissue spreads over or replaces
normal smooth muscle or other normal organ tissue. Not too much seems to be understood about the
relationship between serotonin and fibrosis and many people who have high
levels of serotonin do not get fibrosis. There must be some other hormone or process
involved. Nonetheless, reducing the
levels of serotonin, which is a hormone released by carcinoid tumors, is a
major goal of most doctors. Sandostatin
LAR is known to inhibit the release of serotonin.
When I was first diagnosed with
carcinoid cancer in 2010, my 5-HIAA was over 4x the high end of the normal
range (see table below). Despite being
on Sandostatin LAR for about 2.5 years prior to my surgery in 2013, my 5-HIAA
levels remained at that level. When I had
my debulking surgery and about 90% of my tumors removed, my 5-HIAA came way
down to near the top of the reference range.
My most recent test shows a slight
increase in 5-HIAA but nowhere near where it was pre-surgery.
5-HIAA
|
|||
Result
|
Ref Range
|
% Over/Under Range
|
|
9/8/2010
|
74
|
<18
|
4.11
|
2/15/2013
|
33
|
<8
|
4.13
|
1/16/2014
|
7.6
|
<8
|
0.95
|
10/2/2014
|
8.2
|
<8
|
1.03
|
So what does this all mean? I’m really have no idea. I’m glad my serotonin is closer to normal now
that I’ve had surgery. But since I was not having any signs of heart valve
disease or fibrosis prior to surgery, I’m not sure it really matters. I’m not too sure what to think about the
rising CgA but since my doctor is not worried, I won’t be either.