So many of you have asked for updates on what is going on
with Billy. Oh, how I wish I knew how to answer that! This whole situation has
been beyond frustrating. Every time we think we will get answers, we are just
left with more questions.
I am diagnosing myself as “Chronically
Confused”
He went in on May 5th to have what was left of
the Carcinoid Neuroendocrine Tumor in his stomach removed. They also planned to
take a better look at all areas and get more samples to biopsy. He had the
procedure and everything went well. He is really sensitive to the anesthesia
and they did not give him long enough to recover, so he almost passed out while
we were still at the hospital. They checked him over in the ER and gave him
some IV fluids and everything was fine. He recovered quickly and felt good by
the next day.
The week following the procedure, his labs began to trickle
in. All of the labs were ones that I specifically asked Dr. A to do because
they are directly related to gastric carcinoids. He denied my request saying
they would all be normal and were unnecessary. Thankfully, Dr. M called later
and said they would agree to do a few of the test we requested. One test was
his gastric ph. It was taken during his procedure. Normal gastric ph should be
between 1.5-3.5. That allows for plenty of stomach acid to help digest food
properly. Billy’s gastric ph level is 7. That means that his stomach acid is
very low. Now, why in the world would that test be unnecessary? They have been
telling him to take antacids for years even though he has told them that they
don’t help and sometimes even make things worse. You would think that measuring
gastric ph would be standard when people are complaining of symptoms related to
it. For more information on the effects of low stomach acid, click the link
below:
Next, we found out that his Gastrin levels were elevated.
The normal range is from 0-100 pg/ml and his fasting gastrin was 646 after he
had the procedure on the 5th. Even tiny Neuroendocrine Tumors can produce large
amounts of gastrin, that is why this test is relevant in diagnosing carcinoid
tumors. However, Gastrin can also be elevated in other conditions. Sometimes,
when the stomach acid is too low, the body will produce more gastrin to try to
stimulate production of more stomach acid. For more info on Gastrin, click
below:
or
Dr. A said he believed that Billy had Autoimmune Atrophic
Gastritis. Antiparietal Cell Antibodies were elevated confirming his
suspicions. This type of gastritis is rare and is considered a precancerous
condition because it significantly increases the risk of stomach cancers and
may be responsible for the development of carcinoid tumors. For more details on
that, here is a link with information:
On top of that, due to his history of Vitamin b12 and d3
deficiency in the past, along with all that he is currently dealing with, Dr. A
said that he likely has Pernicious Anemia. It is a condition caused when the
body does not make enough red blood cells because it isn’t able to properly
absorb vitamin b12. I asked years ago what was causing his vitamin
deficiencies, but none of his Doctors were ever concerned or able to tell us
why. He has been taking supplements for years and they have been keeping his
vitamin levels at the lower limit of the normal range. If you are interested in
learning more about Pernicious Anemia, you can read about it here:
One of the best tumor markers for carcinoids is Chromogranin
A (CgA). Not everyone with Carcinoid Cancer has elevated CgA, but it is still a
good test for checking tumor load and recurrence. The normal range for CgA is
0-5 nmol/L. Billy’s level was high at 7. While his CgA is elevated, I don’t
think it is extremely high or indicative of a metastatic cancer. That being
said, we have not gotten any real explanations for his Doctors, so the only
information I have is what I have researched myself. If you are interested in
learning about Chromogranin A, click below:
Dr. A basically said all of the labs were acceptable and
that they were not diagnostic of carcinoids. He said Billy has Pernicious
Anemia with a lack of stomach acid, Crohn’s Disease, and Autoimmune Atrophic
Gastritis associated with the carcinoid that he still says is not Cancer.
Although, two other resident doctors have called it Cancer.
Some of the problems he is having could be related to Helicobactor
Pylori. I thought they normally checked for it while examining the biopsy
samples, but there was nothing mentioned about it on either pathology report. I
requested they do a blood test to screen for it last time we were there. We
have not gotten the results of that test yet.
There is a bit of good news regarding his most recent labs
from May 12th. All of the liver tests that have been elevated the
last few times were all in normal range! Yay! We are thankful for that.
Now that I have more information to work with from the
recent testing, I feel comfortable that the Neuroendocrine Tumor they originally
found was a Type 1 Gastric Carcinoid. That is the least aggressive type, so that
makes both of us feel better.
Now, here is the part
I find most disturbing. The original pathology report confirmed a
neuroendocrine tumor diagnosed from a fragment tissue sample. Dr. M said the
plan was to go in and remove the remainder of that NET on the 5th.
However, Dr. M was not there for Billy’s procedure on the 5th. Dr. A
and another resident supposedly removed the NET and even tattooed the location
like I requested. However, the most recent pathology report does not show any
evidence of a neuroendocrine tumor. I expected it to because they were supposed
to be removing the rest of it. All it showed from the stomach was a Foveolar
Hyperplasia. I read up on that and it is benign and probably caused by a
reaction to the chronic inflammation. Although, several studies suggest that it
could be linked to a higher risk of stomach Cancer. It was completely removed
during the procedure because they must have thought it was the neuroendocrine
tumor. I don’t understand why there was no evidence of the carcinoid if they
only removed a fragment for biopsy last time, and Dr. M said the procedure
needed to be done to remove the remaining part of the tumor. Dr. A says it is
likely that it was all removed during the first procedure in March. I don’t
agree with that. The pathology report said the Neuroendocrine Tumor they got
was only a fragment and Dr. M said the rest needed to be removed.
I am afraid that they didn’t even remove the rest of it
and removed another polyp instead!!!
The Pathology Report from May 5th shows diagnosis
of a foveolar hyperplasia in the stomach and the biopsy of the terminal Ileum
shows chronic ileitis with severe activity and ulceration. Dr. A said it was
difficult to get a good sample for biopsy in the terminal ileum area, so we
still don’t know for sure if that area is free of carcinoids. There was no
evidence of carcinoid from the sample they were able to get.
We had an appointment in the GI Clinic on May 12th
and met with the Nurse Practitioner. We were hoping to get some answers as to
what all of this means and a plan for treatment and follow up. However, she
would not give us any information at all! She told us that Billy had a lot going on and that it wasn't something they see every day and was complicated. She said that Dr. A was over the case
and everything has to go through him. He knew we had an appointment that day,
so I don’t know why he did not leave a written plan for follow up if he was not
going to be there. We requested an appointment with Dr. M and hope to see him
this Friday. He is the original Dr. who told us this was Cancer and he is also
the one who spoke to Dr. A and helped us get a few of the tests that we requested
done. I feel like he at least tries to listen to our concerns and address some
of this as he is able to. I don’t know why he was not there for Billy’s last
procedure. I hope he was not taken off the case since he and Dr. A disagree on
if it is Cancer. All correspondence regarding Billy’s case has to go through
Dr. A, so he may not even allow us to see Dr. M this week. I guess we will find
out when we go.
I continue to send all of his records, labs, and reports to
Dr. Liu in Colorado. They have not called us to schedule an appointment. I
am still not even positive if we need to see a Specialist, but I am sure they
will let me know once they have a chance to review all of his information.
I was able to schedule with Dr. Woltering in Louisiana. His
nurse said we definitely need follow up with a carcinoid cancer specialist.
However, they requested that we bring results of lots of testing that the VA
refuses to do. She said Dr. Woltering would need all of that information to
have a clear picture of how to proceed. I sent her all of the recent tests and
am just waiting to hear back. I may need to cancel that appointment if we don’t
have all of the information he requires. Dr. Liu, in Colorado is still our
first choice and he is also quite a bit cheaper than others, especially if we
end up doing the gallium 68 scan.
SO, now you are up to date with everything we have learned so far. We still
have lots of concerns, unanswered questions, and no treatment or follow up
plan. He has several new and serious diagnosis to deal with… AND we are
concerned that the rest of the neuroendocrine tumor is still in there since it
is evident that what they removed was not it.
We have NO idea what the future looks like or how any of
this is going to turn out… but, we are putting all of our Faith in God… because
He can see the whole picture and will lead us where we need to go.
I can’t even put into words how blessed we have been by all
of your prayers, messages, calls, and cards! We are so thankful for every
single act of kindness that has been shown to us during this time.
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