I might have good news…
I think?
I explained the conversation that the resident doctor had
with Billy in my previous post. He had it on speaker phone, so I know exactly
what the doctor said. When Billy specifically asked for confirmation that it
was Cancer, he said almost word for word “technically, it is Cancer… but, it is
small and we should be able to remove it during another endoscopy. If it is
removed, it is not like the scary cancers where you need chemo and radiation.”
Then, after we looked up Neuroendocrine Tumor Cancer and saw that it was rare,
and in fact very scary… it got REAL really fast!
I still couldn’t access the pathology report online because
they put a 14 day hold on it. However, I looked at his records again. I saw
where they apparently mailed him a letter with the results of the upper and
lower endoscopy. It showed the possible Crohn’s Disease. Then, it said there
was a “mild abnormality” on the upper scope test. That is where they found the
tumor. Wait! What? How could cancer be considered a mild abnormality? I
continued to look through his records and saw where the resident doctor
documented that he called and told Billy about the Neuroendocrine Tumor and
told him he needed the CT which is scheduled for Friday. There was another note
from him to an office assistant asking her to call and schedule a repeat EGD to
remove the Neuroendocrine Tumor. They called and I scheduled that appointment
for May 5th. Then, I found an entry from the surgeon who sent the
letter we haven’t received yet, showing only the possibility of Crohn’s and the
mild abnormality. His note said “as expected biopsies unhelpful.” Seriously?
How can a biopsy be unhelpful if the resident doctor said it was Cancer? How
can Cancer be considered a mild abnormality?
Hopeful and confused, I sent a message to the surgeon
explaining the situation and asked for clarification. I know 100%, without a
doubt, that the resident confirmed that it was Cancer. The surgeon’s response
message said that it was not Cancer, but was a Neuroendocrine Tumor/
Carcinoid, and most were very benign. He insisted that the resident didn’t need
to be as aggressive with his follow up plans as he was and we could have waited
a few months before scheduling the tumor removal. That made me wonder why we
would even need to have it removed within a few months if it were harmless. He
said that they may have even gotten the entire tumor last time. (This is also
in conflict with the resident who said they only removed a sample fragment for
the biopsy) The surgeon ended his note by saying that the CT would help them
evaluate the Crohn’s Disease and will also give them more information about the
tumor in his stomach. He included the actual pathology report. (Finally, thank
goodness)
I have been looking at the pathology report and things are
becoming as clear as mud. It says the stomach specimens taken were 4-5mm (the resident
said the NET was about 1cm, so clearly the whole thing was not removed last
time) The report diagnosis is a well-differentiated neuroendocrine tumor. It
does NOT say that it is a malignant tumor.
When I looked online, I couldn't make sense of it. Looking at the
report, and reading the surgeons report, I wasn't convinced that it was Cancer.
On the other hand, IF the surgeon knows it is definitely not cancer, then why
does he need the CT to get more information about the tumor? My original thought
was that maybe it has precancerous cells or potential for malignancy. It showed
the ki-67 index was less than 1%. I didn’t know what that was. I looked it up. Ki-67 is a protein in cells that
increases as they prepare to divide into new cells. A staining process can
measure the percentage of tumor cells that are positive for Ki-67. The more
positive cells there are, the more quickly they are dividing and forming new
cells. The higher the percent Ki-67, the
greater the risk of an adverse outcome. (https://www.questdiagnostics.com/testcenter/testguide.action?dc=TS_Ki-67) His score is really low, which is awesome if I
understand things correctly. When I look at some sites and studies online, it
appears that it could possibly be a very low grade, slow growing cancer in the
early stages… which is still great news! I am not a Doctor and the NET Cancers
are really confusing. I don’t know what to make of it. The surgeon said the
resident was more aggressive in the follow up planning than he would have been, and we could have waited a little
while to schedule to have the tumor removed, but he didn’t suggest we cancel
the upcoming appointment or move it to a later date.
In reading about the pathology, I don’t believe they received
enough data to diagnose accurately. If they did, all of the information was not
listed in report.Did I mention that I over think and over analyze everything? This time is even more serious since it is my husband’s life at stake here! I spent hours studying the most overwhelming and confusing information I have ever tried to understand. My conclusion is that doctors do not all agree on what neuroendocrine tumors are malignant. Apparently, diagnosis can be quite difficult. According to The American Cancer Society, “It might not be possible to tell a benign tumor from a cancer when it is localized because the cells can look the same under the microscope. Any tumor that spreads, though, is a cancer (by definition).”
One publication on the National Center for Biotechnology
Information website concludes that tumors of the gastrointestinal tract are
varied and can be a diagnostic challenge. It said that the distinction between
benign and malignant carcinoid is based on the presence or absence of metastasis.
In our case, we have no idea if there are other tumors. The abdominal CT will
show areas that they couldn’t see with the scope. We are praying for no other
tumors anywhere!
In
contrast to what his surgeon said, Mayo Clinic says that “Carcinoid tumors are
a type of slow-growing cancer that can arise in several places throughout your
body. Carcinoid tumors, which are one subset of tumors called neuroendocrine
tumors, usually begin in the digestive tract (stomach, appendix, small
intestine, colon, rectum) or in the lungs.” http://www.mayoclinic.org/diseases-conditions/carcinoid-tumors/home/ovc-20164792
I
could tell you about a hundred different sites and experts who have conflicting
opinions about this particular type of tumor. Obviously, the two doctors that
did the scope procedure and read the pathology report did not come to the same
conclusion either. According to one of his doctors and many different other
sources, he has a cancerous neuroendocrine tumor. However, the other doctor
disagrees and there are many other sources that say that this is not yet
considered cancer. Who is correct? I have no idea!
Here
is what I do know. This Cancer is rare and can be scary. It is usually slow
growing, but isn’t often found until it has spread. Because of that, I think
the prognosis and survival rates may not reflect the outlook of cases caught
early on. My understanding is that malignant and benign NETs can look the same under
a microscope. Therefore, until it spreads some Doctors won’t say for sure that
it is/was Cancer. By then, it is too late to do anything but treat it. Other
Doctors and medical institutions maintain that these carcinoid neuroendocrine
tumors are in fact Cancer, but that most are slow growing. They do have the
potential to spread to organs and other parts of the body. In advanced stages,
they can cause Carcinoid Syndrome and other life threatening complications that
are not cancer related. The bottom line is that this is serious stuff. Experts may not agree on what to call this rare tumor at this stage in the diagnostic process. From all that I have read and after seeing the crazy confusing pathology report myself, I believe that he has a low grade, slow growing Cancer. I also believe that all of his other concerns from the inflammatory bowels issues and lab tests led him to do the scope procedures that he would not have been likely to do for another 10 years otherwise. Coincidence? I don’t believe in that. I know that God prompted us to pursue this further. If you know Billy personally, you know that he does not go to the Doctor, take medications, or even consider invasive testing. Yet, he knew something was wrong and needed to be done. I am praising God for that!
I
don’t know what the CT Scan is going to show. I don’t know what they will find
when they remove the tumor. I do know that God has been right here with us the
whole time and He isn’t ever going to leave us. I am choosing to believe that
this tumor can be removed, that there are no others anywhere in his body, and
that nobody will ever say the “C” word to him again.
This
is not something that we will ever be able to forget or walk away from. We will
have to monitor it for the rest of his life. The National Comprehensive Cancer Network recommends that all patients with
carcinoid tumors be re-evaluated 3 to 12 months for at least 7 years.
It has been an emotional
rollercoaster for sure. How can there be so many highs and lows in only a few
short days (feels like the longest days of my life)? We still don’t know all of
the details of what is going on. Obviously, there are conflicting expert
opinions surrounding this whole issue. It may be Cancer. It might not be. If it
isn’t Cancer, it could become Cancer. There are lots of “what ifs” right now. I
am the what if queen, but these questions aren’t coming from me. I know I am
not an expert. Science and math were my least favorite subjects in school. The
terms are technical, and my mind doesn’t easily comprehend those types of
things. However, it isn’t just my lack of knowledge or understanding because the
medical community seems to be confused as well.
We are nowhere near the
end of this journey. If the CT scan doesn’t show any other areas of concern,
and they are able to remove the tumor with no issues, there will still be
scans, tests, procedures, and likely follow ups and monitoring for years to
come.
I don’t have answers to
my questions. I don’t know if there are other tumors. I don’t know exactly what
is going on. The unknown is scary. Cancer is scary. Rare tumors that create
life threatening problems are scary. Do you know what is worse than that? Not
having hope is worse. Not having God to comfort us and give us peace is
terrifying. I experienced two days of torment because I let my fears control
me. It felt like Hell. I don’t mean that figuratively. I believe that Hell is a
literal place. I can’t imagine eternal pain like I felt. Yet, I am sure it will
worse than the absolute worst days of my life. Separation from God alone would
be unimaginable. I am thankful that I know that I will spend eternity in Heaven
because of my faith in Christ. I know some people think my beliefs are just some
fantasy that is fine for me, but not based on evidence. I don’t know much, but
I know He is real. I have never been as sure of anything as I am of that. If I
didn’t believe it, I just don’t think I could survive this world.
Nothing has really
changed. The tumor is still there and threatening. Experts disagree about when
to consider these types of tumors malignant. When it spreads, they agree that
it is Cancer. When it is localized, some say it is and some say it isn’t. Nobody
disagrees that it needs to be removed and that further tests are required. So,
we will wait and pray. We are still praying for the exact same thing as before…
that the CT Scan will not show any other tumors, that it can be removed
completely, and that he will never have another one. Our God is able!!
2
Corinthians 9:8
And
God will generously provide all
you need. Then you will always have everything you need and plenty left over to
share with others.
None of us can see the
road ahead. All we can do is trust God to help us navigate and just enjoy the
journey.
Even If- MercyMe: Click to listen
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