The results are in. And if you remember back to
what I went through initially with my thyroid a little over a year ago, then
you may as well just stop reading now because it's déjà vu…
At my one year post-diagnosis appointments, the nodules in my lungs were
stable. And so was my thyroid. Both great things to hear! However, my thymus
gland showed up on the CT scan double the width it was on the previous scan
back in March. My endocrinologist alluded to it briefly, but was quick to note
that it was out of her league. She did say was that it could: 1. Be the cancer metastasizing 2.
Rebound thymus hyperplasia (enlargement as a result of the radiation) 3. An
autoimmune disease called myasthenia gravis (weakening of voluntary muscles throughout
the body) or 4. Some other unknown problem. She would be sending my scan to a
thoracic oncologist to view, ordered additional blood work for myasthenia
gravis, and would call me with the update and the results of all my blood work
the next week.
Fast forward to last week when she called with my results. I was
substitute teaching in a Kindergarten classroom that day, so it wasn’t the best
timing to take a serious phone call. But we managed to quickly cover things
while I had a brief minute. My doctor told me that my tumor markers were
undetectable (a good thing), no antibodies were present for the
autoimmune disease (another good thing), and that the thoracic oncologist said that my thymus could
be relatively “normal” in size for someone my age. She then went on to say, “We
will just follow it over the next year and see how things go.” Right then I
froze. Those same magic words were what I was told when my thyroid tests kept
coming back inconclusive a little over a year ago. Long story short, I have
very little trust in the whole “let’s just follow things” plan. But like I
said, I was teaching and was not in the right medical mindset to process our
conversation.
Late that afternoon as I was driving home, I replayed our discussion. I
paused again. If the CT scan of my thymus from January could possibly be
“normal”, then why did it double in size over the past 10 months? It doesn’t
make any sense for a doctor to say an enlargement of the thymus gland is
“normal.” Brief physiology lesson:
your thymus produces the immune system cells in your body. This process
takes place from the time you are born until your late teens. At that time, the
thymus gland (sitting directly behind your sternum) starts to die off or
shrink. With that being said, I instantly knew there was no way the new
thoracic oncologist had known of the first CT from last March. As soon as I got
home I was on the phone with the med center scheduling an appointment with this
new doctor.
Ok. If I haven’t lost you yet, now fast forward to yesterday when I had
my appointment with this thoracic oncologist. One of the very first things he
said was that he did not know there was a previous scan to compare to until I
made the appointment. (I knew it.) He went on to say that nothing yet looked
too alarming, just not normal either. His recommendation was to rescan in April
and then again in July. Next at 1 year. A year and a half. And then finally at 2
years. If all of those came back stable, then I would be in the clear as far as
the thymus goes. I smiled and said that I respected his opinion, but was not
comfortable with his plan. I went on to explain that a year ago my ultrasound
was inconclusive, so were my thyroid biopsy results, then they told me my
chance of having cancer was less than 20%, and finally the plan would be to
“follow things again in a year.” Had I agreed to that plan back then, today the
thyroid cancer would have no doubt been all throughout my lymph system or in my bones and lungs, as it was already spreading outside of the gland capsule at the time of
surgery in January 2012. He understood my concern and said he would gladly
perform a biopsy if that were my wish. This was not an easy question to answer.
To biopsy the thymus, I would be given an epidural for the pain initially, put
under general anesthesia, incisions on my left side along the rib cage and
below the breast. While keeping me under, they would send my tissue to
pathology to examine. If it turned out to be suspicious, they would proceed
with a couple more incisions and remove the entire gland. Either way, biopsy or
full excision, recovery is not the greatest. A chest tube would be inserted and
monitored in the hospital for a couple days. I would then be sent home for a
week of recovery, followed by 3 weeks of additional recovery until I was back
to “normal.” Now you see why his question was not an easy one to answer.
I asked him if we could combine the two options. I want to have things
figured out before I start PA school this Fall, because the last thing I want
to happen is to experience complications a year from now while I’m studying my
life away and can’t be absent for a large chunk of time. But, I also don’t want to
rush into anything if it’s medically unnecessary. He thought that sounded like
a good plan. So here is what we decided:
In April I will return for a CT scan on a Tuesday. If there are more
changes then I will go into the OR the next day. I am scheduled tentatively for
surgery that Wednesday just in case. However if the scan is stable, then we
will repeat this same process in the middle of June in time for potential
recovery before I report to school in late July. So. All is set unless my
symptoms progress. These being increased shortness of breath, more wheezing,
extreme fatigue, or more continual chest pains. In that case, I would need to go in for the biopsy sooner.
Another suspicion of mine is that I was told the left side of my thymus
gland is larger than the right. This would mean I would have the incisions on
the left side of my body during the surgery. If the enlargement was truly
because of rebound hyperplasia post radiation, then the gland should ideally enlarge
overall, not just more so on one half. And coincidentally or not, the left half
of my thyroid was where the cancerous nodule was located...
We finished our conversation with my question of, “What could you find
while you were in there operating?” The oncologist responded that there’s
always a chance the thyroid cancer had metastasized, but that was rare.
Myasthenia gravis is an option but also rare. The main thing seen in regards to
the thymus would be a diagnosis of lymphoma. Which in that case, they don’t
typically take the entire gland. Instead, radiation and chemotherapy are
started.
Yikes. That was a lot of medical jargon. Hopefully I didn’t leave your
head spinning. I did my best to provide enough detail that you understood, but
not too much that it became a total mess. Basically, I play the waiting game
some more. Like I mentioned in the opening paragraph, this is a mirror image of
what I first went through trying to figure out what was wrong with my thyroid. Déjà vu. And while it is extremely frustrating, it’s one of those things that no matter
how upset I get, or how much I choose to research medical journals online,
things will not change. So instead, I am putting it all behind me and enjoying
the start of this Lenten season. I took full advantage of Fat Tuesday
yesterday. I’m giving up popcorn again this year (seriously not sure what I am
thinking), along with sweets. And then a few lifestyle changes to enhance my
faith life. It’s safe to say I am already experiencing withdrawal symptoms from
not having any popcorn today. I’m officially an addict!
Oh. And little fun fact. When I got back into town from my appointment yesterday, I was quickly eating some quinoa salad before going into the clinic for work, and all of a sudden I crunched down on something sharp and hard. Only to find that one of my far back molars had chipped off in the corner! My dentist told me to come right in so she could smooth it out. Icing on the cake, right? All I could do was roll my eyes and laugh…I’ve NEVER had any problems with my teeth. What a day! Glad it’s over :)
I hope each of you have a wonderful Valentine’s Day tomorrow! My bible
study is reading The Purpose Driven Life, and a recent chapter fits perfectly
with tomorrow’s holiday:
“Your
time is your most precious gift because you only have a set amount of it. It is
not enough just to say relationships are important; we must prove it.
Relationships, not achievements or the acquisition of things, are what matters
most in life. Let love be your greatest aim. And the essence of love is not
what we think or do or provide for others, but how much we give of ourselves.”
xoxo
