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Author |
Topic: Ct scans and diagnosis |
Adam
Burrell
Member
Member # 426
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Hello all. I'm a 26 year-old father of 2 who feels certain
that I have oropharangeal cancer. I've presented symptoms
for a little over 4 months now. It started with a funny feeling
in the back right side of my tongue, like I had something
growing there. I looked and back past my taste-buds I could
see a small, pencil eraser sized outcropping. I felt it and
it was very soft, smooth and roundish. Slightly pearly in
color. I reached back and felt around on both sides. While
I had a bumpy texture on the other side, the right side was
far more prominent and there were serveral other smaller bumps.
In addition to that, I had a slight pain in the eustation
tube area on the same side, as well as some pain in my jaw
and back of neck/head. I also had some minor periodic hoarseness.
I went to my family doc and he said that besides the fact
that my papillae were prominent, nothing looked abnormal.
I had gone through several periods of this before and it had
came and went so I felt okay. He did a strep test and that
came up positive so we started AB. I didn't quite feel like
the strep had anything to do with this but went ahead and
took the AB. Recheck 2 weeks later said the penicillin didn't
work. Took Keflex for 10 days. Next strep test was neg. I
still had the problems with my tongue. Nodes weren't swollen.
I know this is the worst thing to do, but I went to the internet.
As soon as I put the symptoms in, oropharangeal cancer came
up. I went back to my doctor and told him my fears of this
specific malignancy and he told me that he didn't see anything
that would indicate that. At this point, I was experiencing
some facial "tingling" or numbness on that side. He sent me
to an ENT. I have a very deviated sceptum and nasal polyps.
He put me on a week of steroids for the polyps, said that
the bumps on the back of my tongue were just circumvelli papillae
and that my throat looked fine. He said that my tonsil was
prominent on that side but looked healthy. He ordered a limited
CT of the sinuses and said that looked clear, just that my
sceptum was deviated. My symptoms persisted. My throat was
hurting slightly on that side now and I was feeling the symptoms
more frequently. I do need to note that the symptoms would
almost go away for several days, sometimes almost for a week
only to return later. He sent me back to get another CT, this
time of the full neck and head with soft-tissue contrast.
I had this done on Sept 5. I got the results on the 28th.
He said that all was clear and at the time my symptoms were
subsided so I felt good. I just couldn't believe that I had
been feeling what I had been feeling and not had any problem.
He seemed to be totally unconcerned with my throat at this
point and went back to my nose, saying that even though the
polyps were shrunk he still wanted to do the sceptoplasty
if I wanted it. He said it was simply a matter of comfort.
My symptoms returned a week or so later and I went back to
my family doc with my CT slides. He looked them over and said
that everything was fine. In my mind, however, I was questioning
that due to the fact that this CT was over a month old. I
returned to my fam doc yesterday for a blood test (CBC with
mono spot). Everything looks normal there and I don't have
mono. I was thinking maybe that because my 3 year old son
just was diagnosed with it. My bilirubin count was slightly
elevated but my blood work was otherwise normal. I have now
decided to go see a Head and Neck specialist who seems to
have written alot on the diagnosis and treatment of oropharangeal
carcinoma. I go see him on the 19th of Nov and I'm going to
be very anxious about this. I am glad to have found this forum
if only for the comfort of knowing others who are going through
this as well. I will keep you all posted. Are the CT scans
fairly accurate in diagnosing this type of cancer?
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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Brian
Hill
Administrator
Member # 4
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You certainly have been chasing this thing for a while!! Hopefully
this will turn out to be something benign, but you are correct
in pursuing this until you are completely satisfied that you
have a definitive diagnosis and treatment plan. Our constant
caveat that anything which does not resolve in two weeks on
it's own or with treatment is suspect, applies here. A CT
scan will not diagnose cancer. It will only show areas of
abnormal tissue, but what that tissue is, can only be determined
through a biopsy. Masses that might show up in a CT can be
anything from a benign cyst to the big bad "C". Your choice
to go to a specialist with experience in these types of cancers
was a smart move. Please let us know what he says. You did
not mention much about your potential risk factors for oral
cancers, such as whether you smoke, etc. While not written
in concrete, these factors listed on our oral cancer facts
page are good prognosticators of whether or not you are really
a candidate to join this club... let's hope you are not.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
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Adam
Burrell
Member
Member # 426
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Thanks for the response, Brian. I have indeed been chasing
this for a while. While I'm sure that my doctors are competent,
I just worry that they don't know what they are looking for
and think that my age is going to rule out cancer. Cancer
does not discriminate. As far as my risk factors, I did smoke
regularly, albiet not more than a pack or two a week, from
the time I was 15 until I was 21. I have had a couple of slips
between then and now but have not been a regular smoker since.
I've never been a "dipper" or anything like that. I have not
been tested for HPV but have put myself in the position to
accquire it. I don't test positive for EBV. One of the biggest
risk factors in my eyes is that I have always slept with my
mouth open due to my deviated septum. As far as the CT scan
goes, the report notes that all areas are clear of abnormal
tissues. The only thing noted other than my septum being deviated
is that several lymph nodes in the jugular area are enlarged
but "not pathologically", for what that's worth. I want more
than anything for this to be benign but don't know of anything
else this could be. This is the worst thing I've ever gone
through, Brian. I wake up every morning and it is the first
thing on my mind. I hold my children and hold back tears every
single day, knowing that I probably won't be around to see
them grow up. My son loves me more than anything in the world...I
am his world and it is killing me knowing that he's going
to have to grow up without a dad like I did. I don't have
any hope at this point and I feel like I'm just wasting time
waiting for this appointment. I'm angry that my doctors haven't
taken action on this. My ENT is supposed to be a very highly
regarded doctor. I'm thinking about going to an oral surgeon
before my appointment with the otolaryngologist. I will keep
you informed and will keep praying that I don't join this
club.
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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Packer
66
Platinum Member (100+ posts)
Member # 96
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I know this is really a scary time for you, and I can feel
your fear.......but if it is cancer, there are a whole lot
of survivors here, who are beating the odds......your young
and healthy, and that sure is a plus....the waiting and not
knowing is the worst, but you`re doing all the right things..........Many
Prayers your way........Packer
Posts:
147 | From: Maine | Registered: Apr 2002
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Adam
Burrell
Member
Member # 426
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Thank you very much for your kind words of encouragement,
Packer. Thank you too for your prayers, as they are much needed.
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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Brian
Hill
Administrator
Member # 4
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While you have some things which are obviously not right and
hopefully you will receive a more finite diagnosis in the
near future, I believe that you are going beyond what is appropriate
emotionally right now. You do not have a diagnosis of cancer...talking
about the fact that "he (your son) is going to grow up without
a father" is putting too much to this, too soon emotionally.
There are many things this could be other than cancer, and
since you are not qualified to come to a diagnosis yourself,
you will have to trust in your doctors to find out what this
is. That does not mean that doctors cannot be wrong, it means
that if the ones you are seeing can not provide you with a
conclusive answer to what is going on, you will have to continue
your quest to find someone who can. Also regarding the CT
scans, a two month old CT is not that far out of date in the
world of oral cancer, and even in those with mid stage OC,
the rate of progression of the disease is unlikely to show
up differently in two CT scans two months apart. Only when
a patient is in very late stages with massive numbers of active
cancer lesions, or those of very large size do you see rapid
movement in film of progression. Clearly given the radiologists
report you are not at this stage. Lastly, sleeping with your
mouth open is not a risk factor for oral cancer. It could
however lead to other chronic conditions that may affect you
if there is something which provides a constant irritant to
the tissues of your oropharynx. Try to keep a balanced perspective
here. Letting your mind wander to death is way ahead of where
you are. Even with a diagnosis of cancer, this disease can
be defeated, as many of us here can demonstrate......
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
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Adam
Burrell
Member
Member # 426
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Brian,
Thanks again for your words of encouragement. I have been
back and forth on this emotionally. I will go weeks feeling
confident and strong enough to handle any outcome. During
these times I feel as though I could handle the fight with
an optimistic approach. I felt okay after my CT consult when
they said the CT was clear. I still had my concerns but figured
they knew what they were doing. Then the symptoms came back
and I sunk back into this. It's tough because I'm typically
a very optimistic person but I haven't been given any reason
to be. Noone can give me an alternative as to what this could
be and all of my symptoms point to this. I made an appt with
an oral surgeon for tomorrow morning. It is just a consult
but will at least give me another shot at some sort of direction.
It will give me some more information to take to my otolaryngologist
next week. The weirdest part about all of this is the inconsistancy.
2 years ago, I started getting this blister in the soft palate
(the back top of my mouth) It would swell up and then burst
after a few days. It seemed to happen whenever I would eat
or drink certain things. I went to my doc who sent me to an
oral surgeon for a biopsy. He didn't even do the biopsy because
when he took a first look at it, he said that it was a blocked
salivary gland and there wasn't anything he could do that
it would work out on it's own. I was very relieved but irritated.
I got them in several other areas of my mouth during the course
of the next 2 years but they would just come and go. This
one would always pop up in the same spot. The funny thing
is, after 2 years, this stopped happening at the same time
that the tongue thing started up. This comes and goes as well
but doesn't seem to blister, as far as I can tell. It does
seem to be more swollen at certain times. Its never swollen
during the night or when I first wake up. I can reach back
and see and feel the ones on my tongue..they are about the
same color as the rest of my mouth and feel like sacks or
something...smooth round sacks. The one, if it is the same
thing, further back in my throat below my jaw I cannot reach
or seem to feel. The thing that really bothers me is that
no doctor has ever done a laryngoscopy (I guess that is what
it is called). My ENT inserted something into my nostril that
allowed him to look in and at the back of my throat. He simply
relied on that CT scan and I don't think that was wise. I'm
sure this specialist will do more. And to give my ENT some
credit, my throat simptoms had subsided by the time the CT
consult came so he really didn't have any reason to do any
more and he might have done a laryngoscopy if I was still
feeling bad. I'm sorry to keep on and on about this it's just
that I've been looking for an outlet like this for months
now and I appreciate that you know my fears and will listen
to me. I'm driving my wife crazy and it is only scaring my
mom. One other thing to note, I've noticed that when I grit
my teeth on that side, I hear a crunching sound and a popping
sound when I open my jaw, only on that side. I asked my ENT
about TMJ as my mom had that and he said no. I do still have
my wisdom teeth and they haven't been bothering me. Oh well,
I've rambled long enough. What was your first symptom?
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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Brian
Hill
Administrator
Member # 4
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I'll leave you a longer post later, but in the meantime use
the message board search engine and fine the posts on mucoceles
(without the s at the end) This will likely give you some
information about those little smooth round things that have
come and gone in your mouth over the years. Also as far as
exams go, getting your throat and larynx as well as the nasopharyngeal
area examined with a scope is a pretty comprehensive exam.
Most oral cancers will show up this way. Did you get any blood
work done? A CBC will show up infections if that is what you
are fighting. That poping noise is the articular disc in your
TMJ...given your posts here, I would guess that you are also
a bruxer...(tooth grinder) and over a period of years, the
articular disc can become perforated causing that noise and
eventually discomfort. I do it too. A night guard will prevent
this from getting worse. More later.
--------------------
Brian, stage 3 oral cancer survivor. OCF Founder and Director.
"The first responsibility of a leader is to define reality.
The last is to say thank you. In between, the leader is a
servant."
Posts:
366 | From: Laguna Beach, CA | Registered:
Mar 2002 | |
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DaveC
Contributing Member (25+ posts)
Member # 308
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Hi Adam:
I was struck when I read your earlier posts and honor the
intense anxiety you are feeling but agree with Brian that
trying to maintain perspective is important also. It truly
sounds as though you are covering every conceivable base,
and provided the health care providers are credible and have
a comfort level diagnosing oral cancer, it does sound like
no news is good news.
Most oral lesions take approximately 24-30 months to develop
so a CT scan from a couple of months ago is still a valid
study(as long as it is read by a credible radiologist).
You seem to have a variety of symptoms that may or may not
be related and/or dangerous.They also sound like they could
be related to infection, inlammation, trauma, or TMJ s/s among
other things.
I do agree that it is scary to "find things" and worry what
they are...my partner, Dave, is currently recovering from
having a tonsillar lesion removed. Over the last couple of
months, I have had many canker sores and breaks in my mouth
and on my tongue which I think are the result of grinding
and biting during sleep due to my major increased anxiety
over Dave's situation. I do catch myself worrying frantically(and
looking in the mirror) that it's "something" because of my
heightened sensitivity toward oral cancer. I will ask my dentist
when I go next week to take a look so I am prudent.
However, it is also important to choose and stick with practitioners
you can trust and go in peace out of their office if they
tell you that everything really does look okay.
Best,
Kim
Posts:
30 | From: MA | Registered: Aug 2002
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Adam
Burrell
Member
Member # 426
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DAVEC - Thanks for your understanding.
Just wanted to let everyone know that I went to an Oral Surgeon
last Thursday to get him to look at the bumps on the back
of my tongue, where all of this seemed to originate. He concurred
with all of the other docs I have seen and said that they
were circumvelli papillae - large taste buds. I felt fairly
confident as he gave it a good look and seems knowledgable.
He also took a panoramic x-ray of my teeth and said that I
have some major paradontal disease and need to have that taken
care of immediately, as well as my wisdom teeth extracted.
I also brought my CT scan slides with me and he took a breif
look at them and told me, as Brian did that if there was a
cancer of lymphatic tissue, it would light up in the CT scan.
My concern is that the cancer I fear is in my throat, under
my tonsils, not in lymphatic tissue and might not have been
seen in the CT. Anyway, I am going tomorrow to an otolaryngologist
and am pretty tense about it. My CBC came back fine, by the
way. My bilirubin count was up which my doctor said could
indicate a false negative on the mono test. He wants to get
another mono test. I am most interested in what this specialist
has to say. I will keep you guys posted. I had a particularly
bad "flare-up" yesterday evening. I had had a pretty good
day, just a faint feeling that "something was there". Same
with Thursday and Friday. Then for about 2 hours my right
jaw and the right side of my throat were in pain. Felt like
pressure, that if I bit down hard enought it would releive
the pressure but it didn't. Just as fast as it came, it eventually
went away. Just out of curiousity, is this a common thing
with a tumor? Would the pain come or go or be fairly constant?
Does cancer flare up every now and then or is it a constantly
progressing pain/discomfort?
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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Adam
Burrell
Member
Member # 426
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Just wanted to check in. I went to my otolaryngologist yesterday.
He was very nice and had a great bedside manner. I took my
CT slides with me. He said they look great, did a direct laryngoscopy
and felt around on both sides. Everything checked out okay.
He suspects glossopharangial neuralgia but needs to rule everything
possible out. He is going to schedule an MRI as he said that
makes for a better look of soft tissue. I'll keep you posted.
I'm starting to feel a little more hopeful about this. I just
can't believe that nothing can be seen back there. I feel
it, for sure. I guess if it is a nerve condition, I can understand.
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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Joanna
"Above & Beyond" Member (200+ posts)
Member # 41
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That is very positive news, Adam, and I can speak for everyone
here when I say we are happy for you. Ours is a club you most
definitely do not want to join. Nerves are tricky things.
I know after the surgeons got done in my mouth, I would swear
I was sticking my tongue out, when it would not have moved
at all. Not the same thing, but I do know that something you
"feel" may not be there at all, which would be great news.
Hang in there!
Joanna
Posts:
213 | From: Pacific Northwest | Registered:
Mar 2002 | |
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JetAgeHobo
Member
Member # 443
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Adam, Joe Nameth once said the scariest part about having
pain is not knowing what's causing it. Sounds like that's
what you are going through, and you've managed to focus on
the possibility of having cancer.
Good thing from all this is that you've managed to uncover
other things, like the deviated septum problem, etc.
After I read the part that there might be wisdom tooth problems,
as well as periodontal issues, I immediatly went back to my
own problems with my wisdom teeth and rememberd that some
of the pain caused by the tooth showed up in totally odd places,
and would start arguments between myself and my doc. Turns
out there's a lot of nerves in that area, and the pain follows
the nerve.
I know it's real difficult, but don't let the unknown cause
you to loose sight of the big picture. Sounds like everyone
has told you some pretty positive things so far. Keep the
spirits up. Bob
Posts:
5 | From: Southern China | Registered: Nov
2002 | |
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Adam
Burrell
Member
Member # 426
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Just wanted to post an update. I had an MRI of the neck done
on Nov 27. It was a soft tissue study. There was nothing remarkable
about the scan. SO, this alleviates my fear of throat cancer.
Now I go back on the 17th to my otolaryngologist to look at
the next step. I'm thinking that next they will probably do
an MRI of my right jaw/face. Perhaps they will do an MRI of
the sinus. I know I had a CT done there but MRI appears to
be much more defined. My suspicions are starting to turn to
either a problem with my teeth or salivary glands. I'll update
you all when I find something new! Be blessed and I'll keep
you all in my prayers.
Posts:
9 | From: King George, Va | Registered:
Nov 2002 | |
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kcdc
Platinum Member (100+ posts)
Member # 307
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Hi Adam:
Great to hear from you again. I've been following all of your
posts and while I regret that you don't have a definitive
diagnosis as yet, I am pleased for you that no news is good
news.
Please keep us posted.
Best,
Kim
--------------------
kcdc
Posts:
127 | From: Boston, Ma | Registered: Aug
2002 | |
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