Just diagnosed, post-surgery

Hi all;

Mine's kind of a twisted story, but I'm sure there are others out there
who went through the same thing:

A year and a half ago, I noticed my hearing in my right ear wasn't what
it used to be. After procrastinating for months, 'cause I figured it was
"just" impacted ear wax or "just" a cold, I went into the doctor's. After
a bunch of "Hmm, that's interesting"s, they said there was a growth in my
ear and they were sending me to an ENT.

So off to the ENT in Pembroke (I live in NorthEastern Ontario, Canada),
he tells me its Glomus Tympanicum, but he's seen it excactly once before
- In med school - and he wasn't going to touch it (He said it more nicely
than that - I'm paraphrasing) - So off to the ENT in Ottawa. So after
some much delayed scans, X-Rays, MRI and CT, they tell me it's Glomus
Jugulare - A non-malignant, non-cancerous tumour in the jugular foramen.
Again, they say it's non malignant, non-cancerous; They're going to
operate, just don't know when.

Anyway, after a *year*, they operate and take the thing out. What was
supposed to be a ten hour surgery ended up being 16 and a half hours.
Getting through two weeks in the hospital was rough, to say the least; My
facial nerve has a graft, 'cuz the tumour had infiltrated it thouroughly
(so my right side of my face is completely dead), I couldn't swallow,
because of the stretching of all the other nerves and a bunch of other
things. To make a long story short(er), I learned to swallow, to the
surprise of everyone in the hospital (No, Marc, you'll be going home with
a G-Tube, but we have to give you a chance with the NG tube to see if
you'll do it on your own, but don't count on it) and I got to go home.
Have to take it easy for two months, no lifting of more than ten lbs,
because of everything they did (Basically, opened my head and dug around
with an ice cream scoop).

So I had my follow-up with the ENT last Thursday. Expected to go in and
have him say "You're doing great! I'll see you in six months". Instead,
what he tells me is "Well, Mr Bissonnette, the reason it took so long for
your operation is that the tumour you had was not only non-benign, it was
very aggressive. We took out several lymph nodes, a bunch of bone and did
a bunch of other stuff in there. Yes, it's cancer."(Again, I'm
paraphrasing).

Crap.

Took it pretty well in the Dr's office. Had a couple of "moments" outside
his office and in the car with my wife. He told me that this type of
cancer is so bloody rare he couldn't personally think of another case
excactly like it in Canada, from his recollection.

I got my cancer package in the mail yesterday from the Ottawa hospital.
Me. I got it. *I'm* not supposed to get this, someone else is. The
Canadian Cancer Society is something you make up excuses for at the door,
not something you suddenly look at for a life-line. (To be honest,
though, while I may have never given money to Cancer.ca, the Terry Fox
foundation has usually gotten a few dollars from me each year - Now there
was a hero).

This sucks.

I have my first appointment with the cancer centre tomorrow. Me. Going to
see an oncologist. I got lost in the cancer centre once taking my
daughter to CHEO for her diabetes appointment. Now *I'm* going there.

Sigh.

Anyway; I'm not really a bitter person and I certainly don't complain a
lot (My wife might tell you differently, but what she hears and what the
world hears are two different things ) I've been a Usenet junkie for
almost 20 years, now, though I don't think I ever checked alt.support.*
for much, even though I have two special needs children out of three.

I'll stop writing now, but I feel better for ranting

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Marc Bissonnette wrote:

> < gentle snip>
>
> So I had my follow-up with the ENT last Thursday. Expected to go in and
> have him say "You're doing great! I'll see you in six months". Instead,
> what he tells me is "Well, Mr Bissonnette, the reason it took so long for
> your operation is that the tumour you had was not only non-benign, it was
> very aggressive. We took out several lymph nodes, a bunch of bone and did
> a bunch of other stuff in there. Yes, it's cancer."(Again, I'm
> paraphrasing).
>
> Crap.
>
> Took it pretty well in the Dr's office. Had a couple of "moments" outside
> his office and in the car with my wife. He told me that this type of
> cancer is so bloody rare he couldn't personally think of another case
> excactly like it in Canada, from his recollection.
>
> I got my cancer package in the mail yesterday from the Ottawa hospital.
> Me. I got it. *I'm* not supposed to get this, someone else is. The
> Canadian Cancer Society is something you make up excuses for at the door,
> not something you suddenly look at for a life-line. (To be honest,
> though, while I may have never given money to Cancer.ca, the Terry Fox
> foundation has usually gotten a few dollars from me each year - Now there
> was a hero).
>
> This sucks.
>
> I have my first appointment with the cancer centre tomorrow. Me. Going to
> see an oncologist. I got lost in the cancer centre once taking my
> daughter to CHEO for her diabetes appointment. Now *I'm* going there.
>
> Sigh.
>
> Anyway; I'm not really a bitter person and I certainly don't complain a
> lot (My wife might tell you differently, but what she hears and what the
> world hears are two different things ) I've been a Usenet junkie for
> almost 20 years, now, though I don't think I ever checked alt.support.*
> for much, even though I have two special needs children out of three.
>
> I'll stop writing now, but I feel better for ranting

Canadian ranters are highly valued around these parts.
That's because Steph's a one-liner type of guy.
Maybe he's heard of others with glomus jugulare.
I've only heard of one - 3 or 4 years ago, on (these cancer) newsgroups and I
think hers was benign.

I"m happy to hear you've taught yourself to swallow.
I could be wrong but your trip to Ottawa might be to evaluate you for
radiotherapy.
Which might mean that you'll need a mask fitting.

I'm late for supper, so I'll close by saying "welcome, Marc" and I hope
you'll rant here often.
J

Marc Bissonnette <dragnet\_@_/internalysis.com> wrote in
news:Xns9A27A68DD96ACdragnetinternalysisc@216.196. 97.131:

> Hi all;
>
> Mine's kind of a twisted story, but I'm sure there are others out
> there who went through the same thing:
>
> A year and a half ago, I noticed my hearing in my right ear wasn't
> what it used to be. After procrastinating for months, 'cause I figured
> it was "just" impacted ear wax or "just" a cold, I went into the
> doctor's. After a bunch of "Hmm, that's interesting"s, they said there
> was a growth in my ear and they were sending me to an ENT.
>
> So off to the ENT in Pembroke (I live in NorthEastern Ontario,
> Canada), he tells me its Glomus Tympanicum, but he's seen it excactly
> once before - In med school - and he wasn't going to touch it (He said
> it more nicely than that - I'm paraphrasing) - So off to the ENT in
> Ottawa. So after some much delayed scans, X-Rays, MRI and CT, they
> tell me it's Glomus Jugulare - A non-malignant, non-cancerous tumour
> in the jugular foramen. Again, they say it's non malignant,
> non-cancerous; They're going to operate, just don't know when.
>
> Anyway, after a *year*, they operate and take the thing out. What was
> supposed to be a ten hour surgery ended up being 16 and a half hours.
> Getting through two weeks in the hospital was rough, to say the least;
> My facial nerve has a graft, 'cuz the tumour had infiltrated it
> thouroughly (so my right side of my face is completely dead), I
> couldn't swallow, because of the stretching of all the other nerves
> and a bunch of other things. To make a long story short(er), I learned
> to swallow, to the surprise of everyone in the hospital (No, Marc,
> you'll be going home with a G-Tube, but we have to give you a chance
> with the NG tube to see if you'll do it on your own, but don't count
> on it) and I got to go home. Have to take it easy for two months, no
> lifting of more than ten lbs, because of everything they did
> (Basically, opened my head and dug around with an ice cream scoop).
>
> So I had my follow-up with the ENT last Thursday. Expected to go in
> and have him say "You're doing great! I'll see you in six months".
> Instead, what he tells me is "Well, Mr Bissonnette, the reason it took
> so long for your operation is that the tumour you had was not only
> non-benign, it was very aggressive. We took out several lymph nodes, a
> bunch of bone and did a bunch of other stuff in there. Yes, it's
> cancer."(Again, I'm paraphrasing).
>
> Crap.
>
> Took it pretty well in the Dr's office. Had a couple of "moments"
> outside his office and in the car with my wife. He told me that this
> type of cancer is so bloody rare he couldn't personally think of
> another case excactly like it in Canada, from his recollection.
>
> I got my cancer package in the mail yesterday from the Ottawa
> hospital. Me. I got it. *I'm* not supposed to get this, someone else
> is. The Canadian Cancer Society is something you make up excuses for
> at the door, not something you suddenly look at for a life-line. (To
> be honest, though, while I may have never given money to Cancer.ca,
> the Terry Fox foundation has usually gotten a few dollars from me each
> year - Now there was a hero).
>
> This sucks.
>
> I have my first appointment with the cancer centre tomorrow. Me. Going
> to see an oncologist. I got lost in the cancer centre once taking my
> daughter to CHEO for her diabetes appointment. Now *I'm* going there.
>
> Sigh.
>
> Anyway; I'm not really a bitter person and I certainly don't complain
> a lot (My wife might tell you differently, but what she hears and what
> the world hears are two different things ) I've been a Usenet
> junkie for almost 20 years, now, though I don't think I ever checked
> alt.support.* for much, even though I have two special needs children
> out of three.
>
> I'll stop writing now, but I feel better for ranting
>

Hi, Marc,

It is just SO WRONG that this happened to you. And no one told you in
hospital? From what you've said, it sounds like a freak thing. Many of
us feel like we fell through the rabbit hole when given news like this.

I hope things go well for you at the cancer center. Please keep us
posted on how it goes & what they have planned for you. And, yes,
you've found a good place to rant. Sometimes that helps a lot.

We'll be here reading & caring about you. So post anytime!

Hugs,
Fig

J <nswex@nalid;non> wrote in news:478E8769.F44FF3BE@execulink.com:

> Marc Bissonnette wrote:
>
>> < gentle snip>
>>
>> So I had my follow-up with the ENT last Thursday. Expected to go in
>> and have him say "You're doing great! I'll see you in six months".
>> Instead, what he tells me is "Well, Mr Bissonnette, the reason it
>> took so long for your operation is that the tumour you had was not
>> only non-benign, it was very aggressive. We took out several lymph
>> nodes, a bunch of bone and did a bunch of other stuff in there. Yes,
>> it's cancer."(Again, I'm paraphrasing).
>>
>> Crap.
>>
>> Took it pretty well in the Dr's office. Had a couple of "moments"
>> outside his office and in the car with my wife. He told me that this
>> type of cancer is so bloody rare he couldn't personally think of
>> another case excactly like it in Canada, from his recollection.
>>
>> I got my cancer package in the mail yesterday from the Ottawa
>> hospital. Me. I got it. *I'm* not supposed to get this, someone else
>> is. The Canadian Cancer Society is something you make up excuses for
>> at the door, not something you suddenly look at for a life-line. (To
>> be honest, though, while I may have never given money to Cancer.ca,
>> the Terry Fox foundation has usually gotten a few dollars from me
>> each year - Now there was a hero).
>>
>> This sucks.
>>
>> I have my first appointment with the cancer centre tomorrow. Me.
>> Going to see an oncologist. I got lost in the cancer centre once
>> taking my daughter to CHEO for her diabetes appointment. Now *I'm*
>> going there.
>>
>> Sigh.
>>
>> Anyway; I'm not really a bitter person and I certainly don't complain
>> a lot (My wife might tell you differently, but what she hears and
>> what the world hears are two different things ) I've been a Usenet
>> junkie for almost 20 years, now, though I don't think I ever checked
>> alt.support.* for much, even though I have two special needs children
>> out of three.
>>
>> I'll stop writing now, but I feel better for ranting
>
> Canadian ranters are highly valued around these parts.
> That's because Steph's a one-liner type of guy.
> Maybe he's heard of others with glomus jugulare.
> I've only heard of one - 3 or 4 years ago, on (these cancer)
> newsgroups and I think hers was benign.
>
> I"m happy to hear you've taught yourself to swallow.
> I could be wrong but your trip to Ottawa might be to evaluate you for
> radiotherapy.
> Which might mean that you'll need a mask fitting.
>
> I'm late for supper, so I'll close by saying "welcome, Marc" and I
> hope you'll rant here often.
> J
>

J,

I bet Mard would enjoy Clifto. Where is Clifto?

Fig

Hi Marc,

It's a common bad joke: "I'm not supposed to need cancer charities;
I *give* to them."

Do you have a copy yet of the pathology report on your cancer? That
tells 90% percent of the story. You'll need the surgical report too,
but right now the pathology report is far more important because the
oncologist will base your treatment plan on it.

This newsgroup can help you decode the pathology report.

Hang in there.

Una

"J" <nswex@nalid;non> wrote in message
news:478E8769.F44FF3BE@execulink.com...
> Marc Bissonnette wrote:
>
>> < gentle snip>
>>
>> So I had my follow-up with the ENT last Thursday. Expected to go in and
>> have him say "You're doing great! I'll see you in six months". Instead,
>> what he tells me is "Well, Mr Bissonnette, the reason it took so long for
>> your operation is that the tumour you had was not only non-benign, it was
>> very aggressive. We took out several lymph nodes, a bunch of bone and did
>> a bunch of other stuff in there. Yes, it's cancer."(Again, I'm
>> paraphrasing).
>>
>> Crap.
>>
>> Took it pretty well in the Dr's office. Had a couple of "moments" outside
>> his office and in the car with my wife. He told me that this type of
>> cancer is so bloody rare he couldn't personally think of another case
>> excactly like it in Canada, from his recollection.
>>
>> I got my cancer package in the mail yesterday from the Ottawa hospital.
>> Me. I got it. *I'm* not supposed to get this, someone else is. The
>> Canadian Cancer Society is something you make up excuses for at the door,
>> not something you suddenly look at for a life-line. (To be honest,
>> though, while I may have never given money to Cancer.ca, the Terry Fox
>> foundation has usually gotten a few dollars from me each year - Now there
>> was a hero).
>>
>> This sucks.
>>
>> I have my first appointment with the cancer centre tomorrow. Me. Going to
>> see an oncologist. I got lost in the cancer centre once taking my
>> daughter to CHEO for her diabetes appointment. Now *I'm* going there.
>>
>> Sigh.
>>
>> Anyway; I'm not really a bitter person and I certainly don't complain a
>> lot (My wife might tell you differently, but what she hears and what the
>> world hears are two different things ) I've been a Usenet junkie for
>> almost 20 years, now, though I don't think I ever checked alt.support.*
>> for much, even though I have two special needs children out of three.
>>
>> I'll stop writing now, but I feel better for ranting
>
> Canadian ranters are highly valued around these parts.
> That's because Steph's a one-liner type of guy.
> Maybe he's heard of others with glomus jugulare.
> I've only heard of one - 3 or 4 years ago, on (these cancer) newsgroups
> and I
> think hers was benign.
>

They are all benign. I treat 1 or two every couple of years.
Not sure what this was, but it wasn't a g-j

> I"m happy to hear you've taught yourself to swallow.
> I could be wrong but your trip to Ottawa might be to evaluate you for
> radiotherapy.
> Which might mean that you'll need a mask fitting.
>
> I'm late for supper, so I'll close by saying "welcome, Marc" and I hope
> you'll rant here often.
> J
>

Figgertoes wrote:

> Where is Clifto?

Other newsgroups.
J

Figgertoes <agent01413@my-deja.com> got too close to a singularity. This
was what came out the other side:
news:Xns9A27E0E572F1Bagent01413mydejacom@216.168.3 .44:

> Marc Bissonnette <dragnet\_@_/internalysis.com> wrote in
> news:Xns9A27A68DD96ACdragnetinternalysisc@216.196. 97.131:
>
>> Hi all;
>>
>> Mine's kind of a twisted story, but I'm sure there are others out
>> there who went through the same thing:
>>
>> A year and a half ago, I noticed my hearing in my right ear wasn't
>> what it used to be. After procrastinating for months, 'cause I figured
>> it was "just" impacted ear wax or "just" a cold, I went into the
>> doctor's. After a bunch of "Hmm, that's interesting"s, they said there
>> was a growth in my ear and they were sending me to an ENT.
>>
>> So off to the ENT in Pembroke (I live in NorthEastern Ontario,
>> Canada), he tells me its Glomus Tympanicum, but he's seen it excactly
>> once before - In med school - and he wasn't going to touch it (He said
>> it more nicely than that - I'm paraphrasing) - So off to the ENT in
>> Ottawa. So after some much delayed scans, X-Rays, MRI and CT, they
>> tell me it's Glomus Jugulare - A non-malignant, non-cancerous tumour
>> in the jugular foramen. Again, they say it's non malignant,
>> non-cancerous; They're going to operate, just don't know when.
>>
>> Anyway, after a *year*, they operate and take the thing out. What was
>> supposed to be a ten hour surgery ended up being 16 and a half hours.
>> Getting through two weeks in the hospital was rough, to say the least;
>> My facial nerve has a graft, 'cuz the tumour had infiltrated it
>> thouroughly (so my right side of my face is completely dead), I
>> couldn't swallow, because of the stretching of all the other nerves
>> and a bunch of other things. To make a long story short(er), I learned
>> to swallow, to the surprise of everyone in the hospital (No, Marc,
>> you'll be going home with a G-Tube, but we have to give you a chance
>> with the NG tube to see if you'll do it on your own, but don't count
>> on it) and I got to go home. Have to take it easy for two months, no
>> lifting of more than ten lbs, because of everything they did
>> (Basically, opened my head and dug around with an ice cream scoop).
>>
>> So I had my follow-up with the ENT last Thursday. Expected to go in
>> and have him say "You're doing great! I'll see you in six months".
>> Instead, what he tells me is "Well, Mr Bissonnette, the reason it took
>> so long for your operation is that the tumour you had was not only
>> non-benign, it was very aggressive. We took out several lymph nodes, a
>> bunch of bone and did a bunch of other stuff in there. Yes, it's
>> cancer."(Again, I'm paraphrasing).
>>
>> Crap.
>>
>> Took it pretty well in the Dr's office. Had a couple of "moments"
>> outside his office and in the car with my wife. He told me that this
>> type of cancer is so bloody rare he couldn't personally think of
>> another case excactly like it in Canada, from his recollection.
>>
>> I got my cancer package in the mail yesterday from the Ottawa
>> hospital. Me. I got it. *I'm* not supposed to get this, someone else
>> is. The Canadian Cancer Society is something you make up excuses for
>> at the door, not something you suddenly look at for a life-line. (To
>> be honest, though, while I may have never given money to Cancer.ca,
>> the Terry Fox foundation has usually gotten a few dollars from me each
>> year - Now there was a hero).
>>
>> This sucks.
>>
>> I have my first appointment with the cancer centre tomorrow. Me. Going
>> to see an oncologist. I got lost in the cancer centre once taking my
>> daughter to CHEO for her diabetes appointment. Now *I'm* going there.
>>
>> Sigh.
>>
>> Anyway; I'm not really a bitter person and I certainly don't complain
>> a lot (My wife might tell you differently, but what she hears and what
>> the world hears are two different things ) I've been a Usenet
>> junkie for almost 20 years, now, though I don't think I ever checked
>> alt.support.* for much, even though I have two special needs children
>> out of three.
>>
>> I'll stop writing now, but I feel better for ranting
>>
>
> Hi, Marc,
>
> It is just SO WRONG that this happened to you. And no one told you in
> hospital?

Frankly, I'm glad no one told me in the hospital; I had enough to deal
with after the surgery with the NJ tube, learning to swallow (I'm phobic
about choking, so the swallowing thing was a *big* deal - It felt like I
was awake for ten days straight, even though I must have lost
conciousness a few times in there)

> From what you've said, it sounds like a freak thing. Many of
> us feel like we fell through the rabbit hole when given news like this.

Yeah, freak thing for sure. The doctors told me a gazillion times that
this thing was benign. The ENT said the surgical team was shocked when
they opened me up and it was cancerous. His words: Glomus Jugulare is
*always* benign.


> I hope things go well for you at the cancer center. Please keep us
> posted on how it goes & what they have planned for you. And, yes,
> you've found a good place to rant. Sometimes that helps a lot.

> We'll be here reading & caring about you. So post anytime!

I have a feeling you guys will be seeing a fair bit of me in this NG
It *is* nice to know there are places where everyone has already been
through *exactly* what you're going through

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Well Marc, welcome to the Club, where the dues are extreme, most of
the activities no fun at all, and the initiation ceremonies very
disturbing, but the people are great. Welcome to the ASC, too, where
the dues are zip, the activities supportive (and sometimes cathartic),
the initiation ceremonies welcoming, and the people are great. You'll
find plenty of support here and ready ears (eyes?) for ranting, etc.,
as well as a bit of the inanity and insanity common to the 'Net. I
wish you well with recovery, and with treatment.

---
CSM

Marc Bissonnette wrote:

> Figgertoes <agent01413@my-deja.com> [..]
> > It is just SO WRONG that this happened to you. And no one told you in
> > hospital?
>
> Frankly, I'm glad no one told me in the hospital; I had enough to deal
> with after the surgery with the NJ tube, learning to swallow (I'm phobic
> about choking, so the swallowing thing was a *big* deal - It felt like I
> was awake for ten days straight, even though I must have lost
> conciousness a few times in there)
>
> > From what you've said, it sounds like a freak thing. Many of
> > us feel like we fell through the rabbit hole when given news like this.
>
> Yeah, freak thing for sure. The doctors told me a gazillion times that
> this thing was benign. The ENT said the surgical team was shocked when
> they opened me up and it was cancerous. His words: Glomus Jugulare is
> *always* benign.

Steph, our oncologist, says they're benign, so maybe you misheard?
Or it's something else?
How did it go today, Marc ?
J

they know each other from one of the 'admin' newsgroups

don't know if they know they share this issue

J wrote:
>
> Figgertoes wrote:
>
> > Where is Clifto?
>
> Other newsgroups.
> J

J <nswex@nalid;non> got too close to a singularity. This was what came
out the other side: news:478FC325.CF237FE8@execulink.com:

> Marc Bissonnette wrote:
>
>> Figgertoes <agent01413@my-deja.com> [..]
>> > It is just SO WRONG that this happened to you. And no one told you
>> > in hospital?
>>
>> Frankly, I'm glad no one told me in the hospital; I had enough to
>> deal with after the surgery with the NJ tube, learning to swallow
>> (I'm phobic about choking, so the swallowing thing was a *big* deal -
>> It felt like I was awake for ten days straight, even though I must
>> have lost conciousness a few times in there)
>>
>> > From what you've said, it sounds like a freak thing. Many of
>> > us feel like we fell through the rabbit hole when given news like
>> > this.
>>
>> Yeah, freak thing for sure. The doctors told me a gazillion times
>> that this thing was benign. The ENT said the surgical team was
>> shocked when they opened me up and it was cancerous. His words:
>> Glomus Jugulare is *always* benign.
>
> Steph, our oncologist, says they're benign, so maybe you misheard?
> Or it's something else?
> How did it go today, Marc ?

It's definitely malignant. I've been dealing with this tumour for over a
year now and a week ago, I would have agreed with your oncologist, saying
they're only benign because that's what I've been told for a year. It
turns out, though, they are benign 99.9% of the time. Apparantly, I've
fallen into that 0.01% where it's *not* benign. In addition to the tumour
spreading to lymph nodes in my neck, it invaded the facial nerve and took
out a bunch of bone. Basically, they opened the right side of my head and
went in there with an ice cream scoop.

Went to the oncologist today, where I was *really* hoping to find more
answers. His first statement was pretty much "I am going to be up front
with you: We have zero knowledge of this cancer. By all definitions,
Glomus Jugulare is a benign tumour, however yours, obviously, was not. I
will talk to the hospitals in Toronto, Vancouver, Houston and Boston and
we'll go from there". One of the surgeons was there and said he'd already
taken out several lymph nodes, in addition to the tumour, in addition to
a ton of bone. He also said there was a direct path to the brain no
longer protected by bone, but because of it's location, it shouldn't be a
problem, as long as I wear a helmet in all the things I *should* be
wearing a helmet anyway (Biking, skiing, hockey, etc)

So my case goes to grand rounds next week and I'm due back at the cancer
center in six weeks. Because of my age (35), they're not super keen on
radiation because of the side effects that *may* show up, twenty years
from now. If I was 20 years older, they'd irradiate without a second
thought, because I probably wouldn't live long enough to worry about side
effects. That, though, will apparantly be my choice. That's one thing
they repeated a few times today: Whatever they come back with in six
weeks, they'll show it all to me and ask what I am prepared to do.

He also said to be aware that there may *be* no specific answers for this
particular cancer: If that's the case, he said we'll lay everything we
*do* know out on the table and go from there.

Not exactly the type of day I was hoping for, since I *really* wanted
some answers today and not a specialist saying "We haven't the foggiest
idea of what to do next"

Other than that, the surgeon was quite pleased with the healing:
Headaches are starting to hit me now, as things knit back together;
There's still a lot of side effects from the nerve that was cut (facial
nerve - grafted - right side of face completely dead) and a bunch of
other nerves that were bruised and/or stretched. Those, at least, will
come back with time.

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

csm7532@hotmail.com got too close to a singularity. This was what came out
the other side: news:92942645-5d3c-42f8-86cd-
74671eb207ba@v67g2000hse.googlegroups.com:

> Well Marc, welcome to the Club, where the dues are extreme, most of
> the activities no fun at all, and the initiation ceremonies very
> disturbing, but the people are great. Welcome to the ASC, too, where
> the dues are zip, the activities supportive (and sometimes cathartic),
> the initiation ceremonies welcoming, and the people are great. You'll
> find plenty of support here and ready ears (eyes?) for ranting, etc.,
> as well as a bit of the inanity and insanity common to the 'Net. I
> wish you well with recovery, and with treatment.

Not quite a club I ever wanted to join (no offense), but the welcome has
been great

One thing I`m more than a little tired of, though, is doctors and nurses
telling me what I *should* be going through. For example, when I had the NJ
tube in me (A *horrific* experience, for someone phobic about choking), I
kept telling them I could taste the formula when they turned the pump on.

`No, you`re not tasting formula, it`s just the temperature difference in
your throat`, despite the fact I`d start choking on the stuff: It took my
wife telling them to smell my breath ferheaven`s sake, you could *smell*
the stuff as soon as they turned the pump on. Sure enough, the tube had
worked it`s way up the throat.

`No, no, this tumour isn`t cancerous`, well, we all know where that one
went

I swear, if I hear one more person tell me that Glomus Jugulare isn`t
cancerous, I`ll offer to switch places with em: THEY can deal with the non-
cancer in my head

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

Marc, I can relate to the benign / malignant insanity. My daughter
had a rare tumor that is often described in textbooks as benign. It
usually is benign, and before the mid 1990's if it was not benign
there was little to be done if the first surgery did not "cure" it.
So why scare the family, eh? But now the success rate with chemo
is high *if* given soon enough. That requires close surveillance by
someone who will look for and recognize early signs of a recurrent
tumor. We had a little trouble finding someone like that. I tell
you this because you too may have to deal with specialists who have
certain blind spots.

It sounds like you are in good hands: they are not experts in your
specific kind of rare cancer, but they are ready to learn with you
.... or from you. Like it or not, you are an important part of your
medical team.

http://en.wikipedia.org/wiki/Paraganglioma may be helpful; at least,
if there is something you don't understand, you can ask about it on
the article's talk page, the reference desk, or the "doctor's mess".
The wikipedia article links to http://www.drtbalu.com/glomus.html,
which says the usual delay in diagnosis is 6 to 15 years and has some
typing systems. Those should help you interpret your surgical and
pathology reports.

Una

Paul T. Holland wrote:

> they know each other from one of the 'admin' newsgroups
>
> don't know if they know they share this issue
>
> J wrote:
>
>>Figgertoes wrote:
>>
>>
>>> Where is Clifto?
>>
>>Other newsgroups.
>>J
news.admin.net-abuse.email

--
***************************************
* This is the Spammish Inquisition *
* Not Lumber Cartel Unit 75 [TINLC] *
* I am not SPEWS.ORG *
***************************************

Marc, re your choking. Do you have chronic difficulty swallowing?
That is one symptom of glomus jugulare mentioned on
http://en.wikipedia.org/wiki/Paraganglioma .

Una

"Marc Bissonnette" <dragnet\_@_/internalysis.com> wrote in message
news:Xns9A28E0BBD3975dragnetinternalysisc@216.196. 97.131...
> csm7532@hotmail.com got too close to a singularity. This was what came out
> the other side: news:92942645-5d3c-42f8-86cd-
> 74671eb207ba@v67g2000hse.googlegroups.com:
>
>> Well Marc, welcome to the Club, where the dues are extreme, most of
>> the activities no fun at all, and the initiation ceremonies very
>> disturbing, but the people are great. Welcome to the ASC, too, where
>> the dues are zip, the activities supportive (and sometimes cathartic),
>> the initiation ceremonies welcoming, and the people are great. You'll
>> find plenty of support here and ready ears (eyes?) for ranting, etc.,
>> as well as a bit of the inanity and insanity common to the 'Net. I
>> wish you well with recovery, and with treatment.
>
> Not quite a club I ever wanted to join (no offense), but the welcome has
> been great
>
> One thing I`m more than a little tired of, though, is doctors and nurses
> telling me what I *should* be going through. For example, when I had the
> NJ
> tube in me (A *horrific* experience, for someone phobic about choking), I
> kept telling them I could taste the formula when they turned the pump on.
>
> `No, you`re not tasting formula, it`s just the temperature difference in
> your throat`, despite the fact I`d start choking on the stuff: It took my
> wife telling them to smell my breath ferheaven`s sake, you could *smell*
> the stuff as soon as they turned the pump on. Sure enough, the tube had
> worked it`s way up the throat.
>
> `No, no, this tumour isn`t cancerous`, well, we all know where that one
> went
>
> I swear, if I hear one more person tell me that Glomus Jugulare isn`t
> cancerous, I`ll offer to switch places with em: THEY can deal with the
> non-
> cancer in my head
>


There are very rare malignant paragangliomas which may present like a G-J
The term G-J should really be reserved for the real thing, however.

By the way, I really can't understand the reluctance to radiate a malignant
tumour because you are young. What is the alternative?

<csm7532@hotmail.com> wrote in message
news:92942645-5d3c-42f8-86cd-74671eb207ba@v67g2000hse.googlegroups.com...
> Well Marc, welcome to the Club, where the dues are extreme, most of
> the activities no fun at all, and the initiation ceremonies very
> disturbing, but the people are great. Welcome to the ASC, too, where
> the dues are zip, the activities supportive (and sometimes cathartic),
> the initiation ceremonies welcoming, and the people are great. You'll
> find plenty of support here and ready ears (eyes?) for ranting, etc.,
> as well as a bit of the inanity and insanity common to the 'Net. I
> wish you well with recovery, and with treatment.
>
> ---
> CSM

I ditto CSM's comments above and add lashings of Warm Hugs into the pot.
Sounds like you have a cool sense of humour and an upbeat attitude, both of
which will help you with your rollercoaster ride.

Warm Hugs

Alayne

Una wrote:

> It sounds like you are in good hands: they are not experts in your
> specific kind of rare cancer, but they are ready to learn with you
> ... or from you. Like it or not, you are an important part of your
> medical team.
>
> http://en.wikipedia.org/wiki/Paraganglioma may be helpful; at least,
> if there is something you don't understand, you can ask about it on
> the article's talk page, the reference desk, or the "doctor's mess".
> The wikipedia article links to http://www.drtbalu.com/glomus.html,
> which says the usual delay in diagnosis is 6 to 15 years and has some
> typing systems. Those should help you interpret your surgical and
> pathology reports.

http://www.american-hearing.org/diso...mus_tumor.html
http://bjr.birjournals.org/cgi/content/full/74/879/266 decision-making in
metastatic paraganglioma
http://www.bcm.edu/oto/grand/102691.html Therapeutic Options for Treatment
of Glomus Tumors of the Temporal Bone
http://www.utmb.edu/otoref/Grnds/par...gang-9812.html TITLE:
Paragangliomas
SOURCE: UTMB Dept. of Otolaryngology Grand Rounds

http://www.chicagoear.com/med_info/glomus_jugulare.htm

una@att.net (Una) got too close to a singularity. This was what came out
the other side: news:fmpdim$gfk$1@doliolum.localnet:

> Marc, re your choking. Do you have chronic difficulty swallowing?
> That is one symptom of glomus jugulare mentioned on
> http://en.wikipedia.org/wiki/Paraganglioma .

Yeah, when I woke up from the surgery, I couldn`t swallow at all; Food and
saliva would go halfway down my throat then just stop. They said they`d
give me three weeks with the NJ tube then they`d put a G tube in - I`d be
damned if I was leaving that hospital with tubes coming out of me, so I
worked on those ice chips every two hours until I could finally swallow
some. Spent a week with puréed foods, then got discharged, at my urging. I
can mostly swallow now, though I always have liquid with me, in case
something gets stuck.

That`s one thing I learned about the radiation yesterday: It may affect my
swallowing *again*. Sigh.


--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

"Steph" <steph@vancouvers.island> got too close to a singularity. This
was what came out the other side: newsfYjj.34051$wx.3725@pd7urf1no:

>
> "Marc Bissonnette" <dragnet\_@_/internalysis.com> wrote in message
> news:Xns9A28E0BBD3975dragnetinternalysisc@216.196. 97.131...
>> csm7532@hotmail.com got too close to a singularity. This was what
>> came out the other side: news:92942645-5d3c-42f8-86cd-
>> 74671eb207ba@v67g2000hse.googlegroups.com:
>>
>>> Well Marc, welcome to the Club, where the dues are extreme, most of
>>> the activities no fun at all, and the initiation ceremonies very
>>> disturbing, but the people are great. Welcome to the ASC, too,
>>> where the dues are zip, the activities supportive (and sometimes
>>> cathartic), the initiation ceremonies welcoming, and the people are
>>> great. You'll find plenty of support here and ready ears (eyes?)
>>> for ranting, etc., as well as a bit of the inanity and insanity
>>> common to the 'Net. I wish you well with recovery, and with
>>> treatment.
>>
>> Not quite a club I ever wanted to join (no offense), but the welcome
>> has been great
>>
>> One thing I`m more than a little tired of, though, is doctors and
>> nurses telling me what I *should* be going through. For example, when
>> I had the NJ
>> tube in me (A *horrific* experience, for someone phobic about
>> choking), I kept telling them I could taste the formula when they
>> turned the pump on.
>>
>> `No, you`re not tasting formula, it`s just the temperature difference
>> in your throat`, despite the fact I`d start choking on the stuff: It
>> took my wife telling them to smell my breath ferheaven`s sake, you
>> could *smell* the stuff as soon as they turned the pump on. Sure
>> enough, the tube had worked it`s way up the throat.
>>
>> `No, no, this tumour isn`t cancerous`, well, we all know where that
>> one went
>>
>> I swear, if I hear one more person tell me that Glomus Jugulare isn`t
>> cancerous, I`ll offer to switch places with em: THEY can deal with
>> the non-
>> cancer in my head
>>
>
>
> There are very rare malignant paragangliomas which may present like a
> G-J The term G-J should really be reserved for the real thing,
> however.
>
> By the way, I really can't understand the reluctance to radiate a
> malignant tumour because you are young. What is the alternative?

Well, they`ve surgically removed the tumour and a lot of surrounding
structures and tissue. So the issue now is the leftover malignant cells,
which they say they can`t see, but they`re sure are still there. He said
it was an issue I needed to be aware of in order to make a decision. I`m
not overly comfortable in radiation, if it`s going to mean a possibility
of more cancer in a decade or two. We`ll have to see what they say when
they come back in six weeks :/



--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

"Marc Bissonnette" <dragnet\_@_/internalysis.com> wrote in message
news:Xns9A296E572718Edragnetinternalysisc@216.196. 97.131...
> "Steph" <steph@vancouvers.island> got too close to a singularity. This
> was what came out the other side: newsfYjj.34051$wx.3725@pd7urf1no:
>
>>
>> "Marc Bissonnette" <dragnet\_@_/internalysis.com> wrote in message
>> news:Xns9A28E0BBD3975dragnetinternalysisc@216.196. 97.131...
>>> csm7532@hotmail.com got too close to a singularity. This was what
>>> came out the other side: news:92942645-5d3c-42f8-86cd-
>>> 74671eb207ba@v67g2000hse.googlegroups.com:
>>>
>>>> Well Marc, welcome to the Club, where the dues are extreme, most of
>>>> the activities no fun at all, and the initiation ceremonies very
>>>> disturbing, but the people are great. Welcome to the ASC, too,
>>>> where the dues are zip, the activities supportive (and sometimes
>>>> cathartic), the initiation ceremonies welcoming, and the people are
>>>> great. You'll find plenty of support here and ready ears (eyes?)
>>>> for ranting, etc., as well as a bit of the inanity and insanity
>>>> common to the 'Net. I wish you well with recovery, and with
>>>> treatment.
>>>
>>> Not quite a club I ever wanted to join (no offense), but the welcome
>>> has been great
>>>
>>> One thing I`m more than a little tired of, though, is doctors and
>>> nurses telling me what I *should* be going through. For example, when
>>> I had the NJ
>>> tube in me (A *horrific* experience, for someone phobic about
>>> choking), I kept telling them I could taste the formula when they
>>> turned the pump on.
>>>
>>> `No, you`re not tasting formula, it`s just the temperature difference
>>> in your throat`, despite the fact I`d start choking on the stuff: It
>>> took my wife telling them to smell my breath ferheaven`s sake, you
>>> could *smell* the stuff as soon as they turned the pump on. Sure
>>> enough, the tube had worked it`s way up the throat.
>>>
>>> `No, no, this tumour isn`t cancerous`, well, we all know where that
>>> one went
>>>
>>> I swear, if I hear one more person tell me that Glomus Jugulare isn`t
>>> cancerous, I`ll offer to switch places with em: THEY can deal with
>>> the non-
>>> cancer in my head
>>>
>>
>>
>> There are very rare malignant paragangliomas which may present like a
>> G-J The term G-J should really be reserved for the real thing,
>> however.
>>
>> By the way, I really can't understand the reluctance to radiate a
>> malignant tumour because you are young. What is the alternative?
>
> Well, they`ve surgically removed the tumour and a lot of surrounding
> structures and tissue. So the issue now is the leftover malignant cells,
> which they say they can`t see, but they`re sure are still there. He said
> it was an issue I needed to be aware of in order to make a decision. I`m
> not overly comfortable in radiation, if it`s going to mean a possibility
> of more cancer in a decade or two. We`ll have to see what they say when
> they come back in six weeks :/
>
>

You're thinking about it wrong.
The question is not the very small risk from the RT, it's whether the risk
from recurrence is higher...which it undoubtedly is. A recurrence would very
likely not be curable. The risk of a second cancer is less than 1%

Marc, what I am getting at is that your tumor could have been present and
causing symptoms (hence your choking phobia) for most of your life.

A small French study (just 29 patients; PMID 17987308) found diagnosis of
this tumor at a relatively young age is highly correlated with inherited
genetic mutation and with multiple foci of tumor. (On the other hand, the
family history and/or higher likelihood of clinical signs given multiple
tumors may have contributed to an earlier diagnosis.)

Have your doctors asked about family history? Offered genetic counseling?

Una

una@att.net (Una) got too close to a singularity. This was what came out
the other side: news:fmpd2r$ge5$1@doliolum.localnet:

> Marc, I can relate to the benign / malignant insanity. My daughter
> had a rare tumor that is often described in textbooks as benign. It
> usually is benign, and before the mid 1990's if it was not benign
> there was little to be done if the first surgery did not "cure" it.
> So why scare the family, eh? But now the success rate with chemo
> is high *if* given soon enough. That requires close surveillance by
> someone who will look for and recognize early signs of a recurrent
> tumor. We had a little trouble finding someone like that. I tell
> you this because you too may have to deal with specialists who have
> certain blind spots.
>
> It sounds like you are in good hands: they are not experts in your
> specific kind of rare cancer, but they are ready to learn with you
> ... or from you. Like it or not, you are an important part of your
> medical team.
>
> http://en.wikipedia.org/wiki/Paraganglioma may be helpful; at least,
> if there is something you don't understand, you can ask about it on
> the article's talk page, the reference desk, or the "doctor's mess".
> The wikipedia article links to http://www.drtbalu.com/glomus.html,
> which says the usual delay in diagnosis is 6 to 15 years and has some
> typing systems. Those should help you interpret your surgical and
> pathology reports.

Those links were very helpful, thanks - Googling for stuff like this on
your own is tiresome, to say the least, though I managed to find a decent
PDF on the surgical technique before going in, which was helpful.

Though I don`t have a whole lot of information on it right now, it seems to
me that the feeling I get is that this cancer isn`t going to do a whole lot
at this stage in life: The doctors certainly don`t seem overly worried in
that there is no sense of urgency involved, which is nice, in a way:
There`s still a *long* way to go in getting better from the hospital visit.

If we *do* decide to go the radiation route, I would hope that my
swallowing is at 100% before we start: The idea of losing it yet again is
not exactly high on my list of things I`d like to do again this year



--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

una@att.net (Una) got too close to a singularity. This was what came out
the other side: news:fmqij5$ibk$1@doliolum.localnet:

> Marc, what I am getting at is that your tumor could have been present
> and causing symptoms (hence your choking phobia) for most of your
> life.
>
> A small French study (just 29 patients; PMID 17987308) found
> diagnosis of this tumor at a relatively young age is highly correlated
> with inherited genetic mutation and with multiple foci of tumor. (On
> the other hand, the family history and/or higher likelihood of
> clinical signs given multiple tumors may have contributed to an
> earlier diagnosis.)
>
> Have your doctors asked about family history? Offered genetic
> counseling?

They`ve asked about family history, of which there is none - Not even a
case of skin cancer in either side of the family - Doctor said that this
kind of cancer showing up in me was literally a freak accident. (I have a
son with Angelman Syndrome - Another completely freak accident and a
daughter with type I diabetes, which is now looking like it comes from the
mother`s side, since my brother in law literally was diagnosed *yesterday*
with type I diabetes)

No symptoms over life insofar as I know - Not sure where the phobia comes
from, it`s just one of those things. Can`t think of any particularly
traumatic incident in my life to cause it, either. I am an on-call
firefighter, but haven`t been involved in any really heavy chemical fires
or anything like that.

Weird, weird stuff.

--
Marc Bissonnette
Looking for a new ISP? http://www.canadianisp.com
Largest ISP comparison site across Canada.

From just a quick look at abstracts of medical articles, I would say
radiation after surgery is a judgement call because this kind of tumor
is not very sensitive to radiation. Higher on my priority list would
be an MRI with contrast to rule out additional tumors and to provide
a post-op baseline for your future surveillance MRIs.

Although your tumor was invasive, the good news is that this kind of
tumor is *very* rarely metastatic and grows slowly.

Una

una@att.net (Una) got too close to a singularity. This was what came out
the other side: news:fmql15$ifi$1@doliolum.localnet:

> From just a quick look at abstracts of medical articles, I would say
> radiation after surgery is a judgement call because this kind of tumor
> is not very sensitive to radiation. Higher on my priority list would
> be an MRI with contrast to rule out additional tumors and to provide
> a post-op baseline for your future surveillance MRIs.
>
> Although your tumor was invasive, the good news is that this kind of
> tumor is *very* rarely metastatic and grows slowly.

Well, though he did say it was malignant, he also said it grows slowly,
thus the time we seem to have in order to make decisions. I`ve asked for
the surgery and pathology report, so now I just have to wait for them to
come in the mail, after signing off on the privacy things.

All in all, it seems that things could have been worse, which is a good
thing, I guess.



--
Marc Bissonnette