Re: Radiation answer raises more questions

[Guest guest]

Well, I can't say for sure that my tumor's are going to regrow. God willing

it won't, but so far though. The tumor that I had " zapped " 3 years ago

hasn't grown and no tumors around it near it hasn't grown.

Mark

----Original Message Follows----

From: HHorn8996@...

Reply-To: NF2_Crewonelist

To: NF2_Crewonelist

CC: Misha64@...

Subject: Radiation answer raises more questions

Date: Mon, 27 Sep 1999 04:53:04 EDT

From: HHorn8996@...

Crew,

Hmmm....In digest 177 Mark Sarmac answered Jennette Braaten questioning him

about radiation IF a tumor ever regrew...and seemed to raise new questions &

concerns.

Granted, radiation may be a " tumor terminator " , but as Jennette points out,

radiosurgery succeeds in leaving behind an enomous amount of scar tissue.

There is necrosis, yes, but the tumor is NOT removed in gk or any other form

of radiation.

Now what if ANOTHER tumor grows nearby? Is it possible all this scar tissue

could hide that new growth? What if the thing is so close that it would have

filled the radiated area but now is forced by the necrosis to move into

another part of the brain? Wouldn't microsurgery, then, have the advantage

in

this specific case?

Another scenario=Let's say you have ANs on both sides ZAPPED. Ooops, another

tumor grows somewhere behind one of them. Now how in the dickens do you get

at it? Wouldn't you need to remove the dead tumor to get at it?

More questions than answers= I'm NOT against any surgical method. I'm

interested in every one. However, we want Crew members to be provided with

sound reasoning and facts to back it up. The " docs highly doubt " (that it

will regrow) at the end of Mark's answer should be CERTAIN?! Has anyone had

a radiosurgery regrowth or a NEW one so close to an irradiated tumor that it

was concealed or forced by necrosis to grow in a different direction??

Harold

----------------------

Subject: Re: radiation

Uh well, from MY own experience Jeanette, I had GAmma Knife done to my right

AN 3 years ago and it hasn't grown since. It actually has gone into necrosis

(molecular death). There hasn't been any regrowth and many of my doctors

highly doubt that it will regrow. Mark

----Original Message Follows----

Reply-To: NF2_Crewonelist

To: " nf2 crew " <NF2_Crewonelist>

Subject: radiation

Date: Fri, 24 Sep 1999 22:33:32 -0400

I have been out of town for a week and am trying to wade through

300 emails that piled up while I was gone so forgive me if this

was asked and answered already. I obviously have not gotten to

it yet.

Has anyone ever had radiation on a regrowth? Any complications

if so? AND this I seriously doubt but will ask anyway... a

regrowth of a tumor that was radiated once and then surgically

removed because that radiation failed to stop it from growing?

Basically how can radiation deal with enormous amounts of scar tissue?

Jennette

[Guest guest]

>From: HHorn8996@...

>Now what if ANOTHER tumor grows nearby? Is it possible all this

scar tissue

>could hide that new growth? What if the thing is so close that

it would have

>filled the radiated area but now is forced by the necrosis to

move into

>another part of the brain? Wouldn't microsurgery, then, have the

advantage in

>this specific case?

>Another scenario=Let's say you have ANs on both sides ZAPPED.

Ooops, another

>tumor grows somewhere behind one of them. Now how in the

dickens do you get

>at it? Wouldn't you need to remove the dead tumor to get at it?

>

>Has anyone had a radiosurgery regrowth or a NEW one so close to

an irradiated >tumor that it

>was concealed or forced by necrosis to grow in a different

direction?

Perfect Harold! I'd sure like to know the answers to these

questions. I think Jim Heath and I are the two Crewbies

" irradiated " the longest time back who are still alive. Jim, are

u here? When was your proton again? Rick, didn't one of your

sisters have Proton by Dr. Kjellburg at Mass. General too? How

did that go? Mine was in 1984, a total disaster. It was the new

gizmo from Sweden back then. , Helen had it, right? No? I

think that is where they say we need some " long term studies "

because its still very new. I thought someone on here (Roscoe,

were you doing it?) was starting to put together a study of us

NF2 folk who were zapped and how it panned out?!? Drs are doing

studies of all tumors zapped... we need a study for NF2, don't

you think? And at 130 of us now, this Crew (or crewbies that

know of nf2ers not in the crew) has got to be the biggest NF2

gathering there is since we are so unique (trans, rare). If

they wont do this study like that on us, why don't we do it

ourselves.... for us, and maybe they just might be very

interested in it too after we start it.

Jennette

[Oregon]

[Guest guest]

Just a thought, but would that brain tumor site that Dr. is setting

up to gather info be useful on this subject? Maybe we NF2ers could give Dr.

some input and he would refine the site to include different kinds

of radiosurgery! I am afraid the medical community is out to find out

microsurgery vs radiosurgery, where as some of us need to know, what kind of

radiosurgery is best. Also, on this topic, if you had microsurgery and a

regrowth, would there also not be a lot of scar tissue? Or is it a problem

now because the " old necrotic " tumor is still there, as well as scar tissue?

Marie

Re: Radiation answer raises more questions

>

>

>

>

>>From: HHorn8996@...

>

>>Now what if ANOTHER tumor grows nearby? Is it possible all this

>scar tissue

>>could hide that new growth? What if the thing is so close that

>it would have

>>filled the radiated area but now is forced by the necrosis to

>move into

>>another part of the brain? Wouldn't microsurgery, then, have the

>advantage in

>>this specific case?

>

>>Another scenario=Let's say you have ANs on both sides ZAPPED.

>Ooops, another

>>tumor grows somewhere behind one of them. Now how in the

>dickens do you get

>>at it? Wouldn't you need to remove the dead tumor to get at it?

>

>>

>>Has anyone had a radiosurgery regrowth or a NEW one so close to

>an irradiated >tumor that it

>>was concealed or forced by necrosis to grow in a different

>direction?

>

>Perfect Harold! I'd sure like to know the answers to these

>questions. I think Jim Heath and I are the two Crewbies

> " irradiated " the longest time back who are still alive. Jim, are

>u here? When was your proton again? Rick, didn't one of your

>sisters have Proton by Dr. Kjellburg at Mass. General too? How

>did that go? Mine was in 1984, a total disaster. It was the new

>gizmo from Sweden back then. , Helen had it, right? No? I

>think that is where they say we need some " long term studies "

>because its still very new. I thought someone on here (Roscoe,

>were you doing it?) was starting to put together a study of us

>NF2 folk who were zapped and how it panned out?!? Drs are doing

>studies of all tumors zapped... we need a study for NF2, don't

>you think? And at 130 of us now, this Crew (or crewbies that

>know of nf2ers not in the crew) has got to be the biggest NF2

>gathering there is since we are so unique (trans, rare). If

>they wont do this study like that on us, why don't we do it

>ourselves.... for us, and maybe they just might be very

>interested in it too after we start it.

>

>Jennette

>[Oregon]