--- In BrainSurgery@yahoogroups.com, bilovsky@... wrote:
>
> Dear Joy,
> David Bailey is our sage, our bard, our inspiration. Anyone who
has not
> heard his songs should check at _www.davidmbailey.com_
> (http://www.davidmbailey.com) . Anyone who has not seen his
extraordinary poems right out of brain
> surgery should review their emails over the past week or so.
>
> Joy, in your latest post you reported having both thyroid cancer
and a
> meningioma (forgive me if you had stated this earlier). I
immediate said to
> myself you had received x-ray treatment to your head years
earlier. Then
> reviewing this string of emails I saw you had previously
written "I was told that in
> my case radiation I'd had as a child for a low level fungal
infection most
> likely caused the tumor." It is more likely than not that this
radiation cause
> both tumors. Ionizing radiation such as x-rays, radioactivity,
nuclear
> bombs, has been called the universal carcinogen because it has
been shown to
> cause almost all cancers.
>
> I appreciate all the folks have contributed to this discussion.
An
> essential point that I have been making, that some seem to have
missed, is the
> problem with the word "benign" as an adjective for brain tumors.
This is the
> reason I have come to use new terminology. Benign (AKA harmless)
sets up
> survivors, caregivers, media, and medical professionals to discount
the seriousness
> of all "benign" brain tumors.
>
> Best to all. Have a wonderful Holiday season,
> Lloyd
>
>
>
>
> In a message dated 11/30/2008 11:12:29 A.M. Pacific Standard Time,
> joy_lintonek1@... writes:
>
> Lloyd and all, I am reading a book right now that you may find of
interest.
> "Cancer Is Not a Disease". It is available on Amazon.com
Perhaps it is
> good to have an understanding of the perspective we have on the
condition,
> cancer. I have, perhaps, a unique perspective as the meningioma I
have was found
> as part of a work up for thyroid issues that turned out to be
thyroid cancer.
> So, even if I can reason that the brain tumor is not cancer, I
don't get a
> "home free". I recall reeling when first told that the pathology
of the
> thyroid showed cancer. I recall thinking, "I had no idea I was
sick". I noticed
> within a short time that I began to take on a "sick" mindset.
ie., 'I need to
> rest', etc., Then in a moment of clarity it came to me that I
didn't one day
> have a tumor and was tumor free the day before...and I hadn't felt
sick prior
> to being told that I had cancer and there is no reson to act sick
now! In
> all likelyhood the thyroid tumor and the brain tumor had been
there for a
> while. You know what? I am now 2 1/2 years into wrapping my mind
around the idea
> of cancer and 1 1/2 years beyond neurosurgery and I think David
Bailey is a
> genius!!!; and he said it in few words and with great eloquence; I
am on my
> way to visit a friend a bit uncertain about what cancer may come
to mean for
> her and I will bring a copy of David's most recent e-mail filled
with reality
> and hope and love; [God's prescription for the world!]... I
couldn't say what
> I know to be true any better than he did! I'd also like to add
that in the
> midst of all the health concerns, I was lucky enough to be hit 3
times by a
> tractor trailer while doing 67 mph on a major interstate!! I say
lucky because
> the last thing I can recall thinking as I was tossed airborne
was, "I am not
> going to die of cancer after all, who'd have thunk??" I wasn't
afraid of
> having cancer after that, because after all, who among us knows;
even when we
> think we know!!!???? Each day is a gift, live it! Reason out
things like
> cancer, but remember we are in the hands of a good and gracious
God; do our and
> part and then, let go and let God. I have come to think, as Lloyd
does, that
> the uncontrolled proliferation of cells = cancer and at this
point, that
> impacts me in a very academic way, but not in a negative way! My
reading also
> tells me that every one of us experiences cancer on a regular
basis and that
> the body normally responds and eliminates it. Under the right
conditions that
> can happen again, much as it did/does for David. You may have seen
the
> articles coming out of Europe, Germany especially, speaking to
this view. like
> David, I have ups and downs in my self healing process; I
experience
> frustration, fear of the unknown and at times doubt. I freely
admit that. I am human.
> There is much we have left to learn about our fearfully and
wonderfully made
> cells/selves. This much I know for sure, cancer cannot overcome
the light and
> I am body AND soul; being soul, I am part of the light. My task
is to feed
> both wisely. Blessings on us, every one! Joy P.S. Sincere thanks
to David
> for helping me to see that in God all things are possible. J.
>
> --- On Sat, 11/29/08, Bilovsky@... <Bilovsky@...> wrote:
>
> From: Bilovsky@... <Bilovsky@...>
> Subject: Re: Cancer? Re: News Incompetance Re: news story about so-
called
> benign brain...
> To: Esjmfl@...
> Cc: meningioma@..., brain-activist@yahoogroups.com,
> BrainSurgery@yahoogroups.com
> Date: Saturday, November 29, 2008, 10:28 PM
>
>
> Dear Esjmfl,
> You are correct, "these terms are very vague." This is why I
define what I
> mean by cancer, "a disease where mutations of the cell's DNA
result in an
> uncontrolled growth in the cells."
>
> Even with complete resection (surgical removal) a significant
number of
> meningiomas re-occur. I recently saw some statistics from a
recent study but
> don't remember the numbers. The stat I used some years ago was
that
> approximately 50% of completely resected meningiomas, reoccur by
15 years (perhaps
> somebody else can respond with the more recent stats). Yes, only
a small %
> morph into anaplastic or malignant versions.
>
> "Benign" tumors have mutated DNA such that the cells continue to
grow.
> Normal cells (with un-mutated DNA) only grow to replace damaged
or dead cells.
> For example, skin cells will grow when we cut ourselves or to
replace cell
> that die, but do not otherwise grow except when the skin cell's
DNA has
> mutated. Meningioma cells (mutated cells of the meninges) grow
(slow or fast)
> without end. Surgery removes the cells that grow without end.
Radiation kills
> the cells that grow without end.
>
> Going to another level of detail (and stretching my knowledge so I
might be
> wrong) even mutated cells require a signal to divide. Typically
this is a
> hormone. For meningiomas the most common hormone is
progesterone. So when the
> progesterone molecule attaches itself to the membrane of a
meningioma cell,
> the cell is told to divide. Thus when a women with a wait & watch
> meningioma becomes pregnant sometimes (not all meningiomas are
progesterone positive,
> meaning the hormone that signals the cell to define is the
progesterone
> molecule) her meningioma will begin to grow very fast (more
progesterone
> molecules, more growth) and why with the coming of menopause the
growth of fibroid
> tumor stops, or even shrinks (my guess the shrinkage is because
our natural
> immune system is attacking the fibroid tumor cells).
>
> You ask, "So wouldn't a meningioma or fibroid that was resected or
gamma
> knifed and never came back truly be benign?" My understanding why
they come
> back is that the surgery or the radiation (gamma knife) did not
remove or kill
> all the cells. Of course the other possibility is that whatever
caused the
> mutations in the first tumor acted again. However, if this were
to occur it
> would be unlikely that the tumor would re-grow at the same site.
>
> The BIG PICTURE is what we don't know if far larger than what we
do know.
>
> Thanks, these were all excellent questions.
>
> Regards,
> Lloyd
>
>
> In a message dated 11/28/2008 5:05:21 P.M. Pacific Standard Time,
Esjmfl
> writes:
>
> Lloyd, I understand what you are saying. The problem is that
these terms
> are very vague in their definitions-not clear cut at all. One
doctor once told
> me that cancer is a catch all phrase that is applied to many
different
> diseases, many of which have very little in common with each
other. He said it
> doesn't matter what you call what you have; it's how you treat it
that matters.
> And I agree that calling it cancer does not make someone a victim
(nor does
> having cancer make someone a victim). I was, however, under the
impression
> that most meningiomas will go away after they are removed and only
a small
> minority of them recur and/ or morph into an atypical or malignant
version. I
> thought that is why they are considered benign. Also, your
definition for
> cancer pertains to uncontrolled cell growth. Benign tumors have
abnormal cells
> but not uncontrolled growth in the sense that they can be stopped
(surgery,
> radiation, even the birth control pill for an ovarian mass)) and
are not life
> threatening. So wouldn't a meningioma or fibroid that was
resected or gamma
> knifed and never came back truly be benign?
>
>
> In a message dated 11/26/2008 3:09:09 A.M. Eastern Standard Time,
> Bilovsky@... writes:
>
> Dear Nancy,
> Thank you for your thoughtful reply. I am glad that your "watch &
wait"
> turned out for the good.
>
> Before I respond to other things you discuss I want to say that
saying I had
> a low-grade cancer does not make me a victim (any more than saying
I had a
> brain tumor, or a benign brain tumor would make me a victim). My
perspective
> (and know that I respect your perspective) is that to know the
truth (re my
> definition of cancer: a disease where mutations of the cell's DNA
result in
> an uncontrolled growth in the cells.) is to be able to learn more
(whether as
> a researcher, a survivor, or a caregiver).
>
> The Cleveland Clinic is a well respected medical center. However,
I believe
> whoever you spoke with was wrong. They were telling you the
standard line
> which just doesn't hold up to careful inspection. I have asked
on many
> occasions top specialists like neuro-oncologists to define what is
a "benign" and
> malignant brain tumor. They give me a definition. For example,
malignant
> tumor metastasize and "benign" tumors do not metastasize. I give
them
> examples that contradict their definition. They agree with me.
Typically, they
> switch to another definition. Malignant tumors are aggressive
and "benign"
> tumors are not aggressive. Again, I give them examples that
contradict their
> definition. Every time I have had this conversation they end up
agreeing with
> me, there is no definition of these tumor adjectives.
>
> I am aware that fibroid tumors often shrink with the arrival of
menopause.
> But all that says is that the hormone that tells the low-grade
cancer cells
> to grow has been diminished or removed. My sense (and I do not
know) is that
> the tumor shrinks because the body's normal immune system takes
over.
>
> Best regards and with respect,
> Lloyd
>
>
> In a message dated 11/25/2008 2:47:23 P.M. Pacific Standard Time,
> nepiazza@... writes:
>
>
>
>
> Hi,
>
> I'm two weeks post op and feel the need to add to this
conversation. I was
> on watch and wait 4 1/3 years. I'm so glad I waited to have
surgery because
> the surgeon that did it now was not the surgeon who would have
done it
> then. He got it all and with no damage. So I wouldn't change a
thing, not even
> the timing.
>
> I just came back from a follow-up appointment at the Cleveland
Clinic and
> was told my tumor was benign. I brought up the conversation that
is going on
> here about benign being low-grade cancer, and they completely
disagreed.
> Truly benign is not cancerous.
>
> I see no value in telling people with benign tumors (such as
fibroids that
> often shrink to nothing after menopause as mine did) that their
tumors are
> low grade cancers. Does feeling more like a patient or a victim
help anyone's
> state of mind? I don't think so.
>
> I believe in being positive, thinking positive and getting
positive results
> through support and science.
>
> Be vigililent, yes. But think the worst when it's not, no. ...
>
> Nancy
>
> --- On Tue, 11/25/08, Bilovsky@... <Bilovsky@...> wrote:
>
>
> From: Bilovsky@... <Bilovsky@...>
> Subject: Re: Cancer? Re: News Incompetance Re: news story about
so-called
> benign brain...
> To: bea.mcclure@..., joy_lintonek1@...
> Cc: Darbmark@..., meningioma@...,
> brain-activist@yahoogroups.com
> Date: Tuesday, November 25, 2008, 4:34 PM
>
>
> Dear Bea and all,
> Your points are very important. Many low-grade cancers morph into
higher
> grade versions. Both from a research point of view and from a
therapeutic
> point of view, it is far better to deal with the initial version
rather than
> the "morphed" version(s).
>
> While I am not a physician, I am very dubious about the "wait and
watch"
> approach unless the person is of an advanced age. The meningioma
will continue
> to grow (slowly perhaps) without limit. So waiting only means
that there
> could be additional harm.
>
> If a women in her reproductive years is diagnosed with a
meningioma and is
> told we'll "wait and watch" without being warned that becoming
pregnant can
> be dangerous, this is, in my opinion, is malpractice. And, you
are more than
> correct when you note that without a biopsy there is no way to
tell whether
> a meningioma is a low-grade, medium-grade or a high-grade
cancer. This
> too, in my opinion, is malpractice.
>
> Best to all,
> Lloyd
> 1995 "peach-sized, left frontal lobe, meningioma survivor
>
>
> In a message dated 11/24/2008 5:29:43 P.M. Pacific Standard Time,
> bea.mcclure@... writes:
>
> I think another point is that doctors sometimes say that the
meningiomas
> are 'benign', without performing a biopsy. Until a pathologist
reads the
> report, there is no way to definitively declare 'benign'. There
are two other
> grades, atypical and malignant. Additionally, a 'benign' can
morph into an
> atypical or a malignant. So, what I'm trying to say is that again
and again
> doctors view the MRI and say 'oh, you've got a benign tumor', when
they are
> really only playing the odds...there is NO way they can be sure.
Happy
> Thanksgiving to all.
> bea
>
>
> On Nov 24, 2008, joy_lintonek1@... wrote:
>
> My understanding, after much research, would concur with Lloyd.
The more we
> understand, the more crucial it becomes that research be focused
on all
> tumors and that Docs not be encouraged to dismiss meningioma as
the "good" one
> to have. Some ns believe that routine physicals should include an
MRI, as the
> docs postulate that there are MANY of us facing this low level
cancer and we
> should try to determine patterns so that we can track possible
causes. I
> was told that in my case radiation I'd had as a child for a low
level fungal
> infection most likely caused the tumor. All the best, Joy
>
> --- On Mon, 11/24/08, Bilovsky@... <Bilovsky@...> wrote:
>
> From: Bilovsky@... <Bilovsky@...>
> Subject: Cancer? Re: News Incompetance Re: news story about so-
called
> benign brain tumors
> To: Darbmark@...
> Cc: "Meningi-Mates" <meningioma@...>,
> brain-activist@yahoogroups.com, brain-surgery@...
> Date: Monday, November 24, 2008, 11:59 AM
>
>
> Dear Darby,
> It took me years to recognized that my meningioma was indeed a low
grade
> cancer (per my definition of cancer). I was diagnosed in 1995.
It took me a
> dozen years to come to my own understanding. For many years it
was my own
> ignorance. After about 8 years I accepted a euphemism (instead
of "benign",
> ""non-malignant") and was succeeded in getting the Central Brain
Tumor
> Registry of the United States to change from reporting "benign"
brain tumors to
> reporting "non-malignant" brain tumors. However, as my learning
continued it
> was clear than "benign" brain tumors and other "benign" tumors
(e.g., colon
> polyps) have mutated genes (which is why the continue to grow
unlike normal
> cells) the hallmark of cancer.
>
> My definition of cancer: a disease where mutations of the cell's
DNA result
> in an uncontrolled growth in the cells.
>
> Many cancers do not metastasize (e.g., glioblastoma multiforme-the
nastiest
> of brain tumors, basal cell carcinoma) and sometimes "benign"
meningioma
> brain tumors do metastasize (very, very rarely, but it has been
documented).
> Some cancers are not aggressive (e.g., basal cell carcinomas).
Most, but not
> all meningiomas, are not aggressive.
>
> Cancer is such a terribly loaded term in our society that I
believe (as a
> culture) we are in denial. Colon polyps are regularly snipped-
out because
> they mutate further (they already have mutated genes) into a very
aggressive
> colon cancer. Fibroid tumors of the uterus are "benign" tumors.
They too are
> the result of mutated DNA and some of the time, far less
frequently than
> colon polyps, they mutate further to become an aggressive uterine
cancer.
>
> Because of our cultural denial, research does not focus on the low-
grade
> cancers (often the initial cancer) in an effort to understand
what is the
> cause. Instead research focuses on the most highly mutated
cancers (e.g.,
> glioblastomas) where, in my opinion, the need is to investigate
the beginning (a
> low-grade astrocytoma).
>
> Please know it was not my intent to upset you (or anyone else).
It took me
> a dozen years to face what I believe is reality, and I KNOW I
would have
> been greatly upset, if I had been told, particularly after
learning I had a
> "benign" tumor, that I have cancer.
>
> My apology for any distress I have created.
>
> God bless,
> Lloyd
>
>
> In a message dated 11/23/2008 7:24:01 P.M. Pacific Standard Time,
Darbmark
> writes:
>
> I agree . . . my M is far from a "wart". That being said, benign
brain
> tumors are just that . . . benign! They don't normally spread
outside of the
> brain . . . they don't get into your blood stream and cause other
tumors to
> grow in other parts of the body . . . they are NOT cancer! Your
last email
> almost suggested (okay actually suggested) that these so-called
benign tumors are
> low grade forms of cancer. That just isn't so.
>
> Cancer is totally different. I don't have cancer. Do I have a
brain tumor
> that could have cause massive problems? Yes. Did it? No.
> Nobody said that these type of tumors can't grow huge or have
major issues
> -- every NS I know said that can cause issues and even death if
they grow to
> massive sizes. (even smaller ones in certain places can be life
threatening.)
> But, they are NOT cancer.
>
> I just had to get that off my chest.
>
> Darby
>
>
>
>
>
>
>
>
>
>
>
>
> Hi guys this is Patti,I use to post alot quite a long time ago and
as I read some of these posts,it reminded me of how many very
intelligent people we have that have been fighting for years to get
the respect we all deserve whether our tumors are that "benign"
or "malignant"As a brain tumor survivor of over 15 yrs,it'a even a
battle speaking with the super nueros I call the suergeons
that,because they already know it all.I like to remind them that just
because I have had multiple brain tumors,that I am not used,or
damaged goods,and that my opinion definately counts.I will not go to
any Dr.that does not respect me,or my opinions,it's my life and my
body.I have had two brain tumors removed that were benign,however they
were growing and putting pressure on areas that were causing alot of
problems.Currently I have a base skull"M" that is eroding the
skull,and on the brainstem.The super nueros have told me we have no
choice other than to wait and watch,which we have been for about 4
yrs now.The beast causes problems at times like severe headaches,
some respiratory issues,and the flow of spinalfluid,so I have had to
go on s.s..I ask my nuero this"well since my br. tumor hasn't grown
much,it must be benign then right?"I wanted a reaction from him.He
looked at me and said"not necessairly,we cannot do a biopsy,it's to
dangerous,so we cannot rule cancer out without a biopsy"Ok I said so
what if we do a biopsy then"He said"you will die during any attempt
of surgery"I have had so many opinions,no body will touch it,so I am
happy to live every day that I am given without worrying about having
to have a label,for what I call my beast!For me it was causing to
much stress...those Drs.all have different opinions,and seem to stick
together when they shouldn't.I have had a few really wonderful
Drs.that have helped me alot,but I also have saved my own life a few
times because I would not stop when the Drs couldn't find out what
was really wrong..oh ya it was in my head,lol no kidding.Each to
their own what ever works to keep you living and not giving up!!I got
my first tumor when my children were still in school,it really scared
them bigtime,scared all of us actually..but we have gotten through it
one by one.Don't be afarid to question your Drs.after all we do pay
their paychecks ya know.Just one more comment,as I was reading posts
I noticed radiation treatments on a person as a child for a low grade
fungus infection,correlations between br.tumors and thyroid cancer.I
too was a child,a 6 week old baby in 1952 I had an enlarged thymus
gland in my throat(by the thyroid) so they radiated it 6 treatments
to shrink it down.
Well now I have breast tumors,brain tumors,had my thyroid
removed due to 4 tumors on it, and Lupus,because the radiation
treatments blew my immune system out,you see the thymus gives babies
part of their immunities as babies then it shrinks as we grow
older....so mine was caused all from radiation.Medicine is a science
and not always fool proof.I must admit it's come along way babe...so
everybody hang in there, ya never know how much better medicine may
get!Take care all and remember to love,and live each day,for it's a
given gift!
Love to you all,
Patti : )
> **************Life should be easier. So should your homepage. Try
the NEW
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