Loading ...
Sorry, an error occurred while loading the content.
 

D Bailey, Thyroid & Brain TumorRe: Cancer? Re: News Incompetance Re: news story

Expand Messages
  • bilovsky@aol.com
    Dear Joy, David Bailey is our sage, our bard, our inspiration. Anyone who has not heard his songs should check at _www.davidmbailey.com_
    Message 1 of 2 , Dec 1, 2008
      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






















      **************Life should be easier. So should your homepage. Try the NEW
      AOL.com.
      (http://www.aol.com/?optin=new-dp&icid=aolcom40vanity&ncid=emlcntaolcom00000002)


      [Non-text portions of this message have been removed]
    • enlightned14782
      ... has not ... extraordinary poems right out of brain ... and a ... immediate said to ... earlier. Then ... written I was told that in ... infection most
      Message 2 of 2 , Dec 28, 2008
        --- 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
        > AOL.com.
        > (http://www.aol.com/?optin=new-
        dp&icid=aolcom40vanity&ncid=emlcntaolcom00000002)
        >
        >
        > [Non-text portions of this message have been removed]
        >
      Your message has been successfully submitted and would be delivered to recipients shortly.