Now a lymph node lights up

janie1
janie1 Member Posts: 753 Member
edited July 2012 in Colorectal Cancer #1
I had some hope despite the ugly nature of this disease. Now, it appears chemo isn't working. Dx'd Stage 4 about 16 months ago.
Felt like we were chipping away at the liver mets. Had liver pump implanted last August, but didn't use much until recently.
-- Liver surgery in January
-- 3 new tumors in liver in May - ablated those
-- 1 new tumor in liver in July - plan is to ablate this one too in a week. (Is this worth it ?????)

But the kicker is, NOW a lymph node near liver on PET lit up (almost didn't have a PET done), but doc wanted to double check the liver spot seen on the CT.

Radiation oncologist said it won't be difficult to radiate the lymph node....not in a bad place. So that will be done in a couple of weeks,

I am horrified, since I've been on chemo for 16 months except for 2 surgeries. I wonder if the break in January for liver surgery spread things, or if the chemo is just not working anymore.

Also, with a lymph node involved.....what exactly does that mean?? I think I know, but just want to hear other experiences. I can handle it. My onc is the liver pump expert, but when one runs out of chemo options......well, I've been on Folfox (she stopped it due to neuropathy),
been on Folfuri which doesn't seem to be working with all these new growths.
Haven't been on xeloda and avastin (she doesn't seem to think much about avastin).

I feel a trial is all that is left. Need to really talk with onc. The last visit was a whirlwind, she had me seeing the 2 radiologists at the same time I was to get chemo, so I was grateful that she was pushing to get things moving. But I left there devastated. And I travel out-of-state and don't have a local onc. This is a nightmare. Wasn't expecting it this soon. And seems things grow really fast that I won't even have time to try anything else. It's like a run-a-way train.

Scared out of my mind.

Comments

  • tommycat
    tommycat Member Posts: 790 Member
    Awwwww Joan!!!!
    Really can't

    Awwwww Joan!!!!
    Really can't articulate my thoughts at this moment but just read your post and would hug you if I was there...
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    tommycat said:

    Awwwww Joan!!!!
    Really can't

    Awwwww Joan!!!!
    Really can't articulate my thoughts at this moment but just read your post and would hug you if I was there...

    Hi Joan , I have couple of lymph nodes affected since 2 years
    Ago , I have killed it several times but always had new recurrences , as far it stays in the lymph nodes is ok.
    I get twice radiation on the nodes and was a success , main problem is that if limph nodes are affected you must attack it with
    Chemo since it use to be in the whole lymphatic liquid ,,until today l have killed it 2 times with some periods of Ned and off chemo,
    Hope this time 3th, is the definitive ! Any case the important is to have it controlled and well monitored in order it doesn't spread to any vital organ!
    Hugs my friend!.
    PS. Every time I been Ned have told the Dr. To stop chemo and as per my experience recurrence didn't appear before 4 months and it's been 5 Times now.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    ?
    I am not clear what secondary adjuncts (cimetidine [VEGF, EGFR signaling], aspirin, celecoxib [COX2], natural versions) you may have tried long or short term alongside your chemo treatments.

    Has your oncologist cited any negative biomarker work (e.g. serum VEGF, tissue CA19-9, Target Now Colon Panel) for not using some kind of anti-VEGF treatment like Avastin or cimetidine? The group based odds of VEGF being involved at stage IV with new liver mets is something like 80+%. High dose cimetidine may have a radioprotective standoff period (hours, days...?) from radiation. Avastin has side effects and a standoff period before surgery.

    In my wife's case, both CA19-9 and COX2 tissue biomarkers were positive, as they were likely to be, so we were glad we didn't wait for lab results (well after 2nd surgery) to start pre-emptively with mild generics and supplements for those biomarkers after discussions with two alternative MD and a LEF.org ND. For both surgeries, the surgeons were eager to give her Celecoxib but we depend on natural COX2 inhibitors and 1/4-1/2 aspirin alone after ~2 weeks following surgery (LEF advocates high dose celecoxib for COX2 inhibition, we prefer natural for long term maintenance without large tumors).

    When a surgeon and/or oncologist tells us "your're out of options", it means that *they* are out of options that they provide, and that it is time to find somebody or something else.
  • John23
    John23 Member Posts: 2,122 Member
    Pet Scans

    The way lymph nodes were explained to me, is that they were
    like "jail cells". They kept the bad cells captive until the good guys
    (the immune system) came and took the bad guys away.

    So, finding a cancer cell inside a lymph node is finding what
    is supposed to happen in the best of conditions! The lymph node
    is holding the cancer cell there, rather than allowing it to travel
    throughout your system.

    Both my surgeons (2006/2010) did not like the use of PET scans
    in the manner the industry is presently using it. The PET was
    intended to help define the cancer tumor for the surgical team,
    not locate possible cancer cells. Both my surgeons referred to the.
    use of the PET for "diagnostics" as a "fishing expeditions", and/or
    a "treasure hunts".

    If the node's purpose is to hold a bad (cancer) cell, why is there
    the sudden need to provide chemical therapy to kill it? Chemical
    therapy was not designed to kill single cancer cells, or even small
    clusters of cancer, it was designed to destroy tumors. Why not
    wait to see if the node will discharge the cancer cell to the immune
    system for removal?

    I had 7 of 28 nodes with cancer cells inside. They knew that because
    they took out 28 nodes for diagnosis; they did not take them out to
    prevent cancer from spreading (20 nodes for examination is the
    suggested minimum). Once a node is removed, you do not "get more",
    so taking out more is actually more harmful to your future well being,
    than just leaving things alone (as I have been made aware of)!

    I never had a PET scan, and refuse any attempt to suggest one. One
    oncologist sat at the foot of my bed in ICU, and made an appointment
    for me, for a PET scan that week. When she left, I cancelled the
    appointment. When my surgeon checked in later that day, I told him
    that the Onco made the appointment...... He said he would cancel it,
    and I told him I already did. He was amazed that the Onco would do
    such a thing, since it was too soon after surgery. All it would produce,
    he said, are dozens, if not thousands, of bright areas. Those areas are
    cells in their healing process, not cancer cells..... Healing cells uptake
    glucose as fast, or faster than cancer cells.

    I'll let -you- (the reader) decide what the Onco's motive might have been.

    I personally would not be worried about nodes, and even less interested
    in what a PET indicates. Let the cancer surgeon, not the oncologist, provide
    the diagnostics.

    I wish people would listen to their own gift of common sense and
    survival instincts, rather than another individual without the same
    inherently individual instinct each of us has.

    We were all given the gift of a survival instinct and common sense;
    many of us have survived the worst, thanks to our personal "gift".......
    while others toss it aside like trash and rely on "technology" and
    the education of others.

    "Trust thyself"

    Best of health to all,

    John
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Sorry!
    Sorry! Praying it can be taken care of and you will be cancer free!

    *hugs*
    Gail
  • steved
    steved Member Posts: 834 Member
    Lymph node
    SOrry to hear of your continued struggle- it really is two steps forwards and one back (sometimes feels like more back) in this journey. Spread to lymph nodes is common and really not a lot different than spread to any other place. The three main ways tumours spread is simply growing into local areas, getting into blood suppply (veins draining the area and because teh veins from the bowel drain to the liver most go there) and getting into lymph drainage systems which drain to lymph nodes.
    John 23 is partly right in his description but I would disagree with him on one or two points. The lymph system is about draining bad things from parts of teh body for the immune system to deal with and that is its purpose. This include cancer cells. Howeever, what happened in your situation is that cells have spread through through the drainage channels and have now grown into a small tumour. It is no longer a single cells or a small cluster, but a growth big enough to light up on PET scan. That is the reason why it needs active targetting in treatment and the main method for that is radiotherapy if accessible and more chemo.
    I appreciate your anxieties at present and you know continued spread on chemo is not great news but it is the most common picture in those of us in stage 4 of this disease. Whilst we still hold hopes of cure for many in stage 4 the main role of chemo is control. As you say you have been on the main protocol concoctions of chemo but there are still other options. I do think it is worth considering avastin and have you had your KRAS done and been having cetuximab with your folfiri? You have had a lot of 5fu and my understanding is that xeloda as oral 5fu doesn't offer anything much beyond the iv (except convenience). Then there are new developments such as regorafinib (see other discussions) that you may qualify for.

    However, for now take some time to get your head in order and adjust to this new news. Ask questions of your team and don't leave till you are satisfied you understand. Talk to people who you trust close to you about what this all means to you. the 'whirlwind meetings' describe are overwhelming at the time and it isn't till after taht you digest and process what has happened. Give yourself time to do this.

    My thoughts are with you,
    steve
  • Vickilg
    Vickilg Member Posts: 281 Member
    John23 said:

    Pet Scans

    The way lymph nodes were explained to me, is that they were
    like "jail cells". They kept the bad cells captive until the good guys
    (the immune system) came and took the bad guys away.

    So, finding a cancer cell inside a lymph node is finding what
    is supposed to happen in the best of conditions! The lymph node
    is holding the cancer cell there, rather than allowing it to travel
    throughout your system.

    Both my surgeons (2006/2010) did not like the use of PET scans
    in the manner the industry is presently using it. The PET was
    intended to help define the cancer tumor for the surgical team,
    not locate possible cancer cells. Both my surgeons referred to the.
    use of the PET for "diagnostics" as a "fishing expeditions", and/or
    a "treasure hunts".

    If the node's purpose is to hold a bad (cancer) cell, why is there
    the sudden need to provide chemical therapy to kill it? Chemical
    therapy was not designed to kill single cancer cells, or even small
    clusters of cancer, it was designed to destroy tumors. Why not
    wait to see if the node will discharge the cancer cell to the immune
    system for removal?

    I had 7 of 28 nodes with cancer cells inside. They knew that because
    they took out 28 nodes for diagnosis; they did not take them out to
    prevent cancer from spreading (20 nodes for examination is the
    suggested minimum). Once a node is removed, you do not "get more",
    so taking out more is actually more harmful to your future well being,
    than just leaving things alone (as I have been made aware of)!

    I never had a PET scan, and refuse any attempt to suggest one. One
    oncologist sat at the foot of my bed in ICU, and made an appointment
    for me, for a PET scan that week. When she left, I cancelled the
    appointment. When my surgeon checked in later that day, I told him
    that the Onco made the appointment...... He said he would cancel it,
    and I told him I already did. He was amazed that the Onco would do
    such a thing, since it was too soon after surgery. All it would produce,
    he said, are dozens, if not thousands, of bright areas. Those areas are
    cells in their healing process, not cancer cells..... Healing cells uptake
    glucose as fast, or faster than cancer cells.

    I'll let -you- (the reader) decide what the Onco's motive might have been.

    I personally would not be worried about nodes, and even less interested
    in what a PET indicates. Let the cancer surgeon, not the oncologist, provide
    the diagnostics.

    I wish people would listen to their own gift of common sense and
    survival instincts, rather than another individual without the same
    inherently individual instinct each of us has.

    We were all given the gift of a survival instinct and common sense;
    many of us have survived the worst, thanks to our personal "gift".......
    while others toss it aside like trash and rely on "technology" and
    the education of others.

    "Trust thyself"

    Best of health to all,

    John

    John
    Very well said. I know my liver surgeon always felt like the onc wanted pets and done to soon because he said that the spot was still healing and would light up.
  • janie1
    janie1 Member Posts: 753 Member
    steved said:

    Lymph node
    SOrry to hear of your continued struggle- it really is two steps forwards and one back (sometimes feels like more back) in this journey. Spread to lymph nodes is common and really not a lot different than spread to any other place. The three main ways tumours spread is simply growing into local areas, getting into blood suppply (veins draining the area and because teh veins from the bowel drain to the liver most go there) and getting into lymph drainage systems which drain to lymph nodes.
    John 23 is partly right in his description but I would disagree with him on one or two points. The lymph system is about draining bad things from parts of teh body for the immune system to deal with and that is its purpose. This include cancer cells. Howeever, what happened in your situation is that cells have spread through through the drainage channels and have now grown into a small tumour. It is no longer a single cells or a small cluster, but a growth big enough to light up on PET scan. That is the reason why it needs active targetting in treatment and the main method for that is radiotherapy if accessible and more chemo.
    I appreciate your anxieties at present and you know continued spread on chemo is not great news but it is the most common picture in those of us in stage 4 of this disease. Whilst we still hold hopes of cure for many in stage 4 the main role of chemo is control. As you say you have been on the main protocol concoctions of chemo but there are still other options. I do think it is worth considering avastin and have you had your KRAS done and been having cetuximab with your folfiri? You have had a lot of 5fu and my understanding is that xeloda as oral 5fu doesn't offer anything much beyond the iv (except convenience). Then there are new developments such as regorafinib (see other discussions) that you may qualify for.

    However, for now take some time to get your head in order and adjust to this new news. Ask questions of your team and don't leave till you are satisfied you understand. Talk to people who you trust close to you about what this all means to you. the 'whirlwind meetings' describe are overwhelming at the time and it isn't till after taht you digest and process what has happened. Give yourself time to do this.

    My thoughts are with you,
    steve

    TC and Gangsta Gail -
    TC and Gangsta Gail - thanks for the hug and prayers.

    Pepe - I thought of you (and Tans wife, and Kathryn_in _MN ) the second I heard lymph node. Your words lifted me up and I do appreciate you taking the time to respond. Always wishing you the best. I remember you being friends with your oncologist, so I am sure they will take good care of you.

    Tans - i haven't researched near the way you have. My conversations with docs are pretty minimal. I learn more from you, but i am still confused on so much. My excitement level on using Celebrex in this cancer battle has really elevated. But, again, I just don't have enough info to even ask good questions. What is a more natural cox-2 that you use? I am Kras mutant, so that eliminates an option, but I thought someone was doing a trial on adding something to Erbitux to make it useful for KRAS mutants. Maybe this is taking time (years).
    I take Protonics which reduces stomach acid.....recommended while I use the hepatic pump. I can't imagine that I could take cimetidine(sp), too. Oh cimetidine.....i don't fully understand. And you mentioned that along with radiation....something. Do you mean to take cimetidine before/after radiation for (reason?). Sorry, a bit frazzled.
    I would love to know if there is anything that would decrease the damage from PET/CT scan contrast. I feel my kidneys are taking a toll. There's got to be something. Anyway, thanks as always. You always lift my spirits.....kicking arse your way.

    Steve - thanks for your calming words. That's what you are about. That's why I think your upcoming surgery and rehab will go well.
    ( Kras- mutant here, so no Erbitux for me....that's why I was getting panicky......but I will find out more at next appt. It was just a very bad week.

    John and Vicki - My first onc i think just loved to order a PET scan. My current onc and surgeon don't really want it, but I can see why this time she went for it. My liver surgery was in January, so shouldn't skew the PET. Before this, hadn't had a PET in a long time.
    John, for what it's worth, i do go to a fairly well-known onc. She gets patients from all over the world. I talk to people in the waiting room week after week who are currently disease-free, many, for years. As to getting a second opinion from a "different" group, not connected to my current onc.....probably I will have to pass on that (ask Phillieg). Right now, where I go, gives me the best examples of good outcomes. Real live examples.
    I would love to do something else, but I just don't have any live examples. But if things go way south with current plan, then, yes, WTH.
    I have a Chinese friend who I asked about doing TCM. She vehemently said, don't do it.......and this is a person who has magnets taped to her neck. Sooooooooooo, this is what makes decisions soooooo hard.

    (Sorry this is so long)
  • danker
    danker Member Posts: 1,276 Member
    John23 said:

    Pet Scans

    The way lymph nodes were explained to me, is that they were
    like "jail cells". They kept the bad cells captive until the good guys
    (the immune system) came and took the bad guys away.

    So, finding a cancer cell inside a lymph node is finding what
    is supposed to happen in the best of conditions! The lymph node
    is holding the cancer cell there, rather than allowing it to travel
    throughout your system.

    Both my surgeons (2006/2010) did not like the use of PET scans
    in the manner the industry is presently using it. The PET was
    intended to help define the cancer tumor for the surgical team,
    not locate possible cancer cells. Both my surgeons referred to the.
    use of the PET for "diagnostics" as a "fishing expeditions", and/or
    a "treasure hunts".

    If the node's purpose is to hold a bad (cancer) cell, why is there
    the sudden need to provide chemical therapy to kill it? Chemical
    therapy was not designed to kill single cancer cells, or even small
    clusters of cancer, it was designed to destroy tumors. Why not
    wait to see if the node will discharge the cancer cell to the immune
    system for removal?

    I had 7 of 28 nodes with cancer cells inside. They knew that because
    they took out 28 nodes for diagnosis; they did not take them out to
    prevent cancer from spreading (20 nodes for examination is the
    suggested minimum). Once a node is removed, you do not "get more",
    so taking out more is actually more harmful to your future well being,
    than just leaving things alone (as I have been made aware of)!

    I never had a PET scan, and refuse any attempt to suggest one. One
    oncologist sat at the foot of my bed in ICU, and made an appointment
    for me, for a PET scan that week. When she left, I cancelled the
    appointment. When my surgeon checked in later that day, I told him
    that the Onco made the appointment...... He said he would cancel it,
    and I told him I already did. He was amazed that the Onco would do
    such a thing, since it was too soon after surgery. All it would produce,
    he said, are dozens, if not thousands, of bright areas. Those areas are
    cells in their healing process, not cancer cells..... Healing cells uptake
    glucose as fast, or faster than cancer cells.

    I'll let -you- (the reader) decide what the Onco's motive might have been.

    I personally would not be worried about nodes, and even less interested
    in what a PET indicates. Let the cancer surgeon, not the oncologist, provide
    the diagnostics.

    I wish people would listen to their own gift of common sense and
    survival instincts, rather than another individual without the same
    inherently individual instinct each of us has.

    We were all given the gift of a survival instinct and common sense;
    many of us have survived the worst, thanks to our personal "gift".......
    while others toss it aside like trash and rely on "technology" and
    the education of others.

    "Trust thyself"

    Best of health to all,

    John

    john23
    Totally agree with your comment about letting cancer surgeon make decisions. My onc wanted more chemo after resection which surgeon vetoed. Faith in my surgeon has made me NED for last 2 years.
  • janie1
    janie1 Member Posts: 753 Member
    danker said:

    john23
    Totally agree with your comment about letting cancer surgeon make decisions. My onc wanted more chemo after resection which surgeon vetoed. Faith in my surgeon has made me NED for last 2 years.

    Hi Danker,
    I agree, too, but

    Hi Danker,

    I agree, too, but I have always had some cancer activity. Haven't gotten to an NED state (yet). If I get there, then a chemo break will be highly necessary.
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    janie1 said:

    TC and Gangsta Gail -
    TC and Gangsta Gail - thanks for the hug and prayers.

    Pepe - I thought of you (and Tans wife, and Kathryn_in _MN ) the second I heard lymph node. Your words lifted me up and I do appreciate you taking the time to respond. Always wishing you the best. I remember you being friends with your oncologist, so I am sure they will take good care of you.

    Tans - i haven't researched near the way you have. My conversations with docs are pretty minimal. I learn more from you, but i am still confused on so much. My excitement level on using Celebrex in this cancer battle has really elevated. But, again, I just don't have enough info to even ask good questions. What is a more natural cox-2 that you use? I am Kras mutant, so that eliminates an option, but I thought someone was doing a trial on adding something to Erbitux to make it useful for KRAS mutants. Maybe this is taking time (years).
    I take Protonics which reduces stomach acid.....recommended while I use the hepatic pump. I can't imagine that I could take cimetidine(sp), too. Oh cimetidine.....i don't fully understand. And you mentioned that along with radiation....something. Do you mean to take cimetidine before/after radiation for (reason?). Sorry, a bit frazzled.
    I would love to know if there is anything that would decrease the damage from PET/CT scan contrast. I feel my kidneys are taking a toll. There's got to be something. Anyway, thanks as always. You always lift my spirits.....kicking arse your way.

    Steve - thanks for your calming words. That's what you are about. That's why I think your upcoming surgery and rehab will go well.
    ( Kras- mutant here, so no Erbitux for me....that's why I was getting panicky......but I will find out more at next appt. It was just a very bad week.

    John and Vicki - My first onc i think just loved to order a PET scan. My current onc and surgeon don't really want it, but I can see why this time she went for it. My liver surgery was in January, so shouldn't skew the PET. Before this, hadn't had a PET in a long time.
    John, for what it's worth, i do go to a fairly well-known onc. She gets patients from all over the world. I talk to people in the waiting room week after week who are currently disease-free, many, for years. As to getting a second opinion from a "different" group, not connected to my current onc.....probably I will have to pass on that (ask Phillieg). Right now, where I go, gives me the best examples of good outcomes. Real live examples.
    I would love to do something else, but I just don't have any live examples. But if things go way south with current plan, then, yes, WTH.
    I have a Chinese friend who I asked about doing TCM. She vehemently said, don't do it.......and this is a person who has magnets taped to her neck. Sooooooooooo, this is what makes decisions soooooo hard.

    (Sorry this is so long)

    J and Kidneys
    Bingo, J!

    My kidneys have taken a big hit over the past eight-years...I'll have to say that I think much of it came in the form of Irinotecan aka Camptosar aka CPT-11.....the literature states that it's big on renal damage.

    Were I to have to do anymore of that, I'd probably end up on a full-time catheter...things were very bad at the end of my last treatment.

    The barium contrast we drink (if you don't do iodine) is equally hard on your kidneys as well....mine just ache after I do it.

    I've been moved to every six month scans now....so eliminating one or two scans with contrast will help slow down that damage......and my place doesn't believe in PETs at all....I've done 1 of those in the three years I'm there.....that can only help as well.

    So, I hear you.....:)

    -c
  • John23
    John23 Member Posts: 2,122 Member
    John23 said:

    Pet Scans

    The way lymph nodes were explained to me, is that they were
    like "jail cells". They kept the bad cells captive until the good guys
    (the immune system) came and took the bad guys away.

    So, finding a cancer cell inside a lymph node is finding what
    is supposed to happen in the best of conditions! The lymph node
    is holding the cancer cell there, rather than allowing it to travel
    throughout your system.

    Both my surgeons (2006/2010) did not like the use of PET scans
    in the manner the industry is presently using it. The PET was
    intended to help define the cancer tumor for the surgical team,
    not locate possible cancer cells. Both my surgeons referred to the.
    use of the PET for "diagnostics" as a "fishing expeditions", and/or
    a "treasure hunts".

    If the node's purpose is to hold a bad (cancer) cell, why is there
    the sudden need to provide chemical therapy to kill it? Chemical
    therapy was not designed to kill single cancer cells, or even small
    clusters of cancer, it was designed to destroy tumors. Why not
    wait to see if the node will discharge the cancer cell to the immune
    system for removal?

    I had 7 of 28 nodes with cancer cells inside. They knew that because
    they took out 28 nodes for diagnosis; they did not take them out to
    prevent cancer from spreading (20 nodes for examination is the
    suggested minimum). Once a node is removed, you do not "get more",
    so taking out more is actually more harmful to your future well being,
    than just leaving things alone (as I have been made aware of)!

    I never had a PET scan, and refuse any attempt to suggest one. One
    oncologist sat at the foot of my bed in ICU, and made an appointment
    for me, for a PET scan that week. When she left, I cancelled the
    appointment. When my surgeon checked in later that day, I told him
    that the Onco made the appointment...... He said he would cancel it,
    and I told him I already did. He was amazed that the Onco would do
    such a thing, since it was too soon after surgery. All it would produce,
    he said, are dozens, if not thousands, of bright areas. Those areas are
    cells in their healing process, not cancer cells..... Healing cells uptake
    glucose as fast, or faster than cancer cells.

    I'll let -you- (the reader) decide what the Onco's motive might have been.

    I personally would not be worried about nodes, and even less interested
    in what a PET indicates. Let the cancer surgeon, not the oncologist, provide
    the diagnostics.

    I wish people would listen to their own gift of common sense and
    survival instincts, rather than another individual without the same
    inherently individual instinct each of us has.

    We were all given the gift of a survival instinct and common sense;
    many of us have survived the worst, thanks to our personal "gift".......
    while others toss it aside like trash and rely on "technology" and
    the education of others.

    "Trust thyself"

    Best of health to all,

    John

    Pet node?
    Maybe we all have a pet node!

    An "Abstract" excerpt:

    "In patients with positive mediastinal PET mages, invasive
    surgical staging remains mandatory because of the possibility of
    false-positive findings due to inflammatory nodes or granulomatous
    disorders. In the search for metastatic spread, PET is a useful
    adjunct to conventional imaging. This may be due to the finding
    of unexpected metastatic lesions or due to exclusion of malignancy
    in lesions that are equivocal on standard imaging.

    However, at this time, PET does not replace conventional imaging.
    Large-scale randomized studies are currently examining whether
    PET staging will actually improve the appearance of lung cancer outcome.
    "


    From: The Oncologist (Journal of the Society for Translational Oncology)

    I realize that this article is not "new", but it is more concise and easier
    to read than most documents to be found on the web. Nothing has
    changed; the technology remains the same, and later journals reflect
    the same theme.

    It is easy to become panicked when hearing results of scans, and
    even more so when a specialist is saying the words. But no-one
    should panic! You have to try to remain calm, and make certain
    you get another opinion from another surgeon specializing in cancer.

    The "second opinion" should be from a different surgeon that is
    not of the same group or association, and preferably not in the
    same town as the present team that is treating you.

    Surgeons usually are more objective regarding cancer situations
    than Oncologists, and often have other views on a course of action
    that can save your life.

    Get other opinions prior to agreeing to -any- remedy. Use your
    gift of logic and instincts for self-survival in your effort to beat
    cancer at any stage.

    Staying alive is not always that difficult, when we give ourselves
    the time to think things through.

    You're probably wondering when I'm going to toss in the
    "TCM card", right? Ok.... I just did.

    If anyone is even considering an "alternative", treat the alternative
    just as you should treat any other modality. Look for data that
    supports the claims, and question any claim.

    That includes all of western medicine practices as well!

    Try to understand, that the cancer is growing inside you because
    your body/immune system is allowing it to do so. No amount of
    toxic chemical (that manages not to kill you), is going to manage to
    stop cancer from forming.

    Weakening your immune system allows cancer to grow. That notion
    is supported by the mere fact that they stop chemical therapy if/when
    your immune system becomes too weak. It is why the chemicals used
    in "chemo" are well known carcinogenic; they weaken your system
    by damaging your good cells. Damaged cells were being allowed to remain
    in your system, and that was the cause of your cancer to begin with.

    Chemo can help knock down tumors, and may be the best way
    to attack what might be on the cusp of killing you immediately.
    For fast growing, and/or life threatening cancer growth, whatever
    works fastest, is usually the best!

    But your overall health should never take the major hit; how can
    anyone be expected to survive massive toxic chemical attacks
    to their body and soul?

    Options are there for your survival, but be careful and be
    very selective. Take time to allow your better senses to go
    into action.....

    Above all, do not allow fear to guide you.

    Easy to say, I know... But to beat the odds, you have to do
    what makes your body feel best, and you have to work at it.

    It's a relentless fight, and some of us will succumb anyway,
    but many, many of us will outlive the prognosis that was
    given to us; some by years and years and years.

    Think positive; "Trust Thyself".

    Best of hopes,

    John
  • patricko3312
    patricko3312 Member Posts: 1
    John23 said:

    Pet Scans

    The way lymph nodes were explained to me, is that they were
    like "jail cells". They kept the bad cells captive until the good guys
    (the immune system) came and took the bad guys away.

    So, finding a cancer cell inside a lymph node is finding what
    is supposed to happen in the best of conditions! The lymph node
    is holding the cancer cell there, rather than allowing it to travel
    throughout your system.

    Both my surgeons (2006/2010) did not like the use of PET scans
    in the manner the industry is presently using it. The PET was
    intended to help define the cancer tumor for the surgical team,
    not locate possible cancer cells. Both my surgeons referred to the.
    use of the PET for "diagnostics" as a "fishing expeditions", and/or
    a "treasure hunts".

    If the node's purpose is to hold a bad (cancer) cell, why is there
    the sudden need to provide chemical therapy to kill it? Chemical
    therapy was not designed to kill single cancer cells, or even small
    clusters of cancer, it was designed to destroy tumors. Why not
    wait to see if the node will discharge the cancer cell to the immune
    system for removal?

    I had 7 of 28 nodes with cancer cells inside. They knew that because
    they took out 28 nodes for diagnosis; they did not take them out to
    prevent cancer from spreading (20 nodes for examination is the
    suggested minimum). Once a node is removed, you do not "get more",
    so taking out more is actually more harmful to your future well being,
    than just leaving things alone (as I have been made aware of)!

    I never had a PET scan, and refuse any attempt to suggest one. One
    oncologist sat at the foot of my bed in ICU, and made an appointment
    for me, for a PET scan that week. When she left, I cancelled the
    appointment. When my surgeon checked in later that day, I told him
    that the Onco made the appointment...... He said he would cancel it,
    and I told him I already did. He was amazed that the Onco would do
    such a thing, since it was too soon after surgery. All it would produce,
    he said, are dozens, if not thousands, of bright areas. Those areas are
    cells in their healing process, not cancer cells..... Healing cells uptake
    glucose as fast, or faster than cancer cells.

    I'll let -you- (the reader) decide what the Onco's motive might have been.

    I personally would not be worried about nodes, and even less interested
    in what a PET indicates. Let the cancer surgeon, not the oncologist, provide
    the diagnostics.

    I wish people would listen to their own gift of common sense and
    survival instincts, rather than another individual without the same
    inherently individual instinct each of us has.

    We were all given the gift of a survival instinct and common sense;
    many of us have survived the worst, thanks to our personal "gift".......
    while others toss it aside like trash and rely on "technology" and
    the education of others.

    "Trust thyself"

    Best of health to all,

    John

    Lymph?

    John,

    I'm a first time poster and after scouring the sight for some clarity, you have eloquently answered my question.  GREAT ananlogy about the ''jail cell''...thank you!  

    My best to all and EVERY ONE OF YOU and your family are in my constant prayers.

    Thanks again John.

  • jen2012
    jen2012 Member Posts: 1,607 Member

    Lymph?

    John,

    I'm a first time poster and after scouring the sight for some clarity, you have eloquently answered my question.  GREAT ananlogy about the ''jail cell''...thank you!  

    My best to all and EVERY ONE OF YOU and your family are in my constant prayers.

    Thanks again John.

    Hi Patrick...this is an old
    Hi Patrick...this is an old post and many wont open it and see your reply. Start a topic if you have any questions or just to introduce yourself...folks here are great.

    Joan...if you happen to see this I'd love to know how you are doing?!
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    I am so sorry...hoping they

    I am so sorry...hoping they can put the breaks on the run away train for you.  I had 4 out of 18 lymph nodes tested come back positive.  I am a stage 3 ... Signet ring appendix cancer.  Try not to read to much into the lymph node involvement.... It may just be localized.  had id 6 months of the Folfox...yes, I have neuropathy... But I also have some peace of mind that I did everything I could to stop this disease At the time.  I am now seeing an appendix cancer specialist...because of my pathology... I feel that I am in the right hands for now.  When I feelit is Lon longer working...I will seek another opinion.  i wish you all the best.