Just need some thoughts

ditto1
ditto1 Member Posts: 660
in Head and Neck Cancer #1

I recently posted about having ear pain and neck pain and received some calming replies.   However I called my Onc Doc today about it and received a call from his nurse.  She said that the ENT doc we see on the 31st would be able to evaluate that, and then I asked if any information on the PET scan, that was I made my mistake, she read me the PET report and now Im not sure if the tumors are back.  She read something about a reduction from 16 to 7 but I did not pick up what that meant and she was not sure.  My CT scan from about a month ago was clear and the ENT spoke to us about Norosis which I understand is the dead cells or something and now Im wondering if that means the scan is just seeing the Norosis tissue, I know Im not giving good information and I wish now she had just left the scan up to the ENT to share vs. my anxiety I now going thru.  Diane does not believe its anything other than what the ENT said they saw off the CT scan, and the PET scan could determine if a neck dysection would be necessary.  If the tumors gone why surgery.  Well I guess I will know on the 31st but seems like anxiety city until then.  If anyone can figure out what I am trying to share may have some feedback on this Norosis (misspelled Im sure) and why a CT scan shows NED and the PET might be showing something else.  Longtime Survivor you seem to be able to help us laymen so any thoughts you have if you see this would be appreciated, all you folks are my family now so any thoughts tech or otherwise would be appreciated

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    I know it's hard to relax when

    your mind is working overtime worrying about the "what if's"....my gut feeling tho is....the ear and neck pain is from rads....I believe what they might be talking about with the PET scan and dissection is IF they saw any activity in the lymphnodes....that is the tumor is gone, but IF something lit up in the nodes.  I don't think they are going to find anything.  Of course, you know I'm not very scientific....and certainly don't understand medical lingo....but those numbers you kicked out don't sound like tumor numbers to me....

    Maybe LTS will get on here and decipher what the nurse read to you....I know I'm not much help.

    p

  • Laralyn
    Laralyn Member Posts: 532
    #3
    So sorry you have to wait!

    That really sucks. I would be anxious too. It doesn't take much to set that off, I know. I don't have any medical advice, other than saying that you never know what's really going on until you talk to your doctor. It's human nature to think about the possible bad outcomes rather than the possible great outcomes, especially after what we've all been through. I'll be thinking of you!

  • Pam M
    Pam M Member Posts: 2,196
    #4
    But It COULD Be Good

    If CT looked good, I'd wonder if the PET activity (SUV) had previously been at a 16, and is now 7? 

    Please keep in mind that PET results may be elevated when you have an infection, or have recently done chemo.  Many here have had "hot spots" that turned out to be harmless.  I dunno what their PET numbers were when they were.

    Not to make you more anxious, but a PET can show activity that would make docs suspect cancer, even at the same time a CT shows nothing.  I was told you can sometimes see the increased cell activity (positive PET) when no mass appears on a CT. 

    I do feel that more people here have seen hot spots on follow-up PETs that turned out to be temporary, not cancerous than people who have had the same type of results, with activity being cancerous.

     

    As for necrosis, it's a fear most of us have, because we've heard some of the horror stories, about people with worst-case scenarios, needing extensive treatment to combat the necrosis.  The "worst" stories tend to stick in our minds more than the more mild cases.  Here's hoping you all are in the "boring and mild" club.

  • donfoo
    donfoo Member Posts: 1,771 Member
    #5
    Do not get stressed.

    First, it was probably not to have that report read by someone who could not explain it. These reports need to be interpreted by someone who has a knowledge and experience dealing with your specific case. Just forget what was read to you as the audience of this report is a medical professional not a patient. Words and descriptions mean different things so it is easy to misunderstand the meaning. Sure you hear the words but you lack the knowledge to turn those words into "what does that me to me and my condition and disease?" 

    It is very hard to deal with uncertainty but as has been said here plenty times, the craziness of what happens when your minds spins out of control dreaming up your own far worst case answers is ultimately worse, than just saying I DO NOT KNOW RIGHT NOW. and waiting a few days is not going to make ANY difference, so why stress out.

    As I said, easier said than done. :-)

    Don

     

     

  • ditto1
    ditto1 Member Posts: 660
    #6
    donfoo said:

    Do not get stressed.

    First, it was probably not to have that report read by someone who could not explain it. These reports need to be interpreted by someone who has a knowledge and experience dealing with your specific case. Just forget what was read to you as the audience of this report is a medical professional not a patient. Words and descriptions mean different things so it is easy to misunderstand the meaning. Sure you hear the words but you lack the knowledge to turn those words into "what does that me to me and my condition and disease?" 

    It is very hard to deal with uncertainty but as has been said here plenty times, the craziness of what happens when your minds spins out of control dreaming up your own far worst case answers is ultimately worse, than just saying I DO NOT KNOW RIGHT NOW. and waiting a few days is not going to make ANY difference, so why stress out.

    As I said, easier said than done. :-)

    Don

     

     

    Thank you

    Its funny sometimes in life we know the answers but just need to see if others are out there just to listen and offer a reply.  We go by one modo around here "IT AINT CANCER UNTIL THEY SAY IT IS" seems like when I 1st was told I had cancer it was less dramatic than waiting for scan results to see if its gone.  I believe this is because when we first went thru it, we just wanted it gone and we fought the toughest fight of our lives  and I no longer have 40lbs I can loose, tired of Doctor bills and the toll it takes on Diane my caretaker so that is why I believe we just get more anxious just knowing we really do not or cannot go thru this again.  Although many brave warriors men and women have proven to me you will do what you have to do.  So again thank you for your hand holding and with the lack of information thats likely what I was looking for.  Manly probably not but comforting.

  • VivianLee5689
    VivianLee5689 Member Posts: 546
    #7
    ditto1 said:

    Thank you

    Its funny sometimes in life we know the answers but just need to see if others are out there just to listen and offer a reply.  We go by one modo around here "IT AINT CANCER UNTIL THEY SAY IT IS" seems like when I 1st was told I had cancer it was less dramatic than waiting for scan results to see if its gone.  I believe this is because when we first went thru it, we just wanted it gone and we fought the toughest fight of our lives  and I no longer have 40lbs I can loose, tired of Doctor bills and the toll it takes on Diane my caretaker so that is why I believe we just get more anxious just knowing we really do not or cannot go thru this again.  Although many brave warriors men and women have proven to me you will do what you have to do.  So again thank you for your hand holding and with the lack of information thats likely what I was looking for.  Manly probably not but comforting.

    I empathize

    It is hard not to be anxious with everything you are going through.  I do believe people on this site give sound advice though.  We can't change what is, so why worry about something that may not be there to begin with.  Enjoy the present your appointment will be here soon enough and they will probably not be giving you bad news.  I pray for peace for you and Diane as you wait for your appointment.

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    Not to panicc

    I'm not sure if they are referring to a node which has decreased in size (hence these are millimeter readings) or SUV scores indicating the level of reactivity of the PET scan.  Either one is ok.  The SUV score thing is pretty compicated, but basically reflects the fact that things OTHER than cancer can cause a PET scan to light up.  Those things include infection, abscess, certain other diseases and NECROSIS.  Necrosis literally means "rotting".  It is a normal finding in nodes and in larger tumor volumes after radiation.

     

    If there was a neck node that was fairly large, it is a given that this may need to be surgically removed, and is a big reason why follow up is done by PET and by physical exam.  A number of regualar  posters here had to get partial neck disections after radiation completed.  This doesn't imply failure, it merely is part of the original treatment plan.  Don't sweat the details.  This one is gonna be ok.  BTW, I had my first treatment back when you didn't get a partial neck dissection, you had a complete neck dissection.  So I had a type one radical  neck dissection before radiation even started.  That's a pretty big surgery.  And only one node was positive.  Nowadays I wouldn't have gotten the neck dissection at all.

     

    best

     

    Pat

  • ditto1
    ditto1 Member Posts: 660
    #9
    longtermsurvivor said:

    Not to panicc

    I'm not sure if they are referring to a node which has decreased in size (hence these are millimeter readings) or SUV scores indicating the level of reactivity of the PET scan.  Either one is ok.  The SUV score thing is pretty compicated, but basically reflects the fact that things OTHER than cancer can cause a PET scan to light up.  Those things include infection, abscess, certain other diseases and NECROSIS.  Necrosis literally means "rotting".  It is a normal finding in nodes and in larger tumor volumes after radiation.

     

    If there was a neck node that was fairly large, it is a given that this may need to be surgically removed, and is a big reason why follow up is done by PET and by physical exam.  A number of regualar  posters here had to get partial neck disections after radiation completed.  This doesn't imply failure, it merely is part of the original treatment plan.  Don't sweat the details.  This one is gonna be ok.  BTW, I had my first treatment back when you didn't get a partial neck dissection, you had a complete neck dissection.  So I had a type one radical  neck dissection before radiation even started.  That's a pretty big surgery.  And only one node was positive.  Nowadays I wouldn't have gotten the neck dissection at all.

     

    best

     

    Pat

    Thanks Pat

    The Ent docs nurse called today and yes it seems they are talking about SUV counts, It was originallay 16 something and now around 6 something.  The Ent is planning on doing a thoart review with the tubes down my nose I would assume.  Its just the ear ache wont go away even with meds and the thoart is sore, I also feel some bumbs on the back side of my tongue with my finger.  I know Im just concerned and hoped I would never have to under go the surgery part but who would.  Again Pat thanks for you kind and knowledgeable response.

  • ditto1
    ditto1 Member Posts: 660
    #10
    longtermsurvivor said:

    Not to panicc

    I'm not sure if they are referring to a node which has decreased in size (hence these are millimeter readings) or SUV scores indicating the level of reactivity of the PET scan.  Either one is ok.  The SUV score thing is pretty compicated, but basically reflects the fact that things OTHER than cancer can cause a PET scan to light up.  Those things include infection, abscess, certain other diseases and NECROSIS.  Necrosis literally means "rotting".  It is a normal finding in nodes and in larger tumor volumes after radiation.

     

    If there was a neck node that was fairly large, it is a given that this may need to be surgically removed, and is a big reason why follow up is done by PET and by physical exam.  A number of regualar  posters here had to get partial neck disections after radiation completed.  This doesn't imply failure, it merely is part of the original treatment plan.  Don't sweat the details.  This one is gonna be ok.  BTW, I had my first treatment back when you didn't get a partial neck dissection, you had a complete neck dissection.  So I had a type one radical  neck dissection before radiation even started.  That's a pretty big surgery.  And only one node was positive.  Nowadays I wouldn't have gotten the neck dissection at all.

     

    best

     

    Pat

    Thanks Pat

    The Ent docs nurse called today and yes it seems they are talking about SUV counts, It was originallay 16 something and now around 6 something.  The Ent is planning on doing a thoart review with the tubes down my nose I would assume.  Its just the ear ache wont go away even with meds and the thoart is sore, I also feel some bumbs on the back side of my tongue with my finger.  I know Im just concerned and hoped I would never have to under go the surgery part but who would.  Again Pat thanks for you kind and knowledgeable response.

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