I just read on line that; having a high level of pain after treatment is a possible sign for a reacu

arndog64
arndog64 Member Posts: 537
in Head and Neck Cancer #1
I just read on line that; having a high of level pain after treatment is a possible sign for a reacurrence.I found the article interesting, being that my husband had a high level of pain before, during and afterwords. Kinda freaked me out.. I am always worried about the reacurrence thing. I guess I need to quit getting online and get my butt to work. I am looking for an answer that I know I will never find, and that is a cut and dry answer telling me wether or not my husbands cancer will come back or not. I know I am not the only one searching for these answers. Why do we drive ourselves crazy searching through articles and studies for answers, that are not there?
«1

Comments

  • Dav1965
    Dav1965 Member Posts: 132
    #2
    I understand
    I was kept in a coma 6 or 7 days after my surgery because of swelling and pain. Now i have a cyst in my jaw thats not suppose to be cancer we will see. Just take it one day at a time. God bless. David
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #3
    Dav1965 said:

    I understand
    I was kept in a coma 6 or 7 days after my surgery because of swelling and pain. Now i have a cyst in my jaw thats not suppose to be cancer we will see. Just take it one day at a time. God bless. David

    High level of pain linked to recurrence.
    Yeah, someone else mentioned that a week or so ago. It kind of upset me when I read it too.
  • DominicM
    DominicM Member Posts: 18
    #4
    sweetblood22 said:

    High level of pain linked to recurrence.
    Yeah, someone else mentioned that a week or so ago. It kind of upset me when I read it too.

    No pain, no gain?
    I wish I could recall the article, But I read in one of the magazines in the doc's waiting room about "no pain, no gain" and how those with the most pain have the most successful treatment.....which concerned me because I had basically no pain through my treatment....kinda goes back to what the doc's say, "Everyone is different".
  • adventurebob
    adventurebob Member Posts: 691
    #5
    not unless it is
    Until it's diagnosed by the doc it's not recurrence, it's just a high level of pain. Same goes with anything. It's not cancer until it is. Make sure to let the docs know everything that's going on and let them do the diagnosing. Believe that it's not cancer until you hear differently. Believing otherwise isn't healthy for you or him. It is understandable though.

    Bob
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Pain - Recurrence - Crazy
    Pain level is relative to each of us, like Dominic says, I also didn't have much pain or complication. But that being said, I can only compare to my experience and reading od others. Whose to say mine was less or theirs more.... Maybe I have a higher threshold, maybe they a lower.

    I'm sure we all worry or know that recurrence is a possibilty. But no one can say until it happens, you can have the least possible cancer for recurrence or the highest potential, doesn't mean for you that either will happen.

    It's hard not to let it consume you, and I'm sure during time it lessens with the more favorable reports and scans. Not quite sure how to give advice on that because I'm still kindo of in Limbo. Sometimes I think about it, others I don't.....

    I'm concerned, aware and know the possibility is there. But also, until it's a reality there's not really a game plan other than living for now and dealing with it if it rolls around again.

    Best,
    John
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #7
    Skiffin16 said:

    Pain - Recurrence - Crazy
    Pain level is relative to each of us, like Dominic says, I also didn't have much pain or complication. But that being said, I can only compare to my experience and reading od others. Whose to say mine was less or theirs more.... Maybe I have a higher threshold, maybe they a lower.

    I'm sure we all worry or know that recurrence is a possibilty. But no one can say until it happens, you can have the least possible cancer for recurrence or the highest potential, doesn't mean for you that either will happen.

    It's hard not to let it consume you, and I'm sure during time it lessens with the more favorable reports and scans. Not quite sure how to give advice on that because I'm still kindo of in Limbo. Sometimes I think about it, others I don't.....

    I'm concerned, aware and know the possibility is there. But also, until it's a reality there's not really a game plan other than living for now and dealing with it if it rolls around again.

    Best,
    John

    John I like your game plan.
    It's all any of us can do.

    Deb
  • Pam M
    Pam M Member Posts: 2,196
    #8
    Dav1965 said:

    I understand
    I was kept in a coma 6 or 7 days after my surgery because of swelling and pain. Now i have a cyst in my jaw thats not suppose to be cancer we will see. Just take it one day at a time. God bless. David

    good Luck
    Dav1965,
    HOpe the cyst situation is resolved in a very boring manner.
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #9
    I disagree & I'll tell you
    I disagree & I'll tell you why.

    1) pretty sure your hub had different chemo then most have. Each chemo has their own side effects.

    2) Radiation machines can give off more rads then supposed to if not calibrated right

    3) Rads in general- depending on where the target area is; some may be larger or smaller; larger area may have more pain; more to heal

    4) Each Dr has their own way to do surgery- may cut more/less

    5) Pain meds do not react the same in everyone. A generic percocet may knock one person out; & to the other; may not offer any pain relief. Some pain meds may actually cause more pain- I've had this happen.

    6) We all have different pain thresholds & handle pain differently.

    I've been where you are- stubborn hub too. Treatment is hard enough. Please don't make yourself crazy reading stuff like this. My hub had bad pain after treatment ended (12/24/09); so far he's fine.

    I honestly believe that outcome has a lot to do with where you are treated & it's why I didn't take it lightly with finding a top center for my hub.
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #10
    Daddisgrl said:

    I disagree & I'll tell you
    I disagree & I'll tell you why.

    1) pretty sure your hub had different chemo then most have. Each chemo has their own side effects.

    2) Radiation machines can give off more rads then supposed to if not calibrated right

    3) Rads in general- depending on where the target area is; some may be larger or smaller; larger area may have more pain; more to heal

    4) Each Dr has their own way to do surgery- may cut more/less

    5) Pain meds do not react the same in everyone. A generic percocet may knock one person out; & to the other; may not offer any pain relief. Some pain meds may actually cause more pain- I've had this happen.

    6) We all have different pain thresholds & handle pain differently.

    I've been where you are- stubborn hub too. Treatment is hard enough. Please don't make yourself crazy reading stuff like this. My hub had bad pain after treatment ended (12/24/09); so far he's fine.

    I honestly believe that outcome has a lot to do with where you are treated & it's why I didn't take it lightly with finding a top center for my hub.

    Interesting article...
    When hub was being admitted for a thrush infection; we found an issue of Newsweek in the waiting room. I found the article online & always suggest people read it. Very interesting article on how not all cancer centers are the same. It's long but very worth reading.

    Why a Top Cancer Center Could Save Your Life : Newsweek Health

    The right doctors can make all the difference when it comes to treating cancer. So why don't we know who they are?

    Published Oct 17, 2009
    From the magazine issue dated Oct 26, 2009

    What You Don’t Know Might Kill You
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #11
    Daddisgrl said:

    I disagree & I'll tell you
    I disagree & I'll tell you why.

    1) pretty sure your hub had different chemo then most have. Each chemo has their own side effects.

    2) Radiation machines can give off more rads then supposed to if not calibrated right

    3) Rads in general- depending on where the target area is; some may be larger or smaller; larger area may have more pain; more to heal

    4) Each Dr has their own way to do surgery- may cut more/less

    5) Pain meds do not react the same in everyone. A generic percocet may knock one person out; & to the other; may not offer any pain relief. Some pain meds may actually cause more pain- I've had this happen.

    6) We all have different pain thresholds & handle pain differently.

    I've been where you are- stubborn hub too. Treatment is hard enough. Please don't make yourself crazy reading stuff like this. My hub had bad pain after treatment ended (12/24/09); so far he's fine.

    I honestly believe that outcome has a lot to do with where you are treated & it's why I didn't take it lightly with finding a top center for my hub.

    Agree also
    I agree that he pain level doesn't really have an indication of how successful treamtent is....

    Best
    JG
  • arndog64
    arndog64 Member Posts: 537
    #12
    Skiffin16 said:

    Agree also
    I agree that he pain level doesn't really have an indication of how successful treamtent is....

    Best
    JG

    Yeah common sense tells me
    Yeah common sense tells me not to take everything I read to heart. The golden rule, It's not a problem until it becomes a problem. Until then enjoy life!!!!!
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
    arndog64 said:

    Yeah common sense tells me
    Yeah common sense tells me not to take everything I read to heart. The golden rule, It's not a problem until it becomes a problem. Until then enjoy life!!!!!

    Texas
    So where...Galveston, El Paso, Corpus, Aransas Pass......

    JG
  • luv2cut1
    luv2cut1 Member Posts: 288
    #14
    i have read that too
    And I am in the same boat as you-always looking for answers and reassurances that no one can give. Every time I get on this board I get my spirits lifted by those who are enjoying life despite this disease.

    I read so much online and probably shouldn't. There is so much conflicting information. I will just keep praying for all of us and for a cure. It is so nice to know we are not alone.

    So glad things are going better for you. Good luck with the recovery.

    Myka
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    luv2cut1 said:

    i have read that too
    And I am in the same boat as you-always looking for answers and reassurances that no one can give. Every time I get on this board I get my spirits lifted by those who are enjoying life despite this disease.

    I read so much online and probably shouldn't. There is so much conflicting information. I will just keep praying for all of us and for a cure. It is so nice to know we are not alone.

    So glad things are going better for you. Good luck with the recovery.

    Myka

    Arndog

    If pain was a sign of the C coming back then I would have a lot of it. Don’t let things like this worry you and be very carful of what you read on the internet. There is a point that worrying will only make you sick and that you don’t need. Live life today and let tomorrow worry about its self, if you are not sure put yourself in the hands of the man up above.

    Take care and best wishes to you both
    Hondo
  • arndog64
    arndog64 Member Posts: 537
    #16
    Hondo said:

    Arndog

    If pain was a sign of the C coming back then I would have a lot of it. Don’t let things like this worry you and be very carful of what you read on the internet. There is a point that worrying will only make you sick and that you don’t need. Live life today and let tomorrow worry about its self, if you are not sure put yourself in the hands of the man up above.

    Take care and best wishes to you both
    Hondo

    Great advice Hondo.. I know
    Great advice Hondo.. I know you are right but it seems like I am borderline obsessed with surfing the net about cancer and gathering information. I guess I find comfort in gathering knowledge. I am sure once we start getting clean scans, I will learn to relax some. Until then, I am the crazy lady surfing the net.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #17
    arndog64 said:

    Great advice Hondo.. I know
    Great advice Hondo.. I know you are right but it seems like I am borderline obsessed with surfing the net about cancer and gathering information. I guess I find comfort in gathering knowledge. I am sure once we start getting clean scans, I will learn to relax some. Until then, I am the crazy lady surfing the net.

    Knowledge
    To be honest, this site has afforded me more knowledge than any single source that I have found...

    After all, where can you find this huge of a gathering of people that have actually went through the treatments and underwent every kind of side effect associated with the cancer and treatment?

    Best,
    John
  • luv2cut1
    luv2cut1 Member Posts: 288
    #18
    arndog64 said:

    Great advice Hondo.. I know
    Great advice Hondo.. I know you are right but it seems like I am borderline obsessed with surfing the net about cancer and gathering information. I guess I find comfort in gathering knowledge. I am sure once we start getting clean scans, I will learn to relax some. Until then, I am the crazy lady surfing the net.

    arndog
    You sound exactly like me-a fellow crazy lady surfing the net. Pat is 20 months out and just got his fourth all clear. For me the obsession is a little better but occasionally I fall back into the pattern. If you find a way out for good, let me know
    I do find that visiting this site really helps. Good luck.

    Myka
  • miccmill
    miccmill Member Posts: 248
    #19
    luv2cut1 said:

    arndog
    You sound exactly like me-a fellow crazy lady surfing the net. Pat is 20 months out and just got his fourth all clear. For me the obsession is a little better but occasionally I fall back into the pattern. If you find a way out for good, let me know
    I do find that visiting this site really helps. Good luck.

    Myka

    I agree with John
    This site ended up being all the web surfing I did during Glenn's treatment.

    His nurse cautioned me constantly as well as cautioned Charles (Irishgypsie) not to spend too much time reading stuff on the internet. Of course, we did it anyway.

    I've read the University of Iowa study a couple times now and find it about as easy to read as any research study which is not easy.

    Those patients who presented with pain AFTER treatment were routinely under treated for said pain and that includes imaging exams. A small number of people had a recurrence during their 1st year after treatment. This recurrence was accompanied by pain, sometimes new onset pain. This lead to conclusions about new onset pain after head and neck cancer treatment being related to recurrence. In general I felt they were trying get data on under treated pain and accidently saw a statistically significant increase in recurrence so it had to be included in the study as a finding. The study wasn't actually about that but it produced those findings.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #20
    miccmill said:

    I agree with John
    This site ended up being all the web surfing I did during Glenn's treatment.

    His nurse cautioned me constantly as well as cautioned Charles (Irishgypsie) not to spend too much time reading stuff on the internet. Of course, we did it anyway.

    I've read the University of Iowa study a couple times now and find it about as easy to read as any research study which is not easy.

    Those patients who presented with pain AFTER treatment were routinely under treated for said pain and that includes imaging exams. A small number of people had a recurrence during their 1st year after treatment. This recurrence was accompanied by pain, sometimes new onset pain. This lead to conclusions about new onset pain after head and neck cancer treatment being related to recurrence. In general I felt they were trying get data on under treated pain and accidently saw a statistically significant increase in recurrence so it had to be included in the study as a finding. The study wasn't actually about that but it produced those findings.

    I have to say, I really did
    I have to say, I really did not do too much reading about HNC. Probably not enough when it came to side effects and almost zero when it came to statistics, because i was bound and determined to beat the few i was told, they were dismal. It just would cause me anxiety. I have already outlived my life expectancy, so the rest is icing on the cake for me. :)
  • KareGiver
    KareGiver Member Posts: 301 Member
    #21
    sweetblood22 said:

    I have to say, I really did
    I have to say, I really did not do too much reading about HNC. Probably not enough when it came to side effects and almost zero when it came to statistics, because i was bound and determined to beat the few i was told, they were dismal. It just would cause me anxiety. I have already outlived my life expectancy, so the rest is icing on the cake for me. :)

    Understood
    Arndog,

    I am another "internet junkie" as far as checking things out...I want to know more. I am also a "glass half empty" kinda person and for the most part it has worked in my favor.
    It seems like good advice has been given on this thread. It appears that your husband is doing so much better than this time last week! Try not to fret too much but know you're not alone ;)
    And Sweet, the icing on the cake is the best part!

Discussion Boards