pain during swallowing almost 1 year post treatment

joannaw81
joannaw81 Member Posts: 185 Member
in Head and Neck Cancer #1
Hello, it's now been over 1 year since my mom's first surgury on 11/15/10 for tonsil cancer and radiation which was completed on 2/17/11, second surgury for small tongue cancer was on 10/6/11. Yesterday we went to her ENT and we spoke about my mom's problem. She is having slight pain during swallowing in the same spot as her original cancer. A little ear pain or ruther iching as well. Doctor scoped her and said he doesn't see anything but as long as the pain comes and goes it is nothing to be worried about. If the pain will be there all the time and if it will get worse then we will go for CT or PET scan next month. Not sure what to think, I am already fricking out since my mom already had 2 surguries done. Anyone any advise?

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    If she hasn't had a PET scan
    I would request one be done no matter what. Until then, you and your mom arent going to rest easy. Only 10% of these cancers form a white plaque on the lining tissues of the throat. This can make them hard to see, even to a scope done by a trained professional. And after treatment the tissues are woody enough that palpation can miss them too.

    So why wait? He's right, intermittent pain is probably not cancer, but if you guys are like the rest of us, now that you're worried about it, the pain is likely to become constant.

    Best to you.

    Pat
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    Lots of If's
    If your not confident in what your doctor is sharing then ask for the scan and tell him it might be the only way to be able to relax. Keep in mind scans do not always give what your looking for, how many times have we heard... i am not sure what will happen when we get in there as the doc can not tell all by the scan. this is were the confidence you have in your doc shows. having a positive attitude that you trust your doc is so huge, once your confident with the attitude you begin to believe all will be fine. if's and uncertainty can we taken care off by positive mental attitude.
    i recall pretty much going with what my doc thought with much confidence.

    good luck with which ever you choose.

    john
  • robinleigh
    robinleigh Member Posts: 297
    #4
    My husband is eight months
    My husband is eight months out and still has tongue pain. The net says he is healing well and that it can take up to two years to totally heal. He still uses pain med about once a day before dinnertime and it helps a lot.

    Has your mom had a scan yet? My husband has had two so he knows there is nothing lighting up as cancer being back in the area.

    Good luck!
    Robin
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #5
    robinleigh said:

    My husband is eight months
    My husband is eight months out and still has tongue pain. The net says he is healing well and that it can take up to two years to totally heal. He still uses pain med about once a day before dinnertime and it helps a lot.

    Has your mom had a scan yet? My husband has had two so he knows there is nothing lighting up as cancer being back in the area.

    Good luck!
    Robin

    PET
    last PET scan she had in June and it was all clear however after that she had another cancer pop on the side of her tongue and that did not light up on the scan so the scan will not always show everything. She had pain and a ucler on her tongue since April and in June it did not show anything. We will have a scan next month if the pain persist or worsens. my question is: can this pain be normal so long after treatment specially when she did not have it anymore? can pain go away for 2 months completely and then come back, is that possible?
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    joannaw81 said:

    PET
    last PET scan she had in June and it was all clear however after that she had another cancer pop on the side of her tongue and that did not light up on the scan so the scan will not always show everything. She had pain and a ucler on her tongue since April and in June it did not show anything. We will have a scan next month if the pain persist or worsens. my question is: can this pain be normal so long after treatment specially when she did not have it anymore? can pain go away for 2 months completely and then come back, is that possible?

    Joanna
    Short answer - yes, the pain can go away and come back again later. At least, it was that way for me and apparently some others here as well. It's part of our new normal.

    Deb
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #7
    D Lewis said:

    Joanna
    Short answer - yes, the pain can go away and come back again later. At least, it was that way for me and apparently some others here as well. It's part of our new normal.

    Deb

    ok thank you all for your
    ok thank you all for your answers, I will keep you posted
  • joannaw81
    joannaw81 Member Posts: 185 Member
    #8
    joannaw81 said:

    ok thank you all for your
    ok thank you all for your answers, I will keep you posted

    update
    just wanted to update you on what's going on. My mom's pain is still there, we went to her ENT again and scoped her again. Said he does not see anything and just to calm us down he ordered a CT scan (not PET) for next wednesday. He was very determined that there is nothing to worry about. He almost did not want to give refferal for the scan. But after treatment you supposed to have a pet every 6 months right? I don't understand how he works. It's weird. He should know that a human being is not able to see everything with a naked eye. Why do I have to beg him for a scan? In addition he does not like if I ask him any questions, he always thinks I am freaking out for nothing. He should realize what kind of sickness we are dealing here with and that being scared and nervous about every little new symptom that showes up is normal right?????????? anyway for now I am concerned about that scan coming up. I really want my mom to be ok. She went through so much and she is so strong but I am really scared that it may all change. the worse thing is that my mom doesn't speak english so I always have to translate, I cannot imagine telling her anther bad news, I just can't but hopefully I will not have to. Please tell how acurante is CT scan compering to PET scan....thank you
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #9
    joannaw81 said:

    update
    just wanted to update you on what's going on. My mom's pain is still there, we went to her ENT again and scoped her again. Said he does not see anything and just to calm us down he ordered a CT scan (not PET) for next wednesday. He was very determined that there is nothing to worry about. He almost did not want to give refferal for the scan. But after treatment you supposed to have a pet every 6 months right? I don't understand how he works. It's weird. He should know that a human being is not able to see everything with a naked eye. Why do I have to beg him for a scan? In addition he does not like if I ask him any questions, he always thinks I am freaking out for nothing. He should realize what kind of sickness we are dealing here with and that being scared and nervous about every little new symptom that showes up is normal right?????????? anyway for now I am concerned about that scan coming up. I really want my mom to be ok. She went through so much and she is so strong but I am really scared that it may all change. the worse thing is that my mom doesn't speak english so I always have to translate, I cannot imagine telling her anther bad news, I just can't but hopefully I will not have to. Please tell how acurante is CT scan compering to PET scan....thank you

    PET is more accurate than CT
    It is also a lot more expensive. Here is a reference: http://www.wvm.petctmobile.com/zportal/portals/pat/cancer/other/head_and_neck

    This question comes up all the time. It is better to have ANY scan, than no scan at all. The insurance industry also has pretty strong opinions on this. The PET is over twice as expensive as the CT. So this is a frequently contested issue, both the type of scan, and the frequency are the topics of a lot of debate.


    Pat
  • Daddisgrl
    Daddisgrl Member Posts: 116
    #10
    joannaw81 said:

    update
    just wanted to update you on what's going on. My mom's pain is still there, we went to her ENT again and scoped her again. Said he does not see anything and just to calm us down he ordered a CT scan (not PET) for next wednesday. He was very determined that there is nothing to worry about. He almost did not want to give refferal for the scan. But after treatment you supposed to have a pet every 6 months right? I don't understand how he works. It's weird. He should know that a human being is not able to see everything with a naked eye. Why do I have to beg him for a scan? In addition he does not like if I ask him any questions, he always thinks I am freaking out for nothing. He should realize what kind of sickness we are dealing here with and that being scared and nervous about every little new symptom that showes up is normal right?????????? anyway for now I am concerned about that scan coming up. I really want my mom to be ok. She went through so much and she is so strong but I am really scared that it may all change. the worse thing is that my mom doesn't speak english so I always have to translate, I cannot imagine telling her anther bad news, I just can't but hopefully I will not have to. Please tell how acurante is CT scan compering to PET scan....thank you

    I'm sorry you're dealing
    I'm sorry you're dealing with a Dr that is not listening.

    I do not use doctors like this & suggest that if you do not get the satisfaction you deserve; to find a large university cancer center & get another opinion. Every one of my hub's Dr's at Jefferson in Philly were very patient with my huge list of questions

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