Dad 4 months out of treatment for Stage 4 tongue cancer-still in pain?

nicki74
nicki74 Member Posts: 55
edited March 2014 in Head and Neck Cancer #1
hello again, my poor father is still experiencing horrible pain.. he finished treatment chemo and radiation on june 17 and 18th.. he had 8 biopsies done about 3 months ago and they came backed no cancer, ENT was shocked because he said my father had a very advanced cancer... he was doing well this past month and gets the news that his brother has stage 4 rectal cancer, and has seemed to slip back a bit, is this normal? the ENT and oncologist both say that they do not see any cancer and he is progressing.. they have scheduled another biopsy for the end of this month.. as anyone out there experienced this pain 4 months out of treatment? he is soo scared that this is not "normal"... :-(

thank you all!

nicki

Comments

  • Pam M
    Pam M Member Posts: 2,196
    #2
    Sorry He's Suffering
    Nicki,

    I have seen folks here who were in pain months after treatment. Luckily for me, I'm not one of them.

    Idon't understand why docs keep doing biopsies if there's no cancer. Does your dad have suspicious growths? Are they surgical biopsies or needle?

    Hope your dad's pain eases soon. I think that the majority of us aren't in pain after four months, but I know that some folks do still have pain.
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    Pain
    Sad news to here your fathers brother has a different cancer, he will certainly have someone to look up to that has won his battle of treatment.
    I know there are so many that have side effects that last a long time and many who recover slowly. I was a slow recovery survivor. I had pain for at least 8-10 months after and then dealt with muscle neck pains for some time along with teeth, dry mouth and jaw. For me the scans showed area's of concern that ended in scar tissue. I have seen so many that are going thru what your dad and I went thru that the area of concerns show up scar tissue. Keep in mind it is your dad's choice to do a have biopsy or do a wait and see. I am continually reminded by a couple ENT friends that I have been poked enough do a wait and see. Visit the doctor more often to keep an eye on them.

    No way to say this is normal, however i would say what your father is going thru is not abnormal.

    Like my lead team doctor say's, "we can not find it just keep having fun!"
  • nicki74
    nicki74 Member Posts: 55
    #4
    fisrpotpe said:

    Pain
    Sad news to here your fathers brother has a different cancer, he will certainly have someone to look up to that has won his battle of treatment.
    I know there are so many that have side effects that last a long time and many who recover slowly. I was a slow recovery survivor. I had pain for at least 8-10 months after and then dealt with muscle neck pains for some time along with teeth, dry mouth and jaw. For me the scans showed area's of concern that ended in scar tissue. I have seen so many that are going thru what your dad and I went thru that the area of concerns show up scar tissue. Keep in mind it is your dad's choice to do a have biopsy or do a wait and see. I am continually reminded by a couple ENT friends that I have been poked enough do a wait and see. Visit the doctor more often to keep an eye on them.

    No way to say this is normal, however i would say what your father is going thru is not abnormal.

    Like my lead team doctor say's, "we can not find it just keep having fun!"

    hello fisrpotpe and pam
    hello thank you both for your responses! after treatment my dad had ulceration under his tongue, so about 3 months ago they biopsied that suspcious area and came back NED! Amen! he is just so concerned that this pain is not normal and that the doctors missed something.. i told him he had a very intense treatment and that he would be recovering for quite awhile.. he is still on the fentanyl patch (50) and takes the norco... he was first diagnosed in february of this year, and he is just confused on why this pain is still around if the cancer is gone.. the ulceration has got so much better, and he also had bone exposure (ouch) so has skin growing over it.. so those are signs of progress.. the doctors do not even had answers for him.. he is working with a great team at Rush in Chicago and we are soo grateful for what they have done for him.. unfortunately they are not sure what the pain is from.. so we will have another biopsy in about a month if ncessary... i just pray that his is all a part of his healing and some day my dad will get some relief and be able to get back to work..

    thank you again!

    nicki
  • rmkbrad
    rmkbrad Member Posts: 176
    #5
    Pain almost 6 months out
    I have pain still, I also had a biopsy done the first part of September. We don't heal that fast in the area that was radiated. I have asked the doctors about the pain and I was told that some people have pain as far out as 18 months with no signs of cancer. I finally quit taking the pain meds just before my last biopsy and refuse to take them now, make me to grogey, anyway keep up his spirits and things will get better.

    Brad
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
    rmkbrad said:

    Pain almost 6 months out
    I have pain still, I also had a biopsy done the first part of September. We don't heal that fast in the area that was radiated. I have asked the doctors about the pain and I was told that some people have pain as far out as 18 months with no signs of cancer. I finally quit taking the pain meds just before my last biopsy and refuse to take them now, make me to grogey, anyway keep up his spirits and things will get better.

    Brad

    I still have daily pain.
    I had a neck dissection in Jan of '09 then rads ended 5/15/09. My neck and my tongue are still in pain daily. About a two on the scale constantly and can flare to a 4 or 5 depending on what I do, or what I eat etc. So I'm 18 mnths out from rads and still have tongue pain, sensitive mouth, and very limited taste.
  • Pumakitty
    Pumakitty Member Posts: 652
    #7
    Sorry to hear
    Nicki,

    I am sorry to hear that you dad is still having these issues. My dad has been lucky and not having any realy pain issues. It is good that there is still no signs of cancer. There are days that my dad seems better then others. If he is worries about something his seems to not have the energy or the strength that he may have had days before. Like the other have posted I think it may just take some people more time to heal. Please keep us updated. PM me any time if you want to talk. I know how stressful the worry can be.

    Kathy
  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    Pain
    I am more then 5 years passed treatment and a lot of my pain is just starting, I am hoping to get into the Mayo clinic and have them check me from head to toe and see if they can figure out why
  • Kimba1505
    Kimba1505 Member Posts: 557
    #9
    Hondo said:

    Pain
    I am more then 5 years passed treatment and a lot of my pain is just starting, I am hoping to get into the Mayo clinic and have them check me from head to toe and see if they can figure out why

    Someone on these boards has said it very well...it is the recovery from the TREATMENT of cancer, not the cancer that is so difficult and painful. The treatment for head and neck cancer is brutal to a very active, critical part of the body: mouth, throat, neck, and head. Surgery, chemo and radiation takes its toll and does its own damage. Mark is still trying to figure out if his tightness and pain are from radiation or surgery...topic of discussion tonight at dinner actually. (3+ months out)
    I am very sorry your father has any pain, and of course it is worrisome...I feel a certain level of worry will NEVER be gone. Cancer takes things away...peace of mind is one of them. My best to his brother as he fights his battle.
    Kim
  • Scambuster
    Scambuster Member Posts: 973
    #10
    More info please
    Hi Nicki,

    Can you let us know more detail of your fathers condition? Exactly where is the pain(s) ?

    What condition is his mouth in now ie does he still have any ulcers at all ?

    Is the pain in the neck / muscle ? It is in the area where we had surgery ?

    Whatever info you can give may help some of us to share experience or suggestions.

    Tx
    Scam
  • santa6
    santa6 Member Posts: 29
    #11
    Can take a while
    I don't know why, but when I read your post I got that the pain is in his tongue. I reread it and you don't say that, but that's what I got. If that is the source of pain, I can tell you that the ulcers on my tongue from radiation burns were very painful and took 8 months to heal. It's dark and damp in there(not moist, damp!). About 5 months into that 8 month period I actually elected to have a portion of my tongue removed.

    It's a condition called Leukoplakia and is very painful, and can become pre-cancerous and cancerous if left unattended. There are gelsl you can apply to numb the pain.

    Your farther's "slipping back" - if by this you mean in spirits, he is most likely dealing with depression, as this is very common for cancer patients.
  • Kstrong
    Kstrong Member Posts: 1
    #12
    nicki74 said:

    hello fisrpotpe and pam
    hello thank you both for your responses! after treatment my dad had ulceration under his tongue, so about 3 months ago they biopsied that suspcious area and came back NED! Amen! he is just so concerned that this pain is not normal and that the doctors missed something.. i told him he had a very intense treatment and that he would be recovering for quite awhile.. he is still on the fentanyl patch (50) and takes the norco... he was first diagnosed in february of this year, and he is just confused on why this pain is still around if the cancer is gone.. the ulceration has got so much better, and he also had bone exposure (ouch) so has skin growing over it.. so those are signs of progress.. the doctors do not even had answers for him.. he is working with a great team at Rush in Chicago and we are soo grateful for what they have done for him.. unfortunately they are not sure what the pain is from.. so we will have another biopsy in about a month if ncessary... i just pray that his is all a part of his healing and some day my dad will get some relief and be able to get back to work..

    thank you again!

    nicki

    Hi Nicki,
    My father is with
    Hi Nicki,

    My father is with the team at RUSH as well. He had an ulceration at the base of his tongue on the spot where the tumor originally was. The biopsy thankfully came back negative and it is healing up..slowly. RUSH is an amazing place. Do you see Dr. Petruzzelli?

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