Tonsil cancer

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Liliallen
Liliallen Member Posts: 24 Member
in Head and Neck Cancer #1

Thanks for all the support that I found here! Such a bless ! My husband finished the treatment of chemo and radiation for stage 3 HPV. Tonsil cancer .It was tough but he was having a good recovery , gaining some weight , he lost 45 pounds during treatment but now after almost 4 months he is in a terrible pain in the ears and jaw , he starts to have flem again and he is losing the appetite , of course now he lost a few pounds again and I notice such a bad breath .

Tomorrow he will see the oncologist to see what It is going on with him , of course he is concerned .I wonder if it is part of te recovery those ups and down.I was happy that he was eating solid food even barbecue in our trip to ArgentIna in February just 2 weeks after he finished the treatment , It was like a miracle. 

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  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
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    ENT

    Was there an ENT in the mix for your treatment...? He/she is my main MD and has been throughout treatment, he diagnosed me actually. Anyways, that would be my first suggection as for a check-in..., Mine scopes me regularly, especially the first year out.

    I doubt that it's anything serious, it could even be due to wax build up incurred during treatment, which isn't uncommon for post Tx ear pain...

    But it's always a good idea to follow-up and communicate with your MD's..

    Thoughts and Prayers,

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    #3
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    I'm glad to hear he's checking in

    with his Dr., but like Skiffin...I'm thinking he should see his ENT....the ENT can scope out his throat and check it out up close and personal.  It's probably still recovering from radiation, as well as some rad damage may be rearing it's head...is he doing jaw and neck exercises to keep the muscles supple and moveable?  The exercises are found in the Superthread....and very simple....they can be done sitting watching TV.

    p 

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #4
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    phrannie51 said:

    I'm glad to hear he's checking in

    with his Dr., but like Skiffin...I'm thinking he should see his ENT....the ENT can scope out his throat and check it out up close and personal.  It's probably still recovering from radiation, as well as some rad damage may be rearing it's head...is he doing jaw and neck exercises to keep the muscles supple and moveable?  The exercises are found in the Superthread....and very simple....they can be done sitting watching TV.

    p 

    No bio on your home page ...

    Hi Lil,

    Glad to hear your husband made it through tx.  Wow, traveling that far after only 2 weeks out from tx...one tough guy.

    I looked on your bio page and did not see much info...so I don't know much about your husband full tx but what you mentioned. 

    You  did not say if he had surgery...if so, I have heard many folks on here develop temporary pain months out from surgery (nerve or scarring issues) ...some say it has left, others still deal with it.

    I assume he has had his post tx scan and it came back ned.  Did he have a PET/CT or just a CT after his last radiation?

    Bottom line is he is going to have the pain checked out and that's the right thing to do of course ... my whispered prayer is that it is nothing serious and that they can find remedy for the current pain.  This close after tx I imagine it is just side affects that will subside.

    Keep us posted.

    Tim

  • Liliallen
    Liliallen Member Posts: 24 Member
    #5
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    Tim6003 said:

    No bio on your home page ...

    Hi Lil,

    Glad to hear your husband made it through tx.  Wow, traveling that far after only 2 weeks out from tx...one tough guy.

    I looked on your bio page and did not see much info...so I don't know much about your husband full tx but what you mentioned. 

    You  did not say if he had surgery...if so, I have heard many folks on here develop temporary pain months out from surgery (nerve or scarring issues) ...some say it has left, others still deal with it.

    I assume he has had his post tx scan and it came back ned.  Did he have a PET/CT or just a CT after his last radiation?

    Bottom line is he is going to have the pain checked out and that's the right thing to do of course ... my whispered prayer is that it is nothing serious and that they can find remedy for the current pain.  This close after tx I imagine it is just side affects that will subside.

    Keep us posted.

    Tim

    Thank you

    Blessings to all!  Thanks for the answerings.My husband didn't not have surgery just radiation and chemo, in tonsil cancer HPV stage 3 , He did have a Pet Scan and CT , but the ENT told him the results of the Pet on the phone he said the activity level that It was 11 now It is 4 , which he said It was good news.He is going today to his oncology to further explanations and to see why he has such a terrible pain in the jaw and ear.He is 3 months out of treatment , the only thing that we know It is 3 different doctors checked his troat and they said that thdid don't see the tumor anymore. Before he started treatment he was told that It was just the tumor on the tonsil and It didn't spread .

     

    Yes I have no biography I have a  6 years old little girl that keep me busy ,she is the joy of the house :)

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
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    Liliallen said:

    Thank you

    Blessings to all!  Thanks for the answerings.My husband didn't not have surgery just radiation and chemo, in tonsil cancer HPV stage 3 , He did have a Pet Scan and CT , but the ENT told him the results of the Pet on the phone he said the activity level that It was 11 now It is 4 , which he said It was good news.He is going today to his oncology to further explanations and to see why he has such a terrible pain in the jaw and ear.He is 3 months out of treatment , the only thing that we know It is 3 different doctors checked his troat and they said that thdid don't see the tumor anymore. Before he started treatment he was told that It was just the tumor on the tonsil and It didn't spread .

     

    Yes I have no biography I have a  6 years old little girl that keep me busy ,she is the joy of the house :)

    ENT

    Hi...

    Again, I would see the ENT, if he isn't very proactive concerning you history and treatment, and especially follow-up future scans... You might want to seek one that is more involved...

    For the first two years and especially the first, regular ENT scopes and follow-up visits are pretty much the standard for every 3 - 4 months. That is when most recurrences apparently occur. So early detection is key in long term survival...

    Anyways, yes the other MD's were associated, each having their special talents/training...

    The ENT is the main one for all Ear Nose and Throat exams and consults... I would stick to him/her for specifics on associated aches, pains, etc...

    A phone call..., doesn't sound very involved... Who initally did the diagnosis or cancer?

    Best,

    John

  • Liliallen
    Liliallen Member Posts: 24 Member
    #7
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    New tumor or infection

    Just git a call from my husband he went to the ENT he was checking on his jaw pain and he said that It is something there he is not sure what It can be an infection from the radiation or A new tumor , OMG I try to stay positive but I can't help to be worried..Doctor says that it is a sore and a mass not sure if a tumor or an infection 

    Now we are waiting for the insurance approbation of the new test .I can't believe that a new mass can grow during radiation he is just 3 months out of treatment 

    I am so down , keep us in prayers God bless !

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #8
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    Liliallen said:

    New tumor or infection

    Just git a call from my husband he went to the ENT he was checking on his jaw pain and he said that It is something there he is not sure what It can be an infection from the radiation or A new tumor , OMG I try to stay positive but I can't help to be worried..Doctor says that it is a sore and a mass not sure if a tumor or an infection 

    Now we are waiting for the insurance approbation of the new test .I can't believe that a new mass can grow during radiation he is just 3 months out of treatment 

    I am so down , keep us in prayers God bless !

    liliallen, as we say here,

    liliallen, as we say here, its not cancer until they say its cancer.  i do understand ur fear tho.  take a deep breath try not to borrow trouble.  if it is cancer it can b treated.  i'm sorry ur so down and wish i could help.  hang in there and u'll know something for sure soon.

    God bless,

    dj

  • HobbsDoggy
    HobbsDoggy Member Posts: 276
    #9
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    Follow Up?

    I guess my question is what is the plan?  Are they going to follow up right away?  I found that when something came up that made me upset and anxious the docs were not always too quick to find out what was going on.  I had to press sometimes to get them motivated.  Most of the times it was nothing, but if they don't give a clear path right away I would press that issue.  False alarms are still alarms and need to be turned off.

  • Liliallen
    Liliallen Member Posts: 24 Member
    #10
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    debbiejeanne said:

    liliallen, as we say here,

    liliallen, as we say here, its not cancer until they say its cancer.  i do understand ur fear tho.  take a deep breath try not to borrow trouble.  if it is cancer it can b treated.  i'm sorry ur so down and wish i could help.  hang in there and u'll know something for sure soon.

    God bless,

    dj

    Thank u !

    YOU ARE RIGHT ! TRYING TO KEEP MY HUSBAND UP .I MUST BELIEVE THAT GOD IS STILL IN CONTROL BUT SOMETIMES WE ARE DOWN BUT I AM THANKFUL THAT GOD USES THIS SITE WITH SUCH A NICE PEOPLE TO SUPPORT EACH OTHER.

    YOU DID HELP ALOT LIKE EVERYONE HERE.

           IN GOD WE TRUST! 

  • Liliallen
    Liliallen Member Posts: 24 Member
    #11
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    HobbsDoggy said:

    Follow Up?

    I guess my question is what is the plan?  Are they going to follow up right away?  I found that when something came up that made me upset and anxious the docs were not always too quick to find out what was going on.  I had to press sometimes to get them motivated.  Most of the times it was nothing, but if they don't give a clear path right away I would press that issue.  False alarms are still alarms and need to be turned off.

    Yes

    THAT WAS EXACTLY THE CASE ! THE ONCOLOGIST DIDNT PAY TOO MUCH ATENTION AND MY HUSBAND WAS IN SUCH A PAIN IN THE JAW, SO AFTER THAT HE WENT TO THE ENT AND HE SAW A MASS ,NOW WE ARE WAITING FOR THE INSURANCE APPROBAL FOR ANOTHER TEST.HUSBAND IS TAKING ANTIBIOTICS AND PAINKILLERS .

  • Liliallen
    Liliallen Member Posts: 24 Member
    #12
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    Skiffin16 said:

    ENT

    Hi...

    Again, I would see the ENT, if he isn't very proactive concerning you history and treatment, and especially follow-up future scans... You might want to seek one that is more involved...

    For the first two years and especially the first, regular ENT scopes and follow-up visits are pretty much the standard for every 3 - 4 months. That is when most recurrences apparently occur. So early detection is key in long term survival...

    Anyways, yes the other MD's were associated, each having their special talents/training...

    The ENT is the main one for all Ear Nose and Throat exams and consults... I would stick to him/her for specifics on associated aches, pains, etc...

    A phone call..., doesn't sound very involved... Who initally did the diagnosis or cancer?

    Best,

    John

    Thanks John

    Yes the ENT did the initial diagnosis , and today he saw a mass , so he is not sure if It is an infection for radiation Or cancer , I just cannot believe that they missed it in the initial scan .It is was just the tonsil cancer no spread around.

    Well now we must wait and pray tha insurance gives the ok to the new test , the problem is that they don't believe I that It is necessary to do it .

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #13
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    Liliallen said:

    Yes

    THAT WAS EXACTLY THE CASE ! THE ONCOLOGIST DIDNT PAY TOO MUCH ATENTION AND MY HUSBAND WAS IN SUCH A PAIN IN THE JAW, SO AFTER THAT HE WENT TO THE ENT AND HE SAW A MASS ,NOW WE ARE WAITING FOR THE INSURANCE APPROBAL FOR ANOTHER TEST.HUSBAND IS TAKING ANTIBIOTICS AND PAINKILLERS .

    My money is on residual, or infection...something from treatment or rads... I'd be surprised if it's cancer..., of course you can never be certain, and the fear is always there..., especially as recent as what you guys have both been through.

    My guess is that if it's infection or residual the meds should help...

    But, I would thing they could do some kind of non-evasive biopsy to check cells without hassle from insurance...?

    Best,

    John

  • Liliallen
    Liliallen Member Posts: 24 Member
    #14
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    Skiffin16 said:

    My money is on residual, or infection...something from treatment or rads... I'd be surprised if it's cancer..., of course you can never be certain, and the fear is always there..., especially as recent as what you guys have both been through.

    My guess is that if it's infection or residual the meds should help...

    But, I would thing they could do some kind of non-evasive biopsy to check cells without hassle from insurance...?

    Best,

    John

    Insurance

    Thanks God that this morning we got the insurance ok for the new test so very happy about that.Today we are both in a better mood Nd positive It is always a shock the possibility of another tumor but whatever It is It need to be handle inmediately , if it Another tumor there is the non invasive robotic surgery .Well we leave everything in God'hands believing that He is still in control.

    Hopefully like You say It is just an infection .Thanks John Have a great day!

  • watchtower
    watchtower Member Posts: 10 Member
    #15
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    https://csn.cancer.org/discussion/257963/tonsil-cancer

    Hello my friend my prayers are with you. Your story sounds so close to ours. My Gut started cancer on his tonsils and spread to glands after base of tongue and roof of mouth . He is now 5 months post treatment and has had his scans. MRI/CT.Insurance denied Pet scan in November even though he had been having excruciating ear pain that is full blown and I feel like it should have been automatic to assume he would need an ENT for that specialty alone but it has been such a problem. I like the way one of your responders explain that yes all the doctors had their little specialty but he needs an "involved" ENT specialist not a once in a while one who did not even have scopes in that office or disinfecting equipment so our wait if 2 months in pain to be able to say that to us and out the door we went within 15-20 minutes. My poor Baby has hit so many obstacles and they just keep coming but I'm not taking off the gloves I will fight for him always. Other then our delimna currently his scans look good but he has this ulcer still in throat that seems to not want to heal and the ear pain there daily is altering his depressed state but we do know God isn't done with him yet and he's not done with yr hubby friend. Yr hubby and you are works in progress and we just have to ride out the storm in faith. It can move mountains and I believe everything yr responders suggested (even though of stated all of it until I'm blue in face an still have no ENT) but it gives me solace in solid ground to think to myself see Im reading my precise thoughts on somebody else's post on this awesome site exactly how I feel from fantastic supporters.....thank you all I know that havingcyr own ENT IS common sense geez...

    Take care of yourself keeping us posted.

    Always

    His Watchtower

  • Logan51
    Logan51 Member Posts: 464 Member
    #16
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    Watchtower- you're post is to someone who has not been on the Forum since May of 2013, according to her Profile page..."keeping us posted"?

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