Post treatment pain

julie44
julie44 Member Posts: 7
in Head and Neck Cancer #1

Hello everyone,

I was diagnosed with cancer on my tonsil last December and I finished my treatment nearly 3 months ago (33 radiation and 3 Cisplatin chemo). I was doing just fine until I saw my ENT last week who thought my pains in the tongue, jaw and ear were a bit "worrisome". Needless to say that it was the only thing I could focus on after that. He has checked it all with his camera and fingers, poking in through and through and did not see anything unusual. I had my MRI yesterday but will only see my doctors with the result in 3 weeks. I am a bundle of nerves and I can only think of the worse! Are those pains so unusual? It is still hard to eat but I expected that. Why was it better for a while and then the pains came back? Thank you for letting me know if that happened to you.

Comments

  • phrannie51
    phrannie51 Member Posts: 4,716
    #2
    Welcome, Julie....

    You've found a great group to help you through the after effects of treatment. 

    I don't understand why you'd have to wait 3 weeks to hear about scan results!!  They are ready in a couple of days.  If this were me, I'd call the ENT's office and ask them to call you with the results when they come in.....then I'd call them everyday till somebody called me back.  There is absolutely NO reason anyone should have to sit on pins and needles for nearly a month to hear about scan results! 

    The pain you're suffering could easily be radiation damage, and could easily go away again, never to return. 

    p

  • MrsBD
    MrsBD Member Posts: 617 Member
    #3
    Absolutely! 
    Phrannie is

    Absolutely! 

    Phrannie is right, as she usually is.☺Call your ENT in a few days to get the results. That said, many of us have had pains that come and go. Of course, the first thought is cancer, but it is often just some late effects. My treatment ended on October 5th, 8 months ago today.( Yay! ) I still get some soreness on the side of my tongue and feel roughness in my throat. Scopes and scans have been clean. Some of those nerve cells are procrastinators,  I think!

     

  • julie44
    julie44 Member Posts: 7
    #4
    phrannie51 said:

    Welcome, Julie....

    You've found a great group to help you through the after effects of treatment. 

    I don't understand why you'd have to wait 3 weeks to hear about scan results!!  They are ready in a couple of days.  If this were me, I'd call the ENT's office and ask them to call you with the results when they come in.....then I'd call them everyday till somebody called me back.  There is absolutely NO reason anyone should have to sit on pins and needles for nearly a month to hear about scan results! 

    The pain you're suffering could easily be radiation damage, and could easily go away again, never to return. 

    p

    Thank you so much for

    Thank you so much for responding! I will definitely try to call and "harass" them on the phone if I have to!

     

     

  • julie44
    julie44 Member Posts: 7
    #5
    MrsBD said:

    Absolutely! 
    Phrannie is

    Absolutely! 

    Phrannie is right, as she usually is.☺Call your ENT in a few days to get the results. That said, many of us have had pains that come and go. Of course, the first thought is cancer, but it is often just some late effects. My treatment ended on October 5th, 8 months ago today.( Yay! ) I still get some soreness on the side of my tongue and feel roughness in my throat. Scopes and scans have been clean. Some of those nerve cells are procrastinators,  I think!

     

    I know that pains come and go

    I know that pains come and go but after a while I can't help thinking of the worse. Thanks for being here, it helps to share the feelings!

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #6
    Pretty Much Normal..

    Though I'm abi-normal...

    You usually can ask for a desk copy and they'll provide you with one in 24 hours or so..

    As for the aches, pains and worry... That's pretty common for a year or two..

    John

  • wmc
    wmc Member Posts: 1,804
    #7
    Welcome to the H&N Group Julie......

    Welcome to the best support group you will find...anywhere, so welcome to the family.

    I did not go through the chemo and radiation, just surgery so the others can help with that. Like John said with radiation the pain can come and go for a few years. I got the pain in the ear on the side I had my tumor and some days it did get pretty bad. When it gets bad just take one day at a time. Let your doctor know that is going on just to always be on the safe side.

    Bill

  • julie44
    julie44 Member Posts: 7
    #8
    Skiffin16 said:

    Pretty Much Normal..

    Though I'm abi-normal...

    You usually can ask for a desk copy and they'll provide you with one in 24 hours or so..

    As for the aches, pains and worry... That's pretty common for a year or two..

    John

    Thank you! It is "reassuring"

    Thank you! It is "reassuring" to hear that the pain are normal. they can really pinful though and that is when you become really frustrated and worried. I am a pretty positive person most of the time but I have to say that it is hard to always be optimistic.

  • julie44
    julie44 Member Posts: 7
    #9
    wmc said:

    Welcome to the H&N Group Julie......

    Welcome to the best support group you will find...anywhere, so welcome to the family.

    I did not go through the chemo and radiation, just surgery so the others can help with that. Like John said with radiation the pain can come and go for a few years. I got the pain in the ear on the side I had my tumor and some days it did get pretty bad. When it gets bad just take one day at a time. Let your doctor know that is going on just to always be on the safe side.

    Bill

    Thank you! Is there anything

    Thank you! Is there anything that works when the pain is really bad? It makes me pretty miserable. I will try to folow your advive though and take it one day at a time.

  • hwt
    hwt Member Posts: 2,328 Member
    #10
    julie44 said:

    Thank you! Is there anything

    Thank you! Is there anything that works when the pain is really bad? It makes me pretty miserable. I will try to folow your advive though and take it one day at a time.

    Julie

    Insist on your results, doctors can have access within a few hours so you are not being unrealistic. Waiting 3 weeks is ridiculous. I wouldn't jump the gun and assume it is anything more than after effects, likely not but you should not be put through that worry. 

  • wmc
    wmc Member Posts: 1,804
    #11
    julie44 said:

    Thank you! Is there anything

    Thank you! Is there anything that works when the pain is really bad? It makes me pretty miserable. I will try to folow your advive though and take it one day at a time.

    Not much, but if your Dr prescribed meds.....

    If your doctor has prescribed pain meds that should. For me I would take Motron as my doctor told me to just get over the counter ones , which was the same as he would prescribe. You need to NEVER go over 3200 in 24 hours. I would call your doctor Moday and let him know about the pain in the ear and ask for the results on the MRI.

    Bill

  • julie44
    julie44 Member Posts: 7
    #12
    The hospital was not the

    The hospital was not the easiest place to reach for MRI results. Thank God for my GP who did get it in the end. As my thoat is still swollen and ulcerated, it is still very hard to see clearly but it seems that there is a sort of kyst on the side that they need to check through either a Pet scan or a biopsy. I have yo say that the word biopsy is not the one I want to hear right now. There was also a potential surgery involved. The good thing is there has been a serious reduction of the mass. Anyway, for now, it is all in the air and I need to wait to see my oncologists and ENT to know what the next step is. I can't really tel how I feel at this precise moment: scared, or blase having to go through some more treatment? I am going to follow my GP's advice as well as yours and take one day at a time; because at the thought of going through all that again...it is quite depressing.

  • wmc
    wmc Member Posts: 1,804
    #13
    julie44 said:

    The hospital was not the

    The hospital was not the easiest place to reach for MRI results. Thank God for my GP who did get it in the end. As my thoat is still swollen and ulcerated, it is still very hard to see clearly but it seems that there is a sort of kyst on the side that they need to check through either a Pet scan or a biopsy. I have yo say that the word biopsy is not the one I want to hear right now. There was also a potential surgery involved. The good thing is there has been a serious reduction of the mass. Anyway, for now, it is all in the air and I need to wait to see my oncologists and ENT to know what the next step is. I can't really tel how I feel at this precise moment: scared, or blase having to go through some more treatment? I am going to follow my GP's advice as well as yours and take one day at a time; because at the thought of going through all that again...it is quite depressing.

    What you are feeling IS NORMAL...

    Every thing you are feeling right now is normal to be feeling. Being scares would be very normal, we all still do at times when something changes or we feel or see anything. That is going to be with you for awhile. 

    You have fath and trust in both your Doctors and that is very good. Trust in them. Let them know if you do have pain and where it is. I did get pain in my left ear before surgery and it would be sharp and not last more than a few hours. It would come and go. Try not to be scared of a biopsy, I know, easer said then done. It is a non envasive way to get it checked and can happen much sooner than a PET/CT which must get approval from insurance. Also, you can show what is called Hot spots that are false so if that is done, remember it can show Hot when it is nothing to be concerned with. Your doctor will get you through that, as it is also normal after treatment. Things happen slow on the recovery end. instead of days it is weeks and months, but that too is normal. Everyone will heal a little different. There is most of the ones on here had radiation and chemo and can answer your concerns. As I said, one day at a time and always remember, you can do this. Everyone on here will give you support and we are open 24/7. On bad days just come and write it down, it does help.

    Bill

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