Advice Needed! UPDATE

Bunnymom

Thank you to all the wonderful people on this board....

I wonder if I could get some feedback please?

I'm just 4-1/2 months post chemo (5FU & Hydrea) plus radiation (35 treatments) 7 rounds for tongue cancer. Surgery to remove left side tongue cancer 16 months ago. 2 surgeries to move affected lymph nodes, then tx. Radiation field also hit and cleared another affected node. TX ended 9/5/14. T1N3. 2 scans, October & December. Both NED.

No Peg. Eating pretty well, swallowing better but still have some pain that comes and goes. Some mucous but that's getting better too. 

The issue is pain along the right side of tongue. Talked to radiation oncologist today to ask if the pain could be from radiation Treatment. He said doubtful. Then said could be new cancer that is very small. Could be hidden. This can sometimes cause pain. Could have crossed over. But he also said it could be caused by scar tissue (I had a biopsy in this area) or nerve pain. He said to just "wait and see"!! By now I'm a mess and scared out of my mind.

Next, I talk to the ENT surgeon AGAIN who has examined my tongue 2x since November (had pain at that time). He feels strongly this is not cancer. There is nothing on my tongue, nothing he can see to indicate cancer and the scans were clear. He said if this was cancer, there would be some evidence of it by now: showing up on a scan, presentation in clinic or a mass. I have none of these. He said since the pain has been going on at least since october, any microscopic cancer would have shown up on scan by now. He called & talked to rad Onc and they agreed. ENT still thinks it's a nerve issue. He sent me over to pain management dr who prescribed meds. Haven't taken them yet in part because I thought I could tough it out and in part because of side effects. I think I'm going to give it a try.

I'm starting to get confused and upset about this whole thing. The ENT has reassured me that nothing he saw when he last examined me in December that indicates cancer and scans are good. 

Since all this treatment it's hard to tell what is a side effect of the treatment, a possible new cancer, and what is just the "new me". What I'm feeling right now is very different than the old me.

Sorry for the long post. Shouldn't I be pretty much back to (Abi) normal by now? I honestly don't even know what that is. Maybe I could deal with the new me if I wasn't in pain. I'm worn out worrying. I don't have another scan until April. ENT didn't think I needed to bump that up and get it sooner. Asked him what my chances are for surviving this and he said "very high". This is a relief but I still worry about the pain. Sometimes I feel like I have pain in other spots, or I worry when I have a pain in my neck or a headache, or sometimes I think I'm feeling pain in my sinus or teeth. It's crazy and I'm driving myself nuts. I just don't know what to think anymore. I need help sorting this out. 

Any thoughts or feedback would be appreciated. I'm feeling mixed emotions. Even though ENT gave me words of positive encouragement, I'm feeling depressed. Don't understand this at all. 

I try to talk myself down from the ledge by thinking rational about the situation.....Two scans since treatment ended. Both NED. Had pain at least since October. Even if this was microscopic cancer in October, something would likely have shown up in the December scan as this tends to grow fast. No lumps, masses or bumps. Does this make sense? ENT agreed with this logic. 

 

****I want to understand how my right side tongue can hurt if this side was not treated. My medical oncologist told me that it could be from radiation, but then the radiation oncologist told me this was unlikely. They contradicted each other!!! I was going along, up until now, thinking the pain was from radiation and I would just have to give it time. The ENT is still going with the idea that it's nerve pain. 

Does anyone know if radiation or chemo can cause nerve pain??*****

 

Thank you to all for being "there" And taking the time to read all this.

  

jackflash22

your head is full of

your head is full of uncertainties at present, these will drive you demented if you let them. Have you got a councillor on your team you could talk too. You need to sort out what's real and whats imagined. You could also get some medication to calm you down. I'm BoT cancer and lymph node cancer. I had a neck dissection to remove cancer from tongue and lymph nodes. My imagination ran riot after especially at night in bed. Every pain I had I thought the cancer was back but when you think about it you had pains before cancer that was innocent. Your pain in the tongue could be due to the radiation. The radiation caused me to go deaf in one ear, damaged my thyroid, made scar tissue in my throat so I can't swallow, scarred the inside of my mouth etc. So the pain in your tongue is probable side effects which in time will get better. If the surgeon says your chances are very high believe him he knows best. You will made yourself ill with worry. Go to your doc and get some antidepressants a lot of patients do. See if there's a councillor on the team, talking  demons through help. I deeply feel for you I know what your going through, been there and got the T shirt. I think if you can calm down a bit some of your pains will go away.

wmc

ENT agreed with this logic....... I would go with that.

The only thing I kow about radiation is from what I have read here, I never had any. Any time we see a spot anywhere we think, Could it be back? If we never had "C" we would not even worry about it. I one way, it is good we do think about it because we are more aware of our bodys then anyone else is and that can be a blessing, as well as a downfall. I just had a very strange abd rough mole show up on my side. So I think, could it be? It is odd shaped and very rough. On a routine I showed my GP and he sain it's nothing, but I will freeze it off if you want.

When I first went to the tumor board the first doctor [Very nice] was the RAD and proseded to tell me what they were probly going to do and start me on 30+ rads. He had not even seen my chart or throat let alone my lungs. I was not going to have Rad, I was going to have surgery to cut it out. Then if needed RAD and chemo. Well the head Dr came in and said surgery only was needed. When it was over I was numb form ear to ear. My right side came back, but there is a spot under my chin that has feeling but if it is touched, It is very tender and I cough so hard I will see stars. No one can answer why. I have to shave it and it is not fun at all, but no answer as to why. They did cut so many nerves they said that might be why. I was cut from ear to ear and took out 86 glands. I sak about the feeling on the left ever coming back and i'm told , no not in my life time, tomany had to be cut.

AS for your tounge halh is numb but has pain. It might be nerves trying to come back. When I got the right side back it hurt and got to where I wish it would have stayed numb. I think what your ENT said is most likely what it is. He is the one who is looking and feeling it. Could be from scar tissue or from Rad or nerves regrowing, that can hurt like hell.

Oh, I saw a local Oncologist one year before and he said "You do not have cancer"! I was lossing weight and all the symtoms said cancer, and my wife told me I do have it. Well that Dr was wrong. They did the surgery about a year later and the tumor was 3cm. Takes more then a year to get that size. If I had gone to an ENT it would have been found much sooner.

Sorry you are going through this and when the others that had RAD chime in they will most likely have much better thoughts on this. It sounds like your New Normal, more then it being back.

Bill

debbiejeanne

bunny, unfortunately, i think

bunny, unfortunately, i think after having cancer, we all tend to work ourselves up when we have a new pain, sore, or anything else.  that's just the way it works.  but it is extremely important that we don't let it overtake us.  please try to accept the good news the docs gave you and run with it.  please don't let cancer take any more time from you.  as for being abi-normal, i think that is still way off.  you are only 4.5 months out and recovery from tx takes much more time than that.  be patient and let your body heal.  do your best not to spend precious time worrying about stuff that is NOT.  when the worry starts, find something to do that you enjoy.  keep busy so your mind doesn't have so much time to wonder back to the worry.  I completely understand how you feel and how easy it is for the worry to take over as I've been there a few times myself, but we have to make ourselves move ahead and live.  i will be praying for you to be able to do that. 

God bless you,

dj

phrannie51

Bunnymom....

What everyone is saying is exactly what I'm going to say.  The fact that the cancer bug has hit us once makes everything that happens above our shoulders scary and foreboding.  It's the nature of the beast.  Because of the radiation, we are going to have long term effects....some come and go....some we learn to live with....all of them scare us until we know it's just another effect.  Ear aches, head aches, neck aches, jaw aches.....the list goes on.....My ENT is always my go to guy....because he knows what he's looking for, and most things he can see.  The scans back him up. 

This is another thing that will ease up with time.....my last scan in December was the first time I relaxed a little.....that's almost 2 1/2 years out.....Try the medication and see if it works.....if it does, then you'll be relieved of a daily reminder that something "might" be wrong.  It's the things that don't go away that keeps cancer in the forefront of our minds (I have an ear that likes to keep me on my toes....)....but two scans later, the ear is still a problem, but I'm NED.....so I have to take it for what it is....nothing! 

It does get easier......it just takes practice at pushing the bad thoughts down.....and moving through your one day that's guarenteed...practice takes time to accomplish.  Your ENT is making perfect sense to me.....

p

 

Sailor123

It would be scarey to be told

It would be scarey to be told it may be another cancer.  I see no benefit in putting that fear into anyone when its a maybe.  It sounds like you are on the worry train and can't get off. I have learned that worrying is so consuming and a waste of precious time.  There seem to be enough doctors saying it may be nothing to worry about, that maybe you could shift your focus.  I would be looking for distractions and trying to redirect my thoughts to life and being in the NOW.  

I know that is so hard to do, but it sounds like your spinning in the worry zone and its a vicious cycle.  I have been there, believe me.

Get out today and take a walk, see a friend.  Try and break the cycle.

Good luck.  It really may be a false alarm.

Bunnymom

wmc said:

ENT agreed with this logic....... I would go with that.

The only thing I kow about radiation is from what I have read here, I never had any. Any time we see a spot anywhere we think, Could it be back? If we never had "C" we would not even worry about it. I one way, it is good we do think about it because we are more aware of our bodys then anyone else is and that can be a blessing, as well as a downfall. I just had a very strange abd rough mole show up on my side. So I think, could it be? It is odd shaped and very rough. On a routine I showed my GP and he sain it's nothing, but I will freeze it off if you want.

When I first went to the tumor board the first doctor [Very nice] was the RAD and proseded to tell me what they were probly going to do and start me on 30+ rads. He had not even seen my chart or throat let alone my lungs. I was not going to have Rad, I was going to have surgery to cut it out. Then if needed RAD and chemo. Well the head Dr came in and said surgery only was needed. When it was over I was numb form ear to ear. My right side came back, but there is a spot under my chin that has feeling but if it is touched, It is very tender and I cough so hard I will see stars. No one can answer why. I have to shave it and it is not fun at all, but no answer as to why. They did cut so many nerves they said that might be why. I was cut from ear to ear and took out 86 glands. I sak about the feeling on the left ever coming back and i'm told , no not in my life time, tomany had to be cut.

AS for your tounge halh is numb but has pain. It might be nerves trying to come back. When I got the right side back it hurt and got to where I wish it would have stayed numb. I think what your ENT said is most likely what it is. He is the one who is looking and feeling it. Could be from scar tissue or from Rad or nerves regrowing, that can hurt like hell.

Oh, I saw a local Oncologist one year before and he said "You do not have cancer"! I was lossing weight and all the symtoms said cancer, and my wife told me I do have it. Well that Dr was wrong. They did the surgery about a year later and the tumor was 3cm. Takes more then a year to get that size. If I had gone to an ENT it would have been found much sooner.

Sorry you are going through this and when the others that had RAD chime in they will most likely have much better thoughts on this. It sounds like your New Normal, more then it being back.

Bill

Thank you Bill. I feel a

Thank you Bill. I feel a little better today than yesterday. It's hard to determine if what I feel is the "new me" after treatment or something more sinister. 

The ENT is convinced that the pain is coming from damaged nerves. I want to understand this more. How are nerves damaged by treatment? It's my nature to try and understand. Then, when I have the information, I can think about it rationally.

 

Bunnymom

Bunnymom

jackflash22 said:

your head is full of

your head is full of uncertainties at present, these will drive you demented if you let them. Have you got a councillor on your team you could talk too. You need to sort out what's real and whats imagined. You could also get some medication to calm you down. I'm BoT cancer and lymph node cancer. I had a neck dissection to remove cancer from tongue and lymph nodes. My imagination ran riot after especially at night in bed. Every pain I had I thought the cancer was back but when you think about it you had pains before cancer that was innocent. Your pain in the tongue could be due to the radiation. The radiation caused me to go deaf in one ear, damaged my thyroid, made scar tissue in my throat so I can't swallow, scarred the inside of my mouth etc. So the pain in your tongue is probable side effects which in time will get better. If the surgeon says your chances are very high believe him he knows best. You will made yourself ill with worry. Go to your doc and get some antidepressants a lot of patients do. See if there's a councillor on the team, talking  demons through help. I deeply feel for you I know what your going through, been there and got the T shirt. I think if you can calm down a bit some of your pains will go away.

Believe it or not, I am

Believe it or not, I am trying to stay calm, but it's hard. I just want to better understand what is going on so I can deal with it. Unfortunately, they can not definitively test for nerve pain. They just treat the symptoms. 

I was doing okay until I talked to the Rad Onc. He has a different type of personality. The ENT told me the Rad Onc agreed with his assessment but just didn't communicate it well to me. 

Bunnymom

debbiejeanne said:

bunny, unfortunately, i think

bunny, unfortunately, i think after having cancer, we all tend to work ourselves up when we have a new pain, sore, or anything else.  that's just the way it works.  but it is extremely important that we don't let it overtake us.  please try to accept the good news the docs gave you and run with it.  please don't let cancer take any more time from you.  as for being abi-normal, i think that is still way off.  you are only 4.5 months out and recovery from tx takes much more time than that.  be patient and let your body heal.  do your best not to spend precious time worrying about stuff that is NOT.  when the worry starts, find something to do that you enjoy.  keep busy so your mind doesn't have so much time to wonder back to the worry.  I completely understand how you feel and how easy it is for the worry to take over as I've been there a few times myself, but we have to make ourselves move ahead and live.  i will be praying for you to be able to do that. 

God bless you,

dj

dj....do you think I'm still

dj....do you think I'm still healing at this point? What does that actually mean? I can tell you that I have thicken, diminished saliva, sore throat off and on, some issues with swallowing, and of course the side effects to my neck including tightness, etc. My head, in general, doesn't feel the same. Then I have the issue of tongue pain to the right, untreated side. This is my worry. I can deal with the side effects especially if I know the tongue pain is a nerve issue. 

 

Bunnymom

phrannie51 said:

Bunnymom....

What everyone is saying is exactly what I'm going to say.  The fact that the cancer bug has hit us once makes everything that happens above our shoulders scary and foreboding.  It's the nature of the beast.  Because of the radiation, we are going to have long term effects....some come and go....some we learn to live with....all of them scare us until we know it's just another effect.  Ear aches, head aches, neck aches, jaw aches.....the list goes on.....My ENT is always my go to guy....because he knows what he's looking for, and most things he can see.  The scans back him up. 

This is another thing that will ease up with time.....my last scan in December was the first time I relaxed a little.....that's almost 2 1/2 years out.....Try the medication and see if it works.....if it does, then you'll be relieved of a daily reminder that something "might" be wrong.  It's the things that don't go away that keeps cancer in the forefront of our minds (I have an ear that likes to keep me on my toes....)....but two scans later, the ear is still a problem, but I'm NED.....so I have to take it for what it is....nothing! 

It does get easier......it just takes practice at pushing the bad thoughts down.....and moving through your one day that's guarenteed...practice takes time to accomplish.  Your ENT is making perfect sense to me.....

p

 

You took the words out of my

You took the words out of my mouth. Every little twinge in my head or mouth, sets me on edge. For instance, my neck has been hurting. I know that I've had neck issues for years, yet the first thing that enters my mind is....is it something bad? I have sinus congestion, a bit of a sinus headacheband some post nasal drip, same reaction. I can usually rationalize my way out of feeling like this but sometimes it's a challenge. Okay, my neck pain is just my bad neck. The sinus issue is probably because it's winter and the air is dry. I have this talk with myself. The tongue pain issue is different because it seems this is a gray area. I don't know how to have a conversation with myself about it.

I don't know how I'm "supposed" to feel at this stage. I tell myself that 4-1/2 months is not long to be out of treatment, yet I expect, on another level, to be feeling a lot better by now. I just don't understand where I "should" be at this time. I want to feel better and not worry so much. Perhaps this is just the nature of the beast.

I was doing pretty good until I started asking questions of my doctors concerning the tongue pain to the untreated side. 

Bunnymom

Sailor123 said:

It would be scarey to be told

It would be scarey to be told it may be another cancer.  I see no benefit in putting that fear into anyone when its a maybe.  It sounds like you are on the worry train and can't get off. I have learned that worrying is so consuming and a waste of precious time.  There seem to be enough doctors saying it may be nothing to worry about, that maybe you could shift your focus.  I would be looking for distractions and trying to redirect my thoughts to life and being in the NOW.  

I know that is so hard to do, but it sounds like your spinning in the worry zone and its a vicious cycle.  I have been there, believe me.

Get out today and take a walk, see a friend.  Try and break the cycle.

Good luck.  It really may be a false alarm.

It WAS scary to hear this. I

It WAS scary to hear this. I wasn't thinking anything like this. When the ENT got back to me he told me that he called the radiation oncologist and they were in agreement. I'm not sure what the ENT told him but that was the result. I'm going with this being nerve pain. I'm going to trybtaking the pain medication and hope it helps. Thank you for your message

wmc

Bunnymom said:

It WAS scary to hear this. I

It WAS scary to hear this. I wasn't thinking anything like this. When the ENT got back to me he told me that he called the radiation oncologist and they were in agreement. I'm not sure what the ENT told him but that was the result. I'm going with this being nerve pain. I'm going to trybtaking the pain medication and hope it helps. Thank you for your message

We're open 24/7

We will always be here for you and some times it just helps to talk to someone. Well in this case, write it down, and someone will understand what you're saying and feeling as well.

Bill

Bunnymom

wmc said:

We're open 24/7

We will always be here for you and some times it just helps to talk to someone. Well in this case, write it down, and someone will understand what you're saying and feeling as well.

Bill

Thank you Bill. This means a

Thank you Bill. This means a lot. I'm torn between feeling worried and feeling like I need to trust the ENT. I know the ENT told me that he doesn't believe it's cancer and that's a huge relief but because of the tongue pain, I worry. I just want to understand why this is hurting. The ENT's take on it is that it's nerve pain. They just have no way of actually testing for this so they treat symptoms. I had a scan in December so they won't do another for a while...I'm just upset. Thank you Again.

donfoo

not unusual

Hi Mary,

It is essential you trust your doctors which you say you do. Trusting them means believing what they tell you. No sign of cancer means NO CANCER! The pain can be dealt with. Take the pain meds and if they are not working go back and get them adjusted until you are pain free. When you trust your doctor and you are pain free, you will feel much better.

The "new normal" is a place that takes quite a while to find. 4.5 months is far too soon to expect to find it, most can say that about a year post one feels like they have a pretty good sense of what the new normal means to them. Every person has their own unique new normal so you just have to keep marching forward each day and deal with the issues that face you now. Most will lessen, some disappear, and some remain around. Be patient and get the pain under control right away. Don

Bunnymom

donfoo said:

not unusual

Hi Mary,

It is essential you trust your doctors which you say you do. Trusting them means believing what they tell you. No sign of cancer means NO CANCER! The pain can be dealt with. Take the pain meds and if they are not working go back and get them adjusted until you are pain free. When you trust your doctor and you are pain free, you will feel much better.

The "new normal" is a place that takes quite a while to find. 4.5 months is far too soon to expect to find it, most can say that about a year post one feels like they have a pretty good sense of what the new normal means to them. Every person has their own unique new normal so you just have to keep marching forward each day and deal with the issues that face you now. Most will lessen, some disappear, and some remain around. Be patient and get the pain under control right away. Don

Don!

The problem is which doctor to trust? Rad Onc said one (scary) thing, med Onc said another, but ENT said no cancer.....so I'm going with him :-). The differing opinions made me confused and, naturally upset. But, the ENT has seen me twice since November, so I believe he is the most knowledgeable about me at this time. 

All in all, I'm doing good. Just have to deal with this and move on. THANKS DON!

Mary

 

 

Bunnymom

****UPDATE: thank you for all

****UPDATE: thank you for all that contributed to helping me feel better. Ever since I had my original surgery 16 months ago, I've had off and on sores on the right side of my tongue. I was treated on the LEFT side! These sores often have appeared to be canker sores. They eventually go away. My poor ENT has seen many photos of my tongue! No doctor has been able to tell me why I keep getting these sores. Naturally, it's very distressing every time I get a sore, especially after dealing with tongue cancer. I had a whopper of a canker sore that resolved in December. I believe that I have another forming now.

Ever since chemo/rad ended, I've had pain along side right side of my tongue. The pain moves around which is what leads the ENT to believe this is nerve pain. No one knows if it's from the surgery, or chemo or radiation or a combo of these. It's been exhausting and worrisome with the pain and sores. My left side is doing great. 

I have medication for pain management so I'm going to give it a try and hope it helps. THANK YOU****

 

MGC

Bunnymom said:

****UPDATE: thank you for all

****UPDATE: thank you for all that contributed to helping me feel better. Ever since I had my original surgery 16 months ago, I've had off and on sores on the right side of my tongue. I was treated on the LEFT side! These sores often have appeared to be canker sores. They eventually go away. My poor ENT has seen many photos of my tongue! No doctor has been able to tell me why I keep getting these sores. Naturally, it's very distressing every time I get a sore, especially after dealing with tongue cancer. I had a whopper of a canker sore that resolved in December. I believe that I have another forming now.

Ever since chemo/rad ended, I've had pain along side right side of my tongue. The pain moves around which is what leads the ENT to believe this is nerve pain. No one knows if it's from the surgery, or chemo or radiation or a combo of these. It's been exhausting and worrisome with the pain and sores. My left side is doing great. 

I have medication for pain management so I'm going to give it a try and hope it helps. THANK YOU****

 

tongue pain

Hello Bunnymom

 I just want to let you know that everyone is different and the extremes of peoples different reactions to treatment are incredible. Also, the different treatments prescribed by different doctors is also unbeliveably different. I have been reading these boards for almost 5 years now and am truly amazed at the variety of different treatments for the same issues as well as peoples different responses to these treatments. I myself will be at the 5 year mark NED in May which is the 5 year anivsersary of the completion of my treatment. Just to let you know i still experience extreme tongue pain on the primary side. I use numbing agents occasionally to deal with it but not that often. This disease just keeps on giving. I have also had plenty of other issues all related to side effects of the rads and chemo. The bottom line is i am still here after 5 years, feel great, very thankful for all the wonderful people on these boards that post very very helpful information. You have been through alot and will have lots of healing to go through, even more than I as i did not have surgery. Take good care of yourself, be poasitive and remeber it gets better all the time.

As other posters here have said, many doctors miss some of the complications associated with these treatments. Sometimes a strong dose of antibiotics will help. I have a experienced a couple staff infections in my mouth as well as a bad lymphatic infection in my neck that affected my head as well. All of these were scarry for me but strong antibiotic treatments cleared them all and still NED. I could write a book on my side effects and i am sure everyone else could too.

Try and give it time and paitience and it will keep getting better every day.

debbiejeanne

Bunnymom said:

dj....do you think I'm still

dj....do you think I'm still healing at this point? What does that actually mean? I can tell you that I have thicken, diminished saliva, sore throat off and on, some issues with swallowing, and of course the side effects to my neck including tightness, etc. My head, in general, doesn't feel the same. Then I have the issue of tongue pain to the right, untreated side. This is my worry. I can deal with the side effects especially if I know the tongue pain is a nerve issue. 

 

i can believe the pain is

i can believe the pain is from nerve damage.  tx does a lot of damage while it kills the cancer.  yes, i beleive we heal the entire first year after tx.  some things never go back to the way they were for some.  like taste.  i also have a lot of tightness in my neck from the dissection and i don't expect that to get better.  my neck looks like skin was removed and when they replaced it, they didn't use enough skin so there isnt' enough for the neck to move freely.  i had a skin graph on my neck due to a fistula.  if your docs beleive the pain is nerve damage, did they say what they can do for you?  i hope you can get the pain under control.  if the pain should get worse or change in any way, i'd go back to the doctors. 

God bless you,

dj