Is this normal? 2 parts

RogerRN43
RogerRN43 Member Posts: 185
in Head and Neck Cancer #1
Wondering what you think about this...

1. I'm 11 rads in and now the left back side of my tongue is sore which makes sense because the bulk of the IMRT is focused on my L lymph and tonsil area. However, I woke up this morning and it feels like something is in my throat every time I swallow. It feels lower down my throat. Anyone else develop this sensation as rads progressed?

2. I have a couple of nodules on the front left of my thyroid, they're small, soft and only visible if I stretch my neck up. Google tells me 90% of the time, they are benign. I honestly don't know how long they've been there or if they've gotten bigger but I've noticed them since I was more cognizant and noticed the swollen lymph node under my left jaw in the summer. From what I can research, tonsil SCC may involve the upper lymphs near it but I don't google anywhere that it can involve lower thyroid area lymphs. When I asked my oncologist's nurse, she said there was no mention of it in the contrast CT report and she didn't seem concerned, but I'm also wondering because it's an unusual place for lymph mets, maybe they might have missed it. That area only gets indirect radiation from the IMRT, so they're not really being hit.
I'm going to bring it up again tomorrow to my NP, but has anyone heard of lymph involvement on the front of the thyroid?
Maybe I need them FNAB'd?

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
    During and After
    I have had though it's much better the feeling you get when you have a pop corn kernel stuck way down in the back part of your tongue or throat since rads...it never shows up on anything, just referred to as residual.

    I do have on both sides areas under the skin that you can also see residual.

    As for them doing any types of biopsy or anything else actually during treatment. I doubt they would as they would want to see the effects of the current treat,emt, and a PET should pick up anything that wasn't hit during treatment.

    I'm willing to bet, all you are expreriencing is your body's reaction to the rads and treatment

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    Skiffin16 said:

    During and After
    I have had though it's much better the feeling you get when you have a pop corn kernel stuck way down in the back part of your tongue or throat since rads...it never shows up on anything, just referred to as residual.

    I do have on both sides areas under the skin that you can also see residual.

    As for them doing any types of biopsy or anything else actually during treatment. I doubt they would as they would want to see the effects of the current treat,emt, and a PET should pick up anything that wasn't hit during treatment.

    I'm willing to bet, all you are expreriencing is your body's reaction to the rads and treatment

    Best,
    John

    Beginning of the burning
    I think you are starting to get the sensation of what it feels like to have damaged skin which is being burned from the radiation. The sensation was not there prior to radiation therefore seems it would be a cause and effect. Look at the outside of your neck and now imagine what is going on inside the sensitive skin of your mouth lining as the radiation swells and burns. The end result is that you will have difficulty swallowing as the opening constricts from the radiation. You are progressing normally. If you are thinking the difficulty swallowing is a lump or new cancer, it's not.


    I have a thyroid nodule which was discovered post treatment by CT scan. From what I can surmise it wasn't there prior to treatment. It is not currently malignant. You don't want radiation anywhere near your thyroid as it will destroy it. I would hope they are using a thyroid guard while administering radiation. In fact, every dentist should use one while x-raying teeth. The thyroid is not treated with direct radiation in cancer cases and you should not be focused on that right now. It is entirely possible that this treatment will damage your thyroid and that can be addressed later with medication. Just for your information there is a thyroid cancer forum here as it is considered a separate type of cancer and may yield some information although I have found it very inactive. The better imaging tests for thyroid is the ultrasound which you are better off doing post treatment after the radiation has done whatever damage it's going to do.

    Make sure your thyroid is protected from the radiation treatments and forget about it until you come out the other side.
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #4
    Agree
    Roger,

    I agree with John, your body is reacting to the treatments. Allot is going to happen between now and the final treatment. Please remember that you are getting NUKED, much like a Microwave oven. Your neck/mouth/ and throat are expanding in two directions. Swelling out on the outside/skin area and narrowing on the inside/ throat area. You passageway is going to narrow and swallowing is going to increase in difficulty. This is very important and you must continue to swallow at least water the whole time.

    Eating and swallowing. I found that I was able to handle it better when my food and liquids were at room temperature, no burning from the items being too cold or hot. You will develope sores in your mouth and throat. Have you tried the Baking Soda and Salt rinse yet? If not, I swear by it. 1 Teaspoon of Baking Soda and 1 Teaspoon of Salt in 1 Quart of room temperature water and mix. Take a sip, rinse and gargle with it, spit most of it out and then let a small amount go down your throat to reach the sores in your throat. It will not harm you. I did this as often as every 30 minutes if needed. It took the edge off of the discomfort. After awhile, about week 4 or 5 I forget, I increased the amounts to 1 Tablespoon of each and it helped a good bit. At week 5 I finally started to take pain med's. If this isn't working, try the " Magic Mouthwash " your Doctor can write a script for it.

    You touched on the Thyroid, this is something else that you will need to keep an eye on after your treatments. Have your ( TSH ) checked when you have your bloodwork done. My Radiation Oncologist told me to make sure I always checked that as it wasn't a matter of if my Thyroid was going to give out, it was a matter of when. It took nearly 5 years, but now I am on Thyroid meds.

    My Best to You and Everyone Here
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    MarineE5 said:

    Agree
    Roger,

    I agree with John, your body is reacting to the treatments. Allot is going to happen between now and the final treatment. Please remember that you are getting NUKED, much like a Microwave oven. Your neck/mouth/ and throat are expanding in two directions. Swelling out on the outside/skin area and narrowing on the inside/ throat area. You passageway is going to narrow and swallowing is going to increase in difficulty. This is very important and you must continue to swallow at least water the whole time.

    Eating and swallowing. I found that I was able to handle it better when my food and liquids were at room temperature, no burning from the items being too cold or hot. You will develope sores in your mouth and throat. Have you tried the Baking Soda and Salt rinse yet? If not, I swear by it. 1 Teaspoon of Baking Soda and 1 Teaspoon of Salt in 1 Quart of room temperature water and mix. Take a sip, rinse and gargle with it, spit most of it out and then let a small amount go down your throat to reach the sores in your throat. It will not harm you. I did this as often as every 30 minutes if needed. It took the edge off of the discomfort. After awhile, about week 4 or 5 I forget, I increased the amounts to 1 Tablespoon of each and it helped a good bit. At week 5 I finally started to take pain med's. If this isn't working, try the " Magic Mouthwash " your Doctor can write a script for it.

    You touched on the Thyroid, this is something else that you will need to keep an eye on after your treatments. Have your ( TSH ) checked when you have your bloodwork done. My Radiation Oncologist told me to make sure I always checked that as it wasn't a matter of if my Thyroid was going to give out, it was a matter of when. It took nearly 5 years, but now I am on Thyroid meds.

    My Best to You and Everyone Here

    Thyroid
    Also have them check the Free T4, that and the TSH are the main indicators....

    My TSH has been high above normal for awhile, but T4 has been in range. I tried the minimum dose of Synthroid awhile back, but it was giving me a few issues.

    I was tired of being tired all of the time, so I started halfing the Synthroid, was 25micrograms, now cutting those in half, and after two weeks I'm feeling much better.

    Best,
    John
  • ratface
    ratface Member Posts: 1,337 Member
    #6
    Skiffin16 said:

    Thyroid
    Also have them check the Free T4, that and the TSH are the main indicators....

    My TSH has been high above normal for awhile, but T4 has been in range. I tried the minimum dose of Synthroid awhile back, but it was giving me a few issues.

    I was tired of being tired all of the time, so I started halfing the Synthroid, was 25micrograms, now cutting those in half, and after two weeks I'm feeling much better.

    Best,
    John

    halfing the synthroid?
    John what led you to half the synthroid. I am also tired all the time but my GP said my thyroid dose was fine and not to mess with it. I've looked into dosage for adults and find most presriptions are for more and not less medication. My dosage is currently 25 micrograms. There are more parameters to base dosage other than TSH levels such as body weight and diet and I don't think most GP's want to be bothered with this as long as the bloodwork is coming back normal. Did you consult with your doctor about messing with the dose because you are playing with fire here as this stuff can kill you in the wrong dosage? So why decrease the dose and what is your insight here?
  • robinleigh
    robinleigh Member Posts: 297
    #7
    your throat
    Makes sense what everyone is saying about the radiation starting to "cook" from within. Don't be shy in asking NP about pain medication!

    The question about the nodules...Don't be shy about asking NP about getting an answer!

    Obviously, we were very attached to our NP!!!

    My very best wishes,
    Robin
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #8
    ratface said:

    halfing the synthroid?
    John what led you to half the synthroid. I am also tired all the time but my GP said my thyroid dose was fine and not to mess with it. I've looked into dosage for adults and find most presriptions are for more and not less medication. My dosage is currently 25 micrograms. There are more parameters to base dosage other than TSH levels such as body weight and diet and I don't think most GP's want to be bothered with this as long as the bloodwork is coming back normal. Did you consult with your doctor about messing with the dose because you are playing with fire here as this stuff can kill you in the wrong dosage? So why decrease the dose and what is your insight here?

    Halfed
    When they put me on the 25micrograms several months ago, I was having high pulse rates.. My normal is 65 - 70, it was going to 95 - 100, my BP went up about 35 points also.

    So they took me off and said to wait until it started to get worse as for fatigue and such....

    My TSH is over 7.0, forgot what the T4 was but it was just barely in the normal range.

    My other MD suggested a few weeks ago to cut it in half and see if that helped. I'm also setup to go in for blood work as a follow-up in a few weeks.

    The 25micrograms is the minimal amount that it comes in as far as I know, but those are scored for cutting.

    JG
  • nwasen
    nwasen Member Posts: 235 Member
    #9
    google...
    My advice is do not google. I found myself in a panic mode after reading some crap on the internet. You are better to come here and look for advice from others or ask your docs.
    My toughest days were after radiation and yes, it is the gift that keeps on giving. You will continue to be microwaved for about 12 weeks after treatments end. Know you won't feel well at first and allow your body to heal.
    My docs sent me to have my thyroid checked after treatment. I was borderline. I then was checked again later and was fine.
    Continue to rest and do things that seem fun but know you will tire easily at the first.
    We are all here to help. I wish I had found this site during treatment or right afterwards. Coming home from being near the hospital (80 miles south of my home) and living alone, I had some scary times (that evil committee in my head that kept me upset). I was grateful that I could call two of my docs and one nurse day or night (and I did!)
    peace
    nancy
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #10
    ratface said:

    halfing the synthroid?
    John what led you to half the synthroid. I am also tired all the time but my GP said my thyroid dose was fine and not to mess with it. I've looked into dosage for adults and find most presriptions are for more and not less medication. My dosage is currently 25 micrograms. There are more parameters to base dosage other than TSH levels such as body weight and diet and I don't think most GP's want to be bothered with this as long as the bloodwork is coming back normal. Did you consult with your doctor about messing with the dose because you are playing with fire here as this stuff can kill you in the wrong dosage? So why decrease the dose and what is your insight here?

    I do
    I do not have the thyroid problem or meds but am tired all the time from a med the doc gave me months ago. On my own I decide to cut the med in half and take one half in the morning and the other 12 hours later. That made a huge difference.

    Might be something to try.

    John
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #11
    nwasen said:

    google...
    My advice is do not google. I found myself in a panic mode after reading some crap on the internet. You are better to come here and look for advice from others or ask your docs.
    My toughest days were after radiation and yes, it is the gift that keeps on giving. You will continue to be microwaved for about 12 weeks after treatments end. Know you won't feel well at first and allow your body to heal.
    My docs sent me to have my thyroid checked after treatment. I was borderline. I then was checked again later and was fine.
    Continue to rest and do things that seem fun but know you will tire easily at the first.
    We are all here to help. I wish I had found this site during treatment or right afterwards. Coming home from being near the hospital (80 miles south of my home) and living alone, I had some scary times (that evil committee in my head that kept me upset). I was grateful that I could call two of my docs and one nurse day or night (and I did!)
    peace
    nancy

    Sometimes
    Sometimes I wonder if I was blessed when I had my treatments, back in 1996 there was very little on the internet... plus I did not even have a computer or friends that had them. So that did not allow me to read more than I needed to and put me into focus of dealing with what ever the cancer **** treatment dealt me.

    I do know and have not questioned the need for support, I wish I had this site CSN then. Oh my what a huge difference that would have made just to know one person who was going thru the same that I was going thru.

    John
  • jtl
    jtl Member Posts: 456
    #12
    Probably Normal
    My throat did go through changes at about the point you are at. It was never constricted to the point I couldn't swallow but did feel like something was not going down as usual. I noticed it more when I was on the table with the mask on and couldn't take a swig of water. I think some of it was mind games. At some point you may want to consider some pain meds if you haven't already. I am taking a couple of Norco 5-325 per day and rarely feel any pain in my throat. Keep using your throat muscles, I didn't have a PEG so I had no choice but I would have anyway to keep every working.

    Part 2
    You have had tests and have docs. Assuming you trust them, and if you don't that is an entirely different issue, tell them your concerns and let them give you their opinions which will hopefully satisfy your concerns. I love research on the internet but there are major limitations if you start to self diagnose. I basically use the internet to get a general education and to develop specific questions for the professionals. If the answer doesn't seem to make sense I pursue it further.

    Good Luck
    John
  • RogerRN43
    RogerRN43 Member Posts: 185
    #13
    Update
    Thanks for all your comments :-)

    1. The rad techs and NP thought it was normal. What it progresses to is anyone's guess... another instance of "everyone reacts differently".
    No real pain so far, L tongue is mildly sore if I think about it, in other words not noticeable. Funny, it was more sore when I first felt it, not now. No other sore areas, just that lump feeling when I swallow. I started drinking Jasmine tea with raw honey in it. I'm wondering about starting glutamine powder I read in the super thread too.

    2. My NP said she would look at the CT again and she emailed me there was no thyroid involvement. My rad doc did agree to see me on Monday to have it checked out.

    You guys are great, this site is so resourceful. Thanks again.
  • ac
    ac Member Posts: 88 Member
    #14
    Roger,
    Re # 1: I sometimes
    Roger,

    Re # 1: I sometimes feel like that there is a lump in my throat and after much difficulty hacking and coughing my insides out, find that it is a blob of mucus. I'm 32/33 rads (as a point of reference). Are you getting think saliva and mucus yet?

    Re # 2: Whenever I had doubts, I would ask my radiation oncologist and she would be more than happy to show me my radiation treatment map, where it hits and which parts were untouched. This should give you peace of mind if they are already radiating that part. If not, there may be a good reason why it's not being done. Bear in mind that the areas not radiated may also suffer from peripheral nerve damage at least that's what they told me.

Discussion Boards