Radiation Residuals

MJG1

Hi,

Hubby is almost 5 years past his last H&N treatments.  He had chemo for 8 weeks and then 7 weeks of chemo and 35 radiation treatments.  now he seems to be having some pain that we think might be from the past radiation.  temple headache, ear ache, pain into estation tube, jaw pain, and most recently trouble swallowing.  He did recently have a soft tissue CT which was clear.  Something is wrong for sure.  Anyone out there with similar experience to share?

 

Thanks!

Margi, wife

Logan51

ENT and or GI Dr.

Symptoms you describe sounds like Rad damage. The swallowing is what would involve a GI Dr. to do an Endoscopy (I have one coming up on the 27th). The other would be for an ENT or C Dr., and he might should have a PET to see if anything shows up. Would depend on the specifics, I should think. Rads can cause nerve damage, but it usually shows up a lot sooner than 4 years. Could be scar tissue, because scar tissue does grow.

Hoping for the best for you.

wbcgaruss

Have You Been To Your

Cancer doc or ENT recently for any follow-ups?
If not I would make an appointment right away and get these pains checked out.
They may be from previous radiation or it could be something else.
I would say get to your immediately and he can check you out and I would think they would do a CAT scan with dye of the head and neck area as I think that is pretty standard to check for a problem that may involve cancer or something else the scan should show any problems or not and make sure nothing is going on.
If they don't order one I would push for it.
Anyone can get cancer but when you already had it stay on top of the pains or anything unusual.
Could be no big deal and we certainly hope it's not but take no chances.
I was about 5 years out from throat cancer and got tongue cancer, thought I was in the clear with almost 5 years.
Then a year and a half later I got a sore neck and had lymph node cancer and the bad thing was it was not encapsulated in the node and had spread a bit.
Once bitten twice shy, my opinion don't fool with this get it checked and make sure everything is all right and find out the cause of it.
Take Care-God Bless-Russ

 

motorcycleguy

MJB,

I'm just over two years out, and I notice my neck seizes up, from time to time - usually if I hole it in an unusual position (like looking at a computer) at the wrong angle for too long. It doesn't usually last too long. Other than that, I just noticed crunching and cracking from time to time. Part of that is probably radiation, and part ... well ... mileage.

I certainly think that you husband should get checked out by ENT, and potentially a Scan - as I see my counterparts here have already recommended - especially if the symptoms are sudden and severe.

I sincerely hope that it's something simple, and easily treatable; I wish you and your husband the best possible outcome!

I'm glad he has you there to help him,

MG

MJG1

Logan51 said:

ENT and or GI Dr.

Symptoms you describe sounds like Rad damage. The swallowing is what would involve a GI Dr. to do an Endoscopy (I have one coming up on the 27th). The other would be for an ENT or C Dr., and he might should have a PET to see if anything shows up. Would depend on the specifics, I should think. Rads can cause nerve damage, but it usually shows up a lot sooner than 4 years. Could be scar tissue, because scar tissue does grow.

Hoping for the best for you.

Logan51-Thanks!

Logan,

We went to the ENT this morning and on the spot where my husband had a cancerous tumor removed from his tongue has a new bump in it!  So the ENT was quite concerned with how it felt.  He did a biopsy though and said it looks like scar tissue.  He was still very concerned with how it felt though and with all the weird pains my husband has also been having.  There was discussion about what we do if the tongue has further cancer and it's not good.  Much more removed and a flap.  All pretty hard stuff.  Thanks Margi

MJG1

wbcgaruss said:

Have You Been To Your

Cancer doc or ENT recently for any follow-ups?
If not I would make an appointment right away and get these pains checked out.
They may be from previous radiation or it could be something else.
I would say get to your immediately and he can check you out and I would think they would do a CAT scan with dye of the head and neck area as I think that is pretty standard to check for a problem that may involve cancer or something else the scan should show any problems or not and make sure nothing is going on.
If they don't order one I would push for it.
Anyone can get cancer but when you already had it stay on top of the pains or anything unusual.
Could be no big deal and we certainly hope it's not but take no chances.
I was about 5 years out from throat cancer and got tongue cancer, thought I was in the clear with almost 5 years.
Then a year and a half later I got a sore neck and had lymph node cancer and the bad thing was it was not encapsulated in the node and had spread a bit.
Once bitten twice shy, my opinion don't fool with this get it checked and make sure everything is all right and find out the cause of it.
Take Care-God Bless-Russ

 

Thanks, Russ...

We went to the ENT this morning.  He had had a soft tissue Ct July 8th and it was clear at that point.  I am sad you've had your experiences, but THANKFUL you are sharing.  Dennis had HPV driven Stage 4 Squamous Cell Carcinoma in 2016 so his TONGUE cancer showed up at about year 5!!  Tongue cancer was removed and the dr thought it was not cancer so he didn't check for clear margins the first surgery.  He said it didn't look at all like cancer, but was removing it because it was causing my husband pain.  Well it did come back as cancer so we had to go back again and have it cut on again so that he could get clear margins.  Well here we are 4 months later will all these other symptoms and a possible tumor in the same place the other one was removed.  Now we will face a bugger tongue resection with a flap if this biopsy comes back as cancer.  Another soft tissue CT is scheduled for a week from today.  Thanks for all the great advice. 

MJG1

motorcycleguy said:

MJB,

I'm just over two years out, and I notice my neck seizes up, from time to time - usually if I hole it in an unusual position (like looking at a computer) at the wrong angle for too long. It doesn't usually last too long. Other than that, I just noticed crunching and cracking from time to time. Part of that is probably radiation, and part ... well ... mileage.

I certainly think that you husband should get checked out by ENT, and potentially a Scan - as I see my counterparts here have already recommended - especially if the symptoms are sudden and severe.

I sincerely hope that it's something simple, and easily treatable; I wish you and your husband the best possible outcome!

I'm glad he has you there to help him,

MG

Thanks, MG!

You can read the posts above to see what we're doing and where we are...Definitely appreciate all the great ideas and optinions!  Be safe!

Margi Greene

LitlCJdoll

If tongue flap...

Hello Margi,

Please feel free to message me here or in private if you have questions about the Tongue Flap surgery/ Glossectomy  or about recurrent SqCC. I am well experienced in all the above first hand ...unfortunately.

I am 3 years 4 months out from IMRT/VMAT radiation treatments ( and methotrexate treatments as well).

We hope of course, that none of this is the case for you husband, however if you would like first hand information, I'm here for you.

Crystal

wbcgaruss

MJG1 said:

Thanks, Russ...

We went to the ENT this morning.  He had had a soft tissue Ct July 8th and it was clear at that point.  I am sad you've had your experiences, but THANKFUL you are sharing.  Dennis had HPV driven Stage 4 Squamous Cell Carcinoma in 2016 so his TONGUE cancer showed up at about year 5!!  Tongue cancer was removed and the dr thought it was not cancer so he didn't check for clear margins the first surgery.  He said it didn't look at all like cancer, but was removing it because it was causing my husband pain.  Well it did come back as cancer so we had to go back again and have it cut on again so that he could get clear margins.  Well here we are 4 months later will all these other symptoms and a possible tumor in the same place the other one was removed.  Now we will face a bugger tongue resection with a flap if this biopsy comes back as cancer.  Another soft tissue CT is scheduled for a week from today.  Thanks for all the great advice. 

OK Folks I Am Glad

You got to the ENT and he didn't wait and got a biopsy right away.
Let us hope and Pray that it is just what he said it could be scar tissue.
So I am Praying that this is not cancer and the biopsy is negative there is Power in Prayer.
Wishing You The Best-Take Care-God Bless-Russ

Drivingdaisy

wbcgaruss said:

Have You Been To Your

Cancer doc or ENT recently for any follow-ups?
If not I would make an appointment right away and get these pains checked out.
They may be from previous radiation or it could be something else.
I would say get to your immediately and he can check you out and I would think they would do a CAT scan with dye of the head and neck area as I think that is pretty standard to check for a problem that may involve cancer or something else the scan should show any problems or not and make sure nothing is going on.
If they don't order one I would push for it.
Anyone can get cancer but when you already had it stay on top of the pains or anything unusual.
Could be no big deal and we certainly hope it's not but take no chances.
I was about 5 years out from throat cancer and got tongue cancer, thought I was in the clear with almost 5 years.
Then a year and a half later I got a sore neck and had lymph node cancer and the bad thing was it was not encapsulated in the node and had spread a bit.
Once bitten twice shy, my opinion don't fool with this get it checked and make sure everything is all right and find out the cause of it.
Take Care-God Bless-Russ

 

Hey Russ

You know my Cancer Dr did all this damage why so scared.  Was maintaining now stopped making plain, no flavor Propel We have been. Experimenting with making suomething close not pure water need the enzymes, need salt ,  pottasium &  magnesium in  right proportions  .  Ingested today too much salt for sodium issue and so woozy & out of it before a beer would correct it nope my body use to on Propel.  It's unbelievably thought and I'm out of it.   Went into hospital 1 day in overflow unit here in Fla out of control with Covid that hospitals overloaded & @ max.  Horrible case of costipation but didn't address said tried to hard at home that everything was super low, 111 sodium, very low potassium which they addressed.  Drs won't call back so instructions for discharge need update with them but feel I'm non compliant cause won't take everything they offer outside hospital.  Salt pills were ripping stomach apart GI confirmed.  Propel keep Me semi balanced and so refreshing can't do their flavors due to mouth & taste buds too sweet even cut with plain when I had it.  Tried water today due to dirrhea needed to keep hydrated try for healthy.  Found a salt pill in capsule with it all no flavor water but just not the same.  Feeling so off but Drs won't return calls still don't know what was on CT of abdominal scan from not pooping 3 weeks .  Did hear haven't you heard of  Senokot-s for senna.  What a miracle been taking 3 days cause couldn't get enema so been whittling away at it.  This IS all new to me been regular but dog of 16 yrs died & treatments caused I can't cry plus took a fall hurt my back muscles all in spasm made it hard to poop. Like in a vice.  But taken the Senocot-S 3 days during breakfast starts to gurgle than the urge comes & it moves things. Good stuff and all natural if I forgot to mention.  Beats them all out as stool softners but have to stay hydrated but water only & lack of sodium makes me unstable & woozy.  I'm a mess .  All from that second drug won't even use at Moffit.  Don't know where so weak to go for decent medical help.  Big tears if I had them.  HELP.     Hugs Russ, Lisa

wbcgaruss

Drivingdaisy said:

Hey Russ

You know my Cancer Dr did all this damage why so scared.  Was maintaining now stopped making plain, no flavor Propel We have been. Experimenting with making suomething close not pure water need the enzymes, need salt ,  pottasium &  magnesium in  right proportions  .  Ingested today too much salt for sodium issue and so woozy & out of it before a beer would correct it nope my body use to on Propel.  It's unbelievably thought and I'm out of it.   Went into hospital 1 day in overflow unit here in Fla out of control with Covid that hospitals overloaded & @ max.  Horrible case of costipation but didn't address said tried to hard at home that everything was super low, 111 sodium, very low potassium which they addressed.  Drs won't call back so instructions for discharge need update with them but feel I'm non compliant cause won't take everything they offer outside hospital.  Salt pills were ripping stomach apart GI confirmed.  Propel keep Me semi balanced and so refreshing can't do their flavors due to mouth & taste buds too sweet even cut with plain when I had it.  Tried water today due to dirrhea needed to keep hydrated try for healthy.  Found a salt pill in capsule with it all no flavor water but just not the same.  Feeling so off but Drs won't return calls still don't know what was on CT of abdominal scan from not pooping 3 weeks .  Did hear haven't you heard of  Senokot-s for senna.  What a miracle been taking 3 days cause couldn't get enema so been whittling away at it.  This IS all new to me been regular but dog of 16 yrs died & treatments caused I can't cry plus took a fall hurt my back muscles all in spasm made it hard to poop. Like in a vice.  But taken the Senocot-S 3 days during breakfast starts to gurgle than the urge comes & it moves things. Good stuff and all natural if I forgot to mention.  Beats them all out as stool softners but have to stay hydrated but water only & lack of sodium makes me unstable & woozy.  I'm a mess .  All from that second drug won't even use at Moffit.  Don't know where so weak to go for decent medical help.  Big tears if I had them.  HELP.     Hugs Russ, Lisa

Lisa

I will Private Message you.
Take care-God Bless-Russ