10 years after radiation

Grmad

It has been 10 years since my radiation therapy for tongue cancer. I still have horrible burning pain in my mouth with so many different foods and toothpaste is excruciating. Also, I have constant sore throat and earache. Does anyone else have this?

CivilMatt

welcome

Grmad,

Welcome to the H&N forum, 10 years is a long time in cancer years.

I do not have horrible burning pain in my mouth and toothpaste is fine.

Now, different foods (too spicy) are off limits and I will not even try them.  Been there done that.

I have had one sore throat in 5 years and luckily I had an unopen bottle of magic mouth wash, thanks for that. 

No earaches here.

I have plenty of side effects which hang on, but most have to do with eating and drinking, dry mouth and tiredness.

Matt

Bob Watt

I was hoping...

Hi Grmad, that the sore throat and earache would subside soon (13 weeks post radiation). My oncologist said I was experiencing phantom pains and they would go in a few months, but so far they are still there. Interestingly they were the same pains I had before I had treatment. I'm seeing the ENT specialist on the 31st so I'll get him to take a look.

Grmad

Bob Watt said:

I was hoping...

Hi Grmad, that the sore throat and earache would subside soon (13 weeks post radiation). My oncologist said I was experiencing phantom pains and they would go in a few months, but so far they are still there. Interestingly they were the same pains I had before I had treatment. I'm seeing the ENT specialist on the 31st so I'll get him to take a look.

curious...

I am curious about how your appt goes with your ENT. I had to leave my ENT when my husband's Co went with Kaiser. Basically they tell me it's all in my head. The earache and sore throat are on the same side the cancer originated. So I am always afraid that it's coming back. 

Bob Watt

It does worry me

that the 'phantom' pains is from cancer that they didn't get. I will let you know how things go with the ENT. My sore throat and earache is on the same side as my cancer as well.

skidog

10 year survival

Hey folks, I'm hoping long time members of this board as well as others that may know long time H&N survivors can share a brief status on how they are doing. It's always encouraging to hear stories from those who fought the battle and are flourishing. So, if you could please include: initial diagnosis and date. treatment and duration of treatment. and maybe a little about how you/they are doing this many years post treatment. Also, if any have had secondary cancers/treatment. Matt, I hope i'm not stepping on any toes here. Roll Call seems to include some of this info. Just thought I would start a thread regarding only long term survivors. Peace! Skidog!

rgay0979

grmad

grmad, Iv had this for the past 19 years.  Its something I'v had to work around.  Sour cream on my favorite Mexican foods eases the burn,  find a toothpaste that burns less.  I struggle with dry mouth and get my teeth cleaned regularly.  And on top of that Im told I really need dentures in order to end the loosing battle of saving my teeth.  Osteoradionecrosis is a big fear of opening pandoras box with healing and bone problems.  

I feel your pain. 

AnotherSurvivor

I used to love Korean Kimche,

I used to love Korean Kimche, and now even smelling it makes my tongue hurt.  I also had built a very nice collection of single malt scotch that ended up with my son and a collection of EM docs who have no clue on what they lucked on to.  Dry mouth comes and goes but Xylimelts are constant.  I do have numbness on my neck in the radiation target area.  That also comes and goes, but sun exposure and cold weather are the worst.  My expectation at +two years is that is the foreseeable future.  I still am not conviced that my waist size is stable, but my weight hasn't moved much in two years, so maybe.

Gigi2020

I am 15 years post surgery

I am 15 years post surgery/radiation/chemo for stage 4 SCC.  Give up on spicy.  It was explained to me that the layers of the tongue are thinner so it's more sensitive to spicy.

Mikemetz

skidog said:

10 year survival

Hey folks, I'm hoping long time members of this board as well as others that may know long time H&N survivors can share a brief status on how they are doing. It's always encouraging to hear stories from those who fought the battle and are flourishing. So, if you could please include: initial diagnosis and date. treatment and duration of treatment. and maybe a little about how you/they are doing this many years post treatment. Also, if any have had secondary cancers/treatment. Matt, I hope i'm not stepping on any toes here. Roll Call seems to include some of this info. Just thought I would start a thread regarding only long term survivors. Peace! Skidog!

Long term survivor

I'm not sure where to go after saying I'm an 11-year HNC survivor.  T4N1M0. 36 rads and 3 cisplatin chemos. HPV-negative! It's been a long, hard journey since getting my great NED scans in 2009.  ORN set in, which led to a left jaw resection in 2014, a second procedure in 2015, and the placement of a permanent feeding tube in 2019.  I use the tube for 90% of my food. My oral food is mostly limited to yogurt, blended soups, pancakes--you get the picture.  This whole thing sucked so much that I wrote a book about it.  It will come out in May, and has a chapter on CSN in it.  But even with all the hardships, I'm enjoying life a lot, and it sure beats the alternative with a Stage 4 cancer diagnosis, so no whining from this boy.

Mike

wbcgaruss

Mikemetz said:

Long term survivor

I'm not sure where to go after saying I'm an 11-year HNC survivor.  T4N1M0. 36 rads and 3 cisplatin chemos. HPV-negative! It's been a long, hard journey since getting my great NED scans in 2009.  ORN set in, which led to a left jaw resection in 2014, a second procedure in 2015, and the placement of a permanent feeding tube in 2019.  I use the tube for 90% of my food. My oral food is mostly limited to yogurt, blended soups, pancakes--you get the picture.  This whole thing sucked so much that I wrote a book about it.  It will come out in May, and has a chapter on CSN in it.  But even with all the hardships, I'm enjoying life a lot, and it sure beats the alternative with a Stage 4 cancer diagnosis, so no whining from this boy.

Mike

Love Ya Mike

Great perspective for all you been through-Take Care-God Bless

kgasmart

Earaches

i'm 2+ years out from BOT surgery/30 rads, and I get earaches  intermittently. Freaked out at first, had it all checked out, couldn't find anything, ENT and surgeon say just likely long-term radiation effects. The gift that keeps on giving!

wbcgaruss

Well kgasmart

It seems when we are through everything and out of treatment a couple of years and the treatment effects are gone then we encounter the after-effects which are no fun. Hopefully, minor annoyances for everyone but not always as some can be hard to deal with. And the bad thing is we are always haunted by the new ache, new pain, or odd feeling thinking uh oh is cancer coming back. Hope the earache's are not too severe and don't last long-Take Care-God Bless

HobbsDoggy

Ear Aches and Ringing

I am also starting to get the aches and rining.  I am not sold that its after effects I am 8 years out (I thought I was 9 years, I added a year for some reason I posted before I had 9 years). Anyway I am getting up in years and think that I am going to have my family doctor rule out other causes before I give up and say its just post radiation.  I am going to have another go at cancder treatment for a new spot and going to the University of Michigan for a consulitation.  May be a good idea to list current issues and ask them, the experts if these are really post radiation, or should I be looking at other things.

Not being doctors its hard to tell what is just after effects and what is a treatable condition.  We won't know if we don't ask.

Logan51

Long term side-effects

I'm a little over 11 years, like Mike, but I really cannot help. Though I had tongue scalding at the end of the first week(which may be why), I only got 56 Gys above the chin, and 68 at the base of my throat. So, I haven't really had issues with my tongue since tx. Thing is, if your ENT Dr. cannot help, then I would have him refer you to a Pain Management Dr. who can help, or go to a better-rated H&N C Center. 

wild willy

checking in

2010 rightside tonsil.stage 4. still no taste,trouble swallowing,limited amount of saliva. pain in right ear,neck and shoulder. thing is tho is i,m 80 years old and still kicking,maybe not as high but still kicking,

HobbsDoggy

No Taste

It took me about a year to get about 60% of my taste back.  At about 8 years out I have I would say 70% of taste back and am thrilled about that.  Some pain ya, but not a ton.  Good for you what an attatiude.  You rock!

Pooh's mom

Eye damage during radiation for forehead skin cancer?

My husband will have radiation soon for aggressive perineural squamous cell on his forehead.  How much is this radiation going to damage his eyesight?  The oncologist says he may get a cataract which can be removed.  Any other side effects?

dnelson964

eye damage and throat pain...

I was a Sinus squamous stage IV cancer patient now 4 year out now and cancer free. I also was told I might lose my eye so I elected to set up radiation treatment to only 1/2 radiation followed by second 1/2 being Proton treatment. Proton is more specific with less healthy cell over shoot damage. I still have my eye vision.

For throat pain during swollowing I eased that alot by using Aloe Vero juices instead of water. It is very healthy for us and has a slippery nice feel going down easing throat pain should that develope.

Good luck moving forward.