Neck Under Chin is hardening ...Normal? Can I stop that? Post Base of Tongue Treatments 3 mnths ag

Tim6003

Hey all.

I know I have lots of questions since I am a newbie.

I am now off all pain meds except about 2 narco a day and I take advil as needed for the swelling under my chin in my neck (seems to help until is wears off) ....but what I have noticed is how hard my neck is getting under my chin.

Let me see if I can describe it:

I took longer to improve than most do (3 months post treatment, ended Jan. 20th 2012, and just the last two weeks had mucous and heavy pain go away) I was on 6 narco a day and wore two fentynol patches 25mcg and 12mcg as well as took 5 advil every 6 hours...now like I said above only 2 narco a day (mostly for withdrawal per doc) and the advil.

If you were to reach out with one hand and grab me by the neck under my chin but above my shirt collar (you get the location) and squeeze...it's as if there is a hard ball under there. Of course since I have not had my first post treatment PET scan my mind wants to run away with this.....but when I went for my last visit 4 weeks ago both my ENT and my ONC at my request stuck a scope down my throat and said visually I look good. I might add the ENT to my surprise stuck his finger waaaayyy down my throat and pressed against my tongue ...my wife witnesses this and said to me "I've never seen your eyes so big" ..lol. He said what he was about to do, but I did not have time to digest what he said before it happened.

So am I worried about nothing? The only reason I ask this question with this post is because I also feel so weak and blah still! My wife said you did not feel that way until you went off the fentynol patches this past Thursday (cold turkey bc I did not think I need them anymore so I did not call in a scription) ...and man did I feel bad for 2 days until I got a refill of my narco.

Thanks for any feedback on the hard / thick neck issue. Sorry if I post so much ....I just think some of my issues are the approaching PET scan date.

Thanks all ...

Tim & Jennifer Cogdil
Idaho

Tim6003

One more ?
Can anyone tell me how normal it is to NOT get an all clear on your first post treatment PET scan (as in false positive).

I noticed ratface still has some spots on his lungs??? Yet the insurance company won't pay for another scan (that really irritated me to read that).....

Did any of you have a falst positive or some spots or were not given the all clear then later got the all clear?

Thanks,

Tim & Jennifer
Idaho
timcogdill@yahoo.com

longtermsurvivor

Tim6003 said:

One more ?
Can anyone tell me how normal it is to NOT get an all clear on your first post treatment PET scan (as in false positive).

I noticed ratface still has some spots on his lungs??? Yet the insurance company won't pay for another scan (that really irritated me to read that).....

Did any of you have a falst positive or some spots or were not given the all clear then later got the all clear?

Thanks,

Tim & Jennifer
Idaho
timcogdill@yahoo.com

Hi Tim
Lots of stuff, but its all good. It is pretty common to get false positives on the first PET scan, especially for those that had a bulky tumor to begin with. Ratfaces situation is a little different, in that he has some small spots in his lungs (almost for sure unrelated) that r being followed. I had those to, and they were followed until it was shown theynwere not growing.

The hardness is pretty normal for now. I have a good deal of it since my rads ended Febr. 23, and I had them much worse after my radical surgery 18months ago. Lymphedema. Once u heal enough, it will go down. That can take a couple of years.

The narcotic thing: it is very usual to be addicted to the narcotics we r on fornso long with these treatments. Tiredness is one of the symptoms of withdrawal. Talk to your doctornabout it. Hes seen it many times. Those symptoms wont last very long.

Lots of stuff, but it sounds like u r doing pretty well.


best to you


Pat

Tim6003

longtermsurvivor said:

Hi Tim
Lots of stuff, but its all good. It is pretty common to get false positives on the first PET scan, especially for those that had a bulky tumor to begin with. Ratfaces situation is a little different, in that he has some small spots in his lungs (almost for sure unrelated) that r being followed. I had those to, and they were followed until it was shown theynwere not growing.

The hardness is pretty normal for now. I have a good deal of it since my rads ended Febr. 23, and I had them much worse after my radical surgery 18months ago. Lymphedema. Once u heal enough, it will go down. That can take a couple of years.

The narcotic thing: it is very usual to be addicted to the narcotics we r on fornso long with these treatments. Tiredness is one of the symptoms of withdrawal. Talk to your doctornabout it. Hes seen it many times. Those symptoms wont last very long.

Lots of stuff, but it sounds like u r doing pretty well.


best to you


Pat

Thanks Pat
Man Pat....you know how to make a guy feel better .....

It's from hearing others experiences that keep me (maybe us) sane ...

Thanks again.

Tim & Jennifer
Idaho

btw ...that profile picture is of me kissing my youngest boy (then 3 months old) ..he is now 21 months old ....so I'm in this to win!

Pam M

Lots "Light Up" for a While
My first PET was not clear - my doc said there was a chance we didn't get it all, but usually the case is residual activity/cancer on the way out.

Not sure about how to prevent tissue hardening - my neck is "very firm" on one side - I'm assuming part scar tissue/part removal of soft tissue.

longtermsurvivor

Tim6003 said:

Thanks Pat
Man Pat....you know how to make a guy feel better .....

It's from hearing others experiences that keep me (maybe us) sane ...

Thanks again.

Tim & Jennifer
Idaho

btw ...that profile picture is of me kissing my youngest boy (then 3 months old) ..he is now 21 months old ....so I'm in this to win!

keep posting
there are lots of questions but there are lots of answers too. I was looking at your bio. You had the exact cancer I had in 1998. Stg 3 BOT with one node. I had a traditional radical neck dissection and rads then. My node was small, maybe 1.5 cm. it cured me. No need for u to suffer through worrying about things that others have experirnced and can help you with. Weekends r usually pretty slow here. Only those of us without a date post much:). Keep coming back.



Pat

Marty36

PT and Lymphedema theapry
I also have hardness on the side of my neck that was cut into and radiated. I've been going to physical therapy for the last few months and have started seeing an occupational therapist for lymphedema therapy. The PT--which is home exercises and a lot of manual therapy in the office--has really helped my range of motion and also alleviated some of the hardness. I've just started lymphedema treatment, but already notice my neck is getting less puffy and "full"

oldpaint03

hardness in neck
Good to have the treatments over , but you will continue to have odd things going on like the swelling of your neck.
My husband had stage 4 BOT with nodes involved on both sides of his neck so no surgery. He finished treatments Jan. 2011 and is still having swelling under his neck, plus a bloodclot in his jugular vein, he is still having problems putting on weight even though he eats about 3500 calories a day. He still has problems swallowing so he drinks about 32 oz. of water with every meal. neuropathy from the rads and chemo and gets dizzy often.
But The good thing is the CANCER IS GONE!!!!!! He just started working part time again and that is making him feel better about himself.
The healing takes years for some so if you finished treatments in jan. then it sounds like you are doing pretty well. You will feel lots better after the Pet scan.... Have Faith and know that We are keeping you in our prayers.
Jonni

Tim6003

oldpaint03 said:

hardness in neck
Good to have the treatments over , but you will continue to have odd things going on like the swelling of your neck.
My husband had stage 4 BOT with nodes involved on both sides of his neck so no surgery. He finished treatments Jan. 2011 and is still having swelling under his neck, plus a bloodclot in his jugular vein, he is still having problems putting on weight even though he eats about 3500 calories a day. He still has problems swallowing so he drinks about 32 oz. of water with every meal. neuropathy from the rads and chemo and gets dizzy often.
But The good thing is the CANCER IS GONE!!!!!! He just started working part time again and that is making him feel better about himself.
The healing takes years for some so if you finished treatments in jan. then it sounds like you are doing pretty well. You will feel lots better after the Pet scan.... Have Faith and know that We are keeping you in our prayers.
Jonni

Oldpaint, Marty and Pam .......
Thank you for your feedback.

Oldpaint ....I wondered why the hospital's financial office suggested I apply for Social Security (I did not). I'm sorry your husband has had such a long recovery, here I was feeling down for myself for what seemed like forever! Shame on me!

I was very fortunate the guy I worked for left my job open and also allowed me /my family to stay in my accommodations (he provides housing at not cost to me as part of my compensation) even though he knew I may be out 3 months. I was able to go back to work in 8 weeks after treatment ...but I had a VERY tough time and had to schedule my staff around my shorter hours. Just in the last 2 weeks I have been able to really work full time and have enjoyed it very much.

Tim & Jennifer
Idaho

George_Baltimore

Tim6003 said:

Oldpaint, Marty and Pam .......
Thank you for your feedback.

Oldpaint ....I wondered why the hospital's financial office suggested I apply for Social Security (I did not). I'm sorry your husband has had such a long recovery, here I was feeling down for myself for what seemed like forever! Shame on me!

I was very fortunate the guy I worked for left my job open and also allowed me /my family to stay in my accommodations (he provides housing at not cost to me as part of my compensation) even though he knew I may be out 3 months. I was able to go back to work in 8 weeks after treatment ...but I had a VERY tough time and had to schedule my staff around my shorter hours. Just in the last 2 weeks I have been able to really work full time and have enjoyed it very much.

Tim & Jennifer
Idaho

Neck hardness
I wouldn't worry too much about the hardness in your neck being the recurrence of your tumor. I was treated for BOT back in 2004. Radiation is truly the gift that keeps on giving. Unfortunately, the hardness is probably here to stay if you are like me. The cancer didn't kill me but LOL, the radiation is trying. I've had lymphedema therapy for a different surgery last year. It has brought my lips down to manageable proportions but the neck hardness is here to stay. If yours stays, you will learn to get used to it. It's just one of those inconveniences. Stop worrying about the tumor reappearring.

ratface

George_Baltimore said:

Neck hardness
I wouldn't worry too much about the hardness in your neck being the recurrence of your tumor. I was treated for BOT back in 2004. Radiation is truly the gift that keeps on giving. Unfortunately, the hardness is probably here to stay if you are like me. The cancer didn't kill me but LOL, the radiation is trying. I've had lymphedema therapy for a different surgery last year. It has brought my lips down to manageable proportions but the neck hardness is here to stay. If yours stays, you will learn to get used to it. It's just one of those inconveniences. Stop worrying about the tumor reappearring.

hardness
Tim, my dentist has his office in the cancer center specifically for head and neck patients to get pre-treatment care. He has been so fabulous that I continue to see him as my regular dentist and have switched my entire family there. The first time he felt my neck he glanced at me and told me this story. The first time I palpitated a cervical node on a radiated patient I had to run downstairs to the radiation oncologist office to get the Rad doc to take a look for fear of a recurrence. It feels like an enlarged node to a doctor, so you are going to have to watch that no one overreacts. This well trained dentist didn't know the difference. Point is, yeah there is a hardness there, on me, its' been there three years now. It's barely noticeable unless you feel and look for it.

The all clear may never come. You can wind up like me with something out of the ordinary. Then all you care about is, "unchanged" and that's just fine with me. Best of luck.