I’m a little over a year out of treatment and still cancer free

Charmit

Hello everyone I haven’t been on here in sometime. Hope you all are doing well and summer is treating you well? Question I’m a year out of treatment and NED so blessed!! However I still have numbness and very sore the side of my neck dissection and radiation. Is this normal after over a year out of treatment as of June 15? Lately I keep thinking my cancer is back....I do go for my scopes and I was going monthly for the a year post treatment, last scope was in June and it was all clear. Now I am every two month and my next appointment is in September. 

Im just wondering if anyone else still has that uncomfortable pain or should I be worried?? 

Thanks and God Bless

Charlene

wbcgaruss

Charmit Congratulations

And God Bless for hitting that one-year milestone now you can start adding more. I have not had neck dissection only radiation so I am not sure about the soreness but I believe you could experience it maybe a year or more out of treatment as to what I have read from others on here. Especially with having both radiation and a dissection. Has the soreness diminished in intensity over time or is it as it was when you first got it? Anyway, that is the routine I had after my treatment, go to the ENT every month, then later every 2 months, 3 months, etc. Since you were going to your appointments and the doc did not feel anything was abnormal and your recovery was progressing as expected I wouldn't worry. I was told after I was done with treatment that my ENT would be my front line guy to watch over me and watch for anything abnormal going on, so if you have an ENT you are comfortable with trust in him. If something is bothering you go in for an extra appointment right away, they don't mind. Better to be safe than sorry. Take care-God Bless

big G

wbcgaruss said:

Charmit Congratulations

And God Bless for hitting that one-year milestone now you can start adding more. I have not had neck dissection only radiation so I am not sure about the soreness but I believe you could experience it maybe a year or more out of treatment as to what I have read from others on here. Especially with having both radiation and a dissection. Has the soreness diminished in intensity over time or is it as it was when you first got it? Anyway, that is the routine I had after my treatment, go to the ENT every month, then later every 2 months, 3 months, etc. Since you were going to your appointments and the doc did not feel anything was abnormal and your recovery was progressing as expected I wouldn't worry. I was told after I was done with treatment that my ENT would be my front line guy to watch over me and watch for anything abnormal going on, so if you have an ENT you are comfortable with trust in him. If something is bothering you go in for an extra appointment right away, they don't mind. Better to be safe than sorry. Take care-God Bless

NED!

Congrats Charmit!, on the one year. I also had neck dissection and about 8 months out from last rad treatment and still have some soreness that comes and goes but seems to be getting better. I have had several scopes to. I have read people say it can take a year or more to fully recover. As long as your ENT gives the green light you shoud be fine but by all means tell him any concerns you may have.

debbiel0

I have often wondered how you

I have often wondered how you are doing!  Sounds like t for the most part, things are going well for you. II am just over two yrs out of treatment now. I had numbness for about 18 months after treatment. Then aa slow and gradual recovery started. The total recovery took a long time and was so gradual that I didnt notice it. Just one day it was, wow! That's gone!   This journey never ceases to surprise me. 

After two years , my saliva is back about 75%, my taste about 90%, foods I can eat, only about 50% to what I used to be able to eat.. but after a year of a feeding tubev I am so very happy! 

Embrace the positive, let your medical team deal with the unknown, try not  to worry until they tell you to!  Be thankful for everyday. 

Sorry you have more concerns, but happy to hear from you!

yensid683

Unfortunately

It can linger and for quite some time.

I was DX in March of 2012 with stage IV-a base of tongue cancer, treatment included induction chemo, concurrent chemo/radiation and then finally selective neck dissections.  (yes plural)

I had my first one 5 months after the end of of rads, nodes removed showed only weak and 'inactive disease'.  Follow up PET 5 months later showed the same spot but with a different view.  Long story short, the original surgeon only removed some of the nodes.  I was referred to a specialist in head and neck cancer for the potential of a modified radical.  Surgery exposed a nasty looking node which was sent to pathology while they prepared to do the deeper procedure, fortunately it came back negative, so no modified radical.

I'm now 6 years out from that surgery, I still have numbness in the area of my left ear lobe and the corner of the jaw, at times it feels like it is trying to wake up with an annoying itch that at times can be painful but not so much that I'd ever take something for it.

I was told that the surgery does impact that nerve, that the extensive dissection needed to expose the lymphatic arch does impact a number of small nerves and that this can be very common and likely permanent.

At times it fades into the background and at other times it is maddening but all in all, I'm now 7 years out from the end of rads, my annual check ups continue to be clear and my current head and neck DR says that the chances of a recurrence are in the single digits. 

Sorry to bear some negative news, but in the great scheme of things, I'll put up with the *#&@*)O* because

I AM ALIVE!

Peter

Charmit

debbiel0 said:

I have often wondered how you

I have often wondered how you are doing!  Sounds like t for the most part, things are going well for you. II am just over two yrs out of treatment now. I had numbness for about 18 months after treatment. Then aa slow and gradual recovery started. The total recovery took a long time and was so gradual that I didnt notice it. Just one day it was, wow! That's gone!   This journey never ceases to surprise me. 

After two years , my saliva is back about 75%, my taste about 90%, foods I can eat, only about 50% to what I used to be able to eat.. but after a year of a feeding tubev I am so very happy! 

Embrace the positive, let your medical team deal with the unknown, try not  to worry until they tell you to!  Be thankful for everyday. 

Sorry you have more concerns, but happy to hear from you!

I’m songlad to hear your well

I’m songlad to hear your well!! Recovery is slow my saliva is back to almost normal and taste was back about 5 months out of treatmen. I’m blessed for you as all of us are to survive what we went through. The weird feeling, numbing at time or down right hurts scares me, but I’m here I’m cancer free and I’m taking it day by day. Living life to the fullest. God Bless you and your continued road of being cancer free!!

Charmit

yensid683 said:

Unfortunately

It can linger and for quite some time.

I was DX in March of 2012 with stage IV-a base of tongue cancer, treatment included induction chemo, concurrent chemo/radiation and then finally selective neck dissections.  (yes plural)

I had my first one 5 months after the end of of rads, nodes removed showed only weak and 'inactive disease'.  Follow up PET 5 months later showed the same spot but with a different view.  Long story short, the original surgeon only removed some of the nodes.  I was referred to a specialist in head and neck cancer for the potential of a modified radical.  Surgery exposed a nasty looking node which was sent to pathology while they prepared to do the deeper procedure, fortunately it came back negative, so no modified radical.

I'm now 6 years out from that surgery, I still have numbness in the area of my left ear lobe and the corner of the jaw, at times it feels like it is trying to wake up with an annoying itch that at times can be painful but not so much that I'd ever take something for it.

I was told that the surgery does impact that nerve, that the extensive dissection needed to expose the lymphatic arch does impact a number of small nerves and that this can be very common and likely permanent.

At times it fades into the background and at other times it is maddening but all in all, I'm now 7 years out from the end of rads, my annual check ups continue to be clear and my current head and neck DR says that the chances of a recurrence are in the single digits. 

Sorry to bear some negative news, but in the great scheme of things, I'll put up with the *#&@*)O* because

I AM ALIVE!

Peter

Glad you are well Peter, my

Glad you are well Peter, my you continue in good health. And your so right some negatives means we’re alive and that makes it all worth it!!

motorcycleguy

Seven months after surgery on my neck.

I still have a weird sensation in my neck and ear on the operation side. It feels like it's "asleep / numb" most of the time.

 

It's not at all painful, but it almost feels like the doctor sewed a piece of horsehide to the side of my neck!   LOL

 

I'm hoping to get feeling back in it - but at this point, I'm used to it, so I'll make it either way.

 

I wish you all the best, and hope you feel better very soon!!

Fritz

Still numb and sore 3 years out

I too had a neck dissection whereby a cancerous node and 23 others were removed.  Stage IVA (old staging) tonsil cancer with spread into tongue and soft palate and nearby node.  Neck dissection and surgery to remove both tonsils and parts of tongue and soft palate was completed 4/20/2016.  33 rads and 7 Cisplatin treatments.  Still numb and sore on the neck dissection side after 3 years.  Have accepted this may be the case forever at this point.  As long as I remain NED, I can live with the numbness and other post treatment issues (thick saliva, etc.)

Hope you have many years of NED in your future.

Freddie