HPV - Post Surgery & Post Proton Beam Therapy

HaagenDazs

Hi all, first post.

I'm 42 and I was diagnosed with HPV-16 in my left tonsil and base of tongue back in April 2020.  In May I had TORS to remove the tumors and a neck dissection to remove the lymph nodes on the left side of my neck.  I had to go through proton beam radiaiton after surgery due to the fact that it had spread to 2 of my lymph nodes.  I completed my final proton beam treatment on August 4th.  Since then it seems as though things have slowly gone downhill.  Nothing drastic, but I've had some very slow healing and as of the past week or so, I've had more soreness when swallowing. I guess my question is, has anyone experienced anything similar and if so, was there anything you'd do differently?  My doctors have attributed most of this to slow healing and I have to believe them!  I'm wondering if there's some lymphadema that's hindering swallowing and causing discomfort?  Has anyone had a similar path that has experienced this?

johnsonbl

I had a similar path as you....

Same age, same surgery, same number of positive nodes left side of neck.  I did traditional radiation vs. proton however.  I'm now 3+ years out and all I can say is that I've had lots of changes and weird sensations over this time period.  As the structures in your neck and surgical area heal over time you'll have a lot of weird feelings.  If my neck cramps it will often "pull" on my base of tongue area...all of these areas are just super connected and with scar tissue from the neck disection and scar tissue from the TORS it doesn't take much for one area to get cranky and affect sensation in the other.  Sometimes I'll get a "draggy" feeling where it seems like the left side of my tongue is just a little less responsive than normal.  Usually goes away as quietly as it came.

Only once did I have a "sore" throat and it was at about 4-5 months post treatment when one of the surgical clips they used pushed its way out.  Yes, that's right...there are multiple surgical clips they left in you that may move their way around as you heal and could cause some discomfort.

Continue to monitor and if things worsen don't hesitate to give your team a call.  It's a long road full of bumps but with enough time you can get back to 99% of normal.

Brandon

 

HaagenDazs

johnsonbl said:

I had a similar path as you....

Same age, same surgery, same number of positive nodes left side of neck.  I did traditional radiation vs. proton however.  I'm now 3+ years out and all I can say is that I've had lots of changes and weird sensations over this time period.  As the structures in your neck and surgical area heal over time you'll have a lot of weird feelings.  If my neck cramps it will often "pull" on my base of tongue area...all of these areas are just super connected and with scar tissue from the neck disection and scar tissue from the TORS it doesn't take much for one area to get cranky and affect sensation in the other.  Sometimes I'll get a "draggy" feeling where it seems like the left side of my tongue is just a little less responsive than normal.  Usually goes away as quietly as it came.

Only once did I have a "sore" throat and it was at about 4-5 months post treatment when one of the surgical clips they used pushed its way out.  Yes, that's right...there are multiple surgical clips they left in you that may move their way around as you heal and could cause some discomfort.

Continue to monitor and if things worsen don't hesitate to give your team a call.  It's a long road full of bumps but with enough time you can get back to 99% of normal.

Brandon

 

Thanks for the follow up! 

Thanks for the follow up!  Hmm, didn't think about the clips they put in.  I know there were several titanium clips that were left in place but I didn't give much thought to the fact that they might move.  When you say pushed out, did it literally come out through the skin or what? Sounds wild.

 

I've had that tongue "pull" more than a few times, especially if I left my head or turn it a certain way. 

 

I'm due for my first post-treatment PET scan next week with a nose scope a few days later (those are fun). 

 

Drew

johnsonbl

Clip

Yes, I had a clip literally push it's way up and out of the tumor bed.  I've always been able to reach in there with a finger and feel my tumor site between the BOT and left tonsil.  My throat had been sore so I stuck my finger in there one day and could feel this "hard, small lump" right on the tumor site that was sore to the touch.  Needless to say a freak out ensued.  It ultimately worked it's way out and I never found it.

I think I posted on this forum about it...even had a picture of it when they scoped me.  lol.

When you say you have difficulty swallowing, what do you mean?  Are you choking or aspirating food/drink?  Going up your nose?  I'm assuming you didn't have a feeding tube or anything during your treatment?

Brandon

erinmcmi

Hi, I also had tors and neck

Hi, I also had tors and neck dissection. 2 nodes positivr so had rads as well. Weird sensations in jaw and throat. Feels stiff.