Bilateral Neck Radiation for Tonsil Cancer

Not sure why you'd need TORS if it was on your tonsil...  Do you mean lingual tonsil (which is at the base of your tongue)?  

It is a little strange that you'd get only 50gy (which is reserved for low risk patients) but then they painted both sides of your neck.  I assume you were hpv+?

Brandon

It's  protocol to do both sides though not at the same intensity. With IMRT there is usually a mop up week where they hit everthing else "just in case" I had 39 tretments at 70 grey and am doing relatively well with radiation side effects. My neck disection side is in a perpetual state of "tense" muscle but very doable.

I was diagnosed with HPV+ left tonsil on 10-15-20.  Surgeon recommended TORS, which was performed 11-24.  The recovery from that was hell, but they said with that plus the low dose rads/chemo, survivability went to 99% from 94%.  I am on chemo 6 of 7 and rad 24 of 33.  I, too, am getting shot bilaterally "just in case".  I believe I am getting 60/54g.  My lymph system found 2 infected nodes as well and had the MRND and, like Ratface, I still feel that tenseness throughout those neckline muscles ..not to mention still fairly numb neck to ear.  (Which is probably why I do not hurt from the rads there!)  However ... in my case, the surgeon found clear margins in 4 of 5 ... the deep margin still had some cancerous cells.  

So far, the worst of my symptoms have ceom from the chemo ... not the nausea I thought it was gonna be ..but the "chemo belly" and severe constipation.  Doc has me on some meds and OTC things for it, but it really affects my appetite and eating.  Thankfully only 1 chemo to go.

I can still swallow fine ... had to overcome not swallowing after TORS, so I already know the exercise protocols and importance of using the esophagus.  

All in all, as uncomfrtable as I may be from time to time with the belly issues, I have to believe I am faring quite well.  I have read on here some folks that, by the end of Week 5, have been enduring mouth sores, severe mouth dryness, very thick mucosis, etc.  Me?  I am extremely tired, and uncomfortable.  So although I want to complain, I would feel silly for doing so.

You and I had two different surgeries and two different forms of radiation ..but at least you skipped the chemo!  I'll be ringing my first bell this Thursday as I exit the chemo suite, then a week later my three dings on the radiation bell.  So I may have some tough days ahead of me, but I have some smalll victories to brighten my days as well.  

Personally, I am grateful for the bilateral, even though I questioned it at first.  The very LAST THING I want to have to do is repeat ANY of this EVER AGAIN.  If that means a little more discomfort now, then so be it.  I have given up weed and alcohol, too ...and I love both.  But no more, no way, no how.  This has been a very challenging 4 months already with at very least another to go until I show signs of recovery ...and no telling which, if any, of these symptoms will stay with me post treatment.  

I trust my care team to do what is best; they have far more experience at this than i ever hope to.  

One last point ... I think, in retrospect, I would have decided against TORS.  I am pretty sure ..and no blame game here... that since I met some thresholds for that, that I was rushed and talked into it so they had another number/patient for their studies.  Had I done full dose chemo/rads way back in November my treatment would be deep in my rear view mirror by now and life would be returning to normalcy.  That being said...had it not been for the thousands of folks being used as studies/patients that went before me, my treatment could have been a lot worse..so if my TORS experience can help future cancer patients have a more reliable and/or easier time through this, then I will accept that price to have paid...I appreciate all those that went before me for their personal sacrifices.  

Look forward to hearing more from you!  

Don -- Beagledad

CaptZ said:

Thanks for the detailed post

Thanks for the detailed post Don and others,

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It's certainly nice to candidly talk with other real people out there who have had to experience this. 

For me the TLM\surgery felt "clean" (I could understand\liked the idea of go in and remove the bad stuff) and it was a very linear recovery after 2 weeks. Radiation felt and still does to me a bit "sinister" as I don't really know VMAT coverage plan, how quickly my side effects will improve, what lasting damage may have been done and did I get too much? Getting treated under Covid restrictions, it perhaps felt like a lot of support services, information and care were far more limited than at other times. Dry mouth while eating is certainly frustrating as well as the dental care and neck physio (I'm not a fan of my neck dissection but guess it saved me from chemo and more rads). Hope the radiation plan is progressing well Don with minimal effects, sounds like you have good care. How is your neck skin and beard? My neck is still "tanned", some fuzz is starting to come back. Are you getting focused IMRT just in tonsil area or are they covering full neck? Mine was clavicles to jaw. 

Like most of us I'm sure, I never really knew tonsil cancer was a thing until it happened to me last year. I was 44, happily married, 3 young kids, working in IT as a services manager and thought I was in fine health and life going well.....then boom...cancer from something I accquirred maybe 15 years ago or more???? surreal. . 2 months out I have experienced a good deal of depression post treatment and it's been challenging to not think of this experience\trauma very negatively, especially with all the ramifications. It hits us physically, mentally and emotionally. I still wake up and it hits me all over again thinking how good I had it and wish this wasn't something I\we had to face in our lives. I'm finding it challenging to get back to a normal life so far with shadow it has cast. Wife and kids have been amazing, but does anyone else feel worn\damaged after this treatment? Don't want to be a downer, just where I am at in processing.

Athough I was never into their music very much, I was researching about Bruce Dickinson (Iron Maiden Lead Singer) and Dave Mustaine (Megadeth Lead Singer) who have both had similiar treatments for HPV+ oral cancers and both of them actually have some inspiring interviews post treatment and they are doing well. Dave M did a lot of CBD oil during treatment to encourage his appetie, but also reading CBD can contribute to HPV+ infection becoming cancerous. I quit both CBD and alchohol as well, miss the beers the most so far.

Really value all the conversation and thoughts,

Z

 

Gone through plenty at a young age. But cancer has no age restrictions. I'm sure getting treated under Covid conditions was very different in some ways. Hang in there on the dry mouth and you will adapt to it plus your saliva may still improve, how long since you finished treatment? Sorry, this hit you at your age with young kids but since you are young your body can bounce back easier and quicker. This does take a toll on us physically and mentally and can wear you down but just look ahead the cancers gone and you can move ahead. Depression wise we all get it but cancer treatment people possibly more so. I just try to count my blessings when I'm down a bit. Like I'm not in a hospital, I'm home where I can do things and move freely, I can call folks on the phone and help neighbors and family or cheer someone up. You may feel worn\damaged after this treatment but you have to adapt to what we call the New Normal. You are pretty fresh out of treatment and many aspects may improve for you as there are folks that still get improvements like taste and saliva and other things 2 or more years out. Be glad you are off the CBD and alcohol and concentrate on your family and the blessings you have and this cancer experience makes us cherish all the moments and things we never paid attention to before. Wishing you and your family the best-Take Care-God Bless-Russ