Surgery Update & questions

Jim ~ I had TORS last november and my margins were clear but weren't quite as much as they hoped.  I had sliver of my tongue removed, a tonsil, my soft palate removed and reconstructed.  I stayed in the hospital for 5 nights and it was the worst experience of my life (at the time).  When I got home it continued another week or so and then got better.  

1.  I didn't need a feeding tube, but I had a clinical trial that was 2x radiation a day for 2 weeks and lower dose chemo each Monday for about 4 hours

2.  Pain was terrible.  I was prescribed fentanyl patches.  Pain was still there but I was able to choke down my very high calorie boosts and 100oz of water.  Yes, I wanted to cry attempting.

3.  I still have numbness and hypersensitivity in my neck but it doesn't bother me at all.  It is weird when I shave but I use an electric now so I am comfortable shaving but it does feel weird.

4.  I used a scar cream from walmart and it has progressed great.  

If I can be of any assistance, please reach out to me.

I only had radiation post surgery which from everything I see is a little less intense than chemo/rad combo.

I would recommend not getting the feeding tube until you have to.  Having it just makes it easier to avoid eating and drinking.  The longer you CAN go by mouth the better off you will be.  I truly believe that the more hydration you can take the better you will be.  Not thirsty?  Drink water?  Peeing every 20 minutes.  Have another glass.

I was on gabapentin for a while, which is a type of nerve desensitizer...  I didn't think it did too much but I also didn't really have much pain during radiation so maybe that's why.  :-)  Mine was just more of a bad sore throat that never stopped...started around week 3 out of 6.  I just mostly sipped cool water and gargled a salt/baking soda mixture.  If they don't have you do this definitely ask about it.  They can prescribe an analgesic that many here refer to as "magic mouthwash"...which is basically lidocain you gargle to numb your throat before you eat.  I didn't like it at all.  It literally makes your throat numb.  I wasn't a fan.  But again, I really didn't have a lot of trouble.  I ate food all throughout, really only shifting to a soft diet for the last 2 weeks or so.  Yogurts, lots of mash potatoes and gravy, ice cream, pot pies...soft, lukewarm and salty to maximize the taste.

The neuropathy will probably stick with you forever but it will probably improve over time.  I'm 4 years out and my neck still has a little numbness.  I do get a lot of cramping/stiffness where my neck dissection was done.  It's all pretty manageable with some massage or stretching when it gets tight.

Brandon

First off, having gone through TORS< I completely relate to your experience.  Worst pain of my life.  Now to your questions:

1. get a peg before surgery or wait until i may need one?   YES.  I had nasal tube for 3 weeks.  Hated it.  Did not much like the peg tube either, but it was easier.  I noticed that with peg tube, I had a lot of discharge as I swallowed more (ensures, fluids, etc).  Learn to change that bandage; we swapped it 3-4 times per day.  Many days, the only comfort I had was a long hot shower, so we had to re-apply that bandage around the tube..if you don't, and you get discharge, it will get infected.  I can still see the "scars" from the adhesive from those badnages.  

2. how is it "relearning to swallow"?  Frustrating at times.  You probably wont be able to even THINK about swallowing for a good deal of time.  As you have probably read here a lot, get as much exercise to that esophagus as you can going in.  I am now 6 months post tx and still have some swallowing issues, but overall they are manageable.  Hey, I can eat and taste, so the rest is minor league stuff!  

3. how long does it take for the neck nerves to all wake up? can it be permanent? (not the end the world, i have a finger like that you just get to used to it).  I asked that very smae question ... I still have nerves that have not awakened in my neck where TORS was done.  Here is a sign though ... as they begin to wake up you will feel an itching or tingling.  Mine started way up top of my ear ..felt like I was walkign through spiderwebs.  A few weeks later I noticed I could "feel" up there.  I did not begin to regain feeling, though, until about 2 months post tx.  I still have a small area of numbness that I expect will go away.  I can feel most of my neck now.  Dealing more with the lymphodema than anything.  Again, not a huge issue, but I would prefer for my lymph fluids to go somewhere other than hang out in a sac under my chin.  

4. recs for putting something on the neck scar to make it more flexible, etc. i don't care how it looks particulary...Pay close attention here.  One of the folks on this very site recommended this treatment and I did it ...but I failed to do one part ..... my wife and I applied this stuff all over the radiation part (which covered most of the scarring on my nect) but we did not apply it to the scar part under my chine (I was not radiated there; we thought this wasonly good for the radiated skin).  Piplilly recommended this and we did it and it worked jsut like she said it did for her hubby:  Buy three things.  Some PURE aloe. (No alcohol).  Some pure coconut oil.  And the highly recommended  aqufor.  Take the bottle of aloe with you to every radiation.  AS soon as you are done...when you are getting back into street clothes or getting into your ride, apply the aloe to the radiated area (and the scars).  Midday some time apply the coconut oil to the same areas.  At ngiht apply the aquafor.  I used a tshirt and tied it around my neck to try to keep it off the couch where I was sleeping.  That part was a PITA, but do what you need to.  Today, my skin is all soft and you can hardly see the scar on my neck.  It is soft and pliable.  The one under my chine is a bit tougher and acts like a wall to stop the lymnph fluids.  So if I had a do over, I would have applied those lotions to that area as well.  

Now, in a different post you mentioned music.  Always up to you ... but in my case, the radiation treatments only lasted 10 minutes.  And NO there was no arm moving.  The sound of the machine was nothing.  I watched it go around, back again, and around again and I was done.  The nurses probably would have "allowed" music, but they were constantly busy ... getting person in front done, set up for me, get me done, set up for next person, etc.  For a mere 10 minutes of radiation, going through al lthe work of setting up music seemed pointless.  I had been prepared, in fact, to listen to an audio book ..I figured 10 minutes times 33 radiations and I would get it all done during treatrment and give me something to "look forward to" but again that was scuttled when I realized how fast it was and the inconveneice I would have caused the very sweet and kind (and sometimes good looking) nurses when, in reality, all I wanted to do was get in, get out, and go home and rest again.  

The chemo and radiation expereinces are much like you have read here from folks that have gone through it recently.  First few weeks you wonder if you are in treatment at all.  Last 3-4 you wonder if the days will ever end and the pain ever go away.  We each find something to do with our brains.  For me it was thinking and researchiing recipes for stuff I would cook when I could eat again.  I also kept all my friends abreast of my experience through a facebook "blog" each week.  Them being interested and me offering to share my experience was cathartic for me; gave me a lot of support and something to do.  Our friends do not know how to ask or what to say.  So they may seem distant or uninterested when, in fact, they are extremely interested but unsure of how to proceed.  By doing that FB thing I provided up to date experience and information without creating sympathy.  They go to "sahre" it with me, and I got, in return, their compassion and willingness to participate.  Hell, I een had folks I never met send me **** ...two people sent me an Intant Pot when I was discussing them and asking questons about them  They all want to do SOMETHING but have no idea what or how.  Helping your friends understand your experience might be an approach you find useful.  It sure was for me.  

Time.  Time goes by VERY slowly during treatment.  You simply cannot sleep 22 hours a day..so most days I just laid here, drool rag under my mouth, looking like a quadrapelegic.  I had NO energy .not even enough to lift a phone.  I just laid here watching ot the window praying for sleep.  

Always ask doc first, but I found benadryl to be a big help.  Not only did it make me drowsy, but as a side effect, it minimized the mucosis.  Don't underestimate how irritating that **** is.  Also watch your poop.  You will be eating less, so you will naturally assume that is reason for fewer poops.  I dealt with constipation for 3 of the worst weeks during radiation.  I proabbly could have had a much easier time if it werento for that constant pain in my abdomen.  Because of the constipation, I was loathe to take my pain meds, hence more pain ..bad cycle.  Stay AHEAD of any possible constipation.  Laxatives?  Sure .... but who wants to take a laxative and then go have to lay on a radiation table worrying about an explosion in front of 4-5 nurses?  And given the fluid intake, I was up several times each night peeing .... and I wanted sleep SO badly ... taking my laxative would only ensure I was going to get up even MORE often to go to the bathroom .... see the contradictions and conundrums?  

Fluid & food:  My wife and I finally decided to mix 1 ensure with water in my gravity bag ... that way I would get both nutrition and fluids.  I still resisted it as I was tired and my belly hurt.  I knew i was losing weight but docs kept an eye on it.  I finally asked the rad doc ... take your pick doc, I get fluids or I get food, which is it gonna be?  (He chose fluids).  I was well overwieght to begin, so he and i each knew losing a few pounds was a situation I could handle.  

I hope this helps.  You have a long way to go.  But then, what is 8 weeks over the course of your whole lifetime?  I know the suck.  I know this is a tough road.  But it DOES END.  Just make sure you kill that cancer and never let it repeat.  Make this the ONLY time you have to go through this.  

Don, Beagledad

Hello Jim,

Six weeks is correct for beginning the Radiotherapy treatments.

I'm Crystal and I had Major surgery..  Major .. They had me go through 3 days of Pre Op Assessment to prepare me for what was to come and check me out physically and mentally.  Everyone knew I would come out of surgery Different than when I went in.  If you wish to look at the extent of my surgery look at my profile, OR, look at my recent entry into the Roll Call thread.  It touches on some of it.  I spent several days and nights in ICU, then weeks in the hospital and then Months of Physical Rehab and nursing care at home.  Major surgery.

Six weeks is standard for beginning Radiotherapy after surgery, because Cancer doesn't stop. Time is of the essence.  After surgery, Radiotherapy is used to quickly destroy the errant malignant cells which are potentially scattered about / released during surgery. They want to kill those fast, so they do not break away and metastasize to other locations.

My boyfriend age  60 died this May due to widely metastasized HNSCC.  Even though his was HPV positive, it still metastasized very very quickly.  He had radiation 3 different times, twice to head/ neck, and a third time to hip bone tumor.  He had immunotherapy twice and a total of 9 Years of chemotherapy treatments. ( he had CLL Leukemia the first 2 years, and the rest of it was advanced Stage IV HNSCC).

I tell you this partly to relate that many of us go through Extreme treatment courses to fight our cancers, with no thought of ever ever giving up.

Cancer is tough to fight... Its not going to leave us without some drastic measures, and at times even that's not enough.

Mine is a Recurrent, non HPV, aggressive tumor which has come back 5 times, plus a new Primary 9 months after my radiotherapy treatments .

One would think my extensive surgeries would be enough to get rid of it all, but Not So.  Jim, I had Subtotal Glossectomy ( only a tiny sliver remained) Tonsillectomy, tracheostomy, Rim Mandibullectomy, ....cut out the Mylohyoid muscle ( under tongue, it controls Floor of mouth/ tongue/ lower jaw), salivary gland both sides ( all the above invaded by my large tumor/ malignant),   Bilateral Neck dissection ( 55'out from right neck, 25 out from left neck). Micro vascular Reconstruction for my free flap.

All that above was one surgery, about 8 hours long with a 5 surgeon team.  I weighed 64 pounds.... I was on my way outta this world, within days without this very Risky intervention. It was my only hope.

They didn't let my family see me for for a few days, 

Anyway, Radiation is Necessary in the weeks following surgery.  For instance, I had Perineural Invasion .  That is when ones cancer cells Hijack ones Nerve Cells. It mainly occurs with very Large tumors. ( my tumor was 6.3 Centimeters. That's large for tumor in head). Surgery cannot eradicate Perineural Invasion ( PNI).  Its Microscopic.Most scans can't even detect it. Its a dangerous condition because it Enables the Cancer to easily move about, on those nerve cells.

There no need to worry about it, unless its written on  your pathology report. It will say PNI present, or positive for PNI.

The ONLY treatment for PNI is radiation !!  Even chemo won't touch it.  Only radiation can kill those cells

Jim, please Trust your oncology team.  They know Your Individual case.   Stick to their timetable for you. That's the best way to give yourself a fighting chance .

I don't knowwhat Stage you are.....  But if you are at a great Cancer Center, put your trust in your Team, and get on with it !!!  Rock this out the best you can, go in with a good attitude, willing to do what it takes to fight and give it your all.

Crystal

Mine was a little different in that I had 2 straight weeks of radiation 2 times per day and chemo for 4+ hours each Monday.  My infusion center had television so I watched TV.  I had a playlist and headphones but my wife sat with me during the chemo so we watched TV, chatted and looked at social media on our phones.  We talked about a vacation to celebrate feeling better at the end of the treatment/recovery so that was enjoyable.  I made friends with another gentleman going through my exact same treatment schedule and we have stayed in contact to this day (we began our journies back in November 2020).  He's 15 years older than me.  My progression was quicker, but I think it was due to age (I was 44 at the time it started) so it just shows we are all in a little different boat.........

My Radiation sessions were short.  Only 4-5 songs worth and the Rad Techs were so awesome to me.  They played the station I wanted and as loud as I wanted.  I liked them to dip my tongue-foam deal in water to keep my lips moist and they did it every time.  They were all so helpful.

Getting fitted for the mask was hard for me.  I was uncomfortable and nervous but got through it.  I asked them to cut the eye holes out because I didn't like it pressing against my eyes when I was done and it made me feel a little more free.  You will get through this.  It will be hard, but it's worth it.  I have been fortunate so far and feel like I'm about 95% normal.  Feel free to reach out to me anytime.