Surgery Update & questions

jim108

I had TORS & neck surgery on 8/24/21. They found microscopic tumors at right side of base of tongue, margins not clean. Removed 21 lymph nodes in neck, 1 had cancer and clean margins. Some of the neck muscle was removed as well. SCC, HPV+, Stage 1. Radiation & chemo starts 2nd or 3rd week of october. chemo will be carboplatin & taxol, once a week. cisplatin was ruled out as I already have hearing loss and that can make it worse.

they have asked if i want to particicpate in a blind trial for clonidine (a blood pressure med) stick on tabs for the mouth to deal with the mucositis. i plan to decline -  it's just too much more time involved there and it's al long way home via a ferry that does not have reservations.

they didn't really prepare me for the amount of pain i would have 5-6 days after the surgery. fortunatly it only lasted for about 1 - 1 1/2 weeks and that phase is much better. 

in the hospital, one night, i was on 2-5mg quick release oxy oral every 4 hours with an injection of something for break through pain. upon release they put me on 1 - 5 mg oxy qucik release every 6 hrs. Well that didn't work and they immedialy raised it back up again and were good about refilling when I needed it. Insurance company however was a PIA - would only give 7 days on a new pain Rx which included a change in pain Rx. I've got enough now but have to work out something better for the rad/chemo - they say i'll be be on oxycontin extended release w/ oxycodone quick release (which i'm on now) for breakthrough pain after a few weeks. eating was so painful i didn't eat for a time. i did find the serum concentration vs time chart for the quick release and saw that it peaked in about 1 1/2 hrs for about 2 hrs. That was when I ate.

I asked the nurse at the surgeon's office if what i'm experiencing in mouth pain - swallowing a sip of water was like eating razor blades - if this is what I can expect during raditiaon. She said yes.

There are 3 rad doc's where i'm going. 2 put in a peg for everyone before treatment starts. the 3rd does not and has a wait and see attitude. i have the 3rd. i've restarted the swallowing exercises i was given now that swallowing is manageble. I'm more than willing to have a peg put in if i need it. chemo doc said people lie about how much food & hydration they are taking in to avoid a tube, i won't be doing that. the nurse at the cancer center said if they put one in prior to treatments a person starts with 100% by mouth and 0% by tube and moves over time to say 10% or less by mouth to 90% or more by peg. The concern expressed is that if i become dependant on the peg and stop swallowing than i have to learn how to swallow again. i believe them but it simply sounds very strange.

so i'm wondering if i should just ask for the tube now or wait to see if i need i. given the preview of the mouth pain after surgery there is no way i could do 7 weeks like that - the amount of pain meds to cover that would be enourmous. more than what i would want and i think they would be willing to give me. i know they can always put in the peg if i need it but it seems to me that if get to the point where i need it than my body is already weakened and having a surgery is more risky also regarding infections etc. Also the hospitals here are very full - due to delta so even getting a bed for 1 night may be an issue now or later.... they tell me about 50% of their patients are on peg. so that seems like pretty good odds in terms of geting by without one.

so here are my questions: any advice particulary based on 1st or 2nd hand experience:

1. get a peg before surgery or wait until i may need one? 

2. how is it "relearning to swallow"?

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).

4. recs for putting something on the neck scar to make it more flexible, etc. i don't care how it looks particulary...

thanks in advance, 

jim

ps and if anything else comes to mind - feel free to add it!

motorcycleguy

jim,

I had NPC (NasoPharyngeal Cancer) - so some of this may be applicable ... some not.

1. The peg tube is the feeding tube as I recall. I personally got one, but never used it. However, I was a rare case. My guess is that your Oncologist will recommend one - and he knows better...

2. If one can continue to ingest anything by mouth, even if it's liquid (water, milk, smoothies, protein drinks) - you will be better off and may not have to relearn. But - it's different for everyone.

3. I had my neck surgery 3 years ago, and it felt really weird (like a chunk of skin was replaced by horsehide). Just now, I stopped to check - and yes, it still feels numbish .. but it doesn't bother me, anymore.

4. I'm not sure what you're referring to, exactly - but certainly I recommend that you keep your neck covered in the lotion that your Oncologist recommends (or maybe even gives you)!

I won't lie to you, treatment can be very challenging. If you have a helper (wife, girlfriend, buddy, sibling) it certainly helps. A positive attitude is an absolute blessing - if one is lucky enough to have one.

Remember - all of the people on here are living proof that the process is doable, though - and that there's a lot of great life out there - after treatment.

You've come to the right place, buddy!!

MG

Remington25

My experience

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.

wbcgaruss

Jim I Am

Thankful for you that you got through your surgery and it was successful without complications.
In Sept. 2019 I went for surgery on one lymph node to be removed but this one had the cancer outside the node and was not encapsulated anymore.
I too had muscle removed and a jugular vein and the cancer was wrapped around my carotid artery which luckily they could manage to peel off and remove.
My surgery ended in complications though with a damaged chyle valve and that was later remedied but complications continued and I finally went to a hospital rehab after 36 days in the hospital and spent another 10 days there before going home.
My first cancer throat cancer was discovered in late 2012 and I started treatment in Jan. of 2013.
A five day 24 hour a day chemo treatment to reduce the size of my tumor.
After several weeks of recovery and making sure my blood count was up it was repeated.
Then I started standard treatment of 35 radiation treatments with chemo beginning, middle, and at the end.
Now before all this started my doctors would not begin treatment till I had a feeding tube put in.
I am glad I had it and they put it in ahead.
It doesn't take a lot of cancer treatment to start feeling really lousy and the last thing I would have needed was to go for a procedure like a feeding tube installation.
Also for H&N patients, the radiation is around the head and neck area so the throat is getting sore pretty quickly and I think some chemo can give you sore areas and your throat is getting inflamed and swollen which decreases its size so the whole area is very sore and inflamed and this is the exact area they have to run an endoscopy down through your throat to put in a feeding tube.
I think this would irritate an already inflamed area.

Description. Gastrostomy feeding tube (G-tube) insertion is done in part using a procedure called endoscopy. This is a way of looking inside the body using a flexible tube with a small camera on the end of it. The endoscope is inserted through the mouth and down the esophagus, which leads to the stomach.

Video of PEG Tube Installation  https://www.youtube.com/watch?v=atQGkK0zW2s

My opinion is get one ahead before treatment starts, you will have time then to get used to it. Cut the elastic band off an old pair of underwear it makes the perfect cheap holder to keep the tube secure and out of the way.
Why force yourself through a regimen of painful eating and swallowing like razor blades you are already going through enough.
As far as swallowing I had a speech therapist assigned to me and she gave me swallowing exercises to do at least several times daily and although I was completely dependent for several months on the tube for food, meds, and hydration I never lost my swallowing ability.
MD Anderson "Use it or Lose it"  https://www.youtube.com/watch?v=Qaip9BMnO0c

Swallowing Exercises | For Patients with Head and Neck Cancer Starting Radiation Treatment  https://www.youtube.com/watch?v=aZTXHwmOK6Q

Your docs should have set you up with a speech therapist, if not request one.
They will be your help and guide in all things H&N like swallowing, speech, vocal cords, swallowing test, and any problems you may encounter in your treatment related to their field.
They may even want you to get a swallowing test as a baseline test before your treatment starts.  https://www.youtube.com/watch?v=dRvYL_TAtKI

As far as nerves from the operation I don't know if any recover.
I think you lose feeling because some are severed.
My left side of my face is pretty numb in the shaving area of my face (cheek), my ear and a portion of my neck.
This Saturday is 2 years since I checked into the hospital for the operation so I would say it's permanent in my case.
I figger some minor changes but they saved my life.

I hope everything goes as best as it can for you.
Stay strong, Trust in God, Pray a Lot, You will Make It And NEGU (Never Ever Give Up)
Wishing You The Best-Take Care-God Bless-Russ

 

 

 

johnsonbl

I had TORS but didn't have chemo/rad...

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

 

jim108

Thanks so very much everyone.

Thanks so very much everyone. I've read your posts several times and really appreciate the support and advice. Knowing there are others - you - that have gone through this makes this process just a little more manageable.

i'm still recovering from the mouth (this part is well healed) and neck surgery. the neck nerves & muscles are waking up and are letting me know they were cut. Pain meds help - mostly. I try not to take too much and find myself on ocassion not taking enough. Tuesday will be 4 weeks since the sugery. I have 2 more weeks and then the next phase starts:

10/4:

8am: ChemTeach (instructions to myself and my wife about all how chemo works). I see signs in bathrooms at the cancer center to flush twice. I'm sure they will explain why - I wonder about toliets in public restrooms with no lids or the urinals. they sent me 2 different nausea meds in advance.

9am: Meeting with Rad doc for informed consent - he's going to tell me all the bad things that can happen from radiaiton. Get a letter that allows me to get a third Moderna shot.

1030am: build the mask and make the computer simulation

130pm: have a pic line put in.

10/5: get 3rd covid shot

10/6 & 10/12: they have added these 2 appt on my schedule but haven't told me about them: "Central Line Care" "Oncology Infusion Center" - is this the start of the chemo?? I was under the impression that the chemo and radiation would concurent. I'll call tommorrow. I'd appreciate a heads up - would rather not find out about this by "accident".

10/6: flu shot.

I'm working on music playlists for the radiation sessions and for the chemo sessions. I just want it to be loud particualry for the radiation. I wonder if there is someway they can have the arm move in beat to the music I play? Curious if you would share your music - did you use the same everytime or diffent everytime or rotate between your top 10? There is music I would naturally want to sing to - but I think I shouln't do that...I have a really bad singing voice...LOL 

thanks again.

BeagleDad

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

jim108

BeagleDad said:

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

Don, thanks very much for

Don, thanks very much for your detailed notes and your support.

 

Jim

jim108

some more questions:

some more questions:

1. for those of you who had rad or rad/chemo after neck surgery - how much time passed before they made the mask / started rad from your surgery date? how did it go - in terms of making the mask and wearing the mask and getting rad in the area of the surgery? i'm wondering if the radidation will interfere with the muscle / tissue healing.

my surgery was in Seattle and my cancer treatment is in Bellingham. the rad nurse wanted me to come in several days after my surgery to have the mask made. i wondered if that would be too soon - pain wise? healing from surgery wise? she thougth it would be ok. i emailed my surgeron and the PA said no problem. fortuanly my rad doc called the surgeon directly and was told to wait 6 weeks. (surgery nurse has told me it takes 6 - 8 weeks for the neck to heal. they did take some of the neck muscle out).

i shaved for the first time yesterday - electric razor and yikes - it's still pretty sore - but managable. however i'm due to get the mask made in 9 days and am concerned that they will be putting pressure against my neck and there will be some heat i think. i do have some pain meds and will be taking them with me - just in case....

2. sleeping; it seems the worst pain is in during the night / and in the morning from pressue of the pillow on my neck where i had my surgery. i try to sleep on the other side - with mixed results; seems i toss and turn and end up switching sides or end up on my back (which is not helpful due with my sleep apena - i use a cpap machine). i've tried lowering my pillows and also making a slight incline all in the attempt to keep pressure off the surgical area. any suggestions? i'm assuming it's just going to get worse after rad/chemo starts...yes they will give me pain meds althought the insurance company is a PIA - but that's another problem...

3. has anyone had any experience with benzydamine for treating mucositis? it's not avaliable in the US but it is in Canada where one verison is called: Phairxia. https://www.mskcc.org/cancer-care/patient-education/benzydamine-01

thanks.

jim

 

ps i have pure aloa on order, received the aquaphor yesterday and getting the coconut oil soon.

 

wbcgaruss

jim108 said:

some more questions:

some more questions:

1. for those of you who had rad or rad/chemo after neck surgery - how much time passed before they made the mask / started rad from your surgery date? how did it go - in terms of making the mask and wearing the mask and getting rad in the area of the surgery? i'm wondering if the radidation will interfere with the muscle / tissue healing.

my surgery was in Seattle and my cancer treatment is in Bellingham. the rad nurse wanted me to come in several days after my surgery to have the mask made. i wondered if that would be too soon - pain wise? healing from surgery wise? she thougth it would be ok. i emailed my surgeron and the PA said no problem. fortuanly my rad doc called the surgeon directly and was told to wait 6 weeks. (surgery nurse has told me it takes 6 - 8 weeks for the neck to heal. they did take some of the neck muscle out).

i shaved for the first time yesterday - electric razor and yikes - it's still pretty sore - but managable. however i'm due to get the mask made in 9 days and am concerned that they will be putting pressure against my neck and there will be some heat i think. i do have some pain meds and will be taking them with me - just in case....

2. sleeping; it seems the worst pain is in during the night / and in the morning from pressue of the pillow on my neck where i had my surgery. i try to sleep on the other side - with mixed results; seems i toss and turn and end up switching sides or end up on my back (which is not helpful due with my sleep apena - i use a cpap machine). i've tried lowering my pillows and also making a slight incline all in the attempt to keep pressure off the surgical area. any suggestions? i'm assuming it's just going to get worse after rad/chemo starts...yes they will give me pain meds althought the insurance company is a PIA - but that's another problem...

3. has anyone had any experience with benzydamine for treating mucositis? it's not avaliable in the US but it is in Canada where one verison is called: Phairxia. https://www.mskcc.org/cancer-care/patient-education/benzydamine-01

thanks.

jim

 

ps i have pure aloa on order, received the aquaphor yesterday and getting the coconut oil soon.

 

Jim I Am Not Sure

Exactly when I had my follow-up rads after my operation but I spent 36 days in the hospital and 10 days in a rehab hospital so there are 46 days right there.
I healed quickly and had no soreness or pain by the time I started rads which I will estimate was in November or December of 2020 which would make it about 3 to 3 1/2 months after my operation and it would probably have been sooner if not for my complications.
My guess would be not how long to wait but to get them as soon as you can and are able.
Even if you have some discomfort I would ask your docs as to what is the longest you should wait and get them for sure in that time period even if you have to use meds or whatever to get through it.
The idea of the follow-up rads is to mop up any errant cancer cells that may still be left there.
They can get clear margins but can't see the cancer on a cell level.
So I think the danger is waiting too long and an errant cancer cell could grow and turn into another tumor.
You want to mop this up while it is small.
They actually may have gotten it all but there is no way of knowing because a scan cannot detect one cell of cancer.
So this is to finalize and be sure you are truly cancer-free again.
As far as treating mucositis there is a thread discussing Mucinex put through the feeding tube but it applies to your question because they are using it and some are using it regularly to control the mucous.
Mucinex is an easy to get over the counter here in the USA.
Here is the link to the thread you can read all about it  https://csn.cancer.org/node/323914
I have used it myself and it really works well.
I have a bottle on hand in my cabinet all the time.
I use the Mucinex Fast-Max Cold, Flu & Sore Throat but there are many varieties of it the company makes.

 

 

 

Wishing you the best-Take care-God Bless-Russ

LitlCJdoll

Six weeks is correct

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

 

 

 

rush1958

Everybody is different

I had a DX’d SCC base of tongue January 12, 2010.   tonsillectomy and biopsy 3/12/10, Neck Dissection, 2 of 41 lymph nodes removed left side were positive on 4/3/10. T1N3M0. Completed 33 radiation treatments on 6/23/10, 3 rounds of chemo (Cisplatin) completed on 6/14/10)

1. get a peg before surgery or wait until i may need one? I got the PEG prior. Knowing what I know now, I wouldn't have gotten it until needed. I never used it, my throat never got sore and I could swallow just fine for the entire time. But that's me.

2. how is it "relearning to swallow"? The only swallowing issues I had were just after surgery. They resolved within about week to ten days.

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).For the most part, the nerves resolved in about four to six months for me, but I still have a small numb spot on my neck. I'm like you.... I don't ever really think about it and it doesn't bother me.

4. recs for putting something on the neck scar to make it more flexible, etc. i don't care how it looks particulary... I used the same thing they recommended for the radiation. A clear, unscented alovera gel. I think they sold them at Walgreens for two tubes for five bucks. I only used that much for the entire treatment.

Rush

 

Remington25

My experience with Chemo/Rad

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.