52 year old Male, Diagnosed 11/23/2022 with HPV+ p16 p40 cancer
My follow up appointment went well. I’m scheduled for TORS January 10th for radical left tonsillectomy and a bit of the back of tongue removed and was told to plan on a NG feeding tube for up to 2 weeks. If all goes well based on pathology I’m a candidate for a low dose radiation trial and potentially no chemo. The original cancerous lymph node had less than 1mm extracapsular extension. I’m also in a trail for NavDx blood test that detects HPV in the bloodstream. I took the test as soon as I was diagnosed. If my post surgery blood test numbers shows no circulating disease I can forego chemo. However that’s something I need to really think about. There is also a de-escalation chemo regimen I may want to consider. I don’t want to do the bare minimum and have a reoccurrence so I’m reading up on studies.
I feel well enough to start therapy exercises for my neck tightness and mouth nerve deficits As many on this site have said it’s worse in the morning and end of day but I’m able to loosen it up and minimize the tightness. Thanking God for the positive prognosis and glad I have some time to heal before TORS and enjoy the holidays .
‘Thank you all for the wisdom and encouragement.
Smitty, considering all things as far as cancer treatment your situation looks very positive. I agree with your second part you don't to do the minimum for sure you want to go in with the idea to use what's necessary to do this once and done. As my radiologist told me during my first cancer, this is a one-shot deal. Things may not still work out perfectly at times but you do your best for the best outcome possible NED (No Evidence Of Disease) one-shot deal.
My best wishes to you and your family for a Blessed Christmas.
Take care, God Bless-Russ0
Third and hopefully last surgery
My TORS was moved up to Monday next week. I gained back 7 lbs over the holidays and am ready for this next step. The lingering effects from the neck dissection are annoying, especially the pain when eating. I’m sure the pain meds when I’m in the hospital will help and the surgery pain will trump what I have now. I read several stories on here about TORS recovery and I’ll add mine soon. I’m blessed with my wife as my caregiver and I’m supposed to have a home care nurse come out and teach her the tube feeding procedure so we are as ready as we can be.0
Smitty thanks for the update. Congrats on the weight gain. Your medical team should be able to come up with a pain management plan top cover any pain you have. Sometimes not to eliminate it but make it very bearable till you get healed from the cause of it. You are so Blessed to have a loving caring wife to help in this process and are set up with a nurse for home care. You will find the feeding tube easy to use. Most people just take care of their own once you get familiar. Prayers your way.
Take Care God Bless-Russ0
Recovering from TORS in the hospital
My TORS surgery went well this morning and I’m recovering in the hospital. Uncomfortable but not in too much pain at least at the moment. This is definitely a one day at a time or even a one hour at a time thing. Took me a bit to get mentally straight about the NG tube discomfort and not being able to swallow my secretions. Sitting straight up and down in my comfy room chair instead of the hospital bed helps a lot. Taking pain meds when they are offered and on an IV steroid to control swelling. Praying the pathology comes back that they have good margins and got the whole tumor. Nurses and support staff have been great. Hopefully I dont wear out my welcome after a few days here. I asked about ice chips for my dry mouth but I’m not allowed yet. Praying for progress each day and getting discharged by the end of the week.0
Smitty, so glad everything went as well as possible. I am glad the pain is tolerable. Yes the NG tube is unpleasant for sure especially at first. I know what you mean I had one temporarily in 2019. It takes a little then it is not so bothersome anymore. I'm right with you on the chair thing also during my stay in the hospital in 2019 I felt better on the hospital recliner chair than in bed much of the time. Do whatever feels best for you. I am glad the nurses are taking good care of you I have found the nurses absolutely golden and they just want to get you comfortable and recovered as soon as possible. Smitty got you covered on my prayer list for clear margins, quick healing and recovery, and going home soon. Praying for your wife also because I know the spouse is under stress at this time and cancer affects the whole family.
Smitty-Wishing You the Best
Take Care God Bless-Russ0
Thanks Russ I needed that encouragement. This is tough but doable. Had a rough first half of the day but getting myself mentally in the right place. Mind over matter as they say.0
edited January 11 #32
Post TORS day two - pain meds
I started with 5mg of Oxycodone and some Tylenol every four hours same as my post neck dissection protocol. The nurses said I should consider 10mg to stay ahead of the pain and Docs said same on their morning rounds. I don’t like Opioids but took their advice and glad I did. I was able to sleep a few hours finally and will keep up with this regimen. I was told the pain will get worse around day five. Now is the time to accept all pain meds and heal. I’m on a ton of other meds as well - steroids, Nuerotin. Antibiotics etc all to help me heal. The swallowing specialist will be visiting tomorrow to evaluate swallowing function and give me some exercises to do. Im having difficulty swallowing the thick mucus as it gets stuck halfway it seems and I can’t cough to bring it up. Overall I’m gradually improving and now up to three tube feedings a day. Four more days in the hospital to go.0
Smitty, I'm with ya on this. During my cancer treatments as you are finding out, they give you many different medications beyond my imagination and I had chemo also plus extra chemo. It amazes me what the human body can stand in the way of these things. I would take what they recommend and they are correct you want to stay ahead of the pain and be on a regular schedule so that the pain doesn't get ahead of you. As you realized, for now, it helps you be comfortable and helps you get some sleep and that is very important in cancer treatment of any kind nutrition and rest. Also, anything else they recommend? They already know the worst pain is around day 5 and they have treated many many patients with cancer and very similar cases so they are experts at this with a lot of hands-on experience. It sounds like you are in the hands of a good care team, thank God for that, and be glad for these caring people. Don't worry about the meds pain or otherwise for now it is just temporary to get you through this and then they will be done. You are in a good place, these folks are on the ball getting you set up with a swallowing specialist actually they are termed "Speech Therapists" they watch over you with all things head and neck like swallowing, breathing, lymph nodes, and swelling if it occurs, etc. As for the mucous for now, you may want to ask for a suction machine, ask them if they feel it is applicable to your situation. Your feedings are going well and you feel good enough to say you are improving that is great, so glad for you. Four more days and you will be surprised how quickly they go by you will be going home, but for now, you are in the best place you can be.
Wishing You the Best
Take care, God Bless-Russ0
edited January 12 #34
Fourth day post TORS
Today was an eventful day. A nutritionist visited and went over with me and the Wife how to set up and run tube feedings at home. Then the speech therapist worked with me on starting to swallow. All I can manage at this point is liquids that have been thickened to a nectar. Definitely a chore and painful going down but great to have a taste of apple n my mouth. Thin liquid is too much of a risk for aspiration and apple sauce too thick and got stuck so it will be a slow process just as others had warned me. Pain is also peaking as I was told but staying ahead of it with meds. I was an hour late with a dose today as I wanted to avoid reflux with my feeding and pain spiked quickly. I get off the IV fluids tonight as I’m able to get in 440ml of “food” up my nose now at each feeding so no longer stuck with the IV pole for my laps around the unit and using bathroom. So far so good but my patience will be tested I’m sure with the swallowing progress. Staying positive as others have done this before me and hopefully me journaling this will help those coming after me. It’s all worth the final outcome if no more cancer.0
Had a scare with aspirating apple juice. It was delivered for dinner in a container that said pre- thickened but I did not realize it needed another packet to thicken it up even more. I took a small spoonful and it immediately aspirated. I did not want to cough and cause a bleed so basically chocked for 20 seconds. Took away some confidence I was building up but also reminded me to slow down and I can’t speed up the timeline.0
wow.. I just finished reading all of the hospital posts. My surgery was only a little over a year ago… it is amazing how much of the experience I have almost completely forgotten. Reading back these daily events… it seems like all of that happened to me now that I think about it. Kind of funny now… when the swallow therapist came in the first morning and tried to get me to swallow saltines. Hello!! She came in with yogurt the second morning.. and it just sat in the back of my mouth because there was so much swelling. I couldn’t swallow anything, except a little water, for the entire time in the hospital. I also tried to go easy on the pain meds at first.. and really regretted it by day two. The surgeon/ENT gave me a reality check by saying that the TORS procedures done are some the most painful surgeries they do. So, I started getting ahead of the pain as well. I remember being so out of it on Oxy or something stronger on day 3… I was sitting up in bed, holding my phone while talking to someone.. and I kept going in and out of consciousness.
Hang in there!!!0
Thanks for sharing that. I’m having the same issue with my phone. Start typing a text and fall asleep. Good to know it will get better with time. So thankful for this site and being able to hear other’s experiences.0
Thank you for taking the time to provide great information as you are in the hospital and recovering. Not exactly an easy task, but will be very beneficial to future Head and Neck patients in the future.
Take care Marine, Semper Fi, My Best to You and Everyone Here0
edited January 14 #40
I know these details will fade as the mind wants to forget bad experiences so wanted to get it documented. I’m ready to try to step down pain meds to 5mg Oxy and 650 mg Tylenol every 4 hours tonight. I’m still receiving gabbapentin 100mg per 8 hours and that’s what my discharge instructions for pain management are as well. I swear I’m hallucinating off the higher dose and don’t like it. Charge nurse assured me if things go south I can take the additional 5mg Oxy.0
Smitty, I am glad you are on the road to recovery. There are a lot of details here and updates that could be helpful to someone in the future. I have been following along the way.
The oxy that I was prescribed after TORS was too much for me. From the mind racing to the sleeplessness of the meds. I eventually went to strait Tylenol as the oxy was not friendly to me in that way.
I did not have the feeding tube going in as I had some extra lbs. As I healed I ate eggs, basically lived off of KFC mashed potatoes & gravy for a little while. I also ate pudding. Just throwing this out there for you.
Take it day by day week by week and you will see it through. Your off to a good start. Take care.0
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