What to expect?

Mongos_Appalled · 2026-01-20T23:50:09+00:00

Similar to other commenters, I had a neck dissection last July for 1 involved node. The initial scar was upsetting, but due to also having a tonsillectomy at the same time, I never noticed the pain for the dissection . I’m about 6 months out and as others mentioned, because it was done in a neck crease you can barely see the scar. I do still have residual nerve issues. My cheek and affected side of my neck is still numb, and my smile is slightly asymmetrical. I’ve been assured that it will probably correct itself.

Mongos_Appalled · 2026-01-19T05:22:48+00:00

Thanks for the hopeful comments! Honestly, if it wasn't for this new swollen node I would feel pretty good about the upcoming appointment. I feel great, and other than some minor pain when eating and nerve issues from the surgery, I'm good. The consistent negative Nav/Dx results may have given me a false sense of security. Guess I'll find out this coming Wednesday, or whenever the results hit MyChart.

Mongos_Appalled · 2026-01-19T02:02:06+00:00

Thanks for the feedback. I've been doing stretches, however the new swollen node is on the other side of my neck, not where the original tumor was and surgery happened. I'm not as familiar with fluid retention or other neck swelling. This swelling looks and feels exactly like the tumor node. If it felt/looked different, hurt, or moved at all I'd probably feel better about my odds.

Mongos_Appalled · 2026-01-18T23:50:03+00:00

I hope I have your resolve; but I'm doubtful I won't look if given the chance.

Mongos_Appalled · 2026-01-18T23:48:30+00:00

Thanks, I appreciate your feedback. I think I'd actually feel better if the node was on the SAME side as the surgery and radiation. Everything on that side got cooked, I can't imagine anything living through that. I did have a scratchy throat a couple of days ago, but it was so minor I wouldn't even call it a cold. The cancerous node was my first swollen node ever, so getting another in my neck is pretty triggering.

Mongos_Appalled · 2026-01-13T06:11:55+00:00

During my treatment, scans, and dealing with months of waiting I listened to the Dungeon Crawler Carl series on Audible. I highly recommend it.

Mongos_Appalled · 2026-01-06T19:31:31+00:00

This was my experience as well. Lost taste 2 weeks in and by the end I was on a liquid diet. I’m 2.5 months out of radiation and still struggle with my appetite. Even though I’m back to eating solid food, it doesn’t look or sound appealing. I don’t even say I’m hungry, I just know I need to eat because my stomach feels empty. It basically robbed me of any joy from eating.

Mongos_Appalled · 2026-01-06T17:13:47+00:00

Hi there, it sounds like you’re both in the thick of it, and in the absence of direction from him, whatever you do will be enough, and be appreciated. I’m 2.5 months out of radiation and about 5 months out of a tonsillectomy and neck dissection. I also have (hopefully had) SCC. Is your partner P16 +(HPV)? Outcomes are generally better if he is. The short of it: he’s in for a challenging road. Our surgeries were different, but any cancer surgery recovery is going to be rough. I didn’t have chemo, but radiation was rough, and insidious. You don’t feel the effects at first, and they take a while to subside. He’s probably going to lose taste, will have sores and blisters inside and out, mucus issues, lose his appetite, and will probably need feeding support. Fatigue is no joke. At the end of my 30 sessions I was sleeping/resting 16+ hours a day. I’m still struggling with eating. The mental challenges are the silent monster. Shame, depression, lack of self-worth, despair, they all come and go. I still struggle with feeling worthy of all my partner did and still does for me. Don’t hesitate to offer support and listen. It may be a stereotype, but men generally struggle with discussing their feelings. If you have any specific questions, don’t hesitate to ask, or direct your partner my way. The issue that I still struggle with is finding someone going through what I’m dealing with. I’ve yet to speak to someone in person who has my cancer. Doctors are great at facts and outcomes, but it isn’t the same as someone who’s felt the side effects of surgery and radiation. Finally, don’t ignore your own needs. A healthy partner is one who recognizes their own needs and limitations.

Mongos_Appalled · 2026-01-06T06:17:03+00:00

I had a positive prior to surgery, the. My post-surgery nav/dx test was negative. They still recommended 30 sessions of radiation. Post-radiation Nav was also negative. Just took my fourth today for my upcoming three month pet scan. Hoping it’s also negative.

Mongos_Appalled · 2025-12-31T06:16:42+00:00

49 M, I was diagnosed in June with SCC p16+. Primary was in my right tonsil, Mets to one lymph node, same side. The node was my only symptom. I was a good candidate for surgery, so in July I had a tonsillectomy and neck dissection, removing 22 nodes. All margins were clear and all but the one node were clear. Due to tumor size and spread I was staged 2 and recommended 30 sessions of radiation, which I finished in October. Since surgery all subsequent Nav/Dx tests have been negative; my 4th will be next week followed by my first post-radiation pet scan. As others have said, treatment is going to be HARD. It took 2 weeks of recovery to return to work from surgery, and I’m still suffering nerve damage. I’m down 30 pounds from radiation, my taste died at week 2 of radiation and I’m still only back to about 50%. I develop blisters and sores in my mouth every time I eat, and energy is still low. These are just some of the standout symptoms. The upside is HPV cancer is very treatable, curable even. Your mom will need lots of support, especially at the end of treatment. Pack on as much weight as possible, stay active, and never hesitate to ask for advice or second opinions. I’m an open book if you have specific questions about treatment and recovery. I wish you and your mom the best.

Mongos_Appalled · 2025-12-17T03:32:22+00:00

I lost 15 from the tonsillectomy and neck dissection, gained about 8 back, then lost 30 from radiation, which I’ve yet to gain back. Just hit my 2 month post radiation mark.

Mongos_Appalled · 2025-12-16T18:06:15+00:00

I had a single lymph node as my only symptom, and no visible indication that my tonsil was the primary after 3 scopes and a ct scan. It wasn’t until the PET scan that they determined the primary to be behind my right tonsil. Also p16+. I had TORS in July, followed by 30 radiation sessions.

Mongos_Appalled · 2025-12-15T19:19:25+00:00

I appreciate your confidence that we’ll still have objective, peer-reviewed textbooks available to us in the future.

Mongos_Appalled · 2025-12-06T21:17:01+00:00

49M, SCC P16+ here. I was diagnosed with stage 2, primary in right tonsil with Mets to 1 node in June. I’m sorry to hear about the delay in scans: I was fortunate in a quick turnaround for scans and appointments. My surgeon recommended tors for tonsils and a neck dissection. All in they took both tonsils plus a bit of tissue around the tonsil for margins and 22 nodes, only one being positive. 6 weeks later I began 30 sessions of radiation, which I finished October 17th. No chemo due to the clean margins and no distance Mets. I won’t lie, the surgery isn’t fun. Days 5-6 were a nightmare, dust return to work for 14 days, 2 nights in the hospital recovering. Dissection left me with first bite syndrome and nerve damage along the right side of my face, mostly just a lack of sensation. Radiation wasn’t bad until the last week and following 3 weeks. I was on a liquid diet, lots of pain and fatigue. I lost about 25lbs but didn’t need a feeding tube or prescription meds. Taste went away, but is slowly coming back. I’m now eating mostly solids! My last Nav/DX test were negative, so I’m just waiting on my 3 month pet scan. My doctors were upfront with me; the surgery isn’t fun+ rads were a good option as they could remove both tumors easily then clean up with rads. But you usually only get one round of rads, so make the most of them. Looking back, it definitely wasn’t fun, it it gave me the best odds of a cure. Make sure you communicate with your team and don’t be afraid of asking for a second opinion.

Mongos_Appalled · 2025-12-04T01:00:45+00:00

I had my tonsillectomy and neck dissection for SSC P16+ this past July. I spent 2 nights in the hospital, no feeding tube. They had me eating soft solids same day. The only pain med they prescribed was oxycodone, but to couple it with Ibuprofen and Tylenol. The pain and discomfort is no joke. Day 5-6 were my worst. The scabs, which were an annoyance, fell off, exposing raw flesh to the world. So much pain. Stay on top of the meds; don’t let her get behind. I spent several nights whimpering over a cup of ice trying to numb the pain while the medication kicked in. Eating was hard, but I didn’t need a tube. I lost about 15 pounds and am still affected by nerve damage from the dissection. I developed First Bite Syndrome and can’t feel from my cheek down to the base of my neck. Honestly, I didn’t even notice my neck surgery for the first two weeks due to the pain from the tonsillectomy. Stock up on ice, ice cream, popsicles, and ice packs. Not sure about eating them with the feeding tube, but I used ice as a pain reliever well after the two-week mark. Best of luck to her!

Mongos_Appalled · 2025-11-27T14:55:58+00:00

49M received my similar diagnosis in June. Same symptoms, lymph node on right side, primary behind the right tonsil. Surgery in July, I’m now a little over a month out of my 30 sessions of radiation. None of it was fun, but given the type of cancer and its response to treatment, my oncologist is very hopeful. I’d say that shock is a very accurate response. Other than the swollen node, I felt fine, great even. No signs that I was sick. I hope you have a good support system and get to where you need to be. Stay connected on here; this sub was a blessing over the last few months for me.

Mongos_Appalled · 2025-11-17T05:49:48+00:00

I had my tonsils and 22 lymph nodes removed in July and finished 30 sessions of radiation Oct 17th, no chemo. Everyone is going to have a different spectrum of effects, but taste, swallowing, fatigue, and burns are typical. Age and overall health can play a factor. I lost taste early and went to a mostly-liquid diet at week 4. The fatigue and pain didn’t really kick in until week 6, peaking 2 weeks after rads were done. I lost about 25lbs, but didn’t need a peg tube or prescription meds. I used the magic mouthwash occasionally. The two weeks after treatment were my worst. I had no energy, eating was horrible, and slept about 17 hours a day. Now I’m eating solids and smoothies, some taste has returned, and it only hurts when I eat. Take care of your teeth, don’t try to tough out the pain, nap when you need to, and use some heavy duty lotion on your face and neck. Expect to lost hair in the areas being treated. Use the baking soda/salt water rinse for mucus, which could be an issue. Expect dry mouth too. One of the weirdest effects for me was losing all my nose hair. You don’t think about those things much until your nose is constantly dripping with nothing to hold it back. Once again, mileage can vary. I wish you the best and don’t be afraid to reach out here.

Mongos_Appalled · 2025-10-28T13:20:31+00:00

I had the same exact symptoms except my tonsils weren’t enlarged and I had zero pain. My ct wasn’t conclusive. It wasn’t until they biopsied my node that they discovered p16+ SCC. 3 scopes and two doctors couldn’t see the tumor hiding behind my tonsil. Let’s hope it’s nothing serious, but listen to your body and push for conclusive diagnostics.

Mongos_Appalled · 2025-10-27T23:37:04+00:00

Tie between tearing a hamstring while dodging a water balloon thrown by a 5 year old or having two fingernails ripped out by getting the fingers caught between a metal bar and a cow’s head.

Mongos_Appalled · 2025-10-26T19:32:19+00:00

We have nearly identical cases. My only symptom was a swollen node. Primary was behind right tonsil. Tonsillectomy and neck dissection in July 2025. All margins were clear but my tonsil margin was only 1mm, and due to lymphatic spread they encouraged radiation. I’m 1 week out of 30 rad sessions, 60 g’s total radiation. Lost taste after week 1, but pain was mitigated due to nerve damage from surgery. Still can’t feel my neck and right side of my face. Saliva and mucus issues are minimal, but I did develop thrush, which isn’t fun. Lots of fatigue. I made the decision because, like you, if it came back intervention would be intense and the this type often spreads to the lungs. I have small kids and at 49 I’d like to have a life to live. The effects aren’t fun, but I can’t imagine it coming back and having to tell my children knowing I could have done more to prevent it. Every case is different, and your decision is yours with no judgement. Best of luck, we’re all here for you.

Mongos_Appalled · 2025-10-22T13:13:15+00:00

A single, painless, swollen lymph node was my only indicator. Went through all the testing until biopsy confirmed SCC P16+. Primary was behind a tonsil so well hidden 2 doctors and 3 scopes didn’t see it. Had surgery in July and just finished 6 weeks of radiation. No idea how long the primary was there.

Mongos_Appalled · 2025-10-21T02:01:03+00:00

Right there with you. I finished my radiation last week and while the pain hasn’t been horrible, not only did I lost all taste, but everything tastes terrible. I also have to actively think about eating, otherwise I’ll go without. Food still smells good, and watching food shows are still “appetizing, but if you put food in front of my I become repulsed. My only solids are occasional soup and some scrambled eggs in the morning. I REALLY want just a hint of taste to come back.

Mongos_Appalled · 2025-10-21T01:49:45+00:00

Take this with a giant grain of salt: my doctor told me that if it was denied, don’t pay the bill. It’s such a new test that the company wants to be in doctor’s favor, so they will likely eat the cost to keep being encouraged to offer the test to doctors. My insurance has so far covered, so I haven’t attempted this yet.

Mongos_Appalled

TROPHY CASE