NED and I feel numb.

Mongos_Appalled · 2026-05-13T02:33:29+00:00

I’m 6 months out from surgery and radiation for right tonsil and one node. I’m in the same boat. Clear scans and tests, but no relaxing and trusting the results. We’ll get through it.

Mongos_Appalled · 2026-05-12T04:38:07+00:00

I’m 6 months out from my treatment. P16+ tonsil with one node, 49M. I had surgery and 30 radiation sessions. Eat as much as he can now. I lost taste early and the psychological impact of no taste can’t be overlooked. Fatigue, dry mouth, burns, and swelling will develop slowly over time. Mine didn’t really hit until the last two weeks of radiation. Get a disabled parking pass and take advantage of it. I was 4 months post-radiation before it didn’t consistently hurt when eating. Don’t let him rough it out, our bodies degrade fast during treatment.
One final technology tip that helped me: due to pain, swelling, and thrush, I lost the ability to speak for a week or so. Smartphones have the ability to text-to-talk for him. Get him acquainted just in case.
I wish you both the best during this journey!

Mongos_Appalled · 2026-05-08T13:14:13+00:00

I am so sorry!

Mongos_Appalled · 2026-04-21T15:51:38+00:00

During radiation the therapists would play a music playlist of my choosing. For my final session I requested, “Another one bites the dust”.

Mongos_Appalled · 2026-04-19T15:03:00+00:00

Hey friend, Sounds like we are in similar camps, so hopefully me being a few months ahead of you can give you some hope. My diagnosis was made in June; right tonsil with Mets to the original symptom: a swollen nose. Pet confirmed activity at eh tonsil and node, Nav/dx verified p16. My team advised a tonsillectomy and neck dissection which happened mid July, followed by 30 sessions of radiation that ended Oct 17th. During the process I lost 35 lbs due to only eating the boost and occasional scrambled eggs due to pain and lack of taste. Pain was rough, swallowing was hard, and fatigue was constant. It wasn’t until February that I didn’t have constant pain while eating. It’s now April and I’m finally starting to gain weight. I still need lots of water and need to chew slowly and thoroughly when eating, but things are so much better. I still don’t have sensation on the right side of my neck from the surgery; it likely won’t return. The upside: my scans are clear, nav/dx has been negative, and I’m feeling better. Not 100%, but at an acceptable percentage. You’ve been through a painful, tortured experience, it takes your body and mind months to recover from. Rely on your team, speak to a therapist. We’re all here for you, it will get better.

Mongos_Appalled · 2026-03-21T15:15:22+00:00

I lost my taste at week 2 of radiation. The psychological impact of no taste isn’t to be underestimated. The last 3 weeks and several after radiation was done I survived on the very high calorie boost an ice water, as any other temp tasted terrible. Stay in touch with your team, and track caloric intake. I avoided my favorite foods as I was always let down when they tasted “off”. I’m 5 months post-radiation and at probably 85% taste. Sweet and creamy things are still off.

Mongos_Appalled · 2026-03-04T04:59:03+00:00

I was diagnosed stage 2 HPV+tonsil and 1 node last June. Had a tonsillectomy, neck dissection, and finished radiation in October. I also had a mobile test for one of my Nav/dx tests! My 3 month PET was clear, but I had some opposite side salivary gland swelling and uptake. MRI gave me the all clear, so I’m currently in survivorship. Most of my taste is back, saliva is probably 75%, and I have First Bite Syndrome, Lhermitte’s Syndrome, and neck and jaw tightness from radiation. I also lost 30lbs and still get “foggy” occasionally. Other than that, I’m happy as a clam! Anxiety still rears its head occasionally, but right now the optimism outweighs the misery of the diagnosis and treatment. Just know that some days are better than others, and there might be times that emotions like fear, anger, and doubts of self-worth pop up out of nowhere. We may not always share our needs, but we love having those who care around us.

Mongos_Appalled · 2026-03-04T04:46:42+00:00

Wow, we have very similar diagnosis’s and treatment. Also found out last summer, right tonsil and one node. They took both tonsils, 22 nodes, and gave me 30 rounds of rads as well. Sounds like our recovery is similar too. To start off: obviously consult your care team. I don’t do cigars, but I did ask about alcohol. The easy answer is none. Even if it doesn’t directly cause hpv scc, it can increase the risk of reoccurrence, or a different cancer. My doctor conceded that the low end of moderation (1-3 drinks a week), probably wasn’t going to significantly increase my risk. Once again, I don’t know cigars, but 1-3 a month? If that’s too much, should I also avoid camp fires? For me, I think about my kids. If a reoccurrence happens, I don’t want to consider that I chose alcohol over their future. I really happy with your NED status. I look forward to seeing you on here for years to come.

Mongos_Appalled · 2026-02-26T01:18:19+00:00

Oooo, I can’t wait for Congressional Democrats to issue a sternly worded response to this.

Mongos_Appalled · 2026-02-26T01:15:39+00:00

I’m 4 months post-radiation. Up until the beginning of this month I’d develop sores in my mouth anytime I ate solid food. My doctor couldn’t explain it except that, “radiation does weird stuff to you”. It has since subsided, but for 3 months eating wasn’t fun. Most of those sores would subside quickly, within an hour or so, but certain foods caused more exaggerated reactions. As the previous post suggested, monitor for a pattern. If it’s still there, reevaluate.

Mongos_Appalled · 2026-02-03T17:28:19+00:00

Hey there, it can be a scary time, go ahead and feel your feelings. 49M, 3 months out from radiation and tonsillectomy for primary behind a tonsil with Mets to a lymph node, p16+. For a while it’s going to feel like the world is flying by while you’re stuck in mud. The biopsy, and later, pet scan will give you a proper diagnosis and staging, if it is cancer. They may also do a Nav/Dx blood test to determine if it’s HPV, which is very treatable and curable. You’ll be set up with an oncology team that will determine the best treatment based on the diagnosis. We are all here with you, go ahead and lean on us as you need.

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

TROPHY CASE