Squamous cell carcinoma (SCC) P16+

I too had TORS tongue surgery and Lymph node removal one side of the neck. The first 10 days are by far the toughest. I also went about 10 days before a BM. I would add taking daily laxative should help as long as you are on pain meds. Eating enough right now is paramount. Walk some if you can. You will be surprised how you will progress within a month. God is great and is walking with you on this journey.

Dear Dave,
I am really glad to hear you are doing so well. Yes there seems to be changes that may last a while. But God is good. He has a plan and an outcome for each of us. I am so very glad you can trust Him in all this. I myself am 10 days out from surgery. It's been pretty rough managing the pain and trying to get enough food in to avoid the tube. But God is faithful, and I am eating better and the pain is becoming more manageable. Im gaining strength and had a couple BM's finally. I'm not looking forward to Radiation but I know God goes before me in all things. He will hold me fast.

I am two and a half months post radiation. Daily improvements but still have trouble with saliva production and tongue irritation. Hot biotene and magic mouthwash.
In Canada, has anyone any other remedies for saliva production so that I can swallow chewed food.

Said a prayer for you that all works out for you. I prayed the Psalms a lot and leaned on Psalm 138. I love the part that the Lord will perfect that which concerns me. I write all those down and give them to Him.
It has been 5 and 1/2 months from my last treatment. I am doing very well. Gaining strength, eating normally and exercising. I am able to work a normal schedule. What's different? I have lost a lot of weight. The radiation took out fat as well as muscle mass. I just did not have an appetite and the pain in my throat would only tolerate liquids. Boost 530 is good. I am in no hurry to gain a lot of weight. I also sleep lighter than I used to. While i am eating a normal diet, i still do not enjoy eating like I did before treatment. I know i am rambling a bit, I just want to say I am getting stronger every day, am cancer free and want to help anybody i can with my experience.

I’ve had my surgery for removal of a portion tongue a both sides lymph nodes. Stayed in the hospital 5 days due to trying to manage high BP. Been home since Saturday. Pretty rough pain and meds schedule. Now I’m needing a phlegm sucking machine. Anyone know about these?

Midwiz,
Same thing here. Out of nowhere the diagnosis on tongue. Kind of takes a whack out of you.
I met my family and discussed. I am a control freak when it comes to my health etc however I decided to let the experts have the control.
I listened and asked lots of questions. The team if experts were great.
I am 2 months from last radiation. Still some trouble eating and keeping weight on but daily improvements.
Listen to your team and they will guide you. You are not the first or the last.
I find this sight gives lots of great insight too.
I wish you well and thoughts with you.

Your case sounds identical to mine. No symptoms and them bam, you got cancer. I began my journey in March of 23, it is now October, and I am well. 100%? I would say 85 to 90. THe Mayo Drs and Nurses were wonderful and will help you through it. For me the keys were:
1. Have faith in God. He was present day and night to help me put this life in perspective and give me so much peace and hope along the way. He still does.
2. Every day will have its moments both challenging good: so take them as they come.
3. Eating and drinking will be a challenge. Boost 530 will be your best friend as well as lots of water. I did not get a feeding tube and in hindsight that is an option. Talk to your Radiologist.
4. Take lots of walks. Try to keep your strength up.
5. Know the month after your last treatment will be hardest but gradually after that you will begin to feel much better.
6. There is light at the end of this tunnel, stay in touch with others who are going through and who have been through this. You can receive and give help along the way.

I’ll be glad to share any detail from my journey.

@buffalowy, I moved your posts about SCC P16+ to this existing discussion:
- Squamous cell carcinoma (SCC) P16+ https://connect.mayoclinic.org/discussion/p16-squamous-cell-carcinoma/

I did this so that, in addition to @hrhwilliam, you can connect with other members living with Squamous cell carcinoma (SCC) P16+ who are walking this path only weeks or months ahead of you. Members like @fwpoole @jonesja @midiwiz @davehutsell @dennymayo @thebgyn123 @westand731 @buzzltyr57 and more.

@buffalowy, have you learned more about diagnosis in the meantime and plans for treatment? What questions might you have for others who have been there?

@johnfinaz, wow! What an inspiring story you have. You give good advice about getting more than one opinion. On the same note, I was told my tonsils needed to be removed, although they had atrophied away due to age. That doctor had already performed a Nasal-Endoscopy (NE) and told me I had "arthritis in my neck!" After the ear/throat pain progressed, the doctor resorted to scheduling a tonsillectomy. That inner voice, or "feeling" if you will, said "no way." I call that the voice of our creator. Soon after, a Cat Scan was assigned. Believe it or not, they STILL did not see (?) the obvious tumor in my throat! The Cat Scan reading proclaimed "Eagles Syndrome," which is when the Styloid bones grow into the nerves in the jaw area. Once again, that voice told me "No." Finally, I went to an Indiana University ENT and had a third NE performed. This great ENT saw the tumor in my throat (Pyriform Sinus) right-off-the-bat. So, there were three opinions sought, not two. Instead of asking "Did you get a second opinion" the question should be "Did you get a third opinion?" I finished radiation in 2020, and so far, so good. Still, it required a lot of vocal exercises and swallow studies to regain my voice and eating/swallowing ability. After contracting Covid twice. I now have paralyzed vocal cords. Whether the radiation, covid, or a combination of both caused the paralysis, is anyone's guess. A tracheotomy was done two years ago, which allows excess mucus to be easily discharged. The vocal cords being paralyzed, blocked the mucus from escaping...This caused numerous lung ailments, plus a gross inability to breathe, so the tracheotomy is very welcome. If anyone reading this is undergoing radiation, or will be undergoing radiation, please research red-light therapy. A small wand runs about $20.00 and is proven very helpful with radiated tissue healing/protection. @johnfinaz, you are an inspiration!