Recently diagnosed with cancer on left tonsil with swollen lymph nodes

I had the same diagnosis. Two surgeries ( first for biopsies and tonsillectomy and the second for residual cancer using TORS and 18 lymph nodes removed, two being metastatic). I underwent a shortened schedule of radiation and chemo. I had the NAVDx test before and after surgery and it went from 3212 to zero. It was explained to me that the test has a 10% false negative/positive and radiation and chemo were needed because of my pathology (lymph-nodes). From what I have been reading on this site for the last year you will be receiving standard care. I hope you begin to heal enough to move forward with treatment. It’s going to be uncomfortable for sure but necessary. Good luck to you.

I had the exact same type of cancer and the exact same treatments. My radiology oncologist finally referred me to a pain mgt specialist. My pain started in my ear and radiated down my neck. Even after being done with radiation since April I am on a 3 day fentanyl patch and 5 mg oxycodone pill. Scream, yell and kick your feet until you get some help and a referral. You have to be your own advocate! I actually wanted to stop the meds now and the Dr said no. He fears the pain may still be there and the meds are masking it. I know how much pain you’re in. I would lay in bed and cry. A heating pad on your neck might help a little, but PLEASE make them send to a pain med Dr.

I also had cancer in left tonsil and had both tonsils removed plus 43 lymph nodes taken out. Only one lymph node had cancer and it stayed intact of node. After much research and talking to others I opp out of radiation. Is it the right move well time will tell but I do feel ok. My biggest problem is constant ear aches and pressure in ears. Good luck in your journey.

Hello @laconiaborn54 and welcome to Mayo Connect. I see that you had surgery. How long ago was your diagnosis and surgery? How are you feeling now? Has your doctor given you any reason or help for the fullness and pain in your ears or is that typical?

On Connect, there is another discussion on cancer of the Tonsils that you might find interesting. Here is the link,
https://connect.mayoclinic.org/discussion/tonsil-cancer-of-husband/
After surgery, was there any other treatment such as chemotherapy?

Diagnosis was back in June of this year surgery in Oct. Throat feels ok but ears still a bother for me. Doctors say ears look fine but it's still a bother. Next doctor appointment is January 11th. I opp out of radiation for time being so appointments are once a month with surgeon with pet-scans

@laconiaborn54

You might consider mentioning the ear symptoms to your doctor at your next appointment and ask if this a normal response to the surgery. Also, inquire if there is anything that can be done to relieve the symptoms.

Did you have the ear symptoms prior to your surgery?

Yep...I relate very well with all your experiences. I had a small tumor on the base of my tongue. Mayo, Dr. Price, did the surgery and also took my right tonsil. Pulled 22 lymph nodes with only one being positive. Was given the option of doing nothing further, but for a bit more insurance, I opted for 2 weeks of low intensity radiation with one low dose chemo per week. I felt absolutely fine through nearly the entire treatment. Then, my 2nd to the last day of radiation, I started to experience the effects. Went back home to start my recovery and I have realized that there are absolutely no words in the English language that adequately describe what I was about to go through for a good 2.5 months. In fact, there were 3 or 4 days that I absolutely couldn't imagine anyone being so sick and surviving! I am now about 4.5 months from my last treatment, and am feeling as close to "normal" as I've felt. I've gained some weight back and am gaining strength and endurance. And, YES...seek out and get what you need to relieve your pain. Mayo has been stellar for me in this regard. Just went through my 3-month check-up and I am completely cancer free!
If I've learned anything throughout this ordeal it's been patience....and the importance of self advocacy.
Merry Christmas, all!

Thank you for sharing this positive news. I’m freaking out right now and waiting for results of my tonsil biopsy.

Hi @rickntodd and welcome. A lot of progress has been made in recent years as to the treatments and recovery for this sort of cancer. That being said, you are still in for a battle which won't end when the treatments end unfortunately. You can expect the unexpected. You can expect to continue downhill for a few days/week after treatments end before a very long recovery begins. But please don't dis-pare. As is already evident to you here there are many who have taken this path and come out with a smile, myself included. Courage.
Good to hear you got a PEG for food and meds. Now just take this one day at a time. When do you start treatments?

Like I have reported to other people that have gone through this I was diagnosed with HPV throat cancer with a tumor, the size of a small marble in the base of my tongue between my voice box and my tonsils and two raise cancerous lymph nodes. last October 2022. I went to the Mayo Clinic in Rochester Minnesota 11/07/22-12/23/22 I went through 35 sessions of proton radiation And seven doses of cystplatin chemotherapy, I was scared and overwhelmed, but I have to say it was the best decision I have ever made, but it was a long haul. I had some side effects like losing my taste buds for almost 10 months and having a hard time swallowing for about eight months. I lived on chocolate boost and soft food for quite a while but I have to be tested multiple times this year every six weeks here in Nevada and every four months in Rochester Minnesota. I am cancer free I’ve gotten 80% of my taste buds back and I can swallow now once in a while I have a raspy voice I drink a lot of water.. It’s a nice feeling that I have healed and recovered please keep the faith for me, prayer has helped and of course the doctors And nurses at the Mayo clinic in Rochester in the oncology and radiation department are wonderful I highly recommended them !!!