Just Diagnosed with Tonsil Cancer - How to Treat?

Welcome to the group. I just found it a week ago.

I was diagnosed with hpv tonsil cancer in Jan 2024 after visits to my primary care doctor, dentist, oral surgeon and finally my ENT. That diagnosis was via biopsy, a Petscan and NavDX blood test that is specific to hpv cancer. It is a specific form of tonsil cancer caused by exposure sometime in my life to someone who had hpv. I never smoked. The Petscan showed some areas of concern in my left lung; the tonsil was on my right side. As a result I had surgery on that lung and 6 nodes were removed, none of which showed cancer after biopsy. That was actually great news even though I now have several scars on my left side!

My treatment plan was 35 radiation and 6 chemo sessions. No surgery was done because that would delay treatment. My blood went out of spec after 2 chemo sessions and they discontinued it. I did 29 radiation sessions but couldn't take the side-effects and stopped. I had severe mucus to the extent I couldn't sleep at night. I choked and had difficulty clearing the mucus to the extent I thought I might suffocate.

Prior to treatment I had had a feeding tube placed in my stomach and was on a liquid diet for about three months. I had swallowing therapy and learned to massage my neck to reduce lipidemia. Both were invaluable!

In June of 2024 a Petscan showed potential cancer in the node adjacent to the tonsil. My ENT recommended operating and taking out that node and 5 more below it. It's an operation that is in an area that involves muscles, nerves and arteries and potential negative outcomes. I requested a biopsy of the node and 5 samples came back negative. I was scheduled for the next Petscan and NavDX in a month and decided to wait those results before deciding what to do. Both came back negative and I sought a 2nd opinion from another ENT. He reviewed my file and recommended not to operate . I stayed with him. Since then I've had an additional Petscan and two NavDx tests, all negative.

I gradually transitioned back to solid food with some difficulty and had the feeding tube removed. At that point I had lost my saliva, taste and went from 178 to 143 lbs. I drank a lot of 1ot of water and still do. My taste has somewhat returned. Saliva not so much. My weight is back to 163.

I tried acupuncture in hopes of getting my saliva back. After 9 sessions over a 2 month time period there was no improvement. I just learned from this forum that another participant had success 10 years ago with electro-acupuncture. I'm going to speak with a local acupuncturist that uses that form this week and will post my experience.

That's my story to date! Good luck and please feel free to contact me any time.

I am in my 7th week of radiation and chemo( cisplatin). The treatment is really rough but as a physician I did a lot of research of the literature and if your squamous cell is HPV positive, this is the way to go with greater than 85 % chance of cure. Have them get a HPV DNA level( this is done by Naveris and is called NAVDX) before you start. If HPV DNA goes to zero after treatment you are in a great place.

Hi John
I finished 7 wks radiation and 7 rounds of chemo in January 2024. My right tonsil cancer (hpv 16) was only at a stage 1, but had metastasized to a lymph node in my neck, so surgery was not an option. I had a feeding tube installed before treatment, and had it removed by June; I had started the long process of eating by mouth maybe a month or so out from treatment- late removal was mostly due to scheduling...I also had to wean off painkillers which were administered thru the tube. I've been cancer free almost a year and a half now. I do have chronic lymphedema in my neck which I treat daily with a FlexTouch compression suit. Pretty hassle free. Treatment is tough, but I found my team (oncologist, radiologist, tech team, lab team, palliative care, speech and physical therapists) to be super and majorly supportive. I trusted them to get me through the process and they didn't let me down...neither did my husband and family and friends. One thing to remember: be patient with your body and mind thru recovery. It takes many months to recoup your strength. The mental game can be challenging, but once you survive cancer treatment and the disease is gone you can pretty much do anything!

Diagnosed with tongue cancer in 2024. Had 22 lympnodes removed and a glossectomy to rebuild my tongue. Followed by 30 radiation treatments. I had nasalpharangeal cancer in 2021 and had 39 radiations and 8 chemo treatments. The radiation has been brutal on my body. I have severe radiation fibrosis. It has prevented me from swallowing much. All I can do is a few sips of water at a time. Currently it is inflamed and I'm on steroids to see if the swelling goes down a bit. Needless to say I'm still on a feeding tube. It's a long road to recovery. If anyone has any more suggestions to help with my fibrosis let me know. I'm doing speech therapy and physical therapy and have lymphatic drainage 3 times a week.

Hello all,

Firstly I am male 54 from Canada, in 2016 I was diagnosed with stage 4b tonsil cancer that had spread to multiple lymph nodes primary tumour was 2.5”. I enrolled in a study and was chosen to do ORATOR ( robot ) surgery and a neck dissection, originally they thought I would avoid radiation & chemotherapy. Unfortunately it was too advanced and I underwent 6 chemotherapy sessions and 30 radiation sessions. I am cancer free so far, I won’t lie it has not been easy but any day you wake up and are still alive is a gift. I wish everyone good health and if anyone has questions or just needs to talk I am a great listener

@lollie did you have a tonsillectomy?

@mazkat - I did not have a tonsillectomy; just 7 wks of radiation and 7 rounds of chemo...at my most recent visit to the ENT he performed the usual 3 month check with the camera up my nose & down my throat. He walked me through the video after the procedure to show me my throat- healthy, pink tissue with just a teeny bit of inflammation near where my tonsils had been...the body is truly amazing! He recommended my next visit be 6 months out instead of 3- YAHOOOO!!!!

@niml Hi .. I had treatment for nasopharyngeal cancer in 2006 - 35 rounds of radiation, and 5-6 doses of chemo. Had my feeding tube removed a few months after completion of treatment.
I thought I was doing 'ok' until mid 2020 - diagnosed with dysarthria and dysphagia and also severe neck fibrosis.
With swallowing - I have pretty mashed up food, and avoid eating out in public - due to issues with swallowing, and having to spit or cough up food that tends to get stuck in my throat.
With my severe neck fibrosis - I do neck and jaw exercises daily at home, and also go for therapy sessions every other week - hoping that this will help.
Keep well !!

I don't think a visual nasal and throat exam is sufficient followup for tonsil cancer. Quite often that cancer has moved to the lymph glands. Palpating the glands in your throat may reveal swelling.

Prior to my treatment for hpv tonsil cancer my radiologist ordered a NavDx blood test and PETscan. Both were positive. Right after treatment the tests were repeated and both showed very low levels of cancer. The treatment was still working at that time. 3 months later they were repeated again. Results were negative. 6 months later they were still negative. My last round is coming up next month. If results are still negative they will be discontinued unless there are new symptoms....hopefully not! I like and feel very comfortable that my cancer is gone.

@longboat1 I had one PET Scan about 12 weeks after finishing treatment and since then just visual nasal throat checkups. My oncologist hasn't mentioned anything about NovDx blood test. I didn't know it existed before coming on here. I'm in Ireland and will start looking into this now! Thank you for your advice