Tonsil Cancer from HPV

I’ve had the same tonsil cancer and lymph node dissection. I have my follow up NavDx test today. Am hoping for the same outcome as you. I also experience dry mouth and am struggling with liquids. My hope is to avoid radiation too. So happy that you posted this information. I didn’t know what comes after a negative NavDx test!!

Hope yours is negative ! I get another one in October- I think I get one every 3 months for a year - I think I am going to talk w my dr about doing another scan when I get the blood test in Oct just to be safe!!

I did not have tonsillar SCC, but started in my ear and surgery involved partial parotidectomy and neck dissection. I battle dry mouth constantly/ Zylitol spray and melting tablets and lozenges are a savior. I have used Biotene mouthwash since the beginning but now must use the melts every night. They really work. Keeping your hydration up is also important. My PET scan still shows changes from surgery 11 years after surgery. They are quite nonspecific. Mayo has been great with followup all these years but anxiety with scans is pretty constant. I have metastatic SCC but has been controlled via surgery and Immunotherapy so far. Good luck to you both.

Thank you for your reply- that’s good info on the PET scan- the “ change” word scared me! And I agree- thus far Mayo has been amazing
I pray you keep being able to control your cancer and enjoy your life!

Hi @sapphire1158. I would (and have) trusted the Mayo staff with my life. If they feel they got all the cancer out then that is really good news for you to only be left with surgical recovery. Not everyone gets radiation, chemo, or both in addition to surgery. Sometimes no surgery but chemo and/or radiation is the solution.
The PET scans in my experience often show scar tissue which is indistinguishable to the shadow of cancer. It is expected to see the scar on the scan and it apparently establishes a baseline for follow-up scan(s). I am not a doctor but have addressed this issue time and again not only with my own scans but with many others as well. When PET scans a performed a few weeks or even three months out after surgery, it should be expected to see scar tissue. A keen doctor or diagnostic radiologist can tell the difference between cancer and scar image. If they question an image results they may ask for another scan in three or six months looking for change in the image.
The dry mouth, the taste buds messed up, this is part of it as you heal from the surgery. Radiation messes with that for years but it seems surgery alone isn't as hard on the taste senses. The salivary glands may have been bruised or damaged as a result of surgery. That might take a while to resolve. You may want to record your thoughts about that for follow-up appointments with your doctor(s). Some like myself have had salivary duct(s) rerouted as we healed. In my case my nose runs when I eat, twenty-two years now. A friend of mine had a duct leach out from the side of her neck just below the left mandible. She will place a napkin there when she eats. Most however recover nicely without issue.
This is all scary stuff. It is all out of the normal of life, surreal if you will. Courage. It's a life changer this cancer stuff. But for most as well it is put behind us with a new appreciation for life itself. Good healing.

Thank you so much for this response!! It was very helpful and informative!
I will write down all my issues to discuss w my surgeon / oncologist at my sept follow up
Again thank you for your response

@slmoore0626 curious how you are doing? I think I'm pretty much in the same boat would love to hear how you are progressing. I'm just 7 weeks from surgery... First Navdx test/ draw tomorrow....

I’m about 6 months out. Tastebuds are considerably better. My speech was effected somewhat from the TORS surgery but has also improved. Still limited saliva but that’s improved too! Good luck and keep improving!

I have to admit a bit thrown off by no chemo radiation....I thought that was customary so really looking forward to my follow ups. Reading above I'm assuming all good and you never had to do radiation?

Actually I did 20 rounds of radiation and two of chemo. I was on a 2x day radiation for two weeks and one chemo each week. I went into it hoping for no chemo or radiation but I had a tonsillectomy in May which found a tumor and then TORS in July to remove any residual. Also a lymph node dissection of 18 nodes with two metastatic. Stage 2. Fortunately the cancer was not outside the two lymph nodes My surgeon and oncologist encouraged that protocol because there is a ten percent false positive or false negative in the NavDX. I was at a very good teaching/research hospital in NC. I will be forever grateful to them!