Negative NavDx Pre Treatment HPV16 Squamous Cell Cervical Lymph Node

Thanks so much. I am in the hospital tonight and doing fine.

The Dr decided on a much less invasive surgery than I thought I was having. Today I had the right side tonsil removed and biopsies of the back of the tongue. No TORS. Looking for a primary that we may never find. Results in 5 days to see where this path leads.
It sounds like Joe is doing great with you by his side! Keep up the good news.

Tonsil and tongue were both negative for cancer cells. A month later I had a neck dissection with 18 lymph nodes sent to pathology. Again negative. I have a CT with contrast scheduled Dec 8 & a PET scan Feb 10. I did not do any chemo or radiation. If anything shows up on these scans then it will be off to radiation. What have you done since August?

@maryannecrawford
I am in a similar situation. I was dx with left SCC peritonsilar cancer. Unfortunately, my PCP let it go for months before he pulled the trigger and ordered a ct scan. It was found as stage 3. I went through 7 weeks of weekly chemo and daily radiation. I was miserable recovering but just had my 3 month PET scan follow up. I have a SUV score of 9 and still have significant pain in the left jaw, teeth tonsils area and it radiates to my left ear. I am at AU as well. My NAVDx is negative right now which makes my chemo doc think I am cancer free. I read data suggests an SUV score of 9 is almost always cancer. I have no second opinion just yet but will see a surgeon this week. Do you have any advice? Should I go to Mayo?

I was dx with left peritonsilar scc. NAVDx said positive HPV16. I completed 7 weeks of weekly chemo and daily radiation. I still have significant left jaw teeth and tonsil pain radiating to my left ear. Its intense! My current NAVDx is negative and my chemo doc is leaning on it saying he thinks I am cancer free. My PET shows SUV score of 9. Im no oncologist but I am reading an SUV score on PET is almost always cancer reoccurrence or continued cancer. Because of truisms, I am not a surgery candidate. However, my chemo doc is sending me back to ENT one surgery for another evaluation. Does anybody have any tips to help me navigate this situation? I am 70lbs lighter than I was because of all the chemo and pain. Im unsure if I have much more weight to lose, but maybe if they offer surgery it's the way to go?

I am so sorry I just saw this post as I only check this on Sundays. There most important thing is your timeline. We just made it on ours and that is stressful. I would suggest you call Mayo to see if you qualify and research your options. Only you can decide what is best for you as concerns getting the second opinion at Mayo. Our decision was easy because we are originally from Minnesota so we could stay with family between visits and surgery. We also had the means and insurance to do so. In the end they concurred with our AU team so we returned to AU for treatment. I wish you the best on your journey. Again sorry I just saw this today. I will try to check more frequently.

@judiroe Hello, Not sure if you are still following. But did they find primary pathology?

@ja963 Hello, They have not found the primary. In June they found a an aggressive spot in left lung. Lung biopsy confirmed SCC but it is not the primary. It is either a new cancer or from the original and there is no way to know. We had just sold our house near Augusta and were living in a small 23 foot RV house hunting in Savannah!! Long story short AU doctor got us a great team down here in Savannah at St. Joseph Candler Cancer Center. He did 5 days of radiation every other day just this past 2 weeks he tolerated it really well. He wasn’t sick or anything. We lucked out because the house we bought is only 5 minutes down the road! We are impressed the team down here and so far everything is in one building. Now we wait for 3 months to see if any cancer turns up. If so he will do immunotherapy. I remain optimistic but Joe is very realistic. I hope this helps and I sincerely hope you get the answers you need.

I have not had treatment but was diagnosed last year with P16 left tounsular Squamous head neck cancer.
I had Keytruda immunology , worked for a while and then became in effective . Looking for healthy options , I have learned that an MRI with non radio active contrast , weather local or whole body is a healthier option versus ionizing radiation , Natera blood biopsy is another healthier option versus removing tissue from the tumor outer protective cover. I also have had a genomic tumor profile , and found I lack tumor suppressors and will research PTEN and other therapies for reducing tumor size , if this interests you , tell you Dr , it is not standard care, and you need to self advocate these options. I have also used Galleri blood testing to see if cancer DNA maybe present in other areas. Anyone with tumor suppressor/ reducers please advise

I mean I have not had chemo or radiation treatment to date, just Keytruda immunology treatment, I know there are other options , just need to research more