New cancer 2 months after TORS Surgery chemo+radiation

NavDx is a blood test that aids in the detection and monitoring of HPV-driven head and neck cancers. It specifically detects circulating tumor-tissue modified HPV (TTMV®) DNA fragments in the bloodstream. This test is used to assess treatment response, detect recurrences. It is used for head and neck cancer, specifically HPV-driven oropharyngeal squamous cell carcinoma (OPSCC), has demonstrated high accuracy. It boasts a specificity of ≥97% and a sensitivity of ≥89%. Furthermore, it shows a positive predictive value (PPV) of ≥95% for cancer recurrence when a patient has one positive test result. NavDx also demonstrates a high negative predictive value (NPV) of ≥98% when TTMV-HPV DNA remains undetectable, indicating no recurrence. In cases of clinically indeterminate findings, NavDx has shown a 98% accuracy rate in resolving
I copied and pasted the above, but as you can see a very accurate test of HPV cancer activity. My first blood test was positive and The last 4 were negative after my TORS surgery (which showed negative margins). Also, I received my blood test results within a few days. The NavDx test is another tool in the toolbox to help them diagnosis cancer activity. They also use PET /CT scans to look for activity. With the trend towards De-escalation I would think yes this would be overkill. However, It is a call only you can make. Most of the folks who comment here have been through it and It is not pleasant but we are still here. I would demand the NavDx to help guide you in your decision. Lean on your Faith! God Speed

I'm from Pittsburgh PA and the doctors I've dealt with are some of the best in the country in their field. My ENT specializes in head and neck cancer. My situation is a bit different they say. Tors, tonsillectomy and adenoidectomy was to find and remove the primary cancer site. My petscan showed absolutely nothing anywhere. Most cases the cancer is hiding in the base of the tongue or the tonsils or any connective tissue around the area. And since the petscan showed nothing except a small raised area on the base of my tongue, they assumed that was where it all began. So surgery was the answer. I was only supposed to be under anesthesia for a 3 hour surgery. I ended up being under for nearly 6hrs because they were actively slicing bits out of the base of my tongue and testing them in real time as I was under. Since they all kept coming back negative they eventually called it and ended surgery. Not a single sample from anything they took out of my tongue or from the back of my throat, tonsils or adenoids were positive for cancer. Nothing. Their explanation was that either my body eradicated the primary site of cancer cells after it had already spread to my lymph node, or there are still cells hiding somewhere. All in all, my lymph node from my left side of the neck was the only thing they cut out of me that was positive for SCC. What concerns them most is my biopsy had showed my lymph node to be 2.5cm and one month later I had the surgery to remove it. It had grown from 2.5cm to 6.5cm in just that one month. It also was found to have minimal extranodal extension. But this was smaller than 1mm. Minimal concern. They told me since my primary is unknown and the cancer had broken through the protective layer of the lymph node, even though it was very minimal, is why chemo and radiation is strongly recommended. I still am concerned. They're recommending normal dose too. I am going to tell them I want low dose radiation and low dose chemo. Thing is, my body and mind is likely not going to take this well whatsoever because I'm still dealing with post stroke symptoms. My throat and tongue are still actively healing. It's still so sore to swallow and where my lymph node was removed is super painful and sore around the area. Directly over the area and just around the scar I have no feeling or sensation at all. It's like the skin is totally numb and isn't there. I can't feel anything when I touch it. I am seriously scared shitless. These treatments are going to mess me up bad. I'm in no shape physically or mentally to deal with this and I feel lost and alone. No clue what to do. I don't want this cancer to return at all, but I also strongly believe the recommended treatment is overkill for me. These doctors told me as much. They're saying I'm young and fairly healthy so they want to make sure I get the amount of treatment that will make sure this cancer is all eradicated with minimal chances of returning. But at what cost? What cost am I going to pay to make sure this cancer doesn't come back? I don't have the time to get a second opinion either. I have another 2 months of sick days left to use from my job, then I'm on my own. They offer the family medical leave but it's only for 3 months without pay. My employer doesn't offer disability insurance or anything in between. Meaning after FMLA is finished, I effectively lose my job. If I began treatments today, which is 6 weeks for 30 radiation and 7 chemo, that leaves 2 weeks left of getting paid. Then 3 months is FMLA to fully recover enough to go back to work. I am already screwed 😞

Hi,
I am 4 weeks post TORS and double neck dissection with primary unknown as well. My drs are fantastic and said that my body must have healed itself. I had two options. 5 weeks of radiation (95% survival)or come back in 3 months to monitor (85%) I opted for option 2.
To back track…it took me a year and a half to find my SCC sitting in a lymph node on my carotid artery. All the drs Told me I was having a nervous breakdown- until the lump appeared on my neck.
I live in Memphis and the drs here couldn’t tell me where the primary cancer was after removing the tumor and wanted me to do 7 weeks radiation and chemo….that is when I reached out to Mayo for a second opinion.

I got screwed out of my long term disability because my NP didn’t put all of my health issues down. My boss insisted on FMLA but drs kept passing the buck….if somebody would have just listened to me….my fmla ended November 1 and the lump appeared in December.
I don’t regret one minute of making the decision to go to Mayo AZ. And if you can do it….do it!
I got more answers on my first visit than I did in 3 months of visits in my own hometown.
I pray for your peace and to let you know you are not alone. This journey is hard.

Hello,
I have unknown primary too. I had 1 lymph node 2.2 cm removed in June and they wanted to do full radiaiton on my whole orophranyx and nodes on both sides. I got a second opinion and they have me signed up for TORS surgery and modified neck dissection. They did tell me they were going to scrape the base of tongue to biopsy. Is that the same thing they did to you? How are you doing now?

Hi @wfili and welcome. Your story is not unusual. Your situation with work, long term disability and FMLA choices are also sadly common with many of us in this cancer battle. It is unfortunate that there are times in life that we basically have to bet the farm in hope of a second chance at life. We all came into the world naked and we can certainly leave naked. Everything in between is a challenge and lifelong project. I am sorry for your setbacks however now you have a chance again to rebuild.
Your original doctors not believing you is all too common. We know when something isn’t right but often the doctors can’t take the time to figure it out. My favorite saying at that point is “They will figure it out at the autopsy.”
Now of course you are on the other side of this journey which means for the next twenty or so years every little oddity, every pain that lingers, every head cold you can’t easily shake will convince you the cancer has returned. It hasn’t but you will struggle with that thought.
How is your overall recovery coming along?

Hello Friend-
That is the same thing. Exactly!
My voice is coming back a little everyday and besides my shoulders trying to recover from it…I feel good. Not great yet but good. My surgery lasted 6 hours…so that in itself is a reason why you don’t bounce back quickly.
Take the meds - eat the ice cream. And know that we can do this! Sending good vibes your way!

Thanks for the reply. I’m so scared. I keep second guessing my treatment plan but decided this is the best option to try to find primary and maybe have targeted radiation. Are you able to lift your arms to your head? How is your speech?

I was scared too but I promise that you will get through it.
My shoulders are getting better everyday. My speech is fine just horse but voice is coming back as well. Do the surgery before committing to the radiation and chemo. I go back to Mayo Nov 3 for pet and follow up.