New cancer 2 months after TORS Surgery chemo+radiation

Two things during my cancer journey that helped me keep track of everything from diagnosis/treatment options to my medications or pain meds was one I recorded every appointment with every person I was in contact with.

One, I bought a Philips VoiceTracer DVT1160 ($42 on Amazon) to record providers so I could always go back and play so nothing is missed.

Second, for meds I used this attached pdf to keep track.

Hope this helps ease some of the frustration.

I love the med log sheet and will definitely use it!! But I thought you could not record in a doctor's office??

Never had any of my doctors or others and I have seen many over the years not allow it and some actually were glad so important information is not missed. I have done this in 2008 with my first tonsil cancer and more recently this year for my tongue cancer.

Best of luck with the journey.

Your Doctors should have already provided the pain med scripts as well as the anti nausea med
I was told to use the anti nausea med as a last resort because it can really bind you up

I'm in such a messed up boat. Had a stroke March 15th and during all its testing is when they found my left neck lymph node was pretty big. After getting out of the hospital I was sent for a biopsy of the lymph node, my tonsils and base of tongue. Only the lymph node came back positive for hpv cancer. They still opted to do tors surgery because of a raised area on the base of my tongue. Nothing was positive other than my lymph node. Removed tonsils, adenoids, and tor surgery on the base of tongue. It's been nearly 3 weeks since and I'm still in pain daily and alot worse when swallowing. Today was my oncologist appointment and they recommended radiation and chemo. Before today I have been told by mostly all medical staff I wouldn't need either and that tors would remove it all. I'm devastated. I've only just turned 40 in May and am ok health wise. But I am beyond scared. I watched my mother wither away from radiation and chemo. And again, I also went through this severe throat pain twice already. It's so bad. Now they say radiation will be like a bad sunburn inside my throat. Idk if I can take this man. Been in tears all day.

Hello . My case was very close to yours. I was diagnosed with SCC HPV 16+cancer of base of tongue March 2023. Stage 3. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I opted out of any Chemo treatment. Today I am back to 95% with no signs of cancer.
There has been a real movement for De-escalation Radiation in the last couple of years especially if the cancer is caught early. I am a little confused . Did your surgery provide Clear margins showing no cancer remaining during TORS surgery? Have you had a NavDx blood test? Is this a large hospital which deals with a large amount of Head and Neck cancers? Can you get a second opinion from another Oncologist in the area?

Reading what you have been through by doctors digging for gold simply makes my blood boil. So many thoughts I have about this butchery and for what! My opinion: find a real cancer clinic and start over. Don't let them radiate and Chemo you until you are well healed. Amazing they didn't remove your entire head in this search of theirs.

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 😞

I replied in general also, but yes. Lymph node was 6.5cm which has grew from 2.5cm in one month. This is partially why the doctors are so concerned. That and it had minimal extranodal extension present. Less than 1mm. Not a major concern they said but still very telling. I've never heard of a NavDx blood test. What does that do? But yes there's no visible cancer left anywhere. They are doing all of this and recommending radiation with chemo over the concern of microscopic cancer cells left behind and/or still present in wherever the primary site is. Basically they're trying to cover all bases so cancer cells don't spread and come back worse than it was. Which I understand. But chemo and radiation is overkill man. Way

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