Squamous cell carcinoma (SCC) P16+
the biopsy stated P16 positive squamous cell carcinoma with associated necrosis...
Things are flying by me so fast, yet I read the article from Mayo saying less is more. Also waiting on a call back as I want to explore the options that I don't even know what is about to happen, I have never ever had any issues and out of no where here this lump is.
I should state also I've never ever had surgery, been in the hospital etc. but also I am very careful as I totally freak out (potential heart attack levels of freaking out) with needles and anything medical. I can't even stand to be in a hospital room. So when things are flying at me I have zero time to try to wrap my head around any of this.
Sorry for the long wind.... but any info to start to process this would help. I'm supposed to do a PET scan when I get back from vacation. trust me when I say that took me 2 weeks to get my head to where I MIGHT get through it.
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Hi @buffalowy. Welcome to our group. HPV16+ or P16+ is usually a better diagnosis than "unknown" in that in the last twenty years we are finding the treatment can be a little less severe than the standard treatment for squamous cell carcinoma. That being said you are in for a bit of a challenge for the next few months and healing will go on for some time after that is usually the case.
I find it unusual that a PET scan is being run before you have surgery and treatment. Perhaps they are looking for other areas to examine as well because it was in your lymphatic system. At least you are getting to this early rather than most who get the diagnosis after months or years of suffering other issues caused by SCC.
If you have questions as you get started on your treatment please don't hesitate to ask. Were you told why they wanted to do a PET scan already?
Agree with Buzzltyr57 in the post above. The stage will be determine by tumor size, How many lymph nodes involved, If tumor is " midline" location in the mouth/ tongue they may want to treat both sides of the neck. The PET scan is excellent for showing where the cancer is as it will almost glow. Alot of good threads on this website. Good luck to you my friend. It is a very winnable but tough battle.
<p>Diagnosed with SCC P16+ on sep 18, biopsy of left neck lymph node on 23 sep confirmed ct scan results. Now waiting on results from PET scan from last Thursday. I don’t understand how I got here without symptoms any advice?</p>
Hi Buffalowy, Really not enough information to give any advice. I'm assuming it was a cancer that was confirmed by CT and biopsy? The PET is simply for determining if your cancer has spread to anywhere in the rest of your body. It's a precaution and a test to see. The stage will be determined by all the data gathered by all the tests. Your Doctor will tell you of any stage he feels the data dictates. Hard to wait, I know, but your PET results should clear some questions up for you.
Diagnosed sep 18 P16+ SCC
Still trying to understand how. Have had CT and biopsy confirmed biopsy was from the lymph node on left side of neck. (Does this mean stage 4?) had PET last Thursday afternoon waiting on result. Am I waiting to long? Any advise?
I too just wanted it gone ASAP so I opted for the surgery. I feel my TORS surgery cured the cancer with the negative margins. Also one of my lymph nodes was wrapped around the jugular so they removed my jugular. I am not sure if they can with the carotid artery.
The Path report on the Nodes was more unclear so they suggested radiation and short course of Chemo . I agreed to the 30 Radiation treatments on the tumor bed and Nodes but I declined the Chemo as I understand it only offered 3% better outcome. Of course they will recommend what they are fairly confident will cure your cancer or a "standard protocol" I suppose that is their job but I agree the radiation side effects can be brutal and life long. If I had it to do over I probably still would do the radiation just to be sure they got it all. Easy to miss a few cells and then the process starts over. Check into the NavDX blood test for HPV cancer. It is about 95% accurate from what I understand but still not widely accepted . My last NavDx blood test was 0 or non detectable.
Thanks , Dave. I will definitely ask those questions. I want to ask the one about the node being close to the carotid too. Thank you for your kind encouragement! Jesus truly is ever present and never leaves us.
blessings
I understand your view and doubts. I went to Mayo Clinic in Jacksonville. I feel they gave me the best treatment for recovery. Surgery was an option except they were not comfortable taking my lymph node out as it was right on my carotid artery.
One thing you might ask re:radiation. Can they do proton radiation in your case vs photon radiation. Proton is much more precise and the side effects, I have heard are much less than photon. Think hammer vs needle.
Best wishes on your treatment and I am glad you have faith in Christ Jesus. He goes through it with you.
Thank you for your story. I will check into the Proton vs Photon issue. I'm finding myself wondering if the "cleanup" is necessary or just revenue stream? What if surgery with clear margins gets it all? What happens if there is no Rad and no Chemo? No damage? no burns? no tooth destruction? no dead taste buds? no fatigue? Seriously! What are the risks? 1 in 100? 1 in 1000? What are we talking here? I'm going to need to ask this question of the Doctors.
Sorry for the rant but I can't seem to help it. I need some answers.
Thanks again for sharing your story - I do really appreciate it.
Wow, Ray. that's some heavy reading. There are some key and well known verse here for sure. but the first part of the chapter is new to me. I don't think I've ever read it. Jeremiah is quite broken and hopeless and yet is determined to hope in the Lord. That is the message of the chapter I guess. I will read it again and meditate on it. Thanks man!