Squamous cell carcinoma (SCC) P16+

I too had a great fear of needles, surgery and doctors. Not so much now. You can do this as I did. Just take it one day at a time. It sounds like with the PET scan they are trying to determine where your tumor is? Short Story. Lump came up on the neck. I was diagnosed with HPV16+ OSCC in March 2023 through a biopsy. ENT Scope found the tumor at base of tongue. I decided to have surgery to remove. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I just completed 30 rounds of Proton Radiation 6 weeks ago. I did tongue, jaw and neck and swallowing exercises daily several times a day( On the way to treatment is a good time). There are tons of videos online. However, If you have a Speech therapist they can help you with this. As of today 6 weeks out of radiation I can still eat and drink. I cannot taste much and I have dry mouth. Acid Reflux. However, I am alive and my latest NavDx blood test showed negative/ non detectable. Overall I feel about 80% energy wise. You can do it!

they want to see if it traveled anywhere. oh yes the lovely ENT that's going to scope me and get puked on .... I really don't do well in this. the one guy I'm talking to is telling me port + radiation etc. The lump is about 3x4cm... yes I know it's big... he's saying radiation will shrink it and its gone. I'm actually thinking it's my tonsils it started high up right by them, the Dr says no. so who knows.

why remove all the nodes?

My guess and just a guess it started around tonsils as u say and spread to the lymph nodes . The ENT scope should find the tumor source. It is not so bad and they can numb you. I choose surgery but as I understand the HPV16+ responds very well to radiation alone as in shrinking the tumor. They usually remove all lymph nodes on the side of the neck they are working on and send to lab for testing to make sure none have cancer.

seems like a lot of extra to me. just saying if they light me up in a PET scan then they should know where the source is as well as if the other nodes really need any testing. just the way my brain works LOL.

Hello @midiwiz and welcome to our group. I take it you would rather be in Philadelphia than have to face what is down the road ahead. If you don't have an online portal with your doctor(s) try to get one so you can read and re-read the doctor's reports (SOAP's). Take notes and learn what you can about how you are going to proceed. Also make sure your radiologist and surgeon is well versed in head and neck cancer, not just cancer. If they have no experience in head and neck then my advice would be to seek out a second opinion and staff. Try not to get overwhelmed. Take this one step at a time. You are going to have to devote most of your time and resources to getting rid of this cancer.
Do you have someone to help you through this? It's not a trip you should make alone. Keep posting as you progress. Lots of help to be found here.

I was originally refered to Florida Cancer Center... The doctor is supposed to be highly regarded but quite obviously I look at things a bit differently than most. While he says the raditation will get rid of it....then he says port. so that's chemo and radiation. I have reached out to Mayo, still waiting for a call back which unless it's before the ship leaves tomorrow will have to wait another week. I reached out due to reading about using DART on it. I've contacted moffit and MD. however anyone that goes with 'lets cut first then..." is probably not going to get all that far with me.

Yes the trip is with the wife, she's having a hard time obviously dealing with my panic and everything. I'm no where close to a normal patient, fight or flight is my nature. Unfortunately there's nothing they can do for that one.

i should mention, I know some of my responses can be a bit flip or edgy but never in a million years is the common term about this right now.... I should also add, I just got a force out from my job of over 24 years, then my mom passes, and then this. harder when I have to deal with all that cause the bills don't go away when the job stops....

I just went through the exact same diagnosis this year. I can confidently tell you to calm down , you are in good hands.
I am 4 months out of treatment and doing well. I too had never had an inkling of swollen lymph nodes or cancer on the base of my tongue. The lead Dr advised no surgery and I went through 7 weeks of chemo and radiation. It’s no fun. You will be challenged for the next 3 month and then one day you will start to feel normal. Ups and down yes but have confidence, your Drs know what they are doing.

I had 2 surgeries and 25 radiation treatments for treatment of HPV tonsil cancer as primary tumor and spread to 1 lymph nodes. This was a very challenging experience, but I got through it. You will get through your experience too. Given the challenges you will likely face, I suggest you stop being flustered and baffled by what’s going on and start doing some serious research and self-education. The more you understand about what’s going on, the better you’ll understand why you need to experience the challenges you are about to experience. In my opinion, you’ll be better off facing this with an “I know what we need to do so let’s get this done” attitude as opposed to a “why is this happening to me, I don’t like it” attitude. You’ll need commitment to get to your treatments every day. You’ll need mental strength to get through what could likely be some significant pain. Eating and drinking ability will likely become challenging for an extended period of time. The extent of these challenges I mention will be determined by the quality of care you receive. Educate yourself so you can ask questions before you begin treatment. You want to be confident that your doctor(s) are experienced and specialize in the exact specific treatment or surgery that you will undergo. Most of all you need to be determined that you can and will handle whatever comes your way. I’m sure your wife will be there for you, and you’ll be so grateful for all she does. Thank her now ! … and make the commitment to each other that you’ll take this on together and win.

@midiwiz, I wanted to check in with you. How are you doing? Any update?