Squamous cell carcinoma (SCC) P16+

Hey @brad78. I was diagnosed with HPV16+ OSCC in March 2023 at 56 years old. Of course I was very fearful at the time. Since then I have learned that this type of cancer is very treatable and successful. Yours was caught early which is even better yet. I had TORS robotic surgery April 2023. I had a right neck dissection as well with all lymph nodes removed as cancer had spread to a couple of lymph nodes and TORS surgery to remove primary tumor of 3cm at base of tongue. All margins clear. Also, I completed 30 rounds of Proton Radiation in July to "cleanup" and cancer that may have been left behind. I had NO chemo. As far as presurgery I don't recall doing much but waiting for the Surgery. The biggest issue I had was dysphagia and Not being about to swallow (eat or drink) for about two weeks after surgery. I would start doing mouth, tongue and swallowing exercises today. If you have a Speech therapist they can help you with this. As far as post op. The pain is fairly severe for one week after surgery. I had alot of mucous where you feel like you are almost drowning. It will be hard to eat and drink or sleep. Think soft foods and Boost drinks. I had pain medications which helped tremendously. As of today I would say I am about 80% back to normal . It is a SLOW climb back and you will never be quite "normal" again but you will be alive. You will have CT scans and throat scope every 3 months for a year or two to monitor any recurrence. You may ask your doctor about the NavDX blood type which detects HPV16 cancer in the blood as it will help once you are being monitored in the future. Good luck to you. It will be a journey for sure but You can do it! Stay positive.

@jonesja thank you so much for sharing. So helpful to hear the stories if others because one really does not know what to expect. One of the things I'm wondering is will I be able to work. Right now I have an office in city and also at my home so I can work from a laptop. Was really hoping I would be able to do that at minimum.

I see no reason you cannot work through a laptop at office or home other than the first week or so after surgery. However, speaking clearly could be difficult. I would say you would not feel like digging a ditch,etc. For what it’s worth I had my 3rd CT scan post cancer yesterday and no cancer reoccurrence was shown. Faith in God played a great role for me. There is light at the end of your tunnel.

That is amazing news and congratulations. Doing what I can to stay grounded through prayer and patience. Already seeing beautiful moments.

@hrhwilliam Got the call will head to surgery at 5:30 am tomorrow. Going to be fine and will be sure and send an update when available. Doctor thinks just a couple of days in the hospital.

So finished surgery around noon yesterday. 20 nodes on left side removed and 2 biopsies on the right. The 2 on the right are benign. Tonsils removed. Spot on tongue benign. Had to have a drain put in. I ate and drank last night like crazy despite the sore throat. Most likely head home this afternoon. Staples and drain should come out in next few days. Overall feel good. Surgeon spoke as if he wants to just monitor me and avoid radiation but that will of course depend on the pathology report. Right now, I'm just going to heal and move on with life. Not going to sit around and wait for this or that. It will all come together soon enough.

If you can get by without radiation, so much the better. Some patients are put on Keytruda or similar for a while. Good to hear you are on the mend.

I think my concern is recurrance. Did they get it all. Without radiation, that risk increases at least as I understand it.

That sounds like a very positive outcome so far! Yes I had the drain as well. I imagine this week will be tough but it will be much better in 2-3 weeks as far as pain. Yes your Pathology report will guide your Doctor on the next course of treatment concerning possible radiation, Chemo or nothing but monitoring for the next few years. I agree recurrence is always a concern. Radiation should kill any remaining cancer cells. As my oncologist said you only get one swing at it so to speak. I would ask about a shorter cycle of radiation maybe 30 Gy instead of the traditional 60 Gy. Trials are showing it is about as effective without the harsher side effects. Unfortunately, the gold standard for years is blasting you with alot of radiation. I feel the cure is almost worse than the cancer but at least you are alive.

There have been advances in this particular cancer treatment which I did not have access to years ago. Radiation can and most likely will result problems for years if not forever. I understand your concern with reoccurrence however the option then for radiation would still be on the table. Our concern about the big "C" returning is forefront on most people's mind for years. It is only natural.
I recall at my five year mark the oncologist telling me that now my risk of return is that of the general population. To which I replied that it is now exactly where it was when I got cancer therefore I am not comforted by that statement. Now that I am older it is no longer a concern.
Have you been advised if you will have a followup medication?