As I was going in to get a deviated septum surgery my ENT doc saw a swollen tonsil and biopsied to find HPV+ OSCC. So after CT scans, the hope was to see if we cut surgically remove it all. TORS was scheduled and I went in a week ago Thursday. Doc did as much as he could, but couldn't get it out as it was starting to go around the back of my throat(?). He was able to do a unilateral neck dissection with no nerve hits except for maybe around my scar area - feels numb.

Bonus I have a g-tube for recovery from TORS. Might as well leave in for extra cals during Chemoradiation.

So now I have this grading P16+T3N1MO also no extranodal extension.

Next up for me is to do chemoradiation with likely the gold standard IMRT + Cisplatin. I'll find out next Friday what the docs here recommend.
Additionally I've been in touch with the Proton center in Prague, I'll be sending them the latest records from surgery and pathology. I want to keep that as an option if I don't like the approach here locally.

The key things for me are to survive, no hearing loss, taste/saliva, swallowing in that order. I'll deal with the horrendous pain during the treatment/recovery and take more on if I can reduce long term effects.

One last thing if it comes back locally, I want to be able to treat again. I don't want to throw my hands up in air - that seems to be my big questions.

Welcome to OCF, Kambo!

Be very careful with the cisplatin. There have been many who have permanent hearing loss from that type of chemo. Most who do the smaller weekly doses do find its easier to tolerate than the 3 big bag method of getting cisplatin every 3 weeks. If you notice any change in your hearing, replay this to your medical team... before you get another dose of it! Do NOT get another dose of cisplatin if you notice even a slight buzzing in your ears. The doc can change you to carboplatin or Eribtux types of chemo.

Patients who undergo rads (with or without chemo doesnt matter) will experience a temporary change in their ability to eat. Food will lose its taste and be difficult to swallow. Unfortunately these are things beyond our control. The only thing you can do to make this entire ordeal as easy as possible is to focus on what is within your control... your intake. The better you do with maintaining your current weight and eating, the easier this will be. Every single day... starting now, you need to take in at least 2500 calories and 48-64 oz of water. This needs to continue until at the very least you hit your one year post rads mark. I know you are recovering from surgery so do the very best you can with pushing yourself to eat as much as possible. Cancer patients burn up calories at an incredible rate when fighting cancer and their body is trying to rebuild itself. Even 3000 or 3500 calories daily isnt too much for most patients going thru treatments. As you spend more time here you will see I can nag people about their intake. I suffered greatly due to not having a caregiver and sleeping 20+ hours a day instead of setting up my feedings. I lost 65 pounds in a very short time and paid the price by being hospitalized for malnutrition and dehydration. I felt so bad I was convinced I was dying. Intake is a huge hurdle for almost all OC patients. Its very difficult to eat things that taste burnt or like cardboard. Luckily you already have a feeding tube in place. Practice using it so you will know what formula you can tolerate. Ive used a feeding tube for almost 11 years so just let me know if you have questions or need help with it.

Try focusing on the here and now without getting too far ahead of yourself. Most patients do NOT have recurrences so hopefully you will never have to deal with any of that. Patients who like to be well prepared for future health concerns such as a recurrence should read and learn about their illness. You may also want to have a long talk with your treatment physicians about odds of recurrence and what future options you would have. Many patients have their "lifetime max dose" of radiation and cannot be treated with rads again if they have a recurrence. Others are able to go thru rads again to eliminate their cancer. This is on a case by case basis. For complicated cases (including recurrences) patients who are treated at comprehensive cancer centers (CCC's) fare better than those treated at smaller independent facilities. Some of the top oncology doctors in the US can be found at the CCCs. Even the very best doctors do not always have the best bedside manner. Personally I would rather have a doctor who is brilliant and will save my life than one who will make me laugh by telling jokes. As far as cancer treatment in other countries, I do not know what they offer or they have new techniques that have not yet cleared thru the US governments standards for use in the US.

You do NOT have to endure "horrendous pain"!!! Being in pain is NOT helpful to any patient. It causes them stress and discomfort that only worries patients and makes everything they're going thru seem so much worse than it needs to be. If you are in pain, ask for something to alleviate it. There are many over the counter and prescriptions options to help make you comfortable so you wont suffer. No patient should ever have to suffer in pain! I hope you are doing ok after your surgery and not in any pain at this time.

We're like a big long lost online family around here. Feel free to ask questions and we will do our best to help you as much as possible. Now that you have found OCF, you're not in this alone anymore. You are among friends who do completely understand everything you are dealing with and going thru.

Best wishes with your continued recovery.

Thank you so much for your feedback.

* I don't mind the feeding tube.. It's actually quite productive and a time saver - bright side! I'm pushing as much as I can absorb. Full tummy and all. Will keep your advice in mind. I've also found I cannot even sip water right now, goes down wrong pipe a slight bit. But I can swallow saliva.. weird.... This TORS surgery recovery may be a while.
* Still can't speak very well.... well I can talk, but it's hard to understand. Tongue still swollen. Doing exercises all day long to stretch and move my mouth.
*Cisplatin.... I've been reading the actual clinical trials on it.. it definitely adds value in Overall Survivability (OS). So I'll suck it up and try Hyperbaric Ox Treatments and see what's possible in taking on sertraline.. I'm on lexapro which is great..
*Agreed on the bedside manner vs. getting the job done... I am looking into the equipment used in Utah Cancer Specialist office vs. Huntsman at University of Utah. If I can get Image Guided RT (IGRT) vs. a standard IMRT, I'll go there.

Thanks so much for your feedback.