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Just Diagnosed with Tonsil Cancer - How to Treat?

Head & Neck Cancer | Last Active: May 14 6:17pm | Replies (42)

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I am not a doctor but this was my experience. I was diagnosed with HPV16+ OSCC in March 2023 at 56 years old. I had an option of Radiation/ Chemo or TORS surgery. In the end I just wanted it gone and cut out so I elected the surgery. Of course I was very fearful at the time. I have since learned that this type of cancer is very treatable and successful on either option. 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. I imagine if you are Stage 3 you will have radiation on top of your surgery as I did. 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 suggest to start doing mouth, tongue and swallowing exercises today. A Speech therapist 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 90% back to normal . It is a SLOW climb back and you will never be quite "normal" again but you will be alive. CT scans and throat scope every 3 months for a year or two to monitor any recurrence. Ask your doctor about the NavDX blood type which detects HPV16 cancer in the blood as it will help once you are being monitored. Good luck and Have Faith. It will be a journey for sure but you can do it! Stay positive.

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Replies to "I am not a doctor but this was my experience. I was diagnosed with HPV16+ OSCC..."

Thank you so much to all of you who have responded! It really is helpful to hear honest real life experiences of others who have gone throught it.

So you are saying Proton has its share of side effects? I'm in Illinois and our Governor just passed a law saying insurance has to cover it. They say it's far less Invasive. At this time I'm not in the radiation group but like to research as much as possible. Trying to learn more about proton should an issue come up.