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Meet others living with Head & Neck Cancer: Introduce yourself
Head & Neck Cancer | Last Active: Sep 21 5:27pm | Replies (538)Comment receiving replies
Hi, my name is Barry, I live in Florida, 72 years old. Two months ago I developed a lump on the right side of my neck. No other symptoms. I was diagnosed with squamous cell carcinoma in my neck, which I had to have a radical neck dissection of 3 tumors and removed all my lymph nodes on the right side of my neck and shoulder. After healing somewhat, 3 weeks later I had a second TORS surgery to remove a tumor and cancer in my right tonsil, the primary cancer, that spread to my neck and lymph nodes. Its been about 3 weeks now. And it was HPV P16 positive. I have some trouble swallowing food, dry mouth, drool from the right corner of my mouth, a slight lisp, and much atrophy in my right shoulder. Infact, I was a good tennis player, and now my shoulder is so weak, I can not hit a ball over the net. I will start physical therapy.
Now, my BIGGEST CONCERN. I can manage ok the way I am now. They want me to start 6 weeks of Radiation Therapy as a added measure to hopefully prevent reoccurrence. When I read all the side effects that can greatly effect the quality of my life, I am extremely cautious and petrified to start radiation. I am sure many people have the same situation and same dilemma. I am kind of frozen with fear and do not know what to do. I need guidance. I would greatly appreciate any advice and support. Thank you
Replies to "Hi, my name is Barry, I live in Florida, 72 years old. Two months ago I..."
Hi Tom from Illinois, 8 months out from neck dissection, 6 weeks of radiation and chemo.
seek out alternatives to radiation. yes, it can be overcome but there are some long term effects that can be life changing. If radiation is only alternative hopefully you will receive proton and not photon. If it can be done on only one side that would be very helpful
Hi Barry, I am in Florida also. I had both tonsils removed, a portion of my tongue, and 90 plus lymph nodes in my neck (three had cancer). I had similar challenges you listed after the surgery. I was also on a G-Tube for a while. The good news on your shoulder is that the strength should return with physical therapy. I had surgery in May 2023, and I have full mobility in that shoulder now.
The recommendation was for me to do radiation after the surgery, but I did not because of the eating challenges I was having.
I am more than happy to speak with you via email or phone if you would like.
Eric
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Hello @big123 and welcome. This certainly isn't something to have in your life plans at your age but here you are. As a patient, not a doctor, there has been a lot of success with drugs such as Keytruda in place of radiation with HPV +16 variant SSC. We know that radiation therapy has had an excellent track record in stopping or holding off SSC but you are correct in the assumption that there will likely be damage both short and long term from radiation. Ask around if drugs might be a better option. Second opinions here can be a life(style) saver.
If radiation is the only option, the side effects can be worked out over time usually. For me it was the only option twenty years ago, yet I still fly airplanes, ride horses, play a bugle, laugh, cry, live life. It's not the end, just a really bad bump in the road.
If you have any questions as you go along, there are a lot of good folks here who can help you out. Courage!