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HPV Tonsil cancer: I'm very nervous about chemo and radiation
In June of 2024 I was diagnosed with HPV+ tonsil cancer. I have been doing an alternative approach but believe it is not working and can not find a doctor in my area that will work with me and order a second pet scan as I am not following THEIR protocal. It is all Chemo / radiation or nothing! Basically my wife is no support if I go with the traditional routine, and insists that what I am doing will work.
I am very nervous about chemo and radiation. What else my be available?
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@harleytiger
Thanks, I'm stage 2.
My insurance covers proton. My copay is 20% up to my calendar out of pocket limit then everything is covered.
My doctors here say that the side effects from Proton are less than their IMRT but the differences are not significant. I'm still going to have swallowing and taste issues with Proton.
I found a Proton center in Oklahoma, I have family there I can stay with so that makes things a lot more affordable. MD Anderson proved too expensive. I gave them access to my medical records, I should be hearing back from them next week.
I'm also 71 with an enlarged prostate (no cancer) and a family history of Alzheimer's and dementia. Just wondering how much of all of this I want to subject myself to given what I have to look forward to.
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1 ReactionTo @toleolu: Navigating the Initial Hectic Phase
I know exactly where you are right now. You are in that initial whirlwind where everything comes at you at once. We all go through it, but you will get through it.
My Journey with Pyriform Sinus Cancer
I had a tumor near my vocal cords. Like you, I really wanted Proton Therapy and even drove several hundred miles to a specialist hospital to see if it was an option. Because Proton is so precisely focused, I didn't qualify because my tumor was on both sides.
The Road to Recovery
Recovery takes patience and persistence. It took a full year after my radiation was finished before I could talk and eat normally again.
The Feeding Tube: I resisted it at first, but because I was aspirating into my lungs, I eventually had one surgically implanted for about three months.
Taking Charge: When it fell out one day, I decided—against my doctor's wishes—to keep it out. I was determined to make my throat muscles work again.
Therapy & Healing: I worked closely with a Speech Therapist on throat exercises, which were vital. I also used a Red-Light Therapy Wand, which I believe truly helped my throat heal.
The "Amazing" Breakthrough
During my last swallow study, I remember the doctor watching the X-ray and saying, "That is amazing." My epiglottis had finally started doing its job again, blocking the entryway to my lungs. I credit the Good Lord, prayer, and that red-light wand for that miracle.
My Best Advice for You
Rest deeply: Utilize this time to let your body heal.
The Mental Trick: Try to think of this time as a "vacation." It sounds strange, but tricking your mind can help you handle the stress.
Best wishes to you. You've got this!