Saying hello and a question or two or three

Actually the more I read, I think I have tongue cancer. Me and Michael Douglas, oh boy. Then I read about glossectomies and get even more depressed they will take my tongue out like in some horror film. Transoral is probably not available. Any good word or should I stop doomscrolling and get back to something happy like politics? 😥

Hello @robolobo. What are your symptoms? Do you have trouble swallowing, pain or changes in speech?
According to a medical site, the survival rates for base of tongue cancer can vary depending on several factors, including the stage at which the cancer is diagnosed and whether it has spread to other parts of the body. Here are some general statistics:
1. Localized Cancer: If the cancer is confined to the tongue, the 5-year relative survival rate is about 84%.
2. Regional Spread: If the cancer has spread to nearby lymph nodes, the 5-year relative survival rate drops to around 70%.
3. Distant Spread: If the cancer has spread to distant parts of the body, the 5-year relative survival rate is approximately 41%.
Most people on here including myself (look up profile if you want to) have or had cancer. We were probably all given similar statistics, and we all bit our nails waiting for all the most recent test results as time went on.
I am not trying to sound harsh. At age 65, I have lived most of my life, so it isn't the same as a younger person finding out they have cancer. Whether you are here another two years, or twenty years, it is going to go by in the blink of an eye. What is the point of worrying and fretting? That is because there is a realm after this which is our true home. That is of course my own personal belief. Stay close to your maker in thoughts and prayer. You are now in mine.

Call your insurance company directly and ask about your coverage in another state. I’m in Rochester, NY and my Blue Cross/Shield will pay 90% for my son’s care in hospitals/with doctors they have contracts with, and in any state. We’ve had 2 consults in 2 different states, and once we met our deductible, they paid the 90%. Most all major medical centers (which are the only places you should be considering for your care with this….), have contracts with big blue.
Best of luck,
Annie

Hi @robolobo and welcome to the Head and Neck group here at Connect. You have found the right place to get answers to your questions from patients who have experienced what you are about to go through.
No magic words to make it all go away. This is not a fight you were looking for but now here it is and you must deal with it.
First off, TORS surgery. Normally access through the mouth doesn't require TORS. If access through the neck, then TORS can be a bit of advantage. However, even with TORS, follow-up radiation is often required.
Next, Radiation. Proton Radiation Therapy has distinct advantages over traditional Photon radiation, far fewer side effects, far less residual damage. Unfortunately, Proton is often more expensive and far less available in most areas. Some clinics such as Mayo Rochester offers Proton for the same rate as Photon and even with that, the insurance companies balk by the mere mention of Proton. So there is that battle to deal with.
Lastly, find out what type of Squamous Cell you have with the biopsy. This is important in that lately the more common type of HPV +16 is far more responsive to treatment including drug therapy with or without radiation. the drugs are not Chemo but a daily or weekly, Keytruda being one. (not pushing drugs here, just an example).
I agree with @annieci here in that you should be considering a major medical center or cancer treatment center. This is your life we are talking about. A chance to build back is much better than a poor chance with treatments locally by someone who is not versed in Head and Neck cancers. Head and Neck is particularly special in that you breath, eat, think, talk, smile, and face the world with your head and neck. Make sure your oncologist is well experienced in head and neck cancers.
I, along with many you will communicate here, are very familiar with what is happening to you. So don't hesitate to ask questions. We are all volunteers wanting to help you because we know how difficult your days and weeks ahead will be. Your life should be focused solely on getting rid of this cancer. I understand your concern about biopsy results, what the doctor is going to say, how you should proceed, etcetera. Worry will not change anything. Just take it one day at a time, one battle at a time. And as one I admired often said, "Courage".

Dr. Google will take you down the rabbit hole. Source instead M D Anderson in Houston or Sloan Kettering or Cleveland Clinic or our favorite, Mayo Clinic to name a few.

Hello again and thanks for all the encouragent, good wishes and sage advice. Next appointment is Tuesday with my ENT, not sure if she will do the biopsy or what. Maybe more imaging is in order? A few questions/comments: 1) Assuming this is HPV-related, I find that odd in that I barely drink, don’t smoke and have not engaged in that certain intimate activity for many years. I kinda wonder if my mild bout with Covid woke up the virus that had lain dormant for many years. Who knows; 2) Thanks for the info re TORS. I learned that it’s done at UCLA Medical Center as well as Proton therapy, and insurance issues aside and whether or not TORS is used, I am strongly considering going there as they seem to have some doctors well experienced on this cancer; 3) This cancer has spread to one lymph node. Does it make sense to get a PET scan sooner rather than later to see if it has spread? Maybe that’s for my team to decide. That’s about it for now, going to watch some kitten videos ☺️

Reading more online (just can’t help it), I am wondering if having surgery and radiation and all the pain that comes with it is worth the trouble. I am 66 and have lived a long life, not as fulfilling and accomplished as I would like, but I have a wonderful wife who would walk through hell with me. Is is worth losing all or part of your tongue, breathing through a hole in your throat, being fed through your nose, not to mention all the pain. The surgery is starting to scare the crap out of me, they can bombard me with protons and fill me full of chemo, I don’t care. It’s either that or they can make me comfortable before they donate my body to science. Or am I just scaring myself a little too much?

A PET scan can be helpful in identifying cancer however, there is always an however, PET scans often show surgery scars as cancer as well as healed areas from radiation. That said, they are helpful but not defining.
UCLA med is an excellent choice.
Put yourself in the hands of your care team and trust their decisions. I know you are frightened by all of this. Generally speaking, you should have a good outcome.

Believe me, your life after cancer can have difficult side effects. But your life after cancer can be filled with other rewards in that it is almost always a life changing event for the better. I am older than you, certainly comfortable to meet my maker, but enjoying the heck out of life after cancer including doing this in my spare time, to wrap my arm around you and carry you off the battle field to a good recovery.
You can do this.

@robolobo, try to go with the flow. Your body has allowed this cancer to invade, so now you must focus on healing. Many things can wreak havoc on a person's immune system such as bad diet, smoking, drinking alcohol in excess, root canals, etc. I believe 100% that my two root canals weakened my immune system to the point that cancer invaded successfully. After the two teeth involved were removed (after insisting with a reluctant dentist) my health problems subsided. As for the cancer, I too had Covid more than once, plus the so-called vaccination. Between the Covid and radiation, both my vocal cords paralyzed. Hence, I could barely breath for almost a full year as I resisted the "hole in my throat" surgery.
After having a Tracheotomy, I am back to my old self. I can breathe, cough out mucus very easily, eat, drink, and speak. Do you notice you have on a shirt? Barely, right? Well, that is how the "hole in the throat" feels. I barely notice it is there as I mow the lawn with a push mower, maintain my huge garden, can my produce...on and on.
This has happened to you for a reason. This may sound silly to you, but your mind directs your feelings. Reject the negative and scary thoughts and replace those thoughts with positive thoughts. Look at this as an adventure. It sounds crazy, but if you keep thinking that way, you will start feeling that way. Whenever you get scared, just remember the doctors and nurses are waiting there to help you in this adventure. A television commercial for "Twister" came on while I was writing this which is profound! The words spoken: "You don't face your fears, you ride em'"!