Tongue cancer - mine

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As some of you remember I suffered a mild stoke early this year.

Unfortunately I have more bad news about my health. I have developed tongue cancer. There is a large tumor at the bottom and base of my tongue that has made it impossible for me to eat solid foods and has made talking difficult. On Tuesday (September 1st) I will be operated on at NYU Langone . Approximately half of my tongue will be taken out and reconstructed with skin from my leg and arm. A breathing tube of some sort might be needed as the tumor is in a location need for breathing and swallowing. There will be follow up radiation treatment which is another complication. Radiation and old rotting teeth apparently do not go together so all my teeth will be taken out and replaced by dentures. This operation is scheduled to take 10 hours while I am under general anesthesia followed by a 5 to 7 day hospital stay. This is tentative as a lot depends on if they find further cancer. According to the doctors my getting this is against the odds because people at risk for oral cancers are smokers and/or heavy drinkers and I have been neither.

There is enough to worry about here sans autism but since little is known about how autism affects senior health issues this adds further concerns. When I stated getting the symptoms it did overwhelm me and I shut down to a degree wasting possible valuable time. Because of my autistic clumsiness and touch sensitivities I do suspect it is going to make it more difficult dealing with the tubes, people poking and prodding me and with speech and other therapies and adjustments. I also worry that with my different neurology and hyperfocus the anesthesia might not work for me in the same way it does for an NT. It is known a few people do awaken under anesthesia I definitely do not want to be awake or be aware during this operation. As far as I am concerned they could keep me knocked out until I am fully healed but of course that is not advisable.

I will try and keep you updated as much as possible but I do not know what the access to computers will be at the hospital.

I am sorry to hear this.

I do think in your situation that your humanity trumps autism and have heard very good things about that medical center. I hope they will provide you excellent care.

Is there anyone who will be there when you wake up?

best of luck with all your treatments. looking forward to updates.

...Oh , I'm sorry . Best wishes .

I am so sorry that you have to go through this!

I hope the recovery is not too awful and that cancer is easily and completely treated.

I have been greatly enriched by your posts and the thought of you being afflicted in this way makes me sad.

I wish you well.

I am sorry to read that you have to go through this ASP. I hope that during your recovery you will have access to the internet, and that when you are able, you can communicate online.
No doubt there are people here, who will be concerned about you.
Take care.

So did you report the cancer in an early stage or are the doctors uncertain what stage it's in?

I'm sorry you are facing this. I do have a friend who recently had a large tumor removed from the base of his brain and is doing surprisingly well. Modern medicine has some amazing outcomes. Good luck.

Thank you everybody. While size is important because of the pain the whole thing with cancer is has it spread

Thank you for sharing this APOM and please continue to share your journey through this to your recovery. As you say, little is known about senior health on the spectrum, but all the senior aspies in my family, including myself, have had issues with cancer - and some of the younger members too. As cancer is a disease of the immune system, fundamentally, (it overwhelms immune defences to an unnatural degree) and as compromised innate immunity appears more frequently amongst spectrum people, the greater incidence of cancer may be very related to ASD status.

One of the reasons that these matters are under the radar is the exclusive emphasis on autism as solely a neurological condition, as if it affected nothing but neurofunction. Yet there are thousands of robust scientific studies that show this is a false perception.

The brain is part of the body, not split off from it; the interactions are total - what affects the brain affects the body and vice versa. Just recently the discovery of the lymph system in the brain overturned medical dogma that this was an impossibility. Hopefully there will be other dogmas overturned in the near future which will benefit the health of everyone on the spectrum.

My daughter has never smoked and rarely drinks (and then only tokenly), eats mainly a vegetarian whole food diet yet she now has cancer for the second time. So it isn't just about avoiding known risk factors. There are obviously other physiological factors at work with interact with individual biochemistry and genetic/molecular inheritance. The work done on mitochondrial dysfunction and autism has been impressive yet remains largely ignored; the greater incidence of coeliac disease in people on the spectrum is another such factor.

So it probably wasn't anything at all that you did or did not do; it is probably an interaction of a number of internal innate factors and possibly compounded by the stress of living in a neurotypical world as a neurodifferent person. I know it is natural to look for reasons (what did I do wrong) - probably nothing at all.

Your recovery is what matters and let us know how we can be supportive of that and what kind of support you would find helpful. PM me whenever you feel like it, to talk about anything at all, as you wish.

I am glad I have returned to WP at this point so that I can be with you through this journey too.

I hope I speak for everyone here where this is just a minor thing to be sorted by doctors who do this every day!

Hugs!

and Love!

ASPARTOFME wrote:
cancer... has it spread?
http://www.cancer.org/cancer/news/exper ... tasis.aspx

ASPARTOFME, one website does not write your future!
You're an individual
and your future is unknown and special and your own!

Here's hoping for a speedy recovery. I'm glad you finally got somebody to do the surgery, after all the insurance hassles.

Yep...Langone is a good place.

Hopefully, there will be a decent computer system so you could do your weather updates.

Always have faith that you will recover from this.

I'm so sorry. Is your cancer terminal?

I hope all the treatment your getting pays off.

Best Wishes, Rudin