My Choice: My Arm or My Life.

For sure.

I'll be honest: I was actually relieved to get to this line, in your post. The title made me feel really anxious that the post might develop into "So I don't know what to decide" or even "So I decided not to have the surgery".

I'm dismayed to hear of your situation, John. I don't know you at all, but obviously I recognize your name.

I send you warm greetings from England and best wishes for your family and yourself at this difficult time; hoping that it all goes better than expected. And looking forward to reading further updates.

Lexy


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I know you have already been through it before, but I would want a second opinion from a doctor that has successfully removed cancer invading muscle. If it hasn't fully invaded the muscle, and the doctor is skilled enough, they OUGHT to be able to leave enough muscle that, with more chemo, should allow you to grow enough muscle back to have relatively decent use of your arm/hand. An arm, or even a hand, is a lot to lose.

ALSO, it is unlikely that you got cancer again, especially if it is in the same place. It is more likely that what you had wasn't fully destroyed. If that is the case, no matter what you pick, you will likely have to go through chemo again.

I wish you luck.

Steve

Might sound weird to say but thats almost encouraging (as opposed to cancer appearing somewhere else your cancer danger seems to be very localized). You've made a good decision though. I've known of a few people who tried to save a body part they could live without (though by no means easy to lose)and lost their whole body.

Wish you the best and my prayers are with you

So sorry to hear about your situation.

I had a very large malignant tumor on the base of my tongue diagnosed late in 2005. Life threatening unless I did exactly what they told me to do. I was pissy and pouted for a few weeks saying I'd rather die than go through what was in front of me. I can't tell you how many times the medical team caring for me said stuff like, "Well, if you don't do _______ you'll be dead before the year is out.

I got off the pity pot and made all the smart choices because I feel life has presidence over almost everything else.

On another note, I had a close friend that lost his right arm (all the way up to the shoulder) in an industrial accident. This guy sucked it up and continued on with his work (logger) and became a millionaire. Even without his dominant arm he was able to do twice the work of everyone around him.

It's all in your attitude and thinking. I wish you the best.

I won't pretend to know what you're going through. But from knowing other people that have gone through similar situations - and from what I've heard here - attitude is the key.

Many people think that a good attitude is something easily put on, like a shirt. But in many cases it takes a huge effort and a lot of practice exercising it.

You seem to be practicing a good attitude already - so I'm pretty sure you'll be fine whichever route you choose.

I thought of something that made a big difference in my own experience. I was diagnosed by an ENT (ear, nose and throat doctor). With more than 35 years of experience, she said the only option was surgery followed by chemo and radiation. The surgery involved removal of a lot of muscle tissue from the left side of my neck along with my left jugular vein. With that done I'd only be able to turn my head by moving my torso.

She talked about my body parts as though they were interchangeable pieces that one could pick up at the hardware store. "Oh. Of course, we'll have to take your jugular but you'll still have the other one." Her bedside manner was really raw.

I asked my primary physician to set me up with another ENT for a second opinion, which he did. As it turned out there was this brand new protocol that involved just chemo and radiation. A LOT of radiation. The radiation oncologist I saw told me that in nearly 40 years of practice he'd only given more radiation to one other guy. And it was too much for him. He opted out at the halfway point in the treatment and ended up dying soon after.

Still, I saw this option, as grueling as it was, a better choice than surgery. I returned to the original ENT and told her what I was going to do. She said the new treatment was untested and unreliable and said I was being foolish. She said I'd go through it and still need surgery, only now the tissue would be all scarred and damaged from the radiation, and would be really hard to do.

I still wonder how much of her pressure was coming from the possible loss of a $200K fee. Anyway, I fired her and went with the experimental treatment. For each session I spent 22 minutes getting the radiation. To give this some perspective, the average radiation session for most types of cancer is around 5 minutes per session.

Within two weeks I had massive burns on my neck and inside my mouth and tongue. I needed dressing changes two to three times a day. My mouth had huge lesions. I almost immediately became addicted to dilaudid, a powerful narcotic pain med. I was taking massive doses. They told me I'd lose my sense of taste and my ability to produce saliva as they'd be killing those glands with the radiation.

I got through the treatment. Seven weeks. My taste and saliva came back to 100% within a year. The doctors said they'd never seen anything like it and wrote two extensive papers on my treatment. The cancer was gone and I got to keep my neck muscles and jugular vein. And I've been healthy as a horse since. In fact, the reason I did so well with such radical treatment was because, other than the tumor, I was already super healthy.

The point here is simple. Get a second and even a third opinion. Maybe they don't have to take the arm.

I'm sorry to hear that the cancer returned, but very glad to hear that you have options and you have chosen the one that makes the most sense for long term health and safety. I hope you can enjoy the holiday season that's upon us.

Hi John. Strength and courage to you.

I have to agree with second and third opinions....on any illness or disease. I hope you have done that.

Other than that, I hope the very best of luck and life to you. I'm sure your loved ones will be glad to have you around with them whether or not you are putting one arm around them rather than two. Seriously - people accomplish amazing things with a missing limb - especially, as you pointed out, with the prosthetics available now.

Please stop back in and let us know how you are doing now and then.

John,

Your attitude is inspiring to me. I've had two friends with cancer. One friend is still here. A main ingredient in living with cancer is attitude and I'm thrilled to see you already have that in spades.

I wish you and your family all the best.

Bonnie

I am sorry to hear about this. I also second second or more opinions.

Is radiosurgery or the gamma knife an option?

My dad had two open heart surgeries about a year apart. The first time
done by the team his long time physician highly recommended - known
as the best in the state. The second time by the nearest possible hospital
because he collapsed at the gym.

The second team found an arrhythmia and implanted a defibrillator.
The first team was in the dark about this newer technology.

The second team just came across as so much more competent and up to date
than the first team it was hard to believe they are in the same profession. The second
team had a cardiologist, surgeon and a doctor who also had a masters degree in
Electrical Engineering (for the implanted defibrillator and other electronic devices they
use these days).



Dan

Prayers and well wishes to you and yours John. Have as Merry a Christmas and Happy New Year as possible. Keep up the good attitude and don't be a stranger.

Mark

Our thoughts are with you John and if there's anything we can help with please don't hesitate to ask.
Jack

WOW! John,

My heart goes out to you man. I will pray for you. Understand it is not something that makes you less of a man. You have faith it sounds like, o.k. cool so do I I believe in Jesus with all of my heart and I will petition Him tonight in my prayer time.

Please don't allow depression to overtake you, if you ever need to talk to someone or whatever, please, please don't hesitate to reach out

May you live in peace
-WD

Godspeed, John. Our thoughts are with you. Strength and peace.

Good luck to you. I hope that the insurance approves it for you.

Ditto on the best wishes! You will rebound and return, better than ever. It's a hero's journey.

Best wishes today, John.