Many head and neck cancer patients are treated by irradiation. This treatment can take a heavy emotional and physical toll. A manuscript that presents my personal experiences as a physician undergoing radiation therapy for throat cancer was just published in Support Care Cancer. The manuscript can be obtained at http://bit.ly/mTp1Ey
I describe the physical and emotional effects of the radiation treatment and how I coped with them. The side effects that emerged during of the radiation treatment included: fatigue, mental cloudiness, pain and dryness in my throat, food aversion, inability to taste, skin burning around the neck. It is my hope that both patients and health care providers will benefit from reading my personal story.

Hey Doc

I did not realize until I read this manuscript that you were a PEG resister also. We've had some heated discussions on PEGs here and it's good to know that a seasoned doctor like yourself elected to avoid a feeding tube. But then again, you are in my age group and as I noted before, Michael Douglas and other age contemporaries of ours tend to decline getting a feeding tube.
I actually enjoyed the camaraderie of the waiting room at the basement radiation of Georgetown Hospital. The actual radiation not so much.
Keep up the good work
Charm

Thank you for sharing your manuscript and experience with us Dr. Brook. The part about being too tired to actively quit treatment really resonated with me.

Charm - we all get it- big, strong, proud men prove themselves by making it through treatment without the support of alternate nutrition/hydration - the rest of us aren't quite as strong. I believe that's your message - and I believe it's a harmful one for some readers on this site.

I think it's fair to say that we are ALL "resisters" of feeding tubes - no one here wanted one/ wants one/ or is happy to have one.

Not my message at all. Just like the posters here who fear addiction and don't take pain pills aren't saying they are better. My message is that there is nothing wrong with "resisting" the relentless pressure to get a feeding tube.
Comments like yours usually silence posters who aren't used to rhetoric and hyperbole. If you scroll thru the last three years, you will see that I've been regularly denounced for standing up to the PEGophiles. Heck, even Brian chimed in at the beginning. My belief is that I will be vindicated on the PEG issue just as I am finally being vindicated on the Neck dissection issue as some recent posts indicate.
Finally it's not fair to say that just not wanting to have something happen or not being happy that something happens makes one a "resister". Nobody wants to have a War, nor be in Iraq or Afghanistan, nobody is happy to have these Wars, yet they are not war resisters. My best friend in law school was a war resister and faced federal prosecution for it. Words have real meanings and by definition a feeding tube resister does not get one. I'm am no longer a resister to my chagrin.
Charm

Loved the article Dr Brook (hope you don't mind I saved it for my Alex)

Alex and I also stuggled with the apparent lack of empathy from the RO around side effects and turned to the nurses and speech pathologist for practical support. Our RO kept telling Alex to "eat more" and "try harder" and that he couldn't see any reason why he still couldn't eat. This, despite the fact he had a report from the modified barium swallow that told him Alex had real functional issues with swallowing.

There is so much more but I will not go on ...

Karen

Oh Karen! Your RO experience sounds very much like ours! Had J continued with treatment, we would have fired J's RO. We didn't plan to just switch docs quietly, but fire him. I had already verbally given the RO a new excretory orifice by the time J got his 3rd opinion. The RO felt he knew what it was like to be a cancer patient because he treated them. Wrong. We had a little coming to Jesus and he admitted he didn't know what patients feel and experience. In addition, he was oblivious about the psychological importance of second opinions and being completely on-board with treatment. All this from a man who had been an RO for 20 years. Back on topic...

Seems to me that staying nourished is of primary importance. Preserving the swallowing mechanism/ability would be a hair's-width behind it. To me, if you have a PEG it might help to try to get along without using it much. Or, use it but still drink whatever is tolerable (or not impossible) to drink.

Regarding machismo...let's hope no one will sacrifice a better outcome and end up severly ill due to malnutrition because they are too proud to PEG. But, if going through treatment without a PEG is a goal that empowers someone and it works for them, then great!

No two people have the same experience with treatment and so people should be gentle with themselves if they have a tougher time than someone else. Like everything else, it boils down to expectation management.

Sandy