Hi David;

Just reading your initial post reminded me of exactly what I went through 2 years ago. So exact that a chill just shivvered up my spine !

Then reading the replies to your post prompted me to cast my vote along with the others. I strongly urge you to go for the chemotherapy along with the radiation. I had heard about the nasty side effects to the chemo, but the side effects of any post-radiation cancer is far nastier !

Let me share a scary (but as it turned out lucky) phase of my situation. After 7 weeks of radiation, 3 double doses of chemo, and a huge radical neck dissection, I was happy with the results. The PET scan could find no evidence of cancer, and the ENT had carved out what was left of the shrunken tumours in my neck. I figured it was beat.

However, during the routine pathology of the 27 lymph nodes & soft tissue that was surgically removed, evidence of a non-hodgkins lymphoma hiding therein was discovered. My newly assigned, new-to-the-team chemo oncologist had a hard time explaining this to me because I was simply shocked beyond comprehension. I had lost 50 pounds, couldn't eat normally, had zero energy etc. and had survived this far against very dim odds. The only thing keeping me alive was the knowledge that I was the one person in ten of my cancer group and stage who would make it statistically. After what I had been through, this news was devastating.

What was worse was the fact that they wouldn't be able to treat it. Apparently, had they known the lymphoma existed when they started treatment, they would have treated it exactly the same way that they treated the carcenoma in hopes of killing the two birds with the one stone. But seeing as I had already received the maximum amount of radiation I could safely receive, there wasn't anything more they felt they could do other than more testing and possibly more chemotherapy at some point in the future.

Things looked bleak. I remember clearly that in addition to my new chemo oncologist being in the room that morning, my first chemo oncologist (who ranked below the radiation oncologist in my overall treatment plan) was also present managed to sneak over and whisper to me along with one of those knowingly winks of the eye: "Don't worry John, nothing could have survived the 3 chemo-recipes I mixed up for you...." !

I wanted to believe him so badly. And happily, he must have been right. All the subsequent CT scans, bone marrow biopsy and regular follow-up exams could not find any further trace of the lymphoma, and everyone was cautiously optimistic that the treatment I had already received had killed it during the first round, and they collectively decided that no further treatment was necessary.

In my case the chemo was not optional. Yours apparently is optional. My treatment plan was all or none, and I went for everything recommended and then some ! Had the chemo part been optional, I still would have insisted I receive it.

I was scared about the side effects of the chemo, and got myself mentally prepared for a huge battle. It worked, because I sailed through the chemo without losing a single hair on my body, nor did I suffer so much as an upset stomach. And they had filled me with Cisplatin, listed as one mean chemo medicine with acute side effects, mostly vomiting. And I am one person who will do anything to avoid vomiting, I am so freaked out about it.

The point is David, I would not have made it without the chemo. I know that for certain. Even if it were in doubt just a little bit, could I really afford to be wrong just a little bit ? In my opinion, your best shot for a clean kill of this beast is with the first shot - give it everything you got, and then some if you can, and make sure your mind is right too !

From what I understand, the radiation gets the tumour directly, the chemo gets what has travelled to other tissues that didn't necessarily get radiated, and the surgery mops up what is left to be done, if there is anything left to be done. Its hard on you, but as others have pointed out, once is the number of times you want to experience this treatment and medicine per lifetime.

As you already know, you have definately come to the right place for information and comraderie, and I wish you every success with the upcoming battle.

Feel free to email or message me should you wish to discuss the matter in more detail or simply need a sounding board or a rant target !

Good luck, and good cancer hunting !
JT2