Gino,

You may not live the rest of your life with a stiff neck, it varies from patient to patient. I had a mandible resection, forearm free-flap reconstruction and a neck disection, This was followed by 35 radiation treatments and no stiff neck. Anyone else care to throw a false absolute at the guy while he makes his decision?

Glenn

Glenn,
I don't believe that was Tom's intention, to throw a false absolute. I understand your desire for good, accurate information being given on this board, but the way to accomplish that doesn't need to be by trying to embarrass nor riducule other posters. Tom has been a great source of encouragement on here, why try to make him feel silly?? You have made it clear that you believe the religious aspect can make people leave the boards. Other posters attitudes can do the same and I think that needs to be pointed out. And please don't anyone come on and tell me that's just Glenns way. He's a bright, articulate man with alot to offer and he's as capable as the rest of us to offer it with some sensitivity.

Gino, concerning the stiff neck. I had a neck disection and had my lower left jaw replaced and my neck is quite stiff. Even so, it's amazing how well a person can adjust to something like that. It bothered me alot at first but now I only notice it when I'm doing a physical activity and even then, I simply find ways to compensate for it. Let's hope you don't have any of that stiffness, as Glenn said, it's not the same for everyone. Good luck with your decision. I think the chemo/radiation route is the smart choice.
Minnie

Gino,

I agree with the post from everyone concerning the radiation. Throw everything at "it" that you have at your disposal now.

As for the side effects, they probably vary from person to person to some degree. As Minnie said, you just find a way to compensate. After a while, you don't think much about it.

Good luck to you.

John

Minnie,

I know the religious posts have caused people to leave the forum, just wanted that to be clear as well. As for my lack of sensitivity, you have no idea about me, or what I do here. I respect all you have endured, but if you do not like my posts, skip them. I do not like statements that appear to be the absolute answer and I'll call them when I see them. This was not the first by an obviously knowledgeable poster. I'll not question the residual problems you may have experienced, I had different surgery. If I had the same treatment, I'll open my mouth. Like I said, you can just skip them. I have tried diplomacy before, it does not work here.

Glenn

I have to jump in and agree with Glenn. It is perfectly cool to share your personal experience, strength and hope. Many times however, it is not made clear or disclaimed in any way that every patient is different and that HAS to be stressed otherwise instead of helping people we are, in effect, scaring the crap out of them when they need to make critical decisions -and not fear based ones.

The forum tends to be unbalanced as it is, because many who have easy times this with disease and treatment are reluctanct to post out of guilt or they feel bad for those struggling. Additionally, many who have gotten through this relatively unscathed, just want as much distance as they can get from cancer and any aspect of it.

I don't have a stiff neck, didn't have a PEG, have ALL my sense of taste back, love salsa and hot and spicey food, practically normal salivary function, kept all my teeth, no surgery and I had an very advanced and huge tumor. I really don't like gloating over this, I'm waiting for the "shoe to drop" just like many others out there.

The point being, that we are all different and all respond differently to treatment and this disclaimer must be added, in all fairness, especially for the benefit of the new people here. I believe that this is the point that Glenn was trying to get across and not a personal attack on anyone - but a concept that must be stressed.

We must remember the broader picture here - we are here to walk along side people going through this, whether they are patients or caregivers. We must be sensitive how we share our information, and even though we are not doctors, try to provide as balanced a perspective as we can.

I am totally in agreement with Minniea here with regard to the tone of some of the posts.
It seems each time someone takes offence at a rude post someone else jumps to this posters defence.
I understand that in pm`s the tone can be just fine and the information and sensitivity outstanding, but, most of the rude ones are out there for all to see.
As to, " skipping what we don`t like ", that works both ways guys.

Marica

I must say I appreciated Glenn's post and believe it wasn't meant as a personal attack on anyone. I too think we should be as accurate as possible when exchanging information. At the same time, I believe Tom was simply sharing his personal experience--giving me a "heads up" about the possibility of a stiff neck, and making the point that a stiff neck beats dying. Therefore, I appreciate that as well.

While I personally assumed Tom was basing his post on personal experience, I also understand that many others might indeed take these experiences as absolute facts. Therefore, perhaps Gary is right. Everyone should always be careful and make clear that what they say is based on personal experience and might not pertain to others.

I have another question. Does radiation treatment to the neck area cause hair loss (on the scalp)? Also, is anyone aware of research that looks into rates of recurrence among people with oral cancer who undergo radiation treatment?

Gino

Gino,
in my own personal experience my hair loss was that directly in the radiation field, i.e., my neck. I don't have to shave below my chin anymore. The back of my neck is pretty hairless too, but below the normal hairline so it's no big deal. Although a few survivor hairs here and there have grown back. Your scalp should be fine. Some chemos don't cause hair loss and that is temporary if it does.

Gino, can't help with the 2nd question, but John had IMRT and only lost a little hair at the base of his neck, in his arm pits, and a small amount of facial hair. No hair loss otherwise. amy

Glenn, I don't skip your posts, they are full of knowledge and intelligence. Did you skip the religious posts?
I echo what Gary posted, that we must be sensitive with how we share our information. Sensitive even when we don't agree.

I don't want this to be a big deal, I just know the sting of being made to look silly on this board.