Can anyone tell me what criteria is used to determine whether I should get just Radiation, or Radiation and Chemo. My tumor board was split down the middle, so now I'm confused on what to do.

The RO said there was a US study and one in Europe that showed no benefits to adding Chemo to the Radiation treatment when there is NO EXTRA NODAL EXTENSION. I had 5 positive lymphnodes, 3 in stage 1 section of neck 1 in Stage 3 of neck, and 1 in Stage 4 of my neck.. all with no extra nodal extension....I have to decide quick, I'm supposed to start Radiation on Monday... and I'm unsure of what to do. So many posts I see all have Chemo and Radiation.

Should I ask them for the Chemo too?

Obviously do not want it if it will not help me... but scared to make wrong choice. Can you please share any insight you have on this subject, would be greatly appreciated.

Thankyou.
Angela

Extra nodal extension just means it has not perforated the lymph node capsule so there is less likelihood of metastases.

If you aren't comfortable, seek a second opinion. A tumor board split would encourage me to do exactly that. Best 2 out of 3 sounds better than a coin toss.

I'm sure you will get some opinions here, and I think I've seen some for you in another thread. I feel absolutely miserable for you, such a difficult decision. My hope for you is that you will be ok with the decision you make. I decided my first round with this cancer not to get radiation, and my cancer returned. It probably would not have returned if I had done the rads the first time. However I have absolutely no regrets. I took a chance and lost. I was not even close to mentally/emotionally handling it the first time. So, as strange as it sounds, I believe it was meant to work out exactly like it did.
All the very best to you, I will continue to keep track of your progress here on the forum.

Hmm. If this was me or my family I would definitely get the chemo. You had 5 positive nodes. That would be enough for me. This is a nasty aggressive cancer, hit it hard first time.
Just my opinion.
Tammy

I can see where the doctors are split. Chemo is recommended for adverse features, and according to your information, there are two, one is the pN5 nodal disease, two above the N3 adverse features, and other is one being in level IV in the cervical neck, unless they re-staged after surgery to N0. Usually oral cancer is mainly in nodes in levels I-lll, if it metastasizes, and not as much in level IV a small percentage.

Good luck

Angela,

First, do not start treatment until you are totally totally comfortable with your plan. You have to trust your doctors and the prescribed plan; your life depends on this.

Chemo with rads is very common. The radiation is doing the cancer killing, the chemo is to help the radiation do its job. Concurrent chemo may kill of some micro cancer cells but no doctor is going to suggest that the chemo is there to kill any cancer cells.

Since the concurrent chemo is done to improve the radiation then why not do it? The downsides of chemo are much smaller when compared to the side effects, both short and long term of the radiation. Plus weekly dosing offers much less side effects.

Get a second opinion if you feel that will help. Do consider getting more opinions may just make the waters more muddy and certainly no guarantee it will result in a clear decision.

The tumor board being split is really not a bad thing per say. Each doctor has bias so in less clear cut cases their bias swings their opinion.

Doing both is safe and within the standard of care guidelines. If you feel like you want to do all that is possible to kill the beast and do all you can to kill it off then getting both is that path.

Sparing yourself some side effects of not having chemo seems a small price to spare for just the peace of mind you and your team gave it all the first time around.

Good luck
Don

I told my docs to nuke it from orbit. I asked for chemo and rads. The docs were a little surprised but agreed and said as you wish.

The rads TX is not fun, very painful and the chemo adds only a small amount of discomfort that will pass much sooner than later in the whole scheme of things.

Hey... With the number of lymphnodes involved I'd push for chemo, chemo is meant to soften up any remaining cancer so it is more easily damaged by radiation. It essentially boosts the radiation. I would not want to walk away at the end of this and say... Should I have? Particularly if you are faced with a recurrence.

Chemo in this case isn't a hold over (as in... Well if the rads doesn't work we'll try chemo... Sadly no chemo will work on this cancer... Unless there's a new trial drug out there that we haven't heard about. I would throw the book at it now if you can. Hugs.

Why would you think the doctors would give it to you if you didn't need it? Why would they order an expensive, difficult treatment if it wouldn't help you?

I think you've asked the wrong question. You don't ask the doctors for chemo, you ask them about chemo. I don't understand why you would be talking to an RO about chemo. You should be discussing that with a a medical oncologist, not a radio oncologist. Now I'm a bit confused about how you are in this situation, maybe I've missed something. I don't know where you are, I presume the US somewhere? In Australia they call it a clinic, I believe in the US you call it a board, where a range of specialists (MOs, ROs, ENTs, dentists, speech pathologists, dietitians) review your case together. They discuss and decide the course of treatment, each specialty discusses the implications of the treatment from their perspective. For example the RO says we're going to do IMRT, the dentist points out that you'll need xyz teeth extracted.

You should not be in a position of having to "choose". Professionals who know a lot more about this than us should be deciding on the best course of treatment and explaining to you how it works. As it was explained to me and as Cheryld just said, it softens up the cancer so the radiation can better kill it.

And if there really was a coin toss either way and they did offer you two choices, I'm with Brian. Nuke it from orbit! I think that is a common feeling, get this out of me and do whatever you need to to prevent it ever coming back.