....Oh and all of the ENT and Onc were trained in the UK and the USA

Karyn, I am a stage II who ended up choosing to have rad and chemo after surgery. I think the advisability of doing surery first, and the sense that there is some choice involved in what you do about rad, is a bit different for Stage IIs than for people in the more advanced stages (as in Gail's case) because it is possible that in some cases, based on the pathology report from the surgery, radiation isn't warranted. And surgery alone is less likely to cause permanent problems because the tumor is smaller.

One thing to be aware of, and I'm not saying this to scare you but just so you know, there's about a 30% chance that even though you seem to be stage II now based on CT scans and whatever else they've done, they will actually find some cancer cells in your lymph nodes when they do the neck dissection. Of course if they do, that wpould indicate you should have radiation. If they don't, it's a sign you might not need it.

However, even if you have clean nodes (I did) there are other aspects of the pathology report that some doctors feel indicate radiation and chemo. These aspects are things a lot more reliable than your age in indicating a more aggressive form of cancer. One is how well differntiated the cancer cells are (with poorly differentiated indicating more risk), one is the thickness of the tumor (and I don't know how thick is an indication of more risk--just that my tumor was on the edge of being too thick for comfort), one is whether there is perineural ivolvement or whether the tumor is growing around a blood or lymph vessel.

I had enough of these risk factors that when I went for a second opinion at Dana Farber in Boston (the number 4 CCC in the country), I was told in strong terms that I needed to treat the cancer aggressively and have radiation as well as chemo (it is now standard in Europe for people with high risk stage II to have rad and chemo, based on some good solid research, though it is not standard here yet).

Before that second opinion, though, I also got an opinion from the rad oncology team at Roswell Park (also a top CCC though not as high in the rankings as Dana Farber) and they were close to evenly divided about whether or not I should have rad. So if you are getting mixed opinions--which isn't uncommon for Stage IIs, I would definitely try to get a second opinion and try to get it from the best experts you can find.

From the reading I've done, there's not good evidence that young people with oral cancer necessarilly have more aggressive cancers. However, I do think there's a good argument to be made for treating the cancer aggressively, if there's doubt, when you are young and healthy simply because you want to live a loing life and you are strong enough to recover from aggressive treatment.

Make no mistake--the treatment is rough, I'm 2 and 1/2 months past and I'm still feeling pretty bad--but I'm young enough (46) I want to live many years and this was my best bet.

People will be ehre to support you whatever decision you make. My personal bias is that you should choose an aggressive treatment that gives you the best chances of never having to deal with this disease again.

Nelie

Karyn, as my high school Geometry teacher used to say "Well, guys and gals, that's all there are to it!" Welcome to the world of Faith, Hope and Scratching your head for the right answer

heh. That's very well-put, Amy! And congrats to your husband for doing so well on getting back to eating--that was really quick--I'm jealous, actually, though my time will happen eventually.

Nelie

Hi --

Even if Barry had just had tonsillar and base-of-tongue tumor (no nodes affected) they still would have recommended chemoradiation as they try to avoid tongue surgeries at Hopkins -- that's what we were told, anyway. They certainly do pre-radiation surgery, however -- radical tonsillectomies, neck dissections -- while we were told at Sloan they don't do that now.

So as they say -- you pays your money and you gets your choice...

Gail

Gail, I'm curious, is it *all* tongue surgery Johns Hopkins avoids or just base of tongue or cases where some sort of flap reconstruction is needed? Is it related at all to stage? I can see not doing surgery when its already a pregiven conclusion that the person will need rad., but this isn't true for Stage IIs.

My understanding from my ENT, and the first rad oncologist I saw, is that if my cancer had been base of tongue, I might have had rad recommended to me as an alternative choice because of the risks associated with the surgery, but since it was on the upper tongue, fully visible, and not anything that would most likely require a graft, even though it involved removing about 1/3 of my upper tongue, that surgery was considered relatively low risk for lasting problems with speaking or eating and much less likely to produce lasting effects than rad, so it become the first choice. This makes sense to me. I mean, it's hard to imagine advocating the radiation, even tomo., would have less longlasting effects than the effects I had from the surgery which were almost totally nonexistent two months after surgery.

Nelie

Nelie,

I agree -- I think your diagnosis and mine were fairly similar in a lot of ways, and I know without any doubt I've had fewer long-term effects from the surgery than from radiation. While I lost a portion of my tongue, it wasn't so much that it seriously affected my eating or speech, and most of the people who have met me since I recovered don't have a clue, based on visual observation, that I ever had this type of surgery.

Cathy

Nelie and Cathy --

I tagree, I think the surgeon was referring primarily to base-of-tongue tumors -- which they are seeing quite a bit, not ones on anterior part of tongue. They don't like to do surgeries which will compromise swallowing or speech. If the surgery would not affect this and allow the person to avoid radiation, I suspect they would do it.

When we see the surgeon again (this will be at the end of Barry's treatment) I will ask him.

Gail