I had the "second opinion" appt with the local cancer center. The oncologist feels that a wait and watch of the severe dysplasia is a better option than radiation. He feels (after speaking with my ENT who performed the surgery) that radiation would do more harm than good, i.e. lost teeth, loss of salivary glands etc. The severe dysplasia is too close to my jawbone (under my tongue) - so they couldn't remove that tissue surgically without removing bone. The ENT thinks that another surgery, in about two months, after some of the tissue grows back, may be warranted. Oncologist also says that radiation is a "one time deal" that once radiation is performed on an area, you can never use it on that area again. Any thoughts on this? It seems to me that all of these opinions are subjective. Does anyone have any experience in decisions like these?

Thanks in advance - I love this group!

Jenn,
My RO Docs were ambivalent about post op radiation. My ENT Doc said I didn't need it, that we were going to be doing checkups every month and would keep tabs on things.
The decision at this fork in the road is the hardest one I have ever made. I ended up reading all the research papers I could find online, hearing the doc's opinions and the rationale behind those opinions, and going with what I thought would do me the most good and the least harm. (I didn't have to use that heads/tails decision making tool after all!!)
Although many on this board will worry with me over my decision not to radiate right now, only Time will tell me if the decision was the right one!

Best wishes for a full recovery,
Andrea

Same wishes to you Andrea - this is a very difficult decision. My biggest worry - is that the cancer will spread (even though I'll be seeing my ENT monthly.
How do you feel? My partial glossectomy was and still is a pretty miserable recovery. They took a good bit of the tissue on the bottom of my mouth - yuck and pretty painful. I can only imagine how painful your recover must have been - and probably still is...

Blessings,
Jenn

Jenn, if you talked to an oncologist at a CCC, I think this is an opinion you can trust. Was this a radiation oncologist?

It's more or less true radiation is a "one time deal" although the RO at Dana Farber I saw for my second opinion said that re-irradiaiton can be done without much damage after (15? 16? 18? 20?-somewhere in there -I am forgetting the exact number he gave) years (which I found interesting, that's the only place I've heard that). But the idea is, if you have tyhe radiation, hopefully you have lowered your chances of having a recurrence substantially so you won't NEED it again. There's clear data that indicates that the odds of treating a recurrence successfully with rad are much lower than the odds of treating it successfully the first time. But its hard to figure out what those odds mean for an individual decision since by definition if you get a recurrence you may have a more aggressive kind of cancer than the people who don't get one.

Again, if you saw a radiation oncologist at a CCC, I'm sure this recommendtion that you got is a good one.

Nelie

Hello Jenn,

It's a tough decision you have to make. I've been told to hit this with everything you've got the first time. It is a very unforgiving diaease. I hope in your case the decision you make is the right one for you. All my best,

Danny Boy

Hi,

Is there a definitive way to tell how aggressive the cancer may be? I am quite concerned that we will end up "chasing" this cancer. Even though we had an early diagnosis and treatment - I'm really scared. I have a three year old daughter, my sweet Madeline that depends on me - daddy is great and she loves him dearly, but it's not the same as Mommy.

Jenn

"Is there a definitive way to tell how aggressive the cancer may be?"

I think you need to ask an oncologist about this--preferably one that specializes in oral cancer.

oops. I let too much time go by to edit that last post but it needs editing so let me try again:

I will add that my impression is in medicine there is no "definitive" in terms of predicting future outcomes. It's all about what happens on the average and there is no way of knowing for sure if you are the average or not.