Hello everyone,

I recently got a finalized recommendation form the doctors at Anderson. After considering my case very carefully, they did NOT recommend radiation for me.

Basically, every single doctor I spoke to (including Dr. Jeffrey Myers) argued that a tiny speck of malignant cells in one sentinel lymph node (less than .1 mm) simply does not warrrant radiation. I was also told that there's not much data on patients with micrometastasis on one sentinel node like mine. This is because the techniques to even find any micrometastasis is no more than a year old. In other words, up until last year, they would never have found any malignant cells in my lymph node. There IS, however, plenty of data on patients with one ENLARGED lymph node. And among patients with one ENLARGED lymph node who NEVER underwent radiation, the five year survival rate is 85 percent. Taking this into account, they told me that any chance of recurrence for my case is highly unlikely.

Another thing that makes them confident about their recommendation is that I had a "mapping" of my lymph nodes before surgery. Basically, they injected my tongue with some sort of nuclear dye which mapped out how my lymph nodes "drained." This basically enhanced their confidence that any traces of cancer were removed and that I should be ok. Furthermore, I was told that getting radiation once would prevent me from getting it again in the very unlikely event of a recurrence. So, by all accounts, they were pretty adamant about avoiding radiation.

One of the doctors even mentioned that Anderson is considered among the most aggressive cancer centers in the country. Therefore, if they don't recommend radiation, I can be sure that I don't need it.

At this point, I've personally spoken to eight doctors in two different CCC's, and these doctors have consulted with other doctors about my case. All seem to think that radiation is unnecessary for my particular case. So, I'm happy to report that I will simply close this dark chapter in my life, hope for a healthy future, and resume my normal life.

I wish everyone all the best.

Gino

I'm glad that you've found a good answer to your question from one of the best locations in the world to know what's what. We all wish you a healthy and happy future. Don't be a stranger to the boards now that you have this answer.... you can be a big help to people coming behind you down the road.

Gino,

I'm very glad you got that happy answer from some of the best experts around. I also hope you will stick around and provide your experience when necessary for new people who come here. I've been hanging around here for a year now and one thing that I've noticed happening here is people who don't go through rad tend to not stick around as long (since the support going through radiation is when many people really seem to find this community invaluable and also those of us who go through radiation tend to struggle more to return to a "normal" life after), and then when someone like you or Amy M shows up, the responses you get are from folks who weren't necessarily ever in your particular shoes. So please do check in once in a while!

Nelie

I will certainly stick around! Hopefully I'll remain healthy and will become another source of support for people here. In fact, I see this as an ethical obligation, which I'm very happy to fulfill.

There's one other piece of information I wanted to share with you guys. Namely, the whole notion that young people with oral cancers tend to be at a disadvantage compared to older patients is simply not true. This was told to me by the folks at Anderson. I heard this assumption a lot on this board, and just wanted to set the record straight. It turns out that more and more, the people at Anderson are finding that many young patients (i.e., people under 40) do very well--no better or worse than the older patients.

Gino

Congrats Gino, We wish you well.....
Darrell

You know, I *thought* I recalled reading an article about that that found no difference in outcomes for younger vs. older patients. But wasn't it your own doctor at the other CCC that told you that it was often a more aggressive disease in young people?

Just curious also what you found out about how being a smoker for so long affects your risk....

Nelie,

Yes, I was told by one doctor at the CCC where I was treated that he had seen particularly aggressive cancers among young non-smokers. It turns out this information was simply anecdotal--something that he later emphasized when I asked. Let me reiterate, however, that I've also seen a few people on this board mention that oral cancer patients are particularly disadvantaged when they are young. I just wanted to clarify that this claim is unfounded.

About the whole smoking ordeal, I also asked this. Yes, having been a long time smoker does carry some significant risks. However, I was also told that quitting smoking greatly decreases the likelihood of a recurrence (something we all know).

Gino

Although, very skeptical of posting this; I too, got the same recommendation as Gino from the James Cancer Hospital at OSU- no radiation. According to our doctors, it turns out - the risks are more harm than good in someone in their 20's and 30's for long term side effects and the possibilities of bone necrosis and other things including developing a new cancer caused BY the radiation.

Gino and I have been in constant communication over this issue the past week or so, and I think we are both comfortable with this decision. Although, risk of recurrence is low, and let's hope it doesn't happen, if it does - I'd hope no one would ever say "I told you so", b/c truth is, no one can ever say for certainty that anything will or won't happen in the future.

If I've learned one thing the past two months - it's that cancer has no certainties or guarantees for anyone. There is nothing that is 100% proven for every case or person, as every case is different, requiring every treatment plan to vary from one to the next.

Amy and Gino,
I'm very, very happy for both of you that you are comfortable with your decision and that you get to avoid radiation. I will continue to pray that you stay cancer free.

Now, I would like to remind you both of something. You came to this website seeking our advice, asking us questions. We offered that advice to the best of our knowledge. For Amy to suggest that any one of us would say "I told you so" is insulting. If anything, I feel as if both of you are playing the "I told you so" with all of us. I can promise both of you that none of us make up or invent the knowledge we impart. Please don't be so quick to try and tell us we are wrong. Neither of you have even made it past the first road block, while most of us have traveled this road and lost many, many friends along the way. All of our advice was given with the best of intentions.
Again, I am thrilled that you can avoid radiation and pray that cancer will leave you alone!

I'm sorry my post sounded like that. I in no way, meant to come across that way. Please accept my apologies.