Quick update with some good news:

The clinic here at U of Wisconsin Carbone CCC is amazing. They got me into a full-body PET scan yesterday afternoon. My surgeon called at the end of the day to answer some questions I had phoned in, and told me the scan results came back with no distant metastases. So I'm happy to add the "M0" to my diagnosis line. And this preserves the TORS surgery option, which is looking better to me all the time. I see the RO tomorrow for another opinion, and to consult about follow-up treatment for after the surgery. With any luck we'll have a treatment plan decided by the end of the week, with a possible start date as early as next week. We can't move too quickly for my tastes.

By the way, they gave me some Valium (10mg) to relax for the procedure. I have to say that was pretty good stuff and I highly recommend it. For the first time in over two weeks I wasn't worried about anything. At least until the final four minutes of last night's Duke victory over our beloved Badgers in the NCAA finals. :o(

Glad to see your PET results ... sorry about the Badgers.
Maria

Another update - and Decision Time.

Hi everyone. I met today with the RO. He predicted equal chances of success with surgery followed by radiation, or a combination of radiation and chemotherapy (cisplatin). For the post-surgery follow-up he would administer 60 "units", OR 70 without surgery first.

The RO is worried about the possibility (from the CT scan) that cancer cells may have escaped one of the infected lymph nodes. In that case he would add cisplatin to the radiation follow-up. For that reason I think he favors just going with radiation and chemo (to avoid having to use all 3 forms of treatment and suffer the side effects of all of them). But the only way to know if chemo will be required though is to have surgery and get the pathology report. So with surgery there are 2 certain and 3 possible treatments, and with RAD there are just the two.

I still feel like TORS surgery is the best way to go, and we decided on that during the consult. In the event that there have been escaped cells, they�ll do the cisplatin at a relatively low dose (40mg) 1x/week for the entire 6 week radiation treatment. This seems to be the advice from others here in the forums who've had it both "big bag" and metered out more gradually - at least in terms of side effects.

Radiation To set up for this will take about 4 to 6 weeks after surgery, including a week to plan the precise treatment plan. I am figuring that surgery will happen sometime between April 13 and April 24, this would put the start of RAD in late May, with completion around end of June or first week of July.

My RO is a fan of the PEG tube insertion, particularly if we have to involve chemo (he says the last 2 weeks of RAD are pretty rough and very hard to get things down). My surgeon is not so much a fan, because he thinks there are better swallowing outcomes if patients are forced to do that during treatment. I guess I�ll leave the PEG decision until after surgery when we get the pathology report. I�m inclined to forego the tube unless chemo is involved.

On the mental side, the more I learn the better I feel. Part of that is that every doc I�ve seen so far has used the word �cure�. The surgeon said 90%, and the RO said 80% today. Why not me then? And the more I learn, the more confidence I have that although it won�t be pretty, I can do this. It is sure going to be an interesting summer.

So -- what are your reactions to above, particularly with respect to the surgery/RAD approach, use of PEG, and what to expect with side effect symptoms, durations, and long term prospects? I have read a *lot* of this already on the site. Guess I'm just looking for a little reassurance. And thanks.

All that I have read suggests that surgery is the better option. TORS surgery is literally cutting edge, isn't it? And it looks as if that type of surgery will require much less hospital time. With luck you might not have to have chemo which I understand intensifies the effects of the radiation.

But all of this is doable.

I was never offered a PEG but used a nasogastric tube until my mouth healed. Could that be a middle way? (Other people here are very knowledgeable about the PEG.)

Having a well thought out plan of action is very reassuring for cancer patients and it sounds as if your doctors are onto it:)

Best wishes.

Hi again. Things have moved along pretty nicely and we have surgery scheduled. So I figured it's time to move over to the "Currently in Treatment" forum. I've put the whole plan as I know it into a new post there.

You guys have been great. Thanks much for all your encouragement. I feel prepared.

Welcome. It was just last year my stage 2 oral cancer progressed from 2 to stage 4a and turned into oral neck cancer. It's been almost an year and both scans been clear. I have no signs of cancer in my mouth or in my neck. It's been a rough year but with my faith in Jesus and good hospital care. I am very much alive and doing well.

Btw... I expect to live to be old! Very old. And so should you! The way you think and act will determine a lot.

Warm welcome!
Kimberly

If you have any questions... Please ask. I'll be happy to help you!