Hey Wendy!

Congrats on comming through surgery...You are ALREADY online and posting to help other people??

You are AMAZING!!! I want to return to OC just to hang with you and maybe some of your strength will rub off on me.

I like HOAG. I think it is a fine hospital.

There is an Oncologist there (in fact the head of the dept (Dillman I think) spoke to me about treatment options over the phone...GREAT GUY!

My sister's friend is an oncological radiation technician at St Josph's, and she has been a wealth of information and references...

I'll be praying for good pathology results from your surgery!

Are they looking for a primary? Do you have any diagnosis yet?

Be sure to ask for Dr Peter Chen at Hoag for radiation...He's the best there and runs the new TomoTherapy CT guided radiation device.

Please keep us all posted...

PAIN FREE!!!!

Last night I took one of the new Tylenol Extended Release (Exactly WHAT I asked for at the hospital when they told me no such thing exists!).

Boom. Slept all night long!!!!!!

Today I have ZERO pain. Some muscle tenderness at the base of my neck, and a slight tingle at the site, but no pain...

In fact, I haven't taken any prescription meds since 6:00 PM last night.

I just took another XR to keep it away while I am working today, but I wanted to let you all know.

I know I'm going to sound bi-polar, but if you could just see what a glorious day it is here today! I had my morning green tea on the new deck overlooking the indigo blue of the Pacific.

My parents are still with us but will most likely return to their So Cal responsibilities today.

Then Seth and I will be deciding on the next course of tx.

Love and hugs!!

- Michael

O.K so now we all want to come sit on your deck. Amy

I just heard from the surgeon with bad news on the path results

He said there were 3 nodes positive (of the 59 removed)

He also said that there IS perinural involvement (whatever that means), AND angiolymphatic invasion (again, not sure what either of these means EXACTLY), so I said..."that sounds bad.."

He said.."No, VERY bad..."

I asked about the cell differentiation and he said it looks like "Moderately Differentiated", which I am guessing is Grade II.

He said the path DID confirm clean margins at least on the primary.

So much for a beautiful day!!

:-(

Right lets stay positive.
Clear margins are good, 3 out of 59 is good, so hang on to the good side, thats what I'm doing at the moment, so I will light a candle for us both tonight...
Sunshine... love and hugs
Helen

tell me what's new with your struggle Helen?

Also, you don't have friends or family affected by the blasts today do you???

Michael, As I understand it, perineural involvement means the tumor has included some nerves or part of a nerve. Which means the cancer has more chance of travelling elsewhere through your nervous system. Angiolymphatic invasion means it has included blood vessels or small lymphatic pathways )again, this is my best understanding. Your doctor will have a better one). Again, indicating more of a possibility of cells travelling elsewhere.

It's definitely an indicator you should get the most aggressive treatment available. I had both of these in the path report from my tumor too, even though I didn't have any lymph nodes positive.

On another note, I just need to vent about this. What is going through a doctor's mind when you, obviouly worried and afraid as it is, say "that sounds bad" for him to reply "no that's VERY bad"? What possible good do they think they are doing there? Couldn't they just say, "yes, it's bad" and leave it there? Is there some *point* to increasing the fear that every one of us has of losing our battle with this disease?

My ENT has also said things like this to me (as in the last appointment when I said "I'm really scared of a recurrence" and he said "well you should be scared". Honestly, in what way was that helpful?

I am so confused..

How could you have had both of the same characteristics but have been Stage II?

I got the feeling that since I had 3 nodes involved I am Stage IVc or something.

Any ideas?

Michael, be very careful getting to hung up on stages and the like. Staging and grading is a very useful tool for physicians and very misleading to patients. Staging, for example, is used for phsyicians to communicate amongst themselves the behavior of different cancers. And because you have certain attributes does not necessarily mean what you and I would believe it to mean.

Take me for example. When I was orginally diagnosed, CT'd (twice) and biopsied (twice) everything indicated that my lesion remained in situ. About 24 hours later they decided the cancer was invasive and I had a hot node. So, I was, according to the charts a Stage III, locally advanced case. At the end of my treatment, I asked about this and was told that I was pretty far from that and would I please stop playing doctor!!

Remember this is your battle. To be fought on your terms. It will be as discouraging or hopeful as you choose . . .I know you will choose for hope!

Tim