Well, you guys may remember my post from Novenber or so. Had a petscan that showed lymph node reaction,but no tumor. Docs thought it may have been from strep throat. after a routine angiogram in december turned into a life threatening event, I did a follow up petscan in January that showed no improvement in node reaction, actually slightly worse. a biopsy on my subclavicular node was malignanat. there were a couple of tiny nodes in my chest that showed reaction and next step is a chest ct scan to see what the treatments will be. as of now the possibilty exists of chemo and possible radiation of my chest, then surgery. dont really know which way we will go. Guess we shall see. guess the good part is that I feel good and would never know it if wasnt for scan.

Tom,

So sorry to hear about the recurrence and the possibility of it being distant. Sounds like it is early days so more options for you.

Your case is a perfect example why scans are worthwhile post tx. The typical scopes are not going to pick up distant activity.

Please keep posting your update often. I am certain many here are concerned for you and want to offer encouragement as you proceed through some uncertain terrain.

Don

Tom,

I'm deeply saddened by your news. Like Don says, it's good your PET scan showed up. I really hate that insurance companies are not allowing these in so many cases lately.

Keep your chin up, sir. Please keep us apprised of your situation and know we are all in your corner.

This sucks!!!L hugs...

Tom, Im very sorry you have joined the recurrence club! A second opinion might be a good idea.

Please let us know whats going on.

Best wishes!

thanks all. this is basically the secod opinion. my local ENT referred me to a CCC in San Diego. was presented to tumor board on thursday night to inform me of the need for CT scan. Either way,fights back on.

Hi Tom, your case is quite similar to my husband's -- no symptoms were showing and we would not have known about the mets if it were not for a chest x ray his GP ordered. It has been nine months and John is still not showing symptoms but he is now in a clinical trial.

Sorry to know that you have to join the group and I wish you the very best moving forward.

thanks gloria, I guess these lymph nodes are still normal sized.just higher suv(7). I had 3 chest xrays and a ultrasound in the last couple of months due to cardiac issues and nothing showed as unusual. Just a pet, now having a CT this week. I wish John the very best and of course you also.

Tom-Your case sounds like my husband's a bit too (though he went right from primary treatment to lung mets). It has been 10 months since his mets were first found in hilar nodes of lungs. The mets were treated with radiation. Though additional mets have popped up, he still is symptom-free after 10 months, so that is heartening.

It has been good to be in touch with others going through this same thing. Feel free to PM me if you would like me to share our experience at our CCC (Johns Hopkins) and their approach to treatment.

Best,
Mary

Hello folks, got my CT scans results back today. Had a scan of the chest, abdomen and pelvis. Doc told me over the phone that the concern is a spot in the mediasteinum. Tumor board recomennds chemo and possible radiation at this point. gonna meet the CCC's medical oncologist to discuss plan. At least there is a plan.( just want a fighting chance.) The ENT oncologist explained that there is also some brand new stuff they want to talk to me about. I guess this is mediocre news since I knew from the petscan that there was uptake in the nodes. obviously wanted to stay away from mets to lungs, liver, etc. so thats a partial relief. dont wanna get to high or to low. Just wanted to let you guys know where I am at.

After reading my post it looks misleading. By brand new stuff ENT.oncolgist is referring to treatment options. Not bad stuff.

Hi Tom-
So the concern is the one spot (or spots) in mediastinum? No other concerning spots? Hopefully, the limited scope of the mets, combined with HPV status means they are thinking of trying to zap it with radiation.

Keep us posted. We are all learning from each other.

Best,
Mary

Could your ENT oncologist be referring to drug trials?

Not sure, meet with M.O. on Friday. Will let you know.