Well here it is July 12th. It was just a month ago that I got my DX. My RT that had been scheduled to start next Monday has been push back because their IGRT Tomotherapy machine broke down.

Yesterday was to have been my last pre-RT appointments starting with my MO, then across the street to the Cancer Center to schedule a time next Monday for my, now delayed, first RT. Next building over - the Dentist (Prosthodontist) for training with the teeth molds and fluoride, then once again around to the back lot offices of the Dietitian � Infusion Services to make sure the PEG was ok.

Well � big change - the MO told me that, after some outside collaboration they (the team) had decided at their weekly treatment plan review meeting to not give me Chemo. He said my cancer is microscopic at best and the RT alone is effective on any cancers that small. He mentioned my somewhat-diminished kidney function and not wanting to unnecessarily do anything that might farther degrade it. The HC standard platinum based chemo regiments are hard on the kidneys, but they have told me numerous time that there are alternative and this is manageable. Now he is saying after their review of my case that they have concluded a chemo regiment is not necessary since cancers were only detected in two small lymph node (< 2cm) which were removed (along with my tonsils :<) and there is no detectable Primary and they have found nothing suspicious.

This MO is not easy to talk with, but my RO seemed to prefer him. They are co-located in the Medical Complex with the CCC and this MO is a designated in-network provider for my HMO group. So my case was move to him.

I asked him if microscopic cancer meant a better prognosis and he briefly looked up from the computer and somewhat emphatically said �yes � of course�. Then he told me that (despite no-chemo) starting in two weeks I will still be seeing him at least ever other week. He is probably a very smart guy. Very concise (spares no words), direct, can read, use the computer, talk (concisely) and type on the computer all at the same time (eek)!

As I understand the RT plan for HC w/unknown Primary it is to cast a large net, and I have been told that with today�s diagnostic tools HC w/Unknown Primary cases are quite rare but I don�t understand the difference as it would relate to microscopic cancer since it seems known Primary tumors are normally surgically remove along with any secondary�s before Chemo and RT anyway. So where is the difference? Isn�t any residual cancer in either case microscopic?

This is bothering me and I am not schedule to see my MO or RO until after RT starts.

Thanks

Don,

It sounds like you are with a cancer center with a multidisciplinary approach to your cancer Dx and Tx and while the chemos of today better the chances of killing the cancer cells, it's still the radiation that does the killing. While the Tx goal is obviously to kill the cancer a secondary goal is to not kill the patient doing so, so if they feel that you can do without the chemo and still achieve the desired results then that's better for you.

Many of us sought out second or more additional qualified opinions and you can always consult others but in my humble opinion you sound like you're in good hands.

Hi Don,
I'm the unknown primary from 1997 and I had no chemo. The second cancer I had 4 years later was most likely a result of damage done by the radiation not because I had no chemo. They didn't feel chemo would increase my chances enough to offset the side effects.

Take care,
Eileen

I came across a old post with this link: http://www.nccn.org/professionals/physician_gls/PDF/head-and-neck.pdf - great resource!

It had Practice Guidelines including for Occult (Unknown) Primary Dx and Tx.

My CCC multidisciplinary team seems to have done everything shown and then some before making that Dx (more than double teamed every step except I am not sure if they tested me for HPV & EBV).

Anyway when the Guideline comes to "Definitive Treatment" Surgery followed by RT "OR" ChemoTherapy/RT is recommended.

So I am stilling going to ask "precisely" why they are just going with the RT.

Also the RT regiment for an Occult Primary seems to depend on the Level the Lymph Nodes were found. First time I have heard of Levels. I am not sure but I think the swollen one would have been at Level I (<2_CM). The PET scan found the other nearby but smaller(<.5_CM). I will have to ask.

I also came across an article that said due to improved Dx, true Occult Primaries now account for 3-4% of all cancers and less than half a percent of HN cancers. It went on to say in HN cancer they believe about 50% of the time the Occult Primary will re-appear :< (eek!).

You sound like a guy that has a lot of the gumption it takes to beat and survive. It sounds as if that team of Drs agree as to treatment. I bet they know what they are doing and don't want you to undergo unnecessary treatments. Good luck and keep us posted.