My RO was very stingy with pain meds as well. I had much better luck speaking with the MO for those. The MO is typically the PCP when going through treatment.

I was given a figure of less than 5% for unknown primaries. No, they don't know what area to radiate, although in my case they did suspect that the site might have been the back of my throat, so they radiated everything from the bottom of my earlobes to my armpits. This was XRT not IMRT.

Take care,
Eileen

Anne, my cancer had metastasized to two of my left neck lymph nodes. They irradiated everything from my jawline to my clavicle on both sides to be sure. Guess they figured that would take care of the primary (?) as well as any rogue cells the scans and triple endoscopy didn't reveal. In any event during my neck dissection my surgeon found no growth beyond the nodes - no extra-capsular spread I believe is the term - which in turn led my MO to conclude that radiation alone would do the trick without chemo. For which, needless to say, I was grateful.

As far as the PEG/no-PEG issue, my RO suggested to me before we began that if I applied myself she thought I could get through it without one. As I'd just had a major complication during the second surgery (the dissection) in which my neck began to swell and bleed in Recovery, necessitating a quick return to the OR for an emergency tracheotomy, and which my surgeon surmised might have been caused by a bad reaction to anesthesia, I was understandably a bit reluctant to go under again right away for the PEG procedure.

Once I got deep into treatment and discovered how nearly impossible it was to swallow even liquid nutrition I kind of wished I'd gone with the PEG and damn the torpedoes. But of course it was too late by then. I would advise anyone entering a course of RT to this part of the body to seriously consider the PEG!

And Eileen.... interesting that you heard 5%. It's always possible that my brain was asleep the day my doc gave me the higher figure.

D Who Is Not The First D

David,
I was given that 5% number in 1997. It may have increased since then, but I doubt it is as high as you heard. I was told it was rare. I also had no chemo and no peg.

Take care,
Eileen

The figures for an unknown HEAD AND NECK primaries are very very low but for cancer in general they are quite high.

The radiation plan is developed by mapping the nodes with SCC and adjacent nodes in those node chains back to all probable primary drainage sites. Then "fields" were established for the probable primary sites and those fields received Radiation along with the nodes.

MD Anderson CCC has led in the research and development of the treatment protocol for unknown OC primaries and recently found HPV as a major cause, so NCCN guidelines now require testing of the lymph nodes for HPV.

Don, read your post with interest. There seem to be similarities between our cases, with a few key differences (I'd had my tonsils out as a child, also had no PEG). I however had standard IMRT to your Tomo... which according to what I've read is state of the art.

How did it affect your swallowing, etc.? I've still got a lot of dry mouth 10 months after the end of RT, although it certainly has gotten better (I'm guessing somewhere in the 20-25% range, near as I can estimate). But I'd heard that Tomotherapy was much better at sparing the parotids. I also got a bit thyroid zapped (my TSH was measured most recently at 6.35) so I'm taking Synthroid now. Did your RT affect yours?

Should be very interesting to see how this disease is treated in 10 years!

Thanks,
David II

David II,
I was told it takes a year or so for the salivary glands to fully heal. It does seem that point&shoot IMRT is initially harder on them.

For me dry mouth is not an issue and it was never real severe. In most cases Tomo's fan-beam arc delivery will spare all the salivary glands (with proper planning of course). I had a paper on how they do this, but I can't find it, so as best I recall the trick is to keep 75% of any Salivary gland under 20gy.

My TSH has not significantly changed, but I do have some throat constriction (noticeable when I eat rice or peanut butter). Otherwise I don't seem to have any significant side-effects.

The tonsillectomy was the worse. They really took a lot of real-estate. Thankfully I was hospitalized.

Don, glad to hear you're doing so well, side effects wise. Or non-side effects as it seems to be. I had heard about the Tomotherapy but went with what was available here. Hindsight and all...

Like you I have the throat constriction/esophogeal narrowing. Last summer there were also a couple of occasions where a web grew across it and blocked it quite extensively. I still go in for dilation every few months, which doesn't seem all that uncommon from what I've read here.

Good luck to you and continued good health!

D2