I am overwhelmed by all the helpful responses. Thank you all - what a great board this is.

nancyt I am really fortunate to have 2 sisters in Toronto, as well as my parents, so at least I will have some family to lean on.

Eileen you must have known how much I would have needed to hear from someone whose diagnosis closely parallels mine.

My ENT had in fact recommended a PET, but the oncologist in Toronto decided against. Apparently it is still a controversial test (at least in Canada). He was very familiar with it (they have a machine at the hospital in Toronto)
and seemed to be speaking from a good knowledge base.

I have not had a chance to discuss my CT results
with the ENT yet. Was supposed to see him today, but Hurricane Ivan conspired to pospone my appointment.

The only area of possible concern (as far as I can interpret) is "an area of soft tissue assymetry in the larynx anteriorly at the glottic level", which the report says is "of uncertain significance". I am keeping my fingers crossed that it is not significant.

Kirk Georgia, I had not really considered Miami initially, but if Toronto falls through (see Mark's comments)I may well be contacting you. I do have some contacts there (old friends), one of whom is a doctor. Also, my ENT is US trained and may also have some contacts. The downside is the cost, as my medical cover through my work is not very extensive, and the lack of family support.

Uptown, thanks for your welcome. I'm so pleased to now be a member of the "club nobody wants to join".

Best,

tower

Hi Tower,
Me again. You will also notice that I had a what they called a 'new occurence' 4 years later that involved my larynx. A tiny tumor at the edge of of the opening of the esaphageal opening. It was hidden in a fold of tissue so they were unable to diagnose it even with CT scan even though I was complaining of voice change and occasional pain. Had they put me under anethesia so they could have looked throughly, they would have seen it sooner and maybe I wouldn't have had to have the laryngectomy. I had had symptoms for 5 months but then I had been healthy for 4 years. I see Drs every 3 months, dentist and perio other months.

Whatever, I still alive, working a full time job and trying to manage two 90 year old parents in Florida. I survived this twice and plan to do it again.

Email me if you have specific questions.

Take care,
Eileen

Tower, The fact that you would have family to support you is big. The emotional and psyical drain as you progress through treatments is at times pretty tough. Having family to help is a big plus.

On the subject of PET scans, the industry is coming around faster and faster. In our area PET scans can only be done by a traveling machine. Just recently plans to build one in my city were announced. We have a very good medical system that is sometimes slow to come around. My casual (non-professional) opinion based on many folks here at OCF, is that PET scans are quite accurate at showing that cancer is NOT present (within detectable limits). Where the controversy comes up is in that there are reasons that false positives can show up. Other than cost, I cannot understand why such a tool would not be used in the fight.

Take care

Great news! I have been accepted as a patient for rad therapy in Toronto! They will advise me as soon as a date is fixed.

Also saw my ENT today and he has confirmed my panendoscopy (as well as a tonsillectomy) for the 13th. He did an even more thorough examination of the oral cavity and still could find nothing.

He thought the soft tissue asymmetry in the larynx was probably not an issue but will still take samples for biopsy just in case. The oncologist in Toronto concurs (quite independently) with this. Gives me some added confidence in the ENT for sure.

I know that my CT and MRI did not show certain areas due to the extensive dental work I have had in the past (hardly a tooth left without multiple filings). Presumably the panendoscopy will help by eliminating (or confirming!)any areas that did not show clearly.

I am a little concerned whether I may have to have major extractions done before treatment.

That concern can be dealt with in the next little while, however. Today I will just concentrate on "doing the dance of joy" at being able to source the best possible treatment.

Thanks again to everyone for all their thoughtful comments and advice.

Best,
tower

Things are looking good for you, Tower!

On the dental front, I, too, had a lifetime of fillings in every tooth. Some marginal ones were extracted prior to radiation, but several did not come through the rad well and had to be extracted post-rad. This involved hyperbaric treatments, which are not painful, but are very time consuming and available at only a few places, followed by implants. If I had known before what I learned later, I would have chosen to have more teeth extracted earlier. Bottom line, see a dentist who is familiar with radiation for an evaluation of the health of your teeth.

Having your family close will help a lot as you go through treatment. I am very happy that this is working out so well for you.

Joanna

I have advocated keeping all the teeth you are able to. Eating problems are made worse by having no teeth. Joanna has given good advice; seek dental advice from someone very familiar with radiation and don't let them take teeth without very good reason!

I still have every one of my teeth including wisdom teeth (of course you know why )

I think it is good they are looking at a possible tonsillectomy as well. My tonsil cancer was not visable during the usual visual exam, even though it had spread to 3 nodes.

I pray for your speedy recovery!

I agree that it's worth trying to keep all your teeth. Shortly after my diagnosis, when I was going through a series of consultations with oncology specialists, one of them told me in a rather off-handed way that I might have to have several teeth pulled before radiation. That came as a bit of a shock, and I continued to pursue this point with other doctors, who finally concluded that it really wouldn't be necessary in my case. Today (15 years later) I still have all my teeth.

Cathy

I agree with Mark and Cathy about keeping your teeth if it is viable to do so. When I had my first dental workup (with a dental oncologist I might add), he first advocated pulling ALL of my teeth! Then he changed it to only the molars in the radiation field. After much research and consultation with my regular dentist I politely declined any of it. All of my molars have crowns and filings. Unless you live on a remote island and have never been exposed to sugar you have crowns and filings. I believe that it was Dinah who said something to the effect that the worst part of her experience was having her teeth pulled.

There is a darker side to this and like what happened to Joanna, if your teeth are compromised then you may have more difficulties down the road. There is a 10% risk of osteoradianecrosis. If your teeth have been well maintained and you don't have gum disease then you need to carefully consider your options. There is more information on the dental aspects elsewhere on the site.

You must willing to go to great lengths to maintain your dental hygiene if you keep your teeth. At very least you will need dental trays, constant flouride treatments, cleaning at least 3 times a year (and you want to insure that your hygenist actually cleans below the gum -some do not), daily flossing and a WaterPik and Perio Aid (for cleaning the gum line) aren't bad ideas either. You also have to do all of this while going through and suffering with RT.

As far as the tonsillectomy goes I just presumed it was a no brainer that they would take them out but my RO said the radiation would do it (and it did along with my Uvula and other parts of my anatomy). I had a pretty good sized tumor hanging off the right tonsil. It was literally choking me when I was laying down. I did receive my treatment at one of the leading comprehensive cancer centers.

So many decisions- so little time.

I agree with those telling you to keep you teeth. Plus you don't have time to heal from the surgery and it will only delay your radiation more. I foolishly did not go for a second opinion and allowed them to pull all my rear teeth. Once the dentist that made my partials saw my xrays, he and my periodintist told me that the teeth should never been pulled. It was a year and a half before before I got partials. The fact that I have no rear teeth also means my bottom teeth are now chipping away at my upper teeth front teeth causing me to have to have these capped. Definately get a second and third opinion if necessary. Besides floride trays daily, I see either periodontist or dentist every 2 months for cleaning. Perio also cleaned by teeth every 2 weeks during radiation.

Take care,
Eileen

Hi

Results from my panendoscopy are in, and they are all negative, which would indicate an "occult" primary.

This is good news in many ways (I think?), but not necessarily so from a radiation treatment standpoint.

It seems as though my cure is going to be far, far worse than my disease has been, at least up to this point. Although I am determined to follow the advice of my radiation oncologist, I can't tell you how tempting it is to postpone the damn radiation, and just monitor things instead.

I feel as though I'm about to step into a whirlwind, where I will lose all control of my life for the next few months (at least), and I'm scared s---less that I won't be able to step back out and be able to put it all back together afterwards.

Sorry to be so negative. I know, when all is said and done, that I am more fortunate than most on this board.

On a lighter note, it's been 10 days since I had my last cigarette. To be honest the tonsillectomy has made it a bit easier, but I still feel pretty good about quitting, and hopefully I am over the hump.

Can anyone give me some idea what radiation treatment I may be facing, and how soon after treatment I might realistically expect to be able to return to work (and be productive).

Thanks,
tower