Hello Tower,

It seems to me that the wait and moniter option in your case is the least likely of preferred options. I would continue to seek a third opinion so you and your doctors can come to a more definate DX. My cancer was poorly differentiated and was invasive into surrounding tissues. I had IMRT and from what i've learned since I think I should have had field radiation. Easy to second guess after my recurrance in the same area. What ever you decide I wish you all the best and hope they can better define what you have. There seems to be alot of unanswered questions regarding your dx that scares me. Tough to make decisions when you don't know what you have.

Dan

Hi Tower,
My original dx in 1997 was also an unknown primary with mets to 1 node in neck. Paniced, I opted for modified neck dissection and 36 general radiations treatments. No chemo, no peg. Neither recommended at the time. Did no research, just wanted it gone. It worked. But notice I had a new cancer 4 years later so could not have radiation.

For cancer, I always opt for surgery if it will not drastically impair quality of life. I want this out of my body before it does something nasty like get in the lymph modes and escape to the rest of the body. I was told that sometimes an unknown primary shows up during radiation. Mine didn't. For an unknown primary, XRT meant for me radiation from the tops of my ears to my armpits. I did not know that I could only have radiation to an area once in a lifetime. This can drastically impair salivary fucntion. Make certain thet put on Saligen or equivalent and don't let them pull your teeth unless you think it is absolutely necessary.

Like everyone else, I think your docs need to give you a better dx than what you currently have. At 17 weeks out, you are already in the 'wait and see mode' and that is not good if you already have a suspicious something.

Were it me, I get a third opinion within days or opt to have the surgery yesterday to find out what is really there. What are the downsides to having the surgery? If they are taking your thyroid, make certain you have a full thyroid test before so you know what your TSH and T3 uptake levels are. Getting this back to 'your' normal is very important after surgery.

Keep us posted as to what they or you decide.

Take care,
Eileen

why aren't they considering chemo?
i thought it was good for unknown primaries, especially metastatic.

'watch and wait' for this cancer doesn't sound good, unless you have other serious health issues, in my non-medical opinion.

Thanks for all the input.

I saw both the oncologist and radiation oncologist on Friday.

Bottom line - it was squamous, and as far as they are concerned most likely to be Metastatic Squamous Carcinoma from Occult primary lesion.

So radiation therapy seems the most logical course.

I brought up the point that IMRT seems unlikely to be prescribed unless a primary was found. The rad. onc. was quite insistent that I should not subject myself to the the normal radiation unless it was absolutely necessary (in an effort to save my salivary glands). He recommended strongly that I get a US opinion on the IMRT. He also suggested that the cost in the US would be similar or less than in Canada.

Gary, he mentioned that he knew of someone who had IMRT done at UCSF for around $100,000. Could the cost have dropped so dramatically in just 18 months? Does anyone have any current costs available?

I certainly would love to avoid frying my salivary glands if at all possible. However, realistically speaking, from reading the comments on this board and elsewhere, I see no indication anywhere that IMRT is currently being used where no primary can be found. Considering that this same rad. onc. is running an IMRT experimental program (I think for carcinomas of the oropharynx), you might think he would be in a position to know, but....??

I know it is a red tape nightmare for them to treat me at Princess Margaret, simply bacause I am not resident here and not on the state run health plan. I even asked the rad. onc. if he was trying to avoid treating me (he denied it).

Even if I start the process tomorrow it will take a further 3 weeks before I can start treatment (includes work-up time etc).

If not for the fact that I have so much potential caregiving resources available to me in Toronto (2 sisters, parents, a place to stay, and a place my wife can come to stay) I think I would be down in Florida at Sylvester, as KirkGeorgia has suggested.

I get the feeling that the caregiving may be quite crucial, however, and worth wasting another 2 weeks over.

My inclination is to put things in motion here to get the red tape unwound and in the meantime to try and get an opinion from Sloan Kettering or MD Anderson on the use on IMRT in my situation. I figure if it is being done, then the big centres should know about it.

Any comments or advice would, as usual, be more than welcomed.

Thanks to everyone. It's so nice to have somewhere to turn where you know you will get some honest feedback (even when it's something you don't necessarily want to hear).

Best,
tower

Hi Tower,
My HMO paid the entire cost of my therapy but UCSF sent me copies of the bills they sent to the HMO. My HMO doesn't have it's own RT facilities so it contracts that out. It was $20,000.00 for the programming alone. It was around $5,000 per treatment. I have an appointment with the RO tomorrow and I will ask what the going rate is. This is a public institution so they may have programs that I am not aware of.

You may want to check out DannyBoys thread about the consulting fees for MDACCC.

My workup took over a month and everything was put in the fast track. UCSF required a dental workup, PET, MRI, Hep C test and the HMO required much labwork (creatinine, TSH, CBC, STOG, liver and kidney function, etc. and a baseline hearing test for the chemo aspect of it.
Then there was the mask and the simulation, etc.

IMRT is usually not the Tx of choice for occult or poorly differentiated tumors.

If you are a good candidate for IMRT, based on the opinion of a CCC, then you may be able to preserve significant salivary function. I had IMRT and my salivary function has been steadily improving since the end of treatment. I even forget to carry a water bottle sometimes now.

OK, I saw the RO today and she told me that the bill they sent me did NOT reflect the actual amount that Kaiser paid them - it was closer to $30,000 (they have a package deal to provide TR services). I asked her if someone off the street came in what would it cost and it is in fact closer to the 100K amount that you were told about. If you don't own any real property or automobiles you can probably get treated for free.

Tower,

I am sorry to hear your recent news. Each time I hear that I can vividly remember the exact second being told myself and how heavy the load was. You are right in looking at everything and I believe the caregiver scenario is a very important piece of the puzzle. I am hoping you get all the information you need to make the best possible decision and get started on your treatment.

Ed