Thank You Brian
It's been tough at first but this web site has helped a lot. The people in here are fantastic and have been a good inspiration and a great friend. I don't post much but I like to read and I will try to give back and help out as much as I can in the future. Getting back to a normal life is a milestone, putting this behind me and not having to go to doctors, tests anymore is my goal.
Now its time to watch the kids grow up!
Thanks Again
God Bless
Ray

Hi All,
I've not posted for a while but have been following your messages. Good luck Raymond with the surgery, you'll be back to form in no time i'm sure.
I have the enviable option of radical neck dissection to the right side but only if the left nodes are not active! CT scan shows nodes have shrunk from 4.5 cms on the right and 16mm on the left (clavicle) down to 11mms each. Nobody can determine whether they are still cancerous and active (although they haven't grown at all in the last 2 months) or not as they are too small to biopsy.
The jury is still out on the value of having a PET scan done to try and decide on a course of treatment. Does anybody have any suggestions? My radiologist is lukewarm about having a PET scan as she feels there would be more questions raised than answers given i.e. that it has "possibly spread to lungs already" as suspicious left nodes were so low down and that treatment is not possible with anything but palliative chemo later on. My surgeon however, feels that a PET scan might determine that the left side is ok and that salvage surgery to the right might then be valuable. I don't want to dither and miss the boat but it seems to me that the lymph nodes responded quickly and almost comlpetely to rad/chemo and that i'm just left with scar tissue but who knows?
I finished radio on 21st March and would like to reasure those of you who are just finishing up that 4 months on i feel almost "normal" except for dry mouth and a little tiredness, hang in there!
Many thanks for listening and for being there,
Frances
PS Does anyone have advice about whether to leave unused tube in - just in case? Doc is reluctant to remove in case i'll need it sometime in the future but i haven't used it for months! Apparently it's not so easy to put in a second time!

Welcome back, Frances. It is nice to see you post again. I have no answers for you EXCEPT about the PEG. I made an appointment to have mine removed and when I got there, was informed that I had failed to get the okay of the doctor. Told them "my tube, my body, my decision" etc., and they pulled it, telling me that if I had to have it put back in, it would not be any problem. So who knows? I know after not using mine for just a couple of weeks, I was most anxious to be rid of it. I am glad you are feeling so well, and hope you can get more information so you can wade through all the options with some assurance. I will vote for the scar tissue option!
Joanna

Hi Frances, good to know you are back to 'normal' so soon. Can't remember exactly the stage and type of your cancer. The size of your lymph nodes has definitely reduced significantly. I never had a PET scan and the team of doctors did not offer any surgery because they firmly believed that what was left was scarred tissue. The decision was made two months post treatment.In fact at that time I was prepared to have a neck dissection and had discussed it with my oncologist. His answer was a straight 'not necessary'. I trusted him and believed they had made the right decision for me. So far so good. I have no complaint.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Hi,
Thanks Joanne and Kareng for your encouraging replies - will persue tube removal this week - can't wait to do exercises again, for my abs and complaining back!It'll be good to start proper physical rehab and to get back to pre-treatment fitness although can't see it happening overnight!
Does anyone have any advice on post treatment follow-ups? So far I've had a CT scan 3 months after treatment finished (max radiation to both sides neck and 2 rounds of Carboplatin/5FU's) and a second scan 1 month later which showed no change but still "suspicious" area low down left neck. My radiologist wants to wait now until October at least - does a 3 month interval sound about right? I'm so worried that they might not catch a recurrence/spread soon enough to treat but from what she implies, there's nothing more they can do anyway - maxed out on rad and chemo. Huh, guess it's just one day at a time but i want to hear that i'm in remission. How can they tell?
Is it just a case of wait and see or is there something more concrete to go by?
Don't know if this makes any sense but i'll post it anyway!
Thanks for listening,
Frances

Hi Frances,
Good to hear from you again. It sounds like things are going well. My field is in radiological devices and I (and UCSF) where I received IMRT treatment (I am a Kaiser Permanente member but they contract out radiation oncology services, hence the reason why I went to UCSF CCC for treatment) insisted on a PET scan. I was relieved that the only place where cancer showed up was at the tumor site. PET scans have become increasingly accurate and with new fusion techniques, i.e. Pet/CT, offer even greater accuracy. I have read reports of up to 98% accuracy. Your doctors knowledge may be dated or the HMO doesn't want the added expense of the test (they are a relatively expensive scan). They are also a very long scan so throughput also makes it more expensive. They also need to be close to a cyclotron to have access to the short half life radioisotope they inject into you.

I finished treatment (rad/chemo)in March and have been on a 6 week examination schedule with the oncologist, radiation oncologist and head & neck surgeon. I had a CT mid treatment and an MRI 30 days post treatment. I also had a chest x-ray (specifically to detect lung mets), also requested by UCSF. The Head & Neck surgeon has just moved me to 2 months, as he is happy with my healing progress. I meet with the other two doctors on Monday the 11th so I'll let you know the outcome. I have also still been getting an occasional blood test because my WBC has remained low and I take a maintenance dose of Diflucan so I have liver and kidney function tested periodically as well.

I can't comment on the PEG since I opted to go with the PEGless diet plan (sic). It worked really good - I dropped over 60 lbs.

I am not sure but I know of people who have been on chemo for years. Maybe you can't have the chemo you just had but here are many different chemo options. If you had IMRT you can have radiation again nearby (Not that I would particularly relish of thought of going through either one again). I also understand that the amount of radiation you had is also a factor. Sometimes they only give 60 Gy and can later add another 10 Gy if need be. You should know that number - ask your radiation oncologist.

The new ACS booklet has a lot of useful information about post care you can download or order it from:
http://www.acscsn.org/books/ or check out the thread in survivor stories.

As far as your exam frequency, they are probably following standard practice guidelines (or worse - insurance co. guidelines) for your particular tumor and staging but I would definitely ask. I was surprised that I was on 6 week intervals (originally they had told me 8 weeks). It was comforting and frightening at the same time. I get a little more comfortable each time however.