Hello everyone! My name is Debbie. I justed wanted to introduce myself. I am currently 8 months out of treatment. So far, I am cancer free. Next month I will have a scope done by my ENT and a CT scan done in December. I am currently following up with my ENT every two months and my Oncologist every 3 months. Still having some eating issues but will post on the proper forum. Well,I just wanted to introduce myself. Take care everyone.

Way to go and I'm glad you've found this site.

Hello Debbie, our time frames are not all that different. I will have my one year CT scan in January 09'.

Welcome Debbie -- You've stumbled onto a wealth of information, support and love!

Sounds like you are doing things right and I send you my best wishes for continuing to be cancer free!

I wanted to tell you that I recall being where you are now and it was a bit of a roller-coaster ride. You may already know all about it, or maybe your situation will be totally different, but I thought I tell you about my journey in case it helps.

After 8 to 10 months a teeny bit of complacency set in and I tended to be able to go hours and hours on occasion without thinking much about "cancer".

UNTIL, the follow-up appointment hit my calendar and BAM, back to reality...Then it became this undulating game of going to the Dr. having a scan of some kind and then the worst -- WAITING until the Dr called be back to discuss the scan.

I think the worst part for me, was (& is) waiting the several days sometimes to get the results.

Truth is, most all radiologist read "films" the same day or very next day and usually have at least a preliminary reading within several hours.

But, if your ordering Dr is busy with a big conference, relaxing vacation, or important golf game, you might not hear the results from him/her for several days.

After one excruciating Memorial Day weekend, where I had the scan on Thurs and didn't hear anything despite SEVERAL calls to the office, until the following Thurs, I decided to take matters into my own hands. (It was clear by the way:)

I bought my own MRI machine for the home and....

JUST KIDDING -- Sorry.

Actually, I asked the Dr if they could put My fax number on the order for scan and then I would get an immediate copy of the results via fax at the same time as the Dr.

He for SURE did not want to go along, but eventually, I got him to agree. He said all the blah, blah, blah about HIPPA, and how a Dr must interpret the results, etc etc

NOW, this is not for everyone and it is very scarry because, if you haven't found out yet, you'll learn that the radiologist use vague language and are never real upbeat about things (I think they are protecting themselves a little)...They say things like:
"While possibility of disease in this area exists, at present the finding is undetermined".

That's probably one good reason not to have the copy yourself since it is daunting to read things like that.

Scans themselves are fairly useless in the real sense anyway. I've read some studies that show no longer life span for those that get regular scans at fixed intervals than those that don't. Plus, the emotional roller-coaster leading up to the scan and waiting for the results can't be good for our immune systems, endocrine systems, etc. Most scans have a resolution that can not really detect cancer cells until they are approx. 10cm x 10cm. (I think) That's a topic for another thread and has probably been discussed at length.

You'll discover, if you haven't already, that radiation creates "hot spots" that appear similar to cancer cells in scans, so depending on who is reading the scan, these can be interpreted differently.

The most value comes from being able to compare scans over time to look for abnormal cell development and changes that might be consistent with cancer.

This is why trying to have the scans done at the same institution is a good idea (and I even go so far as scheduling on the same week day each time (thurs.) in hopes that it will be the same Dr reading it (so far it has been about 75% of the time).

Anyway, I have rambled WAY to much in an off-topic rant that should probably be deleted anyway :-)

Debbie

WELCOME to OCF. With 8 months done, the Best is yet to come for you.
Now that you joined, let me assure you that David does NOT get a kickback from Carnation for every case of VHC sold and I receive nothing from Biotene, not even free samples. Yet we both are pretty high on each product.
Glad to see you're getting a CT instead of PET scan because the latter is more trouble than it is worth IMO. All my MRIs and CTs post TX came out clear, it was only the PET scans that caused needless worry and fear.
Looking forward to reading your all clear posts in December

Michael -- I agree with much of what you said, particularly the comparison views over time. I had one of those new-fangled Body Scans a few years ago, and it showed some tiny nodules in my lungs. I had CT Lung scans every 6 months for 2 years, so that they could rule out anything nasty, and it was the comparisons that enabled them to do this.

My ENT/Surgeon and my RO do a real thorough examination of my neck, oral cavity, throat and tongue every time I see them. My MO does a more cursory check, but also does CXR every other visit, and blood work every visit. Now that I am past one year, I see each one every 3 months, but I stagger them so that I never go more than 6 weeks between visits. Last year, I never went more than 4 weeks between visits.

Both my RO and Surgeon say that they can tell more by their physical exams than they can through PET/CT, again due to the false positive issue and knowing my particular case and the tissue changes that I experienced due to radiation and neck dissection. Predictably, it was the MO who ordered the PET scans.

They are one piece of the puzzle, but only that. BTW, the PET can discern masses equal to or somewhat smaller than 1 cm (10 mm). However, it is the metabolic activity that it detects, rather than the size of the lesion, that is the good news/bad news of the PET scan. Good news because cancer cells have increased metabolic activity, bad news because so do non-cancerous cells that are involved in infection, scar tissue etc.

Thank you everyone for such a warm welcome and information. I have been brousing through all the different topics and responses. Sooo many things, I can relate to. What a wonderful site. Thanks for the support! Take care. Debbie

I always get a copy of the scan, be it CT, PET or MRI -- Right now I have five CTs, two PETs and one MRI on CD and in my laptop -- Up until yesterday, they were free (I ask the tech doing the work), but then UW Med Center charged me $13.50 plus tax...

I am getting better at looking at the scans, now that I have one CT/PET with actual cancer on it (Couldn't see it on the contemporary MRI, however).

Debbie, take some time to scan the back posts and read the site stuf to really get some info.

Welcome to OCF Debbie!

Congrats on your cancer free status. Difficulty in eating is very common around here. Check out some of the menu ideas, it might help.

I am getting better at looking at the scans, now that I have one CT/PET with actual cancer on it (Couldn't see it on the contemporary MRI, however).

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Harry
Addiction Treatment