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 :-)










Michael | 53 | SCC | Right Tonsil | Dx'd: 06-10-05 | STAGE IV, T3N2bM0 | 3 Nodes R Side | MRND & Tonsillectomy 06/29/05 Dr Fee/Stanford | 8 wks Rad/Chemo startd August 15th @ MSKCC, NY | Tx Ended: 09-27-05 | Cancer free at 16+ Yrs | After-Effects of Tx: Thyroid function is 0, ok salivary function, tinnitus, some scars, neck/face asymmetry, gastric reflux. 2017 dysphagia, L Carotid stent / 2019, R Carotid occluded not eligible for stent.2022 dental issues, possible ORN, memory/recall challenges.