We just got the results of the CT scan that John had at 7.5 weeks post chemoradiation. The primary site (left tonsil and area) are completely clear. All neck nodes ( they originally saw 2 but suspected 3) have disappeared expect for one which is still 1.4 cm. They called the size of the node "borderline" in that if the node was 1.5cm or larger they would schedule surgery right away.

The RO, MO and ENT have agreed that John should wait and have another scan done in a month and they will then decide on whether or not a "small neck disection" is in order.

Has anyone else had a similar CT scan result? If yes, what happened later?

Mary

Let's pray that the next scan is clear.
Darrell

Thanks for your thoughts Darrell.

I did a very thorough search of the patient forum ( my eyes hurt!) and have discovered a few people who had tonsil-based cancer rads/chemo followed by neck disection. It seems like most of them are doing okay. It's disconcerning when people seem to disappear from the site without a trace but I suspect, sometimes at least, it's because they very much want to put this tough time behind them.

I've also done lots of research in the medical/scientific journals. From what I've read, the complete response at the primary site is a solid start even though not getting an "all clear" after rads/chemo only (quite a few people seem to) is disappointing and a bit scary.

Mary

Hi Mary --

The advice John's doctors gave you is about the same that our Hopkins docs said -- if the initial scans showed anything suspicious, they would biopsy if easily accessible (e.g. base of tongue) or oterwise wait a month and re-do the scan. They might also add an MRI.

However, they do not rely on just a CT scan but do a fused PET/CT scan which is apparently the currently recommended approach at most CCCs. You may wish to ask about John getting one of these -- it involves injection with a radio-labelled glucose compound which is preferentially taken up by active cells (read: cancer cells and some others). This coupled with the image from the CT allows a trained radiologist to determine if the "suspicous" area is metabolically active or just scar tissue.

Gail

Mary - You are asking good questions. Keep doing that. Make your docs CONVINCE you that their recommendations are right. Make them discuss other alternatives. Get that 2nd or 3rd opinion. Its worth the money and VERY reassuring. Be fussy about who is going to read those scans and what kinds of decisions are made based on them. Always remember, tissue sample biopsy is the ONLY way to know for sure. We don't want "I think so" on this, we want "I know so". Be strong. Tom