Had my PEt scan three months after chemo and radiation therapy ended. It was reported to me that there is "still some increased uptake at BOT." That means increased metabolic activity which might or might not mean there is still some tumor there. It might also mean there is residual inflammation, etc., going on there.

I wish I knew more. I guess this means another biopsy and then who knows. Very discouraged.

AT 3 months post rads there is a good possibility of this being only an inflammation. After rads the first PET has a good chance of coming up with a false positive. Ive been thru this myself and it stinks!

Try your best to stay calm. Ive seen this happen to so many members with their first post rads scan.

What type of follow up is your doc suggesting?

I had 3 post Tx scans before I finally received an NED and none of them had anything to do with a recurrence, just healing.

I got the result over the phone from my ENT. I also have appointments this week or next with my Hem-Onc, Rad-Onc, and head and neck surgeon. I guess I have to hear what they all have to say. All along, every doctor kept saying I was making good progress, the right kind of changes were taking place, etc. Everything was positive until the PET scan and WHAM! - Bad News. It was like being punched in the gut.

Try to stay calm as it is very common for an early PET to read some hot spots, nearly always inflammation.

What helped me get through the early days post-tx was understanding the timing of recurrences or cancers that got away from the initial treatment.

Now, this is MY own view. It seems to me that recurrence follows a standard bell shape curve. The timeframe starts post-tx to 3 years post. Few report recurring cancer before a year and between 3 and 5 years out. The greatest frequency is between a year and 3 years.

I am now 14 months post and never lost any sleep over recurring cancer. From here on out, thoughts of recurrence are on my mind more and I will likely not let out a big sigh until passing three years.

Not sure if that helps you but at least it might offer some short term relief.

Good luck.

They have always told me that the reaction to the treatment is not indicative of how well it has worked. The doctor's comments on your progress would have been about how well you've done with your treatment, and they would be right. You've come a long way since April. Try and draw on that progress to get you through the next stage.

I'll be doing my best to take my own advice. My first 3 month PET is on Monday. Good luck to us both!

Hi Liam,
The same thing happened to us. It was just inflammation from treatment. Try to not be too discouraged until you know for sure. I know how you feel though. We were in a panic until we got the good news. Hang in there.
Kathy

Yes! Hang in there! What a road we all travel. I am in the exact same position you are and waiting for my 2nd scan in a week. (I might have been a tad tense and snappy at my family for the last week, true confessions)
Stay encouraged Liam! I'm encouraged just reading all these posts to you. Another beautiful thing about the OCF forum.

Thanks for all the encouraging posts. they help more than you can ever know.

Here's an update:

Since the PET scan that showed some indication of hypermetabolism in the (much smaller now) mass that was the primary tumor, I have seen my ENT, medical oncologist, RO, and head & neck surgeon. They all say we will watch it closely and I will come back for examination in three months. Besides that, their reactions were all different.

The medical oncologist seemed to think it was a slam dunk for the winning team and the hot spot was just inflammation from radiation effects. The head & neck surgeon seemed to agree and even said we will not be scheduling a microdissection of the two lymph nodes that are now showing zero evidence of hypermetabolism. I pressed him about whether he is troubled by the elevated update levels of the primary mass and his response was "Troubled? No - I am not troubled by it." He went on to explain about how much lower it was than the original PET scan and how this indicates the tumor is diminishing. The ENT said it was "not all bad news" because the lymph nodes are no longer involved. The RO seemed encouraged but was much more cautious and would not declare any kind of victory at all.

So - it seems like the results should be considered generally good but it is too early to start thinking about using the word "cured." They all agreed that there is much less risk than before. They all agreed that watchful diligence is the order of the day for the next year in particular and for several years after that.

Tomorrow will bring whatever it brings. I feel a lot easier in my mind than I did when I got the initial results of the scan.

I had 3post Tx scans until I was FINALLY declared NED. I hate the wait.