Today I go in for my first set of follow up scans - both a CT and PET/CT. I thought I wasn't nervous, after all they will be what they will be, right? But, I slept terribly last night with weird dreams and tossing and turning even though I was pretty tired when I went to bed last night. Lately, I've been sleeping like a rock!

I don't get the results until Thursday. I really hope the whole week of sleep isn't like this.

- Margaret

I wasn't nervous for my actual scans but I was pretty freaked out on the day that I was getting my results. Good Luck Today!!!!!!!

Good luck Margaret,

Tomorrow I go for my 18 month CT scan and next week is the PET.

I did have a scare at 6 months out. The PET scan showed elevated activity. But the follow up scans and exams didn't show anything. Some doctors don't put much faith in the PET scans for the first 6 months, because there is a lot of activity with the tissue healing, which can lead to false positives. They depend more on the scope and physical exam. (I'm especially fond of the doctor pressing her fingers on the base of my tongue while I gag).

Best of luck to both of you! Look forward to hearing "all clear" later this week.

Margaret,
I know the feeling. My first follow-up PET/CT was last Saturday. I don't know if I will hear the result this Wednesday from my ENT, or next Monday from my MO, but the waiting and thinking about it bothers me.

It seemed like the scan lasted forever - I fell asleep. When I mentioned that to the Tech he said they were running me through it slowly to collect maximum data and also scanning my lower brain area (probably checking to see if I have one left).

On the good side, I had my first teeth cleaning today. The Periodontist said my gums and teeth look real good, perfectly normal and everything checked out fine.

They did what they called a "deep cleaning" that is apparently designed to get deep below the gum line - probably to look for rad-cavities. It also cost $40 more and the extra wasn't covered by my insurance! But, I got a big bag full of Biotene products and Oasis samples, floss brushes and the like.

No matter how much it may have put you on edge to have a follow up scan I have to say I think it would be worth it for the peace of mind it can bring. I found out today that follow ups are not done here unless something shows up or is suspicious...They do not do random scans. This makes me a bit nervous..

Thanks all for your words of support! Scans were uneventful and I caught a few zz's while waiting for the PET injection to do its thing. I'll get my results on Thursday and if all is well, my PEG tube will come out **fingers crossed**

Dianne,

I can't believe they don't do follow-up scans! I'd be seeing the docs every few months and just make stuff up if I had to to get the appointments!

I know I couldn't believe it either....I am still seeing the doctor every three months for check ups...Today got the all clear and they were so surprised about how well I have come along and the 180 docs and nurse practicioner so happy and even if I don't make the commercial with my video my mouth is going to be a star they took pictures of it to use in an international seminar being given by my doctor in toronto, Ontario ...I am sooo proud lol...like anyone is gonna know it's me...but at least I will be helping the cause

Followup scans done too early are too easily messed up by the healing tissue, esp PET scan. In my case, my first post-op scan was at one year.

Here is a recent article in the WSJ regarding the hiring of "Radiological Police" to ensure justification of expensive scans:

http://online.wsj.com/article/SB122591900516802409.html

They are called Radiological Benefits Managers.

Pete
A while back there was a show on TV about Healthcare in different countries. It interviewed a PCP in Japan who said a body scan is part of the patients annual physical. They went on to say in Japan that scans are common, routine, expected and cheap.

I noticed the NCCN guidelines indicate in cases where scans are appropriate that the post TX follow-up scan should be done after 12 weeks.