Not sure if I am posting this in the right forum or not...BUT...

At what point after treatments ended did you have a PET scan?

Typically they wait a while (>6-8 weeks) after radiation before they do a PET scan. If you get one too soon the inflamed and healing/scar tissue will show up as metabolically active and may give you a false positive (and much grief). Even so, it is not uncommon that there are some questionable activities around which then by the time you have the second PET/CT scan are resolved.

M

I'm 18 mos post and I haven't had one yet and none planned as far as I know.

I was told 3 months post treatment and mine was right on schedule. My PET scan showned 2 uptakes of activity and I had a biopsy for one of them which came back negative. My ENT said he has no plans for future PET scans and will watch it clinically every month for a while.

I think I had my first about 6-8 mos post treatment.

I was 12 weeks post for the first one and 32 weeks for the second.

Both Clear !

Bill sees the same H&N Clinic at Moffitt CC (different doc) that davidcpa does and he was scheduled for Contrast CAT and PET at three months post treatment.

Deb

Pet scans will often yield false positives if given too soon post Tx and scar tissue will have a high uptake as well. Post Tx PET scans are not part of the standard NCCN oncology practice guidelines for post Tx follow-up so many of us here, including myself, have never had a post Tx PET. I do get an annual MRI, chest x-ray and regular exams from the H&N surgeon (who always has the last call no matter what the scans say).

I had my PET 2 months post TX. I can't really remember, but I think they said they were going to do one at a year post TX.

I am so glad I asked this question. My Dad was told he would have one in 2 months after his treatments end, (his last treatment is today!) it's interesting how different eveyone is. However, that is good to hear that Dr's are individualizing treatment plans and not just making it a "blanket rule."
Thanks everyone!

I'm happy to hear today is the last of his treatments, that's great! Some cancer care centers have a bell that you ring on your last day of treatment, thinking of your dad ringing that bell!!! ;o)

I had my first PET 11 weeks post treatment, which showed two hypermetabolic lymph nodes. Docs felt these were false positives, which was proven correct in follow up PET at 19 weeks post treatment. I am now just short of 8 months out, and have no currently scheduled PET scan, but do have monthly physical exams by either surgeon, RO or MO.

I had a ct scan about 1 1/2 months after surgery and before radiation with my mask on. I have never had a pet scan and I wonder. My ent said at least 6 months after rads but I was a year this month. I am leary of getting one because I don't want to wait and wonder again. I think I will ask my ent next month. I still go back for exams every 2 months and I want to do that much.

When I asked Buzz' RO why CT scans were being done and not PET scans, he laughingly replied 'cause our doctors here don't OWN any PET scan equipment' (indicating to me that it's about the $$$$$) Does this make any sense to anyone?

I don't know of any small hospitals even that own their own PET equipment it is VERY expensive. They job out to radiology companies, or you have to go to a major hospital/cancer facility. The scan is about $1,000 to the patient or insurance company. CT's and PET's look for very different things (see main web site or search for previous discussions of this) Some docs now order a CT/PET fusion scan which takes both and fits the different data together.

I do not post a lot on OCF yet, but I do READ posts. I will say that it is a wealth of information. Truly is!

Best to you and your family

Just to follow up-I went back to ent for checkup and he wants me to get a pet/ct scan. Oh my, so claustrophobic. I will be taking meds but I want to know if this takes longer than usual and with us head and neck people do they put your whole body in this thing?
I must be at a pretty big hospital since they have one.
Thanks ahead for any info
Debbie

Deb,

The PET scan isn't so bad. If you are claustrophobic, close your eyes. The thing I don't like about all the tests and xrays is "Hold your breath" as I am never sure if I am breathing in or out and have trouble holding my breathfor long. I had to take Red Cross swimming three times(class, audit class, class) to pass for gym because I breathed in water instead of air.

Debbie,
this depends on your docs order but they generally do full body scan. After all you are already there and are already injected with the tracer. The idea is to look for distant metastasis (hopefully not present). The CT portion may also be done with a contrast agent, which may give you a warm rush. (no big deal). This may take anywhere from 20-40 minutes, depending amongst other things on how new (sensitive) the equipment is. To my sense it is quite roomy in the scanner and the tube is rather short (probably depending on the model)... but you do have to keep still. Remember to follow the preparations for the scan.

Markus

Hey Malka,
We are the same! I never did pass the red cross test. Could never stand to swim because of breathing.
I can screw my eyes closed, but my mind starts racing and causing me to panic. I took meds just to do a ct scan and that was for a minute? I am thinking of counting or something to keep my mind from freaking me out.
Did they do a whole body thing on you Malka? It makes sense what Markus said about the body. Do you continuously go in and out of the pet "donut" or do you stay still? I know silly questions but the more I know, the better I can handle my mind playing tricks on me.
Debbie

Debbie,
For the PET portion of the scan (which takes a long time) you do NOT go in and out (on the 3 different machines they used on me). What is happening it advances you by 10cm or so. I counted to 140 to 180 for each segment.
Compared to IMRT this is nothing although it does seem to take forever.

Markus

Markus,
Isn't it like a donut that you go through and come out the other side? Also, what do you mean by each segment. What do you do to keep your mind occupied while in there? If I think about what is happening to me I will freak! Did you count too?
Sorry with the questions, but you seem very knowledgable about this whole thing!
Thanks!

The machine is donut shaped, and the easiest way to go thru is is like I do the MRI and the others. I set my mind to think about soemthing and let the time pass. Heck, might even be hiking. It does work for me.

Debbie, they inject you and then you sit for avbout 45 minutes to let the dye work. Then they put you in the machine and it slowly does it's job. After a half hour or so, they take a few more special pics then you are thru. It's not bad at all. They have names for what they do , but this mind forgets them. LOL

Thanks Jim,
After everything I have been through, this is so babyish, but I seeem to get worse about procedures rather than better. It would suit me fine never to step a foot into a hospital again!! Wouldn't that be a miracle. It's just I got claustrophobic bad wearing the mask for radiation. That was just barbaric. I love to hike now, and that is a good idea. I will image my favorite place all green with spring!
Thanks Jim, I am glad to see you are doing better. Keep getting stronger so you can fight again. That is why I hike. I want to be as strong as I can possibly get every day!
Peace be with you,
Debbie

Debbie,

yes it looks like a doughnut. Re segment. It (the detection) goes in stages. It moves you, then you wait... then it moves you. ... I just count.... that is how I came up with 140-180. It is just boring that is all. Nothing bad is happening to you in the machine. The only thing you MIGHT feel if they inject you with a contrast agent (for the CT portion). That just feels like you get warm all over, not really unpleasant.
As Jim said they will inject you with 18F-glucose after which you sit still for 45 minutes or so. FYI, the glucose the inject you is radioactive so do not freak out. It will decay quickly and not be in your system very long. But this is what they need to see where the glucose goes..... Also follow the instructions you get to the letter. The last thing you want is a false positive which creates a lot of anxiety. Compared to IMRT it is a piece of cake.
Markus

Thanks Markus,
It will be fine if I set my mind to it and know what's going on.
The part I think I really hate is the results. I have cancelled this a couple times now. But, I have to know sooner or later!
THanks to you all,
Debbie

Hi Debbie,
I'm like you. Scared to death of the MRI but do CT scans all the time. Last time I had them take me down to see one. Where I go they have one that is larger on the inside than the other two. She told me to schedule for that machine. It looks like a big CT except that instead of going in and out you are inserted into it and it takes much longer. Wonder what happens if you have to cough half way through. Let me know how it goes and I'll be thinking of you tomorrow.

Take care,
Eileen

Thanks for thinking of me Eileen. I am having a hard time keeping my mind from going nuts. I am scared of results now. I had just gotten used to my "new normal" . I hope I can keep my normal.
Prayers help too.
Thanks!
Debbie

I left the Drs office Monday after he made an appt for a Cat Scan for zfriday this week, when I got home the phone rang and it was the hospital informing me I had an MRI the next day. LOL It kinda surprised me, but it went smooth as usual. Now if I find out what it showed.

Good luck Jim

HEY GUYS,
I got home a few hours ago. I took valium and managed to make it through with my eyes scrunched shut and counting,c ounting, countingl. My modules were about 240 but I was counting fast. I asked what happened if I had to cough and the nurse just said"don't". Whew, I had to swallow twice and I freaked that it would light up on their screen. Otherwise I stayed so still that when they pulled the table out I could not get up for my back being so stiff!! I must have just tensed up so I would not move.
If I can do it anybody can. I just asked that they let me know how much more time every once in a while. I asked for a copy of the results for my records but will not look at it because I am clueless as to what I might see and then go off the deep end. Just came home, took a small nap and was awakened by my doggie to go outside. Oh-peace again. At least for a few days. Pray for my results with me and thanks for not making fun of my anxiety.
Debbie

Debbie- Way to go! One more hurdle over.
Sue

Eileen, the give you a rubber ball to hold and tell you if you have to cough, squeeze the ball. LOL Everytime zi get into onr of those machines, My nose itches and it drives me crazy. What a feeling.

Debbie,

Congratulations on making it through the PET today. I am praying that you hear good news soon.

Malka

Thanks Malka,
I want to talk with you soon! I think of your wisdom often. I
have learned alot lately. I learned today that my doctors nurse is
off today and my doctor is in surgery-so I will not here til MOnday. I'.ll be up a tree by then!
Thanks for your prayers! I need them!
Debbie

So how long were you completely inside the machine? 10 minutes, 20 minutes, longer?

If I have to cough, it is usually not something I can hold back because it is mucous in the lungs that is stopping me from breathing. Most days I'm clear for hours after the initial morning coughing. Actually, now that i think about it, they would have to pull me out for me to clear that.

I can understand the nose itch. Happens to me when I have a CT scan. Fortunately they only take a few minutes.

Take a deep breath Deb. The results aren't going to be any different if you worry about them. Go do something nice for yourself to take your mind off of it. Here's hoping for good news.

Take care,
Eileen

Good News!
My doctor was kind enough to call me sat am to tell me the news. I could not believe it. I was sure they would find kidney cancer, lung cancer, liver damage, something!! I am so amazed that I made it through. Thanks to all of you for talking me through this little tiny step to some but a scary step for me. I just knew I would be dieing again all over again.
Eileen, I was in for 25 minutes. There is no way to signal them if you have to stop or have an emergency, at least with mine. I asked them to at least tell me how many more minutes every once i n awhile. They reluctantly said they would and they kept there promise. It helped to hear their voice, I tell you.
You know, if you had to schedule one, then you could schedule in the afternoon when your coughing is not as bad, I bet.
I am so thankful to eveyone for listening to me and I will help anyone who has questions. I remember every minute!!LOL
I'm still alive and kickin'
Debbie

Debbie:

Thats great news, glad to hear you are in the clear.

Debbie,

Glad to here you got the all clear...and so nice to hear that your doctor understood the anxiety that goes with the wait and called on a weekend.

Debbie,

That's great news. Hopefully you wont have to go through that again. Just keep putting one foot in front of the other.
Malka

Thats great news Deb. Hopefully, you hear that same refrain for years to come.

25 minutes is a LONNNNNNNNNG time. I'd never make it unless they knock me out cold. And if I can't move my arms to cover my trach, I can't talk. Fortunately my lung doctor thinks MRI's are useless for lungs so he still does CT and I get pancreas done at same time so maybe I can avoid this for a while longer. Thanks for the help.

Take care,
Eileen

ASuch good news on a perfect day outside. I am so glad for you Debbie. Maybe I should be on the telephone trying to find out what the results of my MRI last Tues showed. LOL But as they say, no news is good news. ( I hope )

Hey guys - I just thought of something. I have had numerous MRI's and other scans because of all my back issues. Every time they place a "panic button" in my hand so if I need them I can just press it... From the way yall are describing this it doesn't sound like you have that "security blanket". You may want to ask them about it the next time you have a scan.

Yes,
My neighbor told me her hubby had an mri for his back and had a panic button,but this was after my scan. It is worth it to try and ask them for one because it really is a long time.
Thanks everyone
Debbie

Hi LD,

I asked my Dad whether or not they had recommended a PET scan for him, he's never had one. He checked with his doctor last Friday, and they scheduled one for May 16th, he will also have 4th reconstructive surgery that day. Thanks for bringing this up again, we can't ask too many questions to the dr.'s. I hope your dad is doing well and can see light at the end of the tunnel now that his treatment is over.

EZJim: I hope you got good news yesterday and that you're still enjoying this perfect Ohio weather!