Nelie, Just wanted to let you know I am thinking of you, hoping for everything to come out "all clear". Frankly, if you had surgery 4 weeks prior to the PET scan, I would be IMMENSELY surprised if it did NOT show some new hot spots, i.e., where the surgery is healing. That's what PETs do, they show hypernormal healing/metabolic activity.
Best wishes,
Andrea

Andrea, thanks for the wishes. The thing about the surgery is it wasn't a cutting stuff open surgery, it was a stretching stuff open surgery, although there was some bleeding, so presumably some raw flesh somehwere when they removed the stent (the advantage of having a g tube is they can see this because the bood goes into the stomach). I really have no idea if the "upper neck" area that is lighting up is close to the esophagus or not. My ENT knows I had that surgery and I assume he might be less concerned if it was the esophagus lighting up.

Nelie

The "not knowing" is the hard part right now. That's what always drives me nuts. It seems like we've all been through so darn much, that "knowing" the facts gives us a starting place to work from, a battle line to fight from.
I would try to get a copy of that scan and look through it. At least then, you would have a general idea of the area of concern.

Hold fast,
Andrea

Nelie,

I am so sorry you are going through this waiting game we all have to do. I am thinking of you.

I hope it will turn out to be something that they just want to look at closer to make sure all is well.

It could be scare tissue. I know that will show up on a scan.

Take care, Thinking of you
Diane

Well, I'm still up in the air. I had the neck MRI and chest CT yesterday and my ENT called right after (he must have been in the hospital--if I recall correctly, Wed. is his surgery day) to tell me that he was leaving the results of the chest CT up to my medical oncologist to look at (because apparently the PET had shown activity in nodes in the chest near my armpits but bilaterally which would not be consistent with a breast cancer recurrence OR oral cancer recurrence--he didn't say what showed up on the chest CT--arghh. I just HAD an appointment with my MO and now I have to call his office and ask about those results. I'm tired of this part time job called "patient".)

BUT, I'm not out of the woods with the ENT either because the PET showed some "activity in the upper neck" and the MRI showed a place on hte base of my tongue which looks "abnormal". The he said, as if he was looking at it as we were speaking "but I see this was on your last MRI as well" (I assumed he meant the one I had a year and 1/2 ago, when I was only three months out of treatment, but now I'm wodering if he could see it on the mistakenly-given, head and brain MRI I had a month ago.) Anyway, he said "that suggests it could just be something anatomical that's not normal".

But he wanted me to come in anyway, as soon as possible for a really thorough exam with a scope. I last ahd one of those 3 months ago and I remember at the time he said the base of my tongue looked good but he was actually looking more to see if I had another stricture, so maybe he could have missed something? So I'm going in Monday.

Anyway, from his tone I kind of got the impression he doesn't think this is likely to be a recurrence but just wants to double-check with the scope. I hope that isn't just me in denial. Well, maybe it's better if I am. I do know there is some possibility of bad news so I made the appt. for a time my husband could be with me. But I'm hopeful this will turn out to be a false alarm.

Nelie

Nelie,

Hang in there. I have been and still am where you are with these damn scans. I realize their importance but they are just as rinky dink as the barbaric Tx we all must endure. Rindy dink meaning one would have thought that by now medical science would have developed more sophisticated methods to find and kill cancer. Well at least we don't have to put up with leeches and maggots. I hope saying that doesn't give any oncologist any ideas.

Nelie, you are welcome in my tree on the island any time you care to join me [Helen may be there also, and Cindy, so you will not lack for loving arms] I know this "sucks", as my 15 yr. old grandson would say. Amy

Nelie.....I'll be thinking of you especially tomorrow as you go to have your scope exam. I sure do hope that you come away with logical, healthy explanations for these scan findings. Please let us know!

Well, the exam went well. My ENT said everything looks fine. he thinks what showed up on the MRI was that my uvula was swollen/inflamed from radiation. It was there on my first MRI a year and 1/2 ago as well, so really likely not to be cancer since it hasn't changed in that time. He said the base of my tongue looks good.

He thinks the chest CT was also clear but wants to have my MO double check that report just to be sure since what showed up on the PET would be related to the breast cancer if it was related to anything. I'm not too worried about that since I just had a checkup with my MO and the breast surgeon and a clean mammogram.

So I am two years cancer free. Yay!!

And he (the ENT) is going to find out how to order a bougie for me to learn how to use (hopefully) to stretch my own throat. He pointed out that is I can learn how to do it I'll be quite a hit with small children..quite a little party trick

Anyway, thank you, all, for the support. I think I'll sleep well tonight.

Nelie

Hi Nellie,

I'm so glad to hear this news and I think you'll sleep well tonight too. Jack has a hot spot that shows up on the shoulder opposite his neck dissection and the bottom line they've come up with is that he's left handed and using it more now that he's back to work full time. Go figure with these PET scans.

Regards JoAnne