Hi Everyone.

We've had a tough afternoon... After my pre-radiation PET/CT/Sim yesterday- we received a call from the RO's office asking me to come back in ASAP. There is a hot spot measuring 8.5 from the PET done yesterday. The RO looked at the tongue and saw a spot that looked like it could either be scar tissue or possibly worse. She called up to my Surgeon who was not in- nor reachable. She said this is very out of character so we assume that he is traveling or was truly out of contact this afternoon. She then called in the Pathologist who did three Fine Needle biopsies of the questionable area. The good news there is that apparently the tissue was not hard like a tumor would be- and the needles went right in, in the areas she stuck.
I was sent up for another more localized CT, and will be doing an MRI on Sunday so that they can put together the group of images. From there it will be determined whether I need further biopsies and possible further surgery or if I will carry on the road we are on and begin radiation the week after next.
My surgery was on 9/17. Has anyone had good pathology reports post surgery and then had the hot PET and a tongue that is still a bit numb and sore on the surgical side? Being that this is my fifth operation on the same area- is it likely that because of the significant scar tissue it is taking longer to heal?
I just don't know... It seems extremely quick to have a recurrence. How do you know and trust path reports.

The RO is lovely and thorough. I was so upset that the surgeon was not available. They will take a look at he CT from today and the MRI I do on Sunday and get back to me on Monday.

I am sad. I am nervous. I am scared. If there is something- I'm happy to be finding it now and not in another month- but it just seems crazy to me. I want this to be gone!!

Sorry- this is half vent- half asking if anyone has had a similar experience.

Thanks,
Sally

My understanding is that the hardly ever do PET scans until at least three months post surgery due to false positive generated by healing tissue. Even if this is not at the surgery site, they grab and move your tongue around fairly forcefully in these procedures.

I would not rely on a PET so close in time to a procedure.

So sorry to read your post Sally! It must have been a very scary time for you having the PET come back like this.

PET scans are known for false positives. Ive had it happen to me. Im not saying this is the case in what happened with yours. Im just giving you some info about PETs. They will light up when there is an inflammation, an infection or even scar tissue. I hope what made yours light up turns out to be nothing. Please do yourself a favor and do your very best to stay busy to keep your mind from going to the "what if's". Best wishes!

Kelly, not sure what you meant with your post about moving a persons tongue around. PET scans do not have anyone physically examine you to have it done.

Hoping very much you get good news Monday. I agree pets are notorious for false positives. Hugs!

Instead of my usual rant and rhetoric about Petscans false positives, I will just note that even though the revised NCCN guidelines added Petscans for followup in the newest 2011 version, the chart clearly states there is a "12 week minimum" after TX for Petscans as opposed to a 6 to 8 week minimum for MRI and CT. So there is indeed a basis for hope here.
We do NOT need or want any more members in our recurrence club.
Charm

Christine,

What I meant was that during such procedures, the doctor needs to get at parts of the tongue that are hard to get at. They will put a clamp on the tongue and pull, twist and otherwise manipulate it to give the doctor access. My brother complained more about tongue pain than the actual surgery site mostly from the clamping of the tongue to give the doctor access to the throat.

If this is the case here, she may just have some bruising in areas of the tongue that are healing and lighting up the PET.

Thank you everyone. We just got a call saying that based on the fine needle biopsy, further CT & MRIs done since Friday- that the PET was showing post-operative change. Not more cancer. I will begun radiation next week as scheduled.
Thank you so much for your insights!
Happy Halloween!!

You too and so glad to hear that.

Well- another change. The RO called me again today- and they have revisited my situation... I am going into the hospital for a more thorough biopsy on Friday. I will be admitted (not sure same day or overnight) and will be checked out.
I think that the issue is where my back molar is pushing into my tongue. It is definitely sore, and does not look normal... Both the RO and MO have commented on it and that is the area where the PET, follow-up CT & MRI are showing as an issue. I hope they can do something to fix this!!
They are not saying that it is cancer- but it is questionable enough that they want to check it out.
I am grateful for the complete care- but am also nervous about going back and and potentially having them find something more.

Sally I wish you the very best with your hospitalization and testing. I hope there is nothing more serious wrong. I like when doctors are proactive and are willing to go the extra mile being cautious. Sounds like your team is a good one. Keep us posted. Best wishes!