Hello, we recently looked over the results from the recent Pet Scan and would like clarification on some numbers.
The first PET SCAN showed asymmetric soft tissue within the right piriform sinus with a maximum SUV of 2.6
This was from the scan done prior to surgery and radiaton and chemo. Now 3 months out of treatment the number has increased. Is this an area of concern? Especially since this area lit up on the first scan but after a biospy we were told it was ok. Here is the recent report. . .
Persistent asymmetry of the piriform sinuses with soft tissue
density within the right piriform sinus. This demonstrates a maximum
SUV of 4.72
Thank you for an explanation of the rise in these numbers.
(We were told after the Pet Scan that everything looked ok but I thought it was strange that we didn't get the final word until after the tumer board had met. I am afraid there may be an area of concern and they are not letting us know. I did have the experience of questioning our ENT more than once about the survival rate of a very rare cancer after he told us in the begininning the survival rate was 90 percent. Everything I read proved this to be very impossible and incorrect. Even after lymph node involvement the doctor said this number had not changed. After the second pet scan and my repeat questioning, the doctor finally admitted he told us that do give my husband hope. I was totally shocked and am having a hard time dealing with this because he said now with lymph node involvment it cuts the number in half. Unfortunately my husband has left all the decisions to me with a no need to know attitude so he has no clue and now after finally recoving from radiation and chemo this is something I do not want to share with him. So considering our previous experience I want to make sure they are not withholding additional information from us.
Any claification would be wonderful to hopefully put our concerns to rest if that is truely the case.
Reply # - August 12, 2012, 11:54 PM
Reply To: Question about Pet Scan
Hi dawnd, What an odd situation that your husband's onc is giving padded information. That must be very worrisome for you moving forward. Have you thought of getting a second opinion? Also could you give us some background to your husband's case; diagnosis, treatment history, outcomes, and dates? It will give some context with which to help decipher your request.
If you put the info in your "forum profile" "signature" it will follow you from post to post so you won't need to explain every time you have a question. You may do this by clicking on your user name on the left of any of your posts. Then edit signature.
If your husband recently had radiation to the area there may be inflammation from the radiation that caused the suv to be higher. Also it is thought by most oncologists that an suv is not a good measure for following lung cancer. It often causes premature changes in treatment. A stand alone CT with a higher resolution is considered a better measure with which to follow lung cancer. This will help explain the difference, http://cancergrace.org/cancer-101/2010/09/16/cancer-101-faq-assessment-…
Janine
forum moderator
Reply # - August 13, 2012, 11:39 AM
Reply To: Question about Pet Scan
As Janine indicated, PET scans can entail a good bit of ambiguity, and that's especially the case when someone has recently undergone radiation or chemo/radiation to the area lighting up on a scan. In such cases, the trends of increasing or decreasing PET uptake can be informative -- a rising SUV after radiation far more worrisome than a declining one, which is often just resolving inflammation -- but the definitive test is a biopsy if the diagnosis remains a question.
I'm afraid that without the images to view and without the relevant details, we really can't say more than that it does sound appropriate to be asking the question, and I agree with Janine that a second opinion may be very appropriate, especially since the information you've been given by his doctor has been somewhat between selectively truthful and frankly untruthful in the past.
I'm sorry that you're the one charged with handling such big issues and decisions. Good luck.
-Dr. West
Reply # - August 20, 2012, 09:25 AM
Reply To: Question about Pet Scan
Just wanted to ask about the original uptake of 2.6 in the right piraform sinus area. Why would this number be higher and apparently lit up on the first scan before surgery and treatment. Could this be abnormal cells? (It was biopsied and came back clear.) I can understand with radiation and inflamation now causing this area to have a higher uptake but why is this the only area of uptake and the cancer was only on the right vocal cord. Is this area connected to the larynx in any way. It was hard to tell in a diagram exactly where it is but after reading that cancer in the piraform sinus is one of the most lethal I want to make sure we are being as proactive as possible. If the original 2.6 is a possible area of concern I just don't want a surprise when we have the next scan in Dec. Also, when we were waiting for the final release of the last scan, the tumor board met and it was decided the higher uptake was from inflamation. Would this be the same as being told there is some tihickening in the neck that was a result of radiation?
Thank you for your input!!
Reply # - August 20, 2012, 10:17 AM
Reply To: Question about Pet Scan
Hi Dawn,
An uptake of 2.6 is easily in the realm of possible inflammation. I'll take a chance (because we'll have a doctor clarify) and say it was most probably inflammation. But I completely understand your worry.
I will see if we can get Dr. JWeiss to comment. He is our head and neck cancer specialist. Though he may be out of reach.
Janine
forum moderator
Reply # - August 20, 2012, 11:10 AM
Reply To: Question about Pet Scan
Will be waiting for another opinion. Still wondering what would cause inflamation in this specific area and no where else other than the primary being the vocal cord area. Thank you
Reply # - August 20, 2012, 11:53 AM
Reply To: Question about Pet Scan
Dawn, It would be helpful if you provided us with a "signature". It will be added to the end of your posts so the doctors have a context from which to draw information about your questions.
click on your "user name" to the left of any of your posts (dawnd under the big G). That will take you to you "forum profile" where you can type the info then click "submit".
For examples look at the bottom of my posts or certain spring or many others.
All Best,
Janine
Reply # - August 20, 2012, 04:15 PM
Reply To: Question about Pet Scan
Radiation can certainly cause some inflammation that would result in increase in SUV uptake on PET and asymmetry on CT. You should not be alarmed that the doc deferred final judgment until review at tumor board. I feel strongly that head/neck tumor boards improve care and see review at a tumor board as one marker of quality care. Of course, this doesn't obviate the question of what to do--the doc, with the help of the tumor board, still needs to decide this. The basic options are to monitor with serial imaging, to take a look, and to biopsy. The piriform sinus can be visualized with NPL (that small scope that they pass through your nose to look down your throat) and I'm going to guess that they've already done this. As has already been noted, biopsy is most definitive. However, even biopsy is not perfect--it tells you only about the exact spot where the needle is passed. So, a positive biopsy can prove cancer. A negative biopsy is reassuring, but not so reassuring that you wouldn't continue to monitor a worrisome spot and consider repeat biopsy if it grows.
Just to reassure you--post XRT abnormalities on imaging are very, very common, even amongst patients whose cancer never recurs. Of course, you want to be very vigilant in case something abnormal turns out to be cancer, but over a third of patients who are cured will have an abnormal scan or two right after radiation that worries patient, doc and family. For these patients (and those who care about them), the real reassurance comes when, over time, nothing grows. I wish that we could prove cure earlier than we can so that patients could breath a sigh of relief and fully go back to life. Maybe with improvements in imaging we'll be able to do this more often in the future.
Reply # - August 22, 2012, 11:46 AM
Reply To: Question about Pet Scan
Thank you for your reply. Yes, he has been scoped every month but there had never been mention of the concerned area in the pyriform sinus.
I do understand the increased number after treatment but I sure wish someone could tell me why this area had a 2.6 uptake before treatment. What could be the cause of that. I am just concerned about this specific area because when he was first told about the cancer in the vocal cord he was told he had cancer of the pyriform sinus also but luckily the biopsy of this area came back ok. Can an area be suspicious befor the cells turn into cancer?
Reply # - August 22, 2012, 04:11 PM
Reply To: Question about Pet Scan
Hi dawnd,
Unfortunately, at this point I don't think anyone can determine the cause of the 2.6 uptake, especially someone who does not have access to all of your husband's medical records. As Dr. West and Dr. Weiss pointed out, PET scan results can be ambiguous and only follow up scans can help show whether there is cancer in that area. That's one of many aspects of cancer that causes patients and caregivers difficulty.
JimC
Forum moderator
Reply # - August 22, 2012, 07:42 PM
Reply To: Question about Pet Scan
As Jim said, we can't explain every finding on a PET scan. That's why we refer to these as "nonspecific" findings.
-Dr. West