So V had his follow up PET today, 3 1/2 months post tx, and the results have the rad onc, med onc & ENT scratching their heads. Original BOT site, plus many nodes, all completely clear, no sign of anything, good news.

Bad news, the nodes in his chest and upper abdomen lit up like a christmas tree, very hot, SUV 19. With the original areas being resolved, they are not thinking distant mets. Could be second cancer. Could be sarcoidosis. All concerned enough that they tried to get a biopsy done today, but no anestesia available. Will be early next week.

I am well aware of the 40% false positive on post tx PET's, but isn't that usualy in regards to original tx area? Anyone seen anything like this before?

Ana

A quick google search turned up articles and blogs that indeed Petscans do register sarcoidosis as cancer, as well as pneumonia and other lung inflamations. I'm so sorry to hear about this.
But focus in on the really positive news that the BOT and lymph nodes are all clear. That;s a great sign.
Hang in there until the biopsy reports. It's nervewracking but let's hope for the best here. It's just not fair that you have to deal with this new fear and pain.
Charm

Thank you so much Charm. I know until the biopsy we're grasping at straws, but just can't help it, our minds are racing. Have you heard of folks having such a high SUV # (19) and it being a false positive due to infection? Have you heard of many survivors developing sarcoidosis, due to the tx? Ana

Ana, Im very sorry you and your husband are going thru a scare. I hope it turns out to be nothing serious!

Ive had false positive PET scans too. Ive also walked around with 'lit up' nodes in my lungs for several years. These nodes have not changed at all in the past 4 years. According to what my docs have told me they are nothing to worry about, they are tiny (about the size of a grain of rice). Hope this helps to calm your fears by showing you that you arent alone and things dont always turn out to be a major issue like cancer.

Best wishes!!!

Anna

On this one, I'm just channeling Dr. Google. Perhaps there will be some posters this weekend who have the real world experience that this board brings to questions. For what it's worth, there were some posts on general lung cancer forums from a patient who had a 25 SUV, and then TX and then had a 19 SUV and he/she was still posting asking questions about was that bad since he/she was still alive. At this point, I think only the biopsy will be able to calm your fears.

Christine's post should bring some comfort. Plus the statistics I've seen show that while the FDG Petscans have super high false positive rates for base of tongue cancer patients, they have extremely good "negative" accuracy. So again, focus on Vince showing no signs of the BOT cancer.
Sorry that i just do not know enough about hot spots in places other than the mouth to give you any more information.
But again, the deficiencies and inaccuracy of FDG petscans is well documented, so there is still hope here.
Charm

I had a PET that showed two spots on my upper lungs (1 each) I thought they might be from an infection but my ENT felt they where cancer for sure. The biopsy showed inflamation but was concidered inconclusive because of some bleeding during the procedure.
Latest PET showed no activity in those areas so I can say from my perspective that inflamation can give a false positive that will fool an ENT at the least.

I think each body structure has different uptake values for an abnormal diagnosis. I've read the SUV uptake goes from 0 to 15, and the cut off value above 2.5 could be a sign for malignancy. In neck nodes, above 8 is possible indication for advanced disease. FDG-PET scans are especially good for identifying recurrent neck nodal disease, and diagnosis of distant Metasteses, and FDG-PET/CT is better than FDG-PET. FDG-PET, including with CT, is said to be superior in sensitivity, specificity, and accuracy over MRI and CT alone, but there are different percentages for diagnosis, recurrence, nodal disease, cancer type, and from what I've seen PET usually has the higher finding, but not in all cases. The drawbacks with PET is that it is more expensive, needs specislized tech training, does not usually show tumors less than 1cm, and has a high rate of false positives, if taken less than 3 months or 12 weeks.

Thanks folks, and you're right. In the middle of this new puzzle, the good news of the original sites being completely resolved has been swept aside. When you consider how V's neck was absolutely full of cancer (nodes trailing all the way down to within an inch of collar bone), that really is amaing news. As far as the new challange, we've peaked around the corner enough, will now wait for biopsy results. Thank you for the support, Ana

Ana,

When I went for my original PET, my neck nodes lit up like a Christmas tree on both sides, to the extent that my surgeon planned to remove ALL neck nodes (over 200). Turned out that all were soft, so he only removed selected and tested and all were negative. No-one knows why, which sucks because presumably on my follow up, we will have a similar issue, and it will always be a question.

Good luck to you and Vince.

Tina, did they ever consider sarcoidosis?

I have just spent the day trying to get V's biopsy scheduled, something I thought was going to be fairly straight forward thanks to the urgency of the ENT & Med Onc. No such luck. Meet and greet with the pulmonologist tomorrow, with a guaranty the biopsy won't be until after Christmas. If this turns out to be sarcoidosis, no bid deal. If this turns out to be reoccuring or new cancer, that has gone from nothing to red hot (SUV 19) in a matter of weeks, it's extremely frustrating to lose at least a week to the holidays.

Ana and Tina, hope all works out well. My husband's diagnosis and then treatment were delayed by (US) Thanksgiving, Christmas and New Year. Very stressful.
Best wishes, Maria

When Ken's biopsies came back positive after his treatments there were areas around his windpipe that lit up. The MO had him go to a thorasic surgeon who said he normally wouldn't even do a biopsy but they wanted to make sure it wasn't cancer (if it was, the idea of total glossectomy would have been re-evaluated to even be worth it). The biopsy on the windpipe ended up being sarcoidosis.

To be honest I didn't ask. I was so relieved that the nodes were clear that I didn't think to ask at the time. My follow up is Feb 11, and if it shows another positive, I will ask then.

Until then, I am going to hope that I am just really, really lucky...

So the rollar coaster continued today. The meet and greet turned into a biopsy. Nurse practicioner called while I was making the kid's breakfast, asking me if V had eaten, to which I very honestly answered, "hell no!", not going to let him eat until after the visit. She said they were working on squeezing him in, my guess is, someone finally looked at his PET. Long story short, we get to the hospital, 10 minutes later he's being prepped for his broncoscopy. Pulmonologist came out and gave me the best possible news, granulomas in every sample taken and NO CANCER. It would seem he's got sarcoidosis, official results in a week. Talk about the best freakin' Christmas present EVER for V, me and our teenage boys!

Great news, but what is Granulomas and sarcoidosis?.

Hockeydad, we are still learning the answers to those questions. For us, the most important thing they are is what they are not, reoccurant or new cancer. My basic, beginning understanding is, scardodisis causes the granulomas, clumps. Sarcoidosis is an autoimmune disease, perhaps a reaction to the chemo in my husband's treatment. I don't know how common it is in cancer patients, other than to say of our 3 very experienced, top level docs at U of C, my husband is the first case they've seen. 90% of folks who have sarcoidosis live with relatively few symptoms, 10% really suffer. Again, we just started learning about it last Friday, after my the nodes in my husband's check and abdomen lit up hot (SUV 19) on a PET. Our big question now is, how will they be able to monitor him for mets if his chest lights up on PET?

Ana

Congratulations on the good news. You do not need a petscan to check up on mets, a MRI works just fine. My 3 month checkup will be an MRI not a Petscan and it will be more accurate
Charm.

Ana - thank heavens - and the very happiest of holidays to you and Vince!
Maria

That Is terrific. Merry Xmas!

Enjoy the Holidays now.... YAY!!
Kathy

Thank you guys for the warm wishes and for celebrating with us...this entire experience has left us over the moon happy and exhausted, ready for the best Christmas ever. Charm, talk to me some about the MRI, would they be able to tell sarcoidosis from cancer on an MRI?

ana

Much as I would like to say YES, yet another reason to prefer an MRI, the truth remains that there is no test or scan, (not petscan, not MRI, not CT, not ultrasound, etc) that can definitively distinguish between some conditions and cancer. Only a biopsy can do that.

However, Petscans seem to mistake sarcodosis for cancer at an extremely high rate. The old false positive that is the hallmark of Petscans.
See this report Sarcoidosis - petscan

According to Dr. Google, MRIs are the preferred method for tracking sarcoidosis. According to my CCC and ENT, MRIs are the preferred method to check for mets in base of tongue due to the almost 50% false positive rates of petscans for bot cancers.

The majority of doctors and researchers who push Petscans over MRIs in my opinion do not understand just how devastating and worrying getting the false positives are. I understand why they like them, it's "nuclear medicine" and the petscans are all in color and gorgeous while the MRIs are black and white.
Except that an MRI will not show inflammation as cancer, a MRI will not show normal tissue recovering faster than normal and taking in sugar as cancer, etc.

Talk to your doctors about getting MRIs for your husband, it cannot hurt.

Charm

Great News!