My hubby and I are fast approaching his first PET Scan and we are nervous. I hope that it is all clear and we can direct our thoughts to some other things besides his cancer. We need to live again.

Ellen

Good luck and I'm saying prayers for you... Hope all is clear!

Of course you are nervous, I don't know anyone who wouldn't be. We are all waiting here with you.

Best of luck to you and your husband, Ellen. I'll certainly be thinking of you. Linda

Thanks everyone. We will let you know how it goes. I might have questions if things do not go our way. Praying that they do.

Good Luck!!
Ron goes to see bout his on the 7th of November after his second surgery in June.

Hello Ellen:
There are very few of us who aren't terrified when waiting for results from PET/CT or other scans. From reading others' posts, I believe I win the contest for being the biggest wimp, and nearly go nuts until I get the results. I drive the RO nurses nuts calling to see if my results are in yet. I usually hear the next day, but all doctors are different. So, WE know how you feel and I pray that your hubby has good results so you both can do the Happy Dance!
julieann

Ellen,

My prayers go out to you and your Hubby, I hope it's all clear. I know how you feel.

Take care,
Connie

Ellen

You are right to be nervous about a PETscan since your husband had base of tongue cancer. HEADS UP, that there is a 50 % chance or better (worse) that the Petscan may cause you both unnecessary worry and fear by falsely indicating that the cancer is back when in fact it is not. I've ranted about Petscans a lot here especially for BOT, but bottom line is that a petscan cannot distinguish between the sugar uptake in the normal recovery process for the base of tongue area cells and the cancer. They work a little better for other types of oral cancer but are dismal for BOT due to the high SUV of those normal cells recovering from radiation. They are working hard on better FDG solutions tailored for BOT but they are not there yet. FDG uptake is not tumor specific. It can also be seen in healthy tissue or in benign disease as inflammation or posttraumatic repair and could be mistaken for cancer.
So I join in wishing you a clear Petscan but don't panic if it purports to show something. Just get a reliable MRI.
Keep the Faith
Charm

I have a PET scan scheduled for Thursday and then I don't go to the oncologist until Nov. 7th so I have quite a wait before I hear the results. I am just hoping the chemo has held back the inevitable spreading a little.

Hope yours is completely clear. Good luck to you.

Good Luck to you Barb!!! Hope it holds up for a very loooong time.

Hello everyone,

Thank you for positive thoughts. Charm, I really appreciate your post and if there is something showing up on the scan then I will bring up what you have said to the docs. I see that you toned down your post. I guess you have really had some bad experiences with PET Scans. I trust the team so far but need to ensure that the results are accurate if we are to either go on with our lives or hunker down for some bad news. I am very, very scared but have not let on because my husband is trying to believe that he will be okay. I know that the stats are not great and I see that many of you have had multiple bouts with cancer. I guess there is nothing that we can do if fate tells us that this is how we have to live our lives. Very scary to say the least.

Per NCCN treatment guidelines, a PET-CT is the recommended follow-up scan 12 weeks after completing Chemo-RT for SCC BOT with involved node.

A MRI or plain CT is satisfactory if a PET-CT isn't available. Studies have clearly shown that a PET-CT can better identify residual cancer, particularily in the nodes.

Thank you Don. We will have a PET CT and will hope for the best. Thanks so much

I agree with Don about Petscans being good at identifying cancer in the lymph nodes. They are a bright spot of hope in avoiding the many unnecessary neck dissections currently being done.
the lymph nodes intake of the FDG or high SUV as shown on Petscans has indeed proven reliable without the false positive issues possible with recovering tissue in the base of the mouth SUV. In the past, surgeons tended to err on a more agressive neck dissection. As usual Don adds great value. I will be sure to acknowledge petscans' utility for lymph nodes in future posts.
Charm

PET Scan Monday and results on Wednesday. Very , very nervous.

I've always had the wierdest feelings about scans. I am nervous before the scan (but not overly so as I know I am being checked and that is ALWAYS reassuring), but then as soon as the scan is done I feel a huge relief. It is almost like - "there - I've done my best (as if you can study for a scan??) - and I can't do any more - so whatever it is is what it is" and then I relax. Sure wish I could adopt that attitude for everything!! Do try not to be too nervous/worried. They really are days wasted - this disease steals too much from us as it is - don't give it extra time! Take these days back and make them special for you in some other way.

Hugs

Donna

Donna,

What great advice. I will talk to my hubby tomorrow and share your words of wisdom.

[quote=Charm2017]

HEADS UP, that there is a 50 % chance or better (worse) that the Petscan may cause you both unnecessary worry and fear by falsely indicating that the cancer is back when in fact it is not. I've ranted about Petscans a lot here especially for BOT, but bottom line is that a petscan cannot distinguish between the sugar uptake in the normal recovery process for the base of tongue area cells they are not there yet.[/quote]

I strongly agree with Charm's comment. J's "SCC" was staged and treatment was planned based on a false positive result on a PET scan. The areas that lit were nodes recovering from severe throat infections and allergic reactions. When J had an MRI 8 months after the PET was done and 5 months after treatment was suspended, the nodes were no longer visible--he was cancer-free.

A stupid and/or dishonest RO relied solely on the PET (which has a notorious reputation for false positives) to diagnose and plan treatment of a cancer that did not even exist. Had a biopsy been done, they would have known that the nodes were not malignant...just recuperating.

Regardless of what the PET reveals, or any other scan for that matter, if something shows up...get it biopsied. Per the ACS, MRI's give a more detailed and clearer picture than does a PET. And furthermore, the ACS reaffirms what is now an OCF mantra--ONLY A BIOPSY CAN TELL IF CANCER IS PRESENT. And, as per the ACS, PET scans will tell a doctor where cancer might be present and tells a surgeon where to look when doing a biopsy. However, it is not an actual diagnositic test for cancer.

Best wishes for an all clear!

This information is very helpful. I copied and pasted it to a word doc in case we get a positive reading. If we do then I will question the doctor and ask for a biopsy.

Thank you both so much.