Hello,
I'm a previous poster to this site, but it's been a while. I finished treatment in May (this year). I had Stage 2-3 (depending on which doc I talked to) oral SCC in the lateral tongue towards the back of my mouth. Did 35 IMRT days and 3 rounds of Cisplatin. Surgery was deemed to be too invasive due to the size/location of the tumor.

Finally got to do my PET scan to see if we got it all. My doc said prior to the PET that he could still feel a bit of mass in there but just couldn't tell if it was fibrosis or leftover/recurrent tumor. Got the PET scan about two weeks ago.

The PET scan came back suspicious for activity in the same general area as my tumor was, and a biopsy was recommended. I had the biopsy surgery yesterday and am now awaiting results.

I know it's different with everybody, but I'm curious if anybody had experience with the first round of treatment not getting it all?

thanks
Steve

Hi Steve,
Of course no doctors or treatments can guarantee any patient that all cancer cells can be killed after the first round.That's why the follow up scans are very important to see how effective the treatment has been. The PET scan may show false positive results and the biopsy will confirm if the suspicious part is cancerous or not. I think some members here who have similar experience as you can tell you more. I want to bring your thread at the top to alert others.

Karen

I hope and pray it was a false positive on the PET SCAN.

Steve, you have asked a question that no one wants to answer- but the truth is "yes, there are people who did not become cancer free on the first round". Hopefully, you are not in this group-but if you are- there is still much that can be done to combat this disease. Stay positive and stay pro-avtive. Amy

Steve:

I had a recent similar scare. I finished rad and chemo treatment for BOT in mid-July. Docs did first scan end of August and I was told that the scan results could not clearly be read. My ENT advised that she wanted to admit me for one night and to do a direct laryngoscopy with biopsy to BOT. If results were positive she was going to go ahead and do necessary surgery while I was already under. It was quite scary not knowing until I woke up whether or not a portion of my tongue was removed. I had already been advised that such surgery could result in a permanent speech impairment as well as permanent taste bud destruction. I woke up in recovery room and immediately began talking to myself out loud to see if I had a speech impairment and found nothing. Everything came back negative including mass of lymph nodes and surrounding tissue she removed from right side of my neck. I just have an ugly 3" incision that is now healing.

I was told that it was quite common for the first scan not to be conclusive with BOT patients, typically about 50% of the cases. Your situation is probably the same with no worry.

Bill Dozier

Wondering about my husband's symptoms also: He is 2 months out of Chemo & Rad. I thought all of his inflammation from the radiation had subsided. Over the last 10 days or so he has had bouts of N&V, (he has a PEG tube) and the opposite side of his neck is swelling up. (tumor site originally BOT & left side of neck). I could only get an appt. for 2 weeks from now with his ENT, but I am worried about recurrence already. Does this sound merely like more post treatment stuff or should I truly be worried? Any comments will help. Two weeks is a long time to wait to find out something....