Hello!

I have been to this site before, just reading the forums and information, and decided to post. I'm not sure what I need/want; I think I just need to vent. :-)

In Aug 2008, I was diagnosed with SCC of right side of tongue and had surgery 10 days later. PET had showed possible node involvement, but pathology came back clear on all 32 nodes removed, so no additional treatment was necessary. Since then I've had a great recovery, very very minor speech issue (that really only I hear/feel). I was seeing my ENT every 3 months, then every 6 months.

At my regular visit in October, my ENT wanted to do a CT since no scans had been done in over a year. The CT showed a possible abnormality on the left floor of mouth (involving or near salivary gland), so a PET was ordered. It, again, showed a possible abnormality in the same location, but was not conclusive. So, an MRI was ordered. Due to another health issue, I had to wait about 6 weeks to have the MRI.

I just had the MRI 2 days ago so no results yet. I can't help but think it really IS something. It seems to me that if a PET can't rule it out, it is more likely it is an abnormality/cancer. My ENT has always been confident that recurrence is very unlikely, but the more I read, the less confident I get.

I'm not a worrier. But, once you've had cancer, as you all know, the thought is there. I don't like the waiting. And, honestly, I fear the results will be "inconclusive" leading to "wait and see" type of situation with a recheck in 3/6 months. I am the type that wants to know good or bad, make a plan and get it taken care of. I asked if any biopsy could be performed in the office, but the Dr said there is not. It would be a procedure done in hospital/surgery center, not in office.

I keep feeling the area, but I'm not sure what 'normal' should feel like and I can't compare to the other side due to scar tissue from previous cancer.

How common is recurrence/additional primary oral cancers?

Has anyone had cancer in floor of mouth?

Thanks for sharing your experiences!

Farina - I wonder if it depends on the doctor or the hospital he/she is associated with? When my son was diagnosed 6 years ago, his dentist sent him to an Oral Surgeon and he performed the biopsy right in his office. After that he was sent to an ENT for the rest of his treatment. Maybe you could check hospitals in your area and find an ENT or Oral Surgeon for another opinion.

Thanks for your reply Anne-Marie!

I had the biopsy of the tumor on my tongue done in the office so I know my ENT can do biopsies in the office, but for some reason didn't feel this could be done without surgery. Perhaps its in a quite vascular area, or is too deep. I'm not even sure exactly where the questionable area is. I'm pretty sure, but not positive. :-)

Since I've had the MRI, I will wait for results, then see what can/should be done.

:-)

None of the scans are 100 percent accurate, and none can prove cancer 100 percent. Only a direct biopsy can, followed by a FNAB, which is pretty close. If a lesion was small, visible then maybe a punch, brush or scalpel biopsy in the office can be performed, but it can effect future scans if any are redone, and if it is cancerous, although maybe not likely as the dr said, they don't want to start poking all around in your mouth looking for something that can't b seen, and possibility of spreading cancer too, and the things you mentioned are considered. There are many reasons for abnormal scans, not always cancerous, but they may want to do a direct biopsy in the hospital, if anything suspicious is seen, while doing a scope of the mouth, and throat under general anesthesia. As far as a recurrence goes, majority of recurrences occur the first two years, and you are over four years out. Try not to worry, which is easier said than done. I know how it is since I had 8 PET/CT scans, 3 CT, 2 MRI, and 5 FNAB in three years, and waiting is the worst. Try to keep busy! Good luck.

Welcome to OCF! So sorry you are going thru a scare right now. Waiting is horrible and since you havent been biopsied yet there probably will be more waiting in your future.

Here are some statistics about recurrences. First, they are not as common as many patients believe. Alot of members who post frequently may have had recurrences thats due to the one timers going back to their regular lives. The info is 10 years old. I am unsure of how often this gets updated or if any more recent studies have been conducted. Read the post by OCF's founder Brian Hill.

Recurrence Stats (Old OCF Forum)

Try to keep yourself busy so the time passes without too much stressful thinking "what if". I know its not easy to avoid thinking that way. If you find yourself going there, try to check the clock and say to yourself "ok...I will ponder this for only 5 minutes" then change the channel.

Best wishes!

[quote=PaulB]None of the scans are 100 percent accurate, and none can prove cancer 100 percent. Only a direct biopsy can, followed by a FNAB, which is pretty close. If a lesion was small, visible then maybe a punch, brush or scalpel biopsy in the office can be performed, but it can effect future scans if any are redone, and if it is cancerous, although maybe not likely as the dr said, they don't want to start poking all around in your mouth looking for something that can't b seen, and possibility of spreading cancer too, and the things you mentioned are considered. There are many reasons for abnormal scans, not always cancerous, but they may want to do a direct biopsy in the hospital, if anything suspicious is seen, while doing a scope of the mouth, and throat under general anesthesia. As far as a recurrence goes, majority of recurrences occur the first two years, and you are over four years out. Try not to worry, which is easier said than done. I know how it is since I had 8 PET/CT scans, 3 CT, 2 MRI, and 5 FNAB in three years, and waiting is the worst. Try to keep busy! Good luck. [/quote]

Thank you, PaulB. I do understand that none of the scans are 100%. My thinking is if CT and then PET both showed suspicious area, then I've gone farther from 'ruling out' and closer to 'ruling in' for lack of a better way to put it. Yes, the Dr did mention that biopsy (and probably better look at mouth/throat) would involve a scope, explaining why it can't be done in office. The suspect area is not visible and was apparently not palpable in Oct when I saw him for routine follow up.

I'm really not stressing about it. I just tend to research to gain knowledge. Yes, sometimes too much research for my own good. ;-)

I just take it as it comes, and deal with it when I KNOW what it is, or isn't.

Thanks again for your reply!

[quote=ChristineB]Welcome to OCF! So sorry you are going thru a scare right now. Waiting is horrible and since you havent been biopsied yet there probably will be more waiting in your future.

Here are some statistics about recurrences. First, they are not as common as many patients believe. Alot of members who post frequently may have had recurrences thats due to the one timers going back to their regular lives. The info is 10 years old. I am unsure of how often this gets updated or if any more recent studies have been conducted. Read the post by OCF's founder Brian Hill.

Recurrence Stats (Old OCF Forum)

Try to keep yourself busy so the time passes without too much stressful thinking "what if". I know its not easy to avoid thinking that way. If you find yourself going there, try to check the clock and say to yourself "ok...I will ponder this for only 5 minutes" then change the channel.

Best wishes! [/quote]

Thank you for the link, Christine! In reading through the posts, I recalled a few things my ENT had said at a previous visit. He said that even though he doesn't know of any correlation between oral cancer and other future cancers he's seen women that had oral cancer with supposedly unrelated cancers later in their lives. It kind of threw me a little, as he's a very positive, but thorough and honest Doctor, and he hadn't mentioned it previously. (This was less than a year ago that he said it.)

At the time of my tongue cancer, he did not have it/me tested for HPV. His reason was that I already had cancer, so why get tested? I understand and accepted that reason. Having gone through genetic testing for BRCA mutation and dealt with the results since then, I now wonder if that is something that should be done. If nothing else, just for more information. Is it becoming more standard to test for HPV with oral cancers? Is it like BRCA mutations where if you have HPV your risk of oral cancers (along with cervical & any others liked to HPV) is higher? If that has been proven, what is the increased risk?

If you haven't figured it out by now, I've always had an interest in data, statistics, research, and logic. That's why I'm asking the questions.

Thank you for your patience. I'm sure you've answered them a lot of times already!

I've read the stats out there for recurrences in Oral and Oropharyngeal Cancer, and others, as well as risk for secondary cancers due to treatments, especially IMRT radiation, which go up every year, and the the 2 and 5 year overall survival rates, but some stats are outdated, and usually don't include HPV status, which is a prognosis factor, age, health status, tumor grade, type of treatments, doctors experience, smoking, drinking, distant metastes, and any underlying health issues, which all factor in. The two biggest prognostic factors for Oral, Oropharyngeal cancer are nodal involvement, and tumor thickness, since most of these failures occur locoregionally, and not from distant Metastases, so controlling the nodes are important, and most recurrences occur the first two years. Some patients don't mind knowing the stats like myself, but some do not, and does them no good, and probably why doctors don't discuss it much, plus they have no crystal ball as to what will happen, and everyone is different how they respond, recover, and why some have recurrences while others don't. I've had cancer 5x in three years, which is more unusual than most, but was lucky that they were found soon enough to be treated, so far.

Farina,

We all hate the wait but let's see what the MRI reveals.

Did they tell what uptake value the PET disclosed?

What a tongue Primary location HPV testing is not normally done.

Farina

I've lost track of how many Petscans, MRIs and CTs I've had over the last five years (good project to check on those numbers from my files), but I remember worrying about each and every one of them. As for the statistics, just remember that for individual patients, it's always 100% or zero. The other figures are just approximations as spelled out in Brian's old post. (PS: you can tell it's an old archived post due to its now outdated comment that you can't do another round of radiation after getting the full dose. Paul, Kelly, myself and others are proof that is no longer the case due to advances in radiation delivery such as CyberKnife.)
Wishing you good results on the MRI
Charm