I have just completed my second partial glossectomy within 6 months (same area). Both were stage I with clean margins. Preop CT scans were clear of additional abnormal areas with the second one not even showing the soon to be excised area as abnormal. Surgeon, after presentation to his group, recommends radiation. Without a clear "target" I told him I would be looking for a second opinion.

Suddenly he says, "How about a PET scan?" What I can't understand is:
1. Why this diagnostic tool is not used more frequently.
2. Why I didn't have it after the second biopsy.
3. If it doesn't show additional cancer areas, why radiation would even be recommended.
4. What other questions I should be asking.

Please help with any info

David,

I am not sure why the PET scan wasn't used the first time. It is typically used to identify all cancer sites in the body, even though it may not identify micromets. It is also a very expensive test and insurance companies balk at the cost if overused. Radiation is used to kill all the cancer cells in the area even if they have not grown enough to be detected by the PET scan.

Seek out a second opinion. Not that it sounds like your medical team has given you bad advice, but rather for peace of mind. Seek out somewhere with a lot of oral cancer expertise (i.e. Comprehensive Cancer Center) and learn as much as you can before the next appointment. There is a lot of information on this website that could fill in some of the gaps you have. Be dilligent but do it soon so you can determine the best course of action for you.

Ed

Davi,

I also had clean margins and no evidence of any spread to surrounding nodes after a partial glossectomy and neck dissection. The head and neck team at the surgical center that was treating me felt strongly that I needed to go ahead with radiation, and I believe it was at least somewhat related to the fact that the tumor was poorly differentiated, which can indicate that the tumor cells tend to move aggressively. As Ed mentioned, some of these cells may not be detectable by a scan.

I agree with Ed that it may make sense to get a second opinion from a different team, although they may come to the same conclusion as the first.

Cathy

Davi, I was diagnosed with Stage II/III on the floor of my mouth right side and left side of the tongue. I had one third of my tongue removed, partial jaw removal, floor of mouth rebuilt from chest tissue and radical neck dissection both sides. I had clean margins in both areas and tested negative for all lymph nodes. I did not have radiation or chemo. My entire team agreed on my treatment and that was four years ago and still cancer free.

I too would suggest another opinion. You need to have complete trust in your cancer team and their recommendation for treatment. I can't comment on a PET as I have never had one.

Good luck and take care.

Anne.

My initial diagnosis was occult primary -- which means they couldn't find my primary tumor. This was after being scoped several times and after an MRI. It was on the PET scan that they found my 2cm primary tumor at the base of my tongue. It is my understanding that PET can also be more prone to false positives than other scanning methods because it notes increased cellular activity, which could be cancer or scar tissue or other things.

-Brett

One problem with scans in general, including PET/CT, is that they cannot detect tumors smaller than 2mm (i.e. 1/8"). Although prone to some false positives in the immediate post Tx (due to scar and such), it is relatively accurate in pre Tx. PET/CT even more so.

In my case a PET was required as part of the pre Tx workup by the comprehensive cancer center. It verified the location of the cancer and no other "hot spots" which was a relief.

Based on the very agressive nature of SCC (especially in the case of the tongue), most physicians recommend a very agressive approach (and I believe most people will on this site as well). Ultimately you will have to choose which tools in the arsenal to use against your cancer. One of the tough decisions to make in treatment (especially for stage I tumors) is whether to radiate or not. Radiation is no picnic and I sure that if you have read the threads here about the side effects they have scared you pretty good. Bear in mind that many do NOT have severe side effects.

I "only" had radiation and chemo (no surgery) and it was rough for a long time. I am well now, enjoying life again and cancer free (today). Recent studies have shown that radiation significantly improves the odds of survival (at least in the case of breast cancer patients).

DaviR, take a good look at radiation. You have had two occurrences, which makes me a little worried. Radiation is no walk in the park, but as Gary says, some of us, including me, didn't have such a terrible time. Although I had a R side tumor, because SCC jumps sides with impunity, I had R&L rad because I didn't want to go through this more than once. I am now 2 years plus from all that, and have no regrets for having aggressive treatment. If you can get IMRT rad as I had, you will end up with saliva. I was so very fortunate to be able to have that, and today do not have dry mouth. That has traditionally been the worst part of rad, but with that out of the picture, radiation is a small price to pay for peace of mind, or as much as one can have with this awful disease. Go for that second opinion!

Hi DaviR, regarding your question 1, I never had any PET scan in my life.My team of doctors did not arrange one for me and even when I talked about getting one at my own cost, my oncologist thought it was unnecessary. I am almost 3 years post diagnosis and I just had my routine appointment this morning and everything is clear and fine. I have MRI, CT scan and ultra sound as my follow up tests.As for radiation, I am not in a position to answer that since I am of a very advanced stage and received both radiation and chemo. No surgery though.

Karen

Here's my take. I was borderline stage I/II tongue cancer tumor with no lymph node involvement (according to PET and CT scans as well as doctor's manual examinations). My cancer was well-differentiated.

My docs recommended radiation, but said that in my case it was typically consider optional because of the stage. I went ahead and did it because of the threat of microscopic cancer cells that may have escaped passed the margins.

Well, even though I had radiation, my tumor came back in my lymph nodes, just below the area where they radiated. In other words, there was microscopic cells that slipped into my lymph nodes undetected (smaller than what shows up on the scans). Since that area wasn't blasted with radiation, it regrouped and regrew there...

Basically, from all I've learned and read, you want to be as AGGRESSIVE as possible early in the game with this type of cancer. Even though I went the aggressive route, we weren't aggressive enough in that the docs chose not to radiate the whole neck. I would go for a second opinion, but I also would consider taking the most aggressive route now to save yourself the headache of what I'm going through -- which is now another round of radiation and possibly chemo as well to wipe it out for good this time (if we can)...

Getting through radiation is no picnic but it's doable... Good luck to you...

AzTarHeel - Pet scan scheduled tomorrow. Sounds as if I am in a very similar situation, with cells or sites too small to be seen, yet. How did you and the doctor discover the reappearance? I would prefer IMRT, but without specific tumor(s), it sounds like field radiation is needed. Good luck with your second rad.

Appointment on Friday 7/2 with rad oncologist.

Thanks to all for your help!

David

David,

My mom also had what her doctor called a recurrance after the first surgery. Very close to the original tumor but both my sister and I swear it was there all along. She did not get the radiation and chemo the first time around and had to endure a second surgery before the radiation and chemo.

I still think there is a possibility of IMRT for you but the radiation oncologist will know best. My mom who after her surgery with scans showed no cancer and they used IMRT to salvage saliva glands etc. With her IMRT they radiated her facial area on both sides (even though the tumors only came up on the right side) and her entire neck both sides all the way down to her breast bones. They just heavily concentrated on the area where the tumors had come up and gave those an extra strong zapping and those are the areas she had the most problems with after and during treatment but I'm pleased to say that almost 4 months after treatment she is doing well and just had a clean PET/CT scan.

I personally think that going through surgery twice for her and for us as family members sucked but there are people on the site that only had surgery and never had a recurrance. So its not really a question that can be answered as to whether or not you should get radiation.

My prayers are with you....
Dani

Hi David, sorry to take a few days to get back to you -- I was out of town at MD Anderson Cancer Center in Houston this week without much access to email and Internet.

Here's my situation. I went for an appointment to see my ENT in mid-April (three months after my last rad treatment). I had a PET scan scheduled for July, which marked the six-month mark. But my ENT told me to go ahead and do a PET ASAP "for my peace of my mind." I got it done in mid-May and it showed two hot spots (obviously not helping my peace of mind much).

One hot spot happened to be nothing (at least that all my docs and other scans can tell). The other turned out to be in a lymph node in my neck, just below the area where they radiated. It was confirmed during a surgery in which they did an excision biopsy. It's amazing because no one could feel it, not even me. It was just a little tender in that area to my touch. But the doc said it was the size of a quarter...

The theory is that this likely was there all along. So in a sense, it's good news in that it didn't recur in an area already radiated. Of course, the sucky part is that I have to go through radiation again, and add chemo to the mix this time as well... two to three more months of craziness...

Let us know how your appointments go... wishing and praying for the best for you...

I have learned more through this patient forum and web site than all other sites combined ( at least the non-technical) ones. Thank you. And now; the rest of the story.

Pet scan was clear of 7/2. Radiation oncologist appt on 7/3 said that second small tumor (removed 5/29) that didn't show in CT scan was probably a recurrence, but the end result doesn't matter. The recurrence of untreated SCC is extremely high and radiation is recommended. In fact the entire group of doctors making up the board were unanimous in that decision following my last surgery.

Ten days ago I wasn't ready for all of this. Thanks to y'all, I was at least better prepared to say, "Go." Being fitted for the mask this week with IMRT x 30 to follow. I'll also be receiving amifostine subcutaneously for as long as I can stand it. He recommended getting trays from my dentist for daily flouride treatments and using baking soda and water for brushing. Thanks for your support. My prayers are with all of you.

David

David,

Thanks for updating us on your progress. You're right about not feeling "ready for all of this". Too often with this illness you find yourself confronted with some immediate decisions about things you probably never heard of, or never knew much about before. At least it's good that you have a unanimous recommendation from your tumor board.

Best wishes and prayers as you go through this round -- I hope it puts an end to your cancer once and for all. Be careful with your nutrition and pain management as you go along -- it's really important to help get you through it. (And remember we're here for you when you need it.)

Cathy

David,

Good luck with this go around with the radiation. I also had a daily shot of amifostine for all 37 treatments (they injected in the upper hip/butt area). The only "problem" I had, if you want to call it that, is that the area where they injected would become sore but I alternated from one hip area to the other each time. I still use the flouride trays that my dentist made each night and so far all my checkups with my dentist have been great. Keep us posted and I'll be thinking of you while you make your way through this part of your journey.

Nancy

David -- it looks we'll be going through IMRT at about the same time. Of course, this is my second round, and I kind of feel like the old pro at the hospital.

I had my second mask done on Friday and am just waiting the docs to say "go", which will probably be sometime in the next 7-10 days. I didn't have the amifostine but used saligen pills instead for saliva. My saliva held up pretty well and I am thankful for that. One of the perks of IMRT typically.

Feel free to email me or send me a PM at any time if you want to talk, vent, ask questions or whatever. I'll definitely be praying for you and praying that the radiation does its job in both of us...

Eric

David,

Even though your decision was tough, think of Tod Beamer and the others on flight 93 somewhere in the skies over Pennsylvania. They had little information and had to make literally a split-second decision. I am glad you have found enough information to make the best possible decision you had to make for yourself.

I am hoping and praying God will lead you to exactly what you need to fight this horrible cancer.

Ed