Hi All,

I continue to scour the forum archives for information but think I need some direct input from the knowledgeable people that have come before me to help with a decision after my PET results. Basically, the decision is whether or not to have surgery to remove a suspected node (which they would end up removing the nodes in the region).

The test results were generally positive, and used terms like "marked response to therapy, minimal residual activity compatible with near complete/complete resolution. SUV of 1.9 although this could represent reactive change, this is technically indeterminate." Bacically, there is a node that shows moderate uptake. This same node was biopsied 6 weeks ago (too early in hindsight) but the results did come back negative.

I met separately with my MO, RO and ENT surgeon to discuss the results of the post treatment PET. The MO and RO seemed very positive about the results and were in favor of waiting and repeating the PET in 3 months. The ENT surgeon is recommending surgery. The obvious questions were asked regarding surgery risks - which I am not sure I fully comprehend given the dance they have to do with the nerves in the area. It is a bit more unclear the risks of waiting (spread of cancer vs. getting it now if it is in fact residual cancer).

Thus my dilemma. After meeting the MO and RO, I was pleased with their positive interpretation. Meeting with ENT surgeon threw a twist into things. I believe the ENT is taking the aggressive approach to ensure we get it all since I am still young, while the RO and MO are more comfortable with the wait and re-test.

Not sure if I can offer any more information to get some experienced insight, but that is where we are at -- decision time.

Thanks in advance for thoughts/guidance.

Jasper.

Jaspar, What is the size of the node, is it palpable? original TN stage? Studies show there is better outcome with a planned neck dissection than a "wait and see approach." Some do it anyway, regardless or when there are signs of an incomplete response, such as a palpable node, scan. On another note, most scans are clear at three months, and could be reactive. Personally, I would rather do a neck dissection, although the choice is yours, a lot can happen in three months. There are risks with any surgery, and the neck is a complicated area with major body functions involved, but the ENT's make it seem easy, plus their experience counts.

Good luck with your decision.

Hello Jasper....as a third timer this time inoperable....going through rough chemo. I highly recommend following your ENT advise....get this possible cancer out! Lymph node dissection is not that painful postop. I had left side partial dissection and last year I had mini on right side. To me that surg., minimal compared to tongue.....etc., and ease worry of recurrance. Hope I helped and prayers your way.

PaulB,

I did not get the size of the node, did not see it on the report nor did the Dr.'s provide. Original TN stage if I get this right was T1/T2 N2CMO.

Jasper.

That's ok. N2c may matter. It's either 2 bilateral or contralateral lymph nodes more than 6cm. I'm not sure, but contralateral may be involvement with more than one lymph node level, usually II, III or IV in oropharynx, oral usually effects Level I first, bilateral is both sides of the neck, ipsilateral one side. I updated my post.

Jasper, thats a big decision you have to make!

Please think about these things while you decide which path to take. By watching and waiting whatever is going on has time to grow and become a serious situation. Ive seen many patients go thru oral cancer recurrences, many of them had bad outcomes. Oral cancer is hard enough to get thru once, let alone ever having to go thru any further treatments for it again. The watch and wait method will give you a very long apprehensive 3 months to go thru. Think about how you will get thru every single day wondering if you have something to worry about or not. I wouldnt wish that kind of stress on my worst enemy. If you decide to go ahead and have the surgery then you will not be second guessing everything for the next 3 months while waiting for the check up. If it were me, I would lean towards taking care of things now instead of having a bigger issue (could be a serious life threatening problem) down the road. But its up to you.

Hi there... My opinion.. have it removed. I am assuming the biopsy you had to this node was an FNA - they are a valuable tool in diagnosis, but not 100% accurate in that they are only as good as the tissue removed. So if the node had only a little cancer in it at the time, then it could have missed it. Rather than take a wait and see approach (cancer can be aggressive, and move quickly, and once it is in the nodes it has access to everywhere.) I would want it gone. The dangers of leaving it, outweigh any potential issues with removing it and a few friends. Assuming your ENT is experienced, and they are on the lookout for difficulties in healing.

hugs and best of luck.

Jasper,

Three choices seem acceptable to me. One is to wait as the RO and MO recommend. Two would be to schedule another FNAB 6-8 weeks out to see if the node remains benign. Three would be to have it removed now, not knowing it is metastatic.

Like others doing nothing seems like a long time, Surgery might be not needed while the second one straddles the line. Wait some but get another biopsy and watch like an eagle.

What is contralateral lymph nodes, anyone? I don't think I had it right, and may be involvement with near midline cancer going to the opposite side of where the cancer is, such as in areas of the BOT, Tongue midline. Jasper, is yours bilateral or contralateral?

PaulB - Not sure what contralateral is. My original Dx was bilateral lymph node involvement. Currently there is only one node that shows moderate uptake. It is the same node that was the largest at diagnosis.