Met with my MO today. The meeting did NOT go as planned; she 'forgot' that she planned for the entire team (except the RO, who is out of town) to meet w/me today. However, she did grab the surgeon and had him examine me (after they reviewed my recent test results). This surgeon was one of two recommended by my RO and is not my usual ENT... I'll call him Surgeon #2.

Interestingly, both Surgeon #2 and my MO characterized my recent PET/CT as "negative". As mentioned earlier, the PET/CT report says that the FDG uptake has "significantly resolved"; I see this as different from "completely resolved" and assume it indicates that there is still some FDG uptake... if so, then these two doctors are basically telling me there's not very much FDG uptake.

After reviewing my PET/CT with my MO, Surgeon #2 had a good look at my throat -- both through my oral cavity and with a tube down my nose. In the end, he said he's "on the fence" about whether or not I should have a ND. Later, after he left, my MO told me she thinks that I should have a ND.

Overall I felt more comfortable with Surgeon #2 than with my usual ENT. He took time to describe the ND procedure in some detail, including the kinds of complications he may encounter. I understand a little better why they do not promise not to "take" the SAN, IJV, or SCM muscle before surgery... but he at least said that he wouldn't "take" these unless it was necessary to do so.

In the case of the SAN, he said that in some cases the lymph nodes easily pull away but in other cases they tend to "stick"... if they "stick", the SAN can be damaged while removing the lymph nodes. On the other hand, before removing them, they'll take a biopsy of the lymph nodes that surround the SAN and do a quick analysis... if they seem to be cancerous, he'll just cut the SAN and take it to be certain he's gotten all the disease.

The IJV and the SCM muscle is similar. He said some surgeons/institutions just go ahead and "take" the SCM muscle as standard practice... doing so makes it easier to remove all the lymph nodes that need removing. But that is not his practice; as with the SAN, he only removes the SCM muscle if he needs to do so.

Some nerves are necessarily cut and, as a result, I will end up feeling numb on the left side of my neck/face. They say this numbness will go away over a period of 1-6 months... but there may remain a slight difference in feeling between the left and right sides. There is also a small (e.g. 3%) risk of damaging a "mandibular" nerve; this would give me a crooked smile.

So the decision is up to me. My MO threw some statistics at me but even I can't absorb their significance in such brief conversations... she talked about false-negatives on PET/CT scans (whereas, last time I met with her, she was fairly confident that the false-negative rate was low) and said that 30% to 45% of cases like mine have residual disease (whereas, last time I met with her, she said it was 25%). That includes both HPV+ and HPV- cases and she said she's seen some "informal" data that indicates HPV+ cases generally do better (as expected, since its known that HPV+ cases respond better to chemo-radiation treatment)... so maybe my statistic is closer to 30%. But she said its not 5%. She said if I was N2a or less, or if my nodal mass was completely resolved, she might not recommend surgery... but I was N3 and my nodal mass is only partially resolved so she recommends surgery just to be safe.

Whereas, in my last appointment, my MO talked about possibly deferring the decision... now she says I need to decide either to have the surgery or not to have the surgery. I think she may have changed her tune on this after talking with my RO... he had frowned when I told him that she suggested deferral was an option.

Like my ENT, Surgeon #2 says we have a "window" now to do the surgery... but I had assumed this was because they were concerned that the cancer would be growing... instead, its because they know that my tissues will soon get to be fibrous (from the radiation) and this will make the surgery difficult. [So now I need to worry about getting fibrous tissues - what will this feel like, how will it influence my quality of life, and what can I do to mitigate this?]

Of course, if I have the surgery, the tissue will be examined and my guess is that it will show negative for the disease - in which case they want me to look on the plus side: that recurrence is highly unlikely.

So, whereas last time my MO left me believing that a negative PET/CT would indicate I don't need surgery... here I find that she still recommends surgery. Basically, she's one of 3 doctors (the others being my RO and my ENT) who are recommending surgery simply because the large N3 nodal mass only shrank to a 2 cm x 1.6 cm x 3.9 cm mass. At this point, there is nothing to indicate its anything but benign; its not growing (my MO even remarked that it feels a little softer than a couple weeks ago) and the PET shows negative. Nonetheless, I'm statistically at risk and they like to operate before the tissues become too fibrous. I'm scheduled to get an ultrasound-guided FNA, but I'm sure a negative result wouldn't change their opinion. Only Surgeon #2 says that he is "on the fence" about this.

This is a tough decision.

PS) A colleague had ND surgery many years ago by Dr Wayne Koch at JHU. He felt that Dr. Koch did a great job for him. Also, my MO knew immediately who I was talking about (I referred to "Koch at JHU", and she said "Wayne") and she spoke highly of him. So Dr Koch is another surgeon for me to consider.