Thanks again for your responses.

My ENT's office scheduled my biopsy for 11/23/09 with a follow-up scheduled for 12/01/09. This does not sound as if they are in any hurry. I've been thinking more like doing the biopsy, and getting the results, all by early next week. They were able to move this quickly on a biopsy they did last March (when they were initially trying to diagnose me), so I know my expectations aren't unreasonable. Their lack of any rush makes me think my ENT is just a "guy with a knife", and he's looking for a place to use it.

Thanks to my nurse, I got a copy of my recent PET/CT report. (I also have a copy of my previous PET/CT report from 4/22/09, before I had any chemo or radiation treatment.) These reports don't use terms like "positive" or "negative". The older report talks about "intense FDG uptake" in the large nodal mass on the left side of my neck while the recent report says this "intense FDG uptake" is now significantly resolved. I'll reserve final judgement awhile longer (at least until after I've heard from my medical oncologist), but this sounds very close to a "negative" result for this nodal mass and makes me more comfortable with the notion of deferring surgery. The recent PET/CT notes a few new areas of FDG uptake, but none of these make me concerned; for example, the left tongue base shows "nonspecific" uptake which "may represent physiologic muscle activity" and I know I have a sore there (from radiation treatment) which hasn't fully healed.

My ENT also responded to a few follow-up questions that I sent him last night (via email). One was whether the recent PET/CT report and images would help him be more precise/definitive about the possibility of sparing the SAN, IJV or SCM muscle; his answer was basically "no". Another was whether I should keep the PEG to help with recovery from surgery (or can I have it removed now, since I'm no longer using it); his answer was that neck dissection shouldn't interfere with swallowing unless the vagus nerve is involved or injured. Great... now I need to find out what a vagus nerve is, whether its involved, and whether its likely to be injured by this surgery.

Well, I feel better having a little more information. Especially since it makes me think there may not be a need for surgery... at least not right away.

Rob

PS) To answer some questions: I'm being treated at Mass General Hospital (MGH) in Boston. I think MGH is among the top-four treatment centers for head & neck cancer in the USA; the other three being Dana-Farber (Boston), MD Anderson (Houston), and Johns Hopkins (Baltimore). I have a colleague who got ND at Johns Hopkins many years ago and he felt his surgeon there was top-notch; there is no reason to restrict myself to Boston-area surgeons for a 4 hour operation (plus a couple days inpatient stay) so I may consider traveling for this.

Charm: Who was your ENT and which issue of the Washingtonian has that "top doctor" report?

Rob

My ENT surgeon has made the top doctors of Washingtonian at least the last three years. I did a google search but you have to either be a subscriber (as I am) or pay $5 for access. Anway here is her information from the most recent Washingtonian top doctors that I just accessed:
[quote]Top Doctors

Thousands of Washington, D.C., Maryland and Virginia physicians were asked: If someone in your family were sick, whom would you call? Here are the results.[/quote]
[quote]
Catherine A. Picken
Otolaryngology
Downtown DC
2440 M St NW Suite 620
Washington DC, DC 20037
T: (202)785-5000

Hospital Affiliations: GU, GWU

Accepted Insurance: Aetna HMO, Aetna PPO, CareFirst BC BS PPO, CareFirst BlueChoice HMO, CIGNA HMO, CIGNA PPO, Great West PPO, Kaiser Permanente HMO, Medicare, NC PPO, OneNet PPO, PHCS Multiplan PPO, United Health Care HMO, United Health Care PPO[/quote]

Your surgeons in Boston may be just as good and I would think you have similar surveys in Boston. It's the podunk towns without CCC and top notch docs that usually require travel.
I have been going to the Lombardi Cancer Center at Georgetown in addition to her private office. She did the surgery at Georgetown.

Many cities seem to have these Top Doctors lists that can be Google searched as "[City's] top doctors 2009".

In San Diego, County Medical Society members are asked to vote for those board-certified doctors to whom they would refer their patients and family. The member is allowed to vote across some 30 specialties.

I also checked the list from previous years. A couple of my doctors consistently show up, and a few never made it. It seemed that the younger doctors were rarely on the list.

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.

Rob,

You certainly have taken an analytical approach to this problem and if you where trying to diagnose and treat a problem that was not so deadly in nature I would probably agree with you.

For me this is not a question of probabilities one way or the other where the outcome can result in an unpleasant result. This is a case where worst-case scenario is death. If you make the wrong bet, you might just pay with your life. I would approach this question as one in which I was trying to avoid the worst case outcome.

Kelly

Hi Kelly,

Thanks for saying I've taken an analytical approach to the problem. The comment really speaks to who I am. Ever since I was a small child (and had a crush on my 4th grade math teacher), I have approached problems analytically... its a source of pride really.

I understand (and agree with) the gist of what you are saying, but even the doctors know that probabilities have everything to do with this. They are constantly weighing probabilities as well as costs. In this case, one of the costs is death while the other cost is quality of life (since ND surgery can lead to lifelong shoulder pain and weakness as well as other unpleasant side effects). [Mathematically, what we're talking about is Bayesian analysis.]

There is a certain probability that I have live cancer cells in my neck. The questions are: (1) What is that probability for me, and (2) Is that probability large enough to warrant having the ND? If the average healthy Joe (who is not a cancer patient) walks in off the street and asks the doctor if he should have ND, the doctor (of course) will say no... because the probability that Joe has live cancer cells in his neck is miniscule. However, if for any reason this probability gets above 5 or 10 percent, the doctor is likely to recommend ND. If he recommended ND at the 0.1% level... it means he's caused 999 people to suffer the ill-effects of surgery just to have the *possibility* of saving 1 life.

The reason the doctors do all their tests is to try and ascertain what the probabilities are. No test is perfect but a good test will have a low probability of a false negative AND a low probability of a false positive; medical lingo uses the terms "sensitivity" and "specificity"... in communications they refer to a "receiver operating characteristic (ROC)". Unfortunately, the tests the doctors have to detect live cancer cells in my neck are NOT very good. So far, there is nothing to suggest that I have live cancer cells in my neck other than the fact that my nodal mass is still fairly large: it doesn't seem to be growing and the PET/CT result is negative - but the worry is that this result might be a "false negative". I'll have a biopsy done but, even if that's negative, we'll still worry that this too could be a false negative.

I'm now starting to dig into the medical technical literature on this and have found a bunch of interesting links:

http://www3.interscience.wiley.com/journal/117914986/abstract
http://www3.interscience.wiley.com/journal/104535343/abstract
http://www.springerlink.com/content/6144q68r7m763867/
http://linkinghub.elsevier.com/retrieve/pii/S0194599807002811
http://archotol.ama-assn.org/cgi/content/extract/134/10/1122
http://jco.ascopubs.org/cgi/content/abstract/24/9/1421
http://clinicaltrials.gov/ct2/show/NCT00720070
http://www.issoonline.com/content/1/1/6

As I read more, I become more convinced that I should go ahead and have this surgery just to be safe. But its unfortunate that we don't know more. For example, the statistics I've seen do not distinguish between HPV+ and HPV- patients. For example, if I see a statistic that says (I'm making this up):

"30% of HNSCC patients who started with N2 or N3 disease, and underwent chemoradiation treatment to at least 70 Gy, were subsequently found (after neck dissection) to have residual disease in the removed lymph nodes"

I wonder: Were these patients HPV+ or were they HPV- ??? We know that HPV+ patients respond much better to chemoradiation treatment than HPV- patients so, if they were all (or mostly) HPV- patients, its still quite possible that the 30% figures drops to less than 5% if the patients are HPV+ like me. Unfortunately, its only recently that HPV status has been shown to be an important factor in HNSCC patients, so (to my knowledge) the studies haven't been done yet.

So what is the probability for me? I don't know. That's what I'm trying to figure out. Yes, its likely that I'll find this probability is large and so will end up choosing to have the surgery... but as I take time to do this research, I'll also try to figure out who I should choose to do the surgery and what, if anything, can be done to mitigate (or avoid) any bad side-effects of the surgery. I'll do everything I can with the time I have available to try and get the best possible outcome. No sense being cavalier about this.

Rob

OK Rob, fair enough.

The other action I took was to take my doctors recommended course of treatment and get it to three of the best institutions I could find and get second opinions (U. Penn, University of Michigan, Johns Hopkins). They all concurred.

Kelly

Rob

Well thought out plan. For what it is worth, my experience with the neck dissection is that is was not as bad in affecting my quality of life as I had feared. Granted I was lucky in that my surgeon was able to spare all the muscles and nerves (but like your Surgeon #2 there were no guarantees going in, just a promise to try and avoid it), but the numbness is slowly going partially away now 8 months later. I did need extensive physical therapy on my left shoulder as even without being cut, they were traumatized. It was a kicker though to go through this procedure only to find out that not one of the lymph nodes removed was cancerous. Oh, the old Bayesian dilemma. You do the math and you pay the price

Kelly & Charm,

Thanks for the responses. I just got back from an evening of live music at a favorite bar. There I spoke with a gal whose former boyfriend had similar cancer. Turns out he refused exactly the ND surgery that I'm contemplating. He was fine for 7 years, then he had a recurrence and it killed him. Sobering story.

Nice to know about the numbness and the need for PT... better for me to go into this mentally prepared. They say you should be pleased to know none of the lymph nodes were cancerous, as it bodes well for ultimate survival; on that basis I'll offer my congratulations. What that ignores, of course, is the implication that surgery wasn't needed; so all you got for your pain & suffering was some peace of mind.

Cheers, Rob

OK. I just sent a note to my MO saying that I will have the ND.