Thank you all for your support and excellent advice. I am so glad I found this site!

PaulB, that is exactly the plan as it stands at this point. The plan (pending any modifications from the coming appointment) is to do a full glossectomy with a flap reconstruction along with a neck dissection to remove the lymph nodes on the right side. The nodes on the left are already gone from the first surgery. We have not discussed rads or rads+chemo yet, but I am pretty sure that will be in my future. I had rads and Cituximab (clinical trial) after the partial glossectomy.

That's a good question about HPV. I don't know if they tested for it or not. If they did, it was never discussed. I do know they did all kinds of tests on the original tumor as part of the Cituximab clinical trial over and above the norm. Also, I think I am throwing the term "base of tongue" around too casually. The tumor is more forward than that, a little behind my wisdom teeth it seems. This is not far behind where the original tumor on the left lateral border was located. The original tumor had penetrated some capillaries, and at that time the surgeon was worried about stray cells escaping, hence the radiation treatment. It seems reasonable to expect that this recurrence is from one of those cells. That is a great question to ask, I had wondered about HPV myself the first time around.

Sophie, first let me say that your husband is a lucky man to have such a fine advocate and caregiver as you. With you handling all those details, his level of worry must have been greatly reduced. I am fortunate that my wife is also an excellent caregiver. She asks all the questions I forget to ask, and she is more frank with the doctors than I might be.

As with the first time around, I am having my treatment at University Hospitals Seidman Cancer Center in Cleveland, OH. It is a top-notch facility that I am lucky to have just 45 minutes away from my home. There is an entire floor (Seidman 5) dedicated to head and neck cancer patients with an elite nursing staff that provides superb care. I could not have asked for better treatment during my 8 days there the first time around. I expect to be a there a little longer this time and expect the same wonderful care. If not for the annoying cancer part, it would be like staying in a luxury hotel with private rooms and a great view. :-)

My flap on the first reconstruction had a strong "whoosh" as you describe. The doctors and nurses all marveled at it. Fortunately, mine stayed in place and healed nicely. It's definitely something to be cautious about and monitor as you describe.

You've compiled a list of great questions that I will want to ask. One that caught my eye in particular was to ask about a drug to protect the salivary glands during radiation treatment. I didn't know about this on my first round of radiation and was not offered it. My dry mouth has recovered quite a bit in the last few months from the first round of radiation, to the point where it is approaching "normal." If I can do something to even partially protect my salivary glands on the second round, that would be great.

Good idea too on the recording. The first time, I got around to being able to speak within a couple of weeks of surgery. It will take longer this time around, and when I do manage to talk it won't be as intelligible.

I am trying to avoid torturing myself now with "what if" questions:
- What if they (or I) would have found it sooner? Would the treatment have been any different? Answer: It was found exactly when it was and there's nothing to do but move forward. On the flip side, it could have been worse and been found later.
- What if they would have done a full glossectomy the first time around? Would it have prevented a recurrence? Answer: Maybe, but the first surgery was entirely reasonable for the cancer as it was at the time and was aggressively followed up with radiation + Cituximab.

Aww you are a supper guy I can tell you that you are surrounded by love. I asked my step brother who did some work along side cancer radiation teams and he said that the saliva drug is controversial because it can cause faster rates of cellular reproduction. I have not researched this much myself but I know that it can also cause dizziness, sweats and vomiting, what I am more concerned about would be any interactions with cancer cells. Maybe someone in our OCF would be able to answer these questions in a more informed maner.

You did everything exactly how you should have under the care of very knowledgable proffesional and you can be sure that you are going to get the best treatments and outcomes again. I wasted a couple of weeks torturing myself and have accepted that I did and my husband is still doing everything in his power to be back to living again. Go forward and be focused in the challenge in front of you, trust in your gut and do not be shy to ask ask ask!

Much love, Sophie

Thanks for the info. You are in good hands at a fine hospital, and did what was advised. I would too. Good luck.

I was just offered the salivary gland med, I have a recent thread on it somewhere. Based on the fact that not many folks here got it, and those who responded did not like it, and after reading all the nasty side effects, I am going to decline. It seems dangerous. It also messes with blood pressure, and mine is too low as it is. Anyway, it was called Amofitine or something like that, Ethyol is the other name. Hopefully you can research it.

Thanks KristenS, I appreciate the information. I took a brief look at in on Wikipedia and there are quite a number of possible side effects so it sounds like a good choice to decline. I take high blood pressure medication now, so if I quit that in compensation I would not be to worried about my blood pressure getting to low. When it comes time for a radiation discussion I'll have to ask the oncologist about Ethyol and see what he says. If it was a no-brainer I am sure it would be standard protocol to give it to everyone, so there must be drawbacks. My saliva output has recovered pretty nicely from the first round, although it's taken the better part of a year to do so. Maybe the ol' salivary glands have enough bounce to come back from a second round.