Hopefully the old saying about how the third time is the charm holds true. This is my third time around. First time in april 08 with a partial glossecotmy, 2nd time with a lump on the right neck and a modified neck dissection in January of 09 and now a lump on the left side, cofirmed by FNA. The good news is from the PET scan, the lump is the ONLY hot spot on me. Now they (the team) have to decide what to do. It is out of the area that they radiated before so they could do any or all of the three methods (surgery, radiation, chemo). I am talking to them about the cyber knife (that I heard about right here) After the three of them put their heads together, then that may be what they select followed up with some chemo. Last time they did it concurent. They have already said that what ever they do this time they will do sequentially. Oh Joy, they get to drag it out. I still don't have all my taste buds back from last time, at least the "sweet" ones. I do have the rest. The lymphadema under my chin keeps me on my toes when it comes to swallowing though. It pushes back against my throat, and I cough a lot. Maybe this is tied in with my new lump, I don't know. After the neck dissection they said "oh we got it this time, you are cancer clear". Here it is 6 months and we have a new one. When I had the neck dissection, I was able to work from Home, and that helped a great deal. Hopefully I can do it again. It keeps your mind off of everything, but you all know that. I still paln on retiring the end of January though. I told DW that we are going on our retirement cruise, if she had to wheel me. Sorry I am rambling. I don't mean to do that. It will be a week or two before they can all get their heads together. so I will probably start what ever about the 1st of November.

ehall

I am sorry to hear it came back a third time especially since I am battling that fear myself right now. I can testify from personal experience that CYBERKNIFE is the way to go if you can. what an amazing difference CK was from the IMRT sessions. The beam is so focused that the side effects are minimal compared to IMRT. One suggestion, ask for Ativan to keep your relaxed and still for the 45 minutes to an hour each session takes. Plus get an extra sheet put down on the lead bed as it gets tough on your back and sitting bones.
Finally, I had them put a mouth hole in my face mask this time and it really made it much more comfortable.
Good luck
charm

Thanks Charm for the advice. I guess I am a little morbid because I still have my mask from last time. I know what you mean about your back hurting. It was all I could do to hold still long enough for the PET scans. MY RO called me today and scheduled me to come see him on Monday. MY ENT emailed me to say that he is consulting with another surgeon as well so the team is humming. DW is having a hard time. She feels that they found it now lets get it going. I understand her anxiety but I have to hold on, for her. I wish I could help her more. She feels that she should be able to do more to help me. I keep telling her that she is by being there with me every inch of the way. sometimes I wonder who has it rougher, the caregivers or us.

I would say the caregivers have the tougher task with us and our crazy thoughts. We have no choice and they do, but a good CG will be there.

Hi

So sorry to hear about your recurrence and glad that you have such great treatment options. I am a caregiver worrying about my partner having a recurrence -waiting for tests at the moment. I dont know whether its worse for us, but its certainly different. I wrongly or rightly, feel I have taken responsibility for my partner getting the best treatment possible, because I have read much more about H&Ncancer and have a far better understanding than he does of risks and possible symptoms. I am impatient like your other half and worry like mad, which upsets and irritates him. I can really understand where she is coming from. Sounds to me like you are able to talk more openly about where you are both at than we are. I would celebrate that and have lots of chats about how you are both feeling if I were you.

Wishing you both well,

Cathy

A doctor update. My RO says that this tumor is too big (the size of a chicken egg)to use a cyberknife. It also sits right on top of the sternum bone under the chin, so the RO wants to radiate a big piece of chest, to get the other lymph nodes that are in the area. I do have an appointment with the Head and neck surgeon's specialist next Monday. This guy is the guy the other head neck guys go to when "they" are not sure. Oh joy. I also got to see a dermatologist who did a punch biopsy on the rash radiating out from the tumor area. They just flat don't know what it is, but feel they absolutely need to find out. The RO is ready to go, and the MO is ready. Apparently they are talking aobut doing 5FU during the radiation and then Cisplatin afterwards(?). They are waiting on the surgical side of the house. We will see what we will see. Thanks everyone for sticking with me.

Sorry you're about to go through this again, ehall1. Let's hope that it will be done once and for all.

More update. First the bad news. I went and saw the surgical specialist. Because the tumor has grown even more he and the team feel that he had better surgically remove it or the radiation and chemo won't be enough. They may have to remove part of the nubrium bone and will be taking a piece of my chest wall muscle and skin to make a flap to cover the hole. He feels if he doesn't do that at the same time I could be very very vunerable because of the all the blood vessals that will be left exposed including my carotid. This is sure a new one. It still only shows as being just the tumor though. That is the good news.

Sounds like you have a rough road ahead, but having a plan in place sure makes one feel better. Soooooo glad to hear that the tumour has not spread. Keep us posted.

Donna

Sounds like a big surgery. Are you doing surgery alone or will they follow w/ chemo and radiation?

I will keep you in my thoughts. I just read your earlier post and I hope you and your wife are able to enjoy a lovely cruise early next year!

Ehall
So sorry you will be joining the our little club of two radiation masks holders and that they can't do Cyberknife. Did they ever find out what that rash was?

They have no idea what the rash is, only that is it isn't cancerous. Sorry but no mask. Because it is under the chin, they won't be doing a mask. They will be shooting from the throat down about 10 inches, in fact it will be about the size of a standard sheet of paper. The Surgeon and the RO said that I should be healed enough from the surgery about 3 weeks after to start the Radiation. The RO likes the surgery, but the MO thinks it is a waste of time. The surgeon feels that if I have to go, then metting to the lung is a lot less painful than if it eats into the trachea and throat area. He says that that is not only painful but nasty. The MO says that I have about a year. The surgeon says the same, BUT, with out the surgery then it is for sure only the year. With it, who knows I could be one of the 5%. I am going with the surgery.

Well I had the surgery last week on Wednesday the 4th. The tumor had really gotten nasty. It had gotten to the size of a half a grapefruit, under my neck, on top of the sternum, plus it was purple and oozey. The surgical team was a double team, Head and Neck, &, Thoracic. They snipped the clavicles and the #1 rib (both sides)and then took the whole mass of bone, and tumorous material completely out at one shot. Apparently it left quite a hole. They then went under my left breast and cut a big circle of muscle/skin and then then swung the whole thing up into where the mass and bone came out, sewed the whole thing down. Like the head and neck specialist said, this gives me 5 more percent. I will take my 5 percents anywhere I can. Like DW says, someone has to be in the five per cent, why not me? Supposedly in 3-4 weeks, I should be ready to start the next round of treatment, with the MO and the RO.
Has anyone ever switched MOs? I can't put my finger on it but mine, seems too "nice". Is that silly? I would rather she be tough as nails. Like that would make any difference?

My MO was really nice but my Cisplatin was really nasty. I think that's the important thing. lol

They took the tumor out as well as the manubrium bone (top of the sternum). To take the manubrium, they cut the first rib on both sides as well as the cut the clavicles where they connect. I have started radiation and they currently have me on F5U. The only bad thing is that I have all of these little tumors popping up on my chest. They are treating me as if I had skin cancer for that part, as well as the deeper treatment. The good news is that by doing the skin cancer treatment (still SCC), it has a very high rate of stopping that; the bad news is, we still don't know where or if the other is going. They are talking about doing the Cisplatin cocktail, once a week on top of the F5U.