Yesterday a received an email from my ENT asking if I could come in later that day at 2:50. to go over my case. On the ride over to the office I was wondering what news he had for me. I was I bit concerned because the last time that he contacted me for an appointment, Rather than his staff, it was to tell me that the tonsil biopsy had come back SCC+. He started off with the usual, how is that throat feeling? How is your swallow. Things of that nature. Then he started explaining the three arms of treatment. I hadn't heard that before but kind of knew what he was must have been talking about. As he went on It seemed I was correct in my assumption. He and my MO had taken my case to Kaisers tumor board. My whole team was in attendance the day of the board meting. Along with other prominent Doctors and specialists. And they were talking about options from These three arms of treatment. Not in such brash words he explains that the board had agreed that any further radiation was out of the question due to the fact that the risks far outweighed any benefits. So that arm is no longer an option. Arm number two, surgery was not going to be done because 30 of 33 nodes where found+ (the most he had seen in his entire practice) and he explained to me that the cancer was no longer encapsulated in the nodes and that the entire neck, muscles, fibrotic or otherwise were seasoned with microscopic cancer and that he couldn't leave me without a neck. Treatment arm number 2 gone. And as far as Mo they could look at Erbitux again to buy some time. So he told me that the cancer was incurable. But would do their best providing palative care. HIV played a big role in this fast progression. so im going to go with the Erbitux and whatever else my body can handle MO wise. Shawn U.

I have several responses to this post, none of them good enough, none of them expressing how I really feel. All of those words meaning to comfort you, yet knowing they probably won't. I'm sorry Shawn, I'm sorry for this tough journey you are on. xo

I'm sorry to hear this Shawn. The Erbitux may be a viable option, but I would get a 2nd, even a 3rd opinion or whatever it takes. I don't know how they changed your pathology from your neck dissection, and none had ECE, as far as I know, and how can they tell if there is microscopic cancer in the entire neck, muscle, fibrotic tissue, and otherwise, from the modified neck dissection on 9/11/13, without them all being biopsied, unless it's an assumption? And you were only told there was positive margins in the tonsil on 9/18/13, unless information was held back or further biopsy testing just came back, but that's almost a month ago, and your fibrosis came after surgery, and now they say it's cancerous too? I would obtain a copy of all your scans, surgeries, pathology, and get another opinion from the best Cancer, ENT Hospital wherever they are. Hope lodge offers free accomodations at 26 different locations throughout the country, most near a major comprehensive cancer center. I stayed at one in NYC, and there are a dozen different hospitals in vicinity of Hope Lodge. Some Hospital, like John Hopkins offer consultations via telephone, but like all others, need all your records, unless you only want to do the Erbitux for now, and take it from there. I wish you well.

Do you really think that they could be that , well horrid? And it is quite possible that I passed on some information that maybe I got wrong. I didn't mention this but he was asking if I had given any thoughts to hospice. And having him tell me that he had talked to my RO and that she would under no circustances treat me again. After a had Rad. Erbitux the first time without surgery. and it proved inafective. and an entire board from Kaiser could all agree. Should I really think that they are just triing to sweep me under the rug. I am so upset now. I just Why would my surgeon tell me these things everything I worte and it not be true.

I wouldn't say they tried to deceive you or lie, and definably are not trying to sweep this under the rug, but somewhere along the line there was a loss of communication, information, questions or was not enough results at that time, and I'm just going by what information was supplied, but I'm not a doctor. When you meet with these doctors, it can be fast and furious, and information can be forgotten or words not easily understood or misconstrued. Maybe there was intention to meet you earlier, but with your hospitalization is wasn't possible until recently. Anyway, I still go by what I said, get copies of everything, so you can see for yourself, ask questions, and hopefully there will be some other treatment available now or in the future. The Erbitux may just as well work, and know a few on another blog on them for two years, so far.

I didn't have treatment for a while after my initial chemo, over a year, then I could, but only radiation, than only surgery, etc etc, and I'm still having treatment for a cure for my 8th time in four years, hopefully, although every situation is different, I had to find the right doctor(s) to continue. I wish the same for you.

Shawn, I'm with Paul. No need to direct any anger towards them. You need all the strength, energy and positive attitude so you can decide what you want to do. If you want fresh eyes to look at it you should seek out more opinions. You know how you feel and have enough information to develop a plan of attack. That plan could include hospice if you feel other options still point in that direction. The main reason they are around is preparation of end of life planning. They are better equipped with a shifting perspective from curing you to making sure you have other things ready. The only thing different is that you can't pursue treatment other than for palliative reasons.

You could keep proceeding to buy more time also. I am truly sorry you received the news that you did. The word "incurable" is pretty powerful. Whatever you decide to do please address your comfort first. You deserve that. If there is anything I might be able to do please let me know.

Ed

Shawn,

As a survivor, recurrence is our biggest and most feared nemesis. I can't even begin to imagine what it's like to hear the word "terminal". I do agree with the previous post in gathering your information and seeking a second opinion. Perhaps there's a trial that would fit your situation. I know of warriors that are doing well and prolonging their lives with excellent quality of living so it's certainly worth a look see.

In the mean time, my thoughts and prayers are with you. You're a brave soul and warrior. Continue the battle!

"T"

Thank you guys, I guess you guys were the first to see what was just under my skin when I wrote down the turn of events. I think that reading what Paulb. wrote just made me feel as if I had done something wrong, I am sure there was things that I could have done better Ie. keeping track of my own treatment more diligently. its kinda messed up that you have to learn things along the way that could only help you if you had a time machine. I will get those records and have fresh eyes look at them. I am too nice in the regards of go with the flow. and don't question the experts. But they are only human as well. I hope I didn't come across as an ass. shawn u.

Of course you don't Shawn. You are being dealt some incredibly intense cards and none of us have a defined approach to reaction of such news. Keep focused forward and don't worry about anything in the past that you can't do much about anyway. Best wishes for some quick turnaround on fresh eyes!

Ed

Shawn, you are apparently misunderstanding what I written, and find it very offensive you write openly I made you feel like you did something wrong, and I never wrote or inferred that. All my responses to you were to help you, as best I could, and responded to almost every single post you, not me, made seeking answers, and responded not as a doctor, but as someone who has gone through this a half dozen times with multiple treatments, and just as many failures, even after being told no by doctors to various treatments myself through my short time with cancer. In your last post, something seemed amiss, and addressed that with you, to help you, not that you did anything wrong, but that it could still be treatable by another type of treatment(s), doctor, CCC, not just by the ones proposed, which is only palliative care, a few that I mentioned, but the choice, and effort to find them is yours.

Believe me, I have better things to do, and have my own concerns to deal with than to play games, but stay on to support others, then only to see my name in bad light addressed to others, not me directly, is like a stab in the back, and as the saying goes, "The best advise is no advise" and I should have followed that rule, and will with you. Take care, and good luck.