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.

Paul, Hold on, I meant no ill will towards you at all! All I meant by saying that reading what you wrote was that you made me understand what I had done wrong. I am sorry if what I wrote made you think that I was implicating anything negative. towards you or your responces. (that I was always glad to see.) why would you think that I have read my post over and over.everything I wrote was referring to Kaiser and their tumor board those wre the experts I was referring to . imeant that going with the flow of what THEY had found or suggested. and if your anger towards me has to do with my time machine statement. that had to do with my mistakes. ME. I know you don't know me that well. but right now I am typing like hunt and peck styl because I am shaking so hard that icant stay on the home keys. you thought I was talking about you when I said that I go with the flow. and you thought iwas referring to you as the experts. I only saw this post today, if I knew you posted this yesterday awould not have been able to sleep without trying to make it clear to you that I MEANT NO ILL WILL that is not who I am. I cant imagine what others are thinking of me. You have hurt me,paul all I ever wanted to do is make friends and share my journey with people going threw this terrible ordeal. why do I care so much about what you or anyvbody thinks of me so much. paul I don't know what else to say other than I hope you see that I meant nothing negative about you in any of my posts and im sorry if you thought something was amiss with my last post. I am not sure what you ment by that. well I guess I can thank you for one thing, im crying over something other than cancer for a change. if this is just ahuge misunderstanding then im sorry. shawn u.

This is all so very stressful and without the benefit of knowing each other personally or being able to hear inflection in our words, it is easy to have misunderstandings.
Paul you are a tremendous help and it is obvious Shawn wants you to continue to offer help. I hope you will reconsider.
Kathy

Shawn,
I think the point to take home is to get all the facts of your case in hand and then seek other opinions. That is the WARRIOR and SURVIVOR that flows through the blood of those hard core survivors and those in training.

NEVER give up, NEVER accept NO.

There are always other therapies and I think the idea of "go with the flow" is fine for many avenues of life; it unfortunately, does not play well here when your life is in the limelight.

I am no grizzled veteran like some here but I know enough by reading your profile is you have barely struck out and begun the fight. Understanding that you have previous complications that make certain therapies not possible means there are less available but certainly there are others to look into.

Do not lay down, do not be defeated, do no let Paul make you cry. What a waste of time. You have no time to spare. Get all your records together ASAP. And DEMAND to draw from them every other possible therapy for your situation.

Having HIV can be a lead to sources within the community; those living with HIV and cancers. Scour hard and find some contacts there.

This is YOUR time to take control!

Go back to Kaiser and ask/demand for another relook by the tumor board. Write down all your key points. List the alternatives you have found from your other sources, especially the hiv community.

Ask to attend the tumor board meeting. I did attend and it was comforting.

Best to you in the biggest fight of your life!

Shawn, I guess it's all a misunderstanding. What I didn't like was the quote about me, "I think that reading what Paulb. wrote just made me feel as if I had done something wrong,...", which was far from what I was trying to do. As far as something was amis, which is related to my first post, I was really surprised to hear your incurable diagnosis after believing only the tonsil had microscopic cancer, and was hoping there was some kind of misunderstanding along the line, for your sake, and reread your history, and couldn't figure out how the doctors, who are probably correct, said there was cancer all in the neck, major structures, when these were not removed during the dissection, scanned again, biopsied again, and wasn't mentioned by you before. I'm assuming the extent of disease wasn't mentioned to you before by the docors or was not known at some point until the tumor board met, and was then told. Not that it matters to me or I need to know, but for you, so is the reason I recommended getting all your records, getting another opinion, and you did nothing wrong. Be well.

Hindsight is 20 20, and this disease makes you question everything. This is why for newcomers here, most of the old timers give advice like - educate yourself, understand the nuances of your disease, know the available treatment, know the top hospitals, know what's normal, and what's not, seek out the top drs. etc... Unfortunately, this is information that not everyone has unless they find a site like this - ideally our hospitals, should be forthcoming with it, but often aren't. And to be honest human nature, prevents us from seeking out this info until we absolutely have to (fear!!!) What they don't realize is that the knowledge, though terrifying, is power and gives you the strength to advocate for yourself. And some people place their lives in the hands of their doctors, only to be disappointed or realize too late that maybe they should see someone else. This is why educating yourself is most important.

This point has never been made more clear than recently. After having watched my friend pass last year, and seeing what she went through with the medical establishment as a whole, I truly believe that anyone facing a life threatening illness, should either fully educate themselves, or at least have someone knowledgeable advocate for them.

My father inlaw was recently diagnosed with Esophageal cancer. Its a T3N1MO tumor at the esophageal/Stomach junction. Its SCC, and not Adenocarcenoma - which is the norm for this location. His specialist - a general surgeon who biopsied the area - wanted to send him to a local thoracic cardiologist - another surgeon who deals with this type of cancer here at the local hospital. Now had I not already looked up the top dr. in Toronto, he would likely still be waiting for surgery, or possibly even the first appointment to see a the thoracic cardiologist here. I immediately asked for a referral to the top Thoracic dr. in Toronto who specializes in this type of cancer, and two weeks ago (literally a week after having been dx'd and having his CT) he met with the dr. I chose, who works out of PMH in Toronto (our top cancer center) - within 1 day after that, he'd had a PET, a secondary scope on the following monday, blood work, echo, breathing test, meeting with a radiation oncologist, and Friday he had his radiation simulation. Here instead of cutting first they do rads and chemo, and then surgery. Now we're waiting on his start date... likely next week though I am concerned about the fact that his MO appointment is a week away. I want it moved up. If someone hadn't stepped up he would likely be looking at a totally different treatment locally and waiting a stupid amount of time. Knowledge truly is power.

That said. Beating yourself up or second guessing yourself after the fact is a waste of energy. Make plans to change what you can.

hugs.

cheryld,
as they say there is no substitute for experience. And your story shows that in spades. It is so unfortunate that more information is not handed out to new cancer patients. A few flimsy pages to go to ACS and a few local organizations is far short of what is needed. To be fair, the packet is more than a few pages but it still seems that about 80% of the common stuff discussed here could be boiled down and formatted into a survival guide to oral cancer.

it is reassuring to hear just how fast and how far someone that really knows the hidden highways can move when needed. thanks for sharing don

Glad to see your post Paul, misunderstanding it was, I do understand now that even if there is a lot of things that my HIV status does exclude me from. It surely cant be everything.
I think the pain meds are giving me problems with memory and the order that things happen. But I have more urgent medical issues to deal with first.

But they are for a new topic. going to post them right now. Take care all Shawn.

Thanks Shawn. You're right, it doesn't exclude you from everything, but is similar to people with kidney disease, prior treatment or whatever else they want to add for exclusion to a clinical trial, but I believe some doctors can use then "off label" and use them anyway. The meds can do all sorts of things to you, especially concentration. I can't tell you the last time I watched a movie, read a book. I have no patience for it anymore, and last and not least, do set your priorities, and take it from there. We're pretty much walking the same path, and if I can help, I will, and vice versa. All the best, Paul.

And the best to you as well paul!