Thanks Joanna!

I am stuggling every minute with the decisions.

And they are just begining. Hundreds more to follow.

I guess the famous quote that more wrong decisions are made by indecision than by wrong decisions is true.

I will make a FINAL choice regarding surgery tomorrow at the Stanford tumor board.

It's so frustrating to get 25 different viewpoints from 16 different Dr's.

Just shows you how complex this disease is and how little they have learned about it.

I agree that once I have a plan and begin action I think I will be better....

I am gald to hear you are well, and appreciate the clarification on the statistics.

Michael,
Do not make any rash decisions! My shrink always told me "When in stress, make only one major decision at a time. And make no radical life changes." You are in acute stress. Now is not the time to decide about your business. Most of the what-ifs won't happen. You'll have to make some changes and modifications but, most likely, you'll be able to keep your business. Family and friends will help if you let them.
And even though you look swollen and odd after the neck resection, you'll go back to almost normal. Honestly. No one can tell I had mine and because they took all the nodes out of my neck and tightened up that skin, I actually look much younger than my age. I'll email you a picture.
It's completely understandable why this would freak you so. Your past experience with your dying partner. That was a terrible experience. Please consider some therapy time to help get perspective. The hospitals and county often have great programs. It saved my sanity and got me out of panic-mode.
I did surgery first, rad after, and apparently am still free in the primary site 12 years later. But mine was more advanced when they found it so they had to be aggressive. Take deep breaths, stare at the ocean and let your inner calmness take over. And make no radical changes to your lifestyle! Yet. Ali Mae

Michael,

Here's one more voice telling you not to panic or assume the worst. I also anticipated "mutilation" when I first heard my doctors describe the surgery they were going to perform on my tongue and neck, but after the incisions healed and the swelling went down, the effects became barely noticeable. I understand your concerns about trying to deal with customers during your treatment -- I'm one of those here who continued to work (albeit a reduced schedule) during my radiation, and I was initially quite self-conscious about seeing clients then. However, they were very understanding and supportive and did not make me feel like a freak.

Don't dwell on statistics -- as some of the others have said, they can be misleading and misinterpreted and they don't serve a useful purpose when it comes to your own recovery. You have many supporters here who want to help you get through this, so come here as often as you need for advice and information.

I've had a long list of extraordinarily good experiences in the past 16 years, many of them traceable in one way or another to what I went through with oral cancer. As I've said before, if someone told me I could go back in time and relive my life without that cancer experience, I'd turn them down, because I wouldn't want to risk missing out on those "good things".

Please stay in touch and let us know how you're doing.

Cathy

Hi Michael
we're all lab rats in a sense lol- that's the nature of the beast! All treatment possibilities are tailored to the individual. Listen closely to what Brian had to tell you (and not only about just the mrnd). I have met Brian and many others with neck disections and it's not mutilation (especially the mrnd compared to the rnd). You really have to look for it.

I was touched by the eloquence at the way you stated your fear and it's not poisoning the board, it brings many of us back to a place where you are right now and renews our gratitude that we have moved beyond it.

I had a choice of going to Stanford or UCSF and I chose the later because I was going to get IMRT and the RO out there is the top IMRT doc in the country. Otherwise Stanford would have been my first choice.

I am an advanced stage cancer survivor as well and life has exceeded my expectations today. Forget the stats - they will only drive you crazy. They don't take into consideration health habits, age, etc.

Being younger actually works against you a little. Cancers in younger people tend to be more aggressive so if it were me, I would hit it with everything they've got. You CAN get though this, get your life back and you might even get some unexpected surprises along the way (and I mean that in the most positive way).

Don't let your imagination run wild with this (there are actually only a dozen or less decisions to be made - doctors?, facility?, teeth - pull yes or no?, surgery?, chemo?, type?)- it's all too easy to do. It's all about risk/benefit - these are the questions that must be answered to your complete satisfaction. You need to have confidence in your team. Ask for anti-anxiety meds if you need them.

Take it one day at a time. Only God owns the future. And we are here for you.

Hey all!

WOW!! Do I feel better...I know I must sound manic depressive, but waking up to a beautiful sunny morning and reading all your eloquent thoughts really helped get me out of my pitty party.

I think it hit me extra hard since I had just decided yesterday to hold off on the MRND until I meet with the tumor board (tomorrow @ Stanford).

I guess part of me was all physch'd up for the major surgery, plus I felt a sense of control for the first time since the dx.

Then, when I changed my mind last minute yesterday I think it made me feel like maybe I was just delaying the inevitable, or staying in denial, or procrastinating, or something.

My best friend (who just nearly died of AIDS in the hospital for 7 weeks; he's fine now) and I have a great saying...Years ago when he was trying to find a good therapist for some emotional issues he had, he kept changing around from one to another...We used to say that he just "changed Drs until he found one that told him what he wanted to hear". I suppose part of me was afraid I was playing that same game, with a much more dangerous ante.

But, whether it's denial or mania, I feel like I am doing the right thing to delay tx for a couple more days to make the most informed decision.

I still may have the MRND (especially if the tumor board recommends it), but not likely by the same Dr who has yet to return my calls and emails, and still has never met me..!

I may also travel to MD Anderson or Sloan to get a final opinion, but whatever I do, it will be fast.

If it's surgery, or chemo/radiation, I'll have it done or started within 7 to 10 days.

Thank you again, each one of you!

I REALLY appreciate the unconditional love and support I have found on this board, and am looking forward to the day, years from now when I am cancer free and able to return the favor to some other person in my shoes.

Warmly,

Michael

Hello Michael,

Glad you found us but sorry you had to. Heed the advice posted above. "Who better to ask than one who has traveled the path ahead of you"

I was a stage 4 right tonsil patiant and will be two years out from dx next month. I had met to the lungs last June and six months later after chemo my lungs were clear! You will get past the pity part rather soon. You will need the energy to fight this diaease.
You will find many survivors on this forum. It may be a rocky road but so many of us have traveled it and are around to talk about it. You can to!!!
I hope your decision is made soon and you stick by it. Don't second guess yourself. Time to put on the boxing gloves!!!

All My Best, Danny Boy

Daniel:

How do they find it early enough when it returned to the same site?

Also, can I ask what risk factors you had for it in the first place?

Did you have chemo the first time around?

Just curious...THANKS!!!!

Hello Michael

I also had stage 4, right tonsil remnant with extensive spread to the lymph - four in all. I chose a radical neck dissection plus radiation because I thought, from a novice's point of view, that if the large tumours were surgically removed the radiation could work on what was left. Also there would be less likelihood of cells spreading from the tumours if they weren't there! Also, I'm often not good with drugs.

I was amazed at how well the dissection healed. It hasn't affected my facial nerve at all.

When I was first diagnosed I was stunned to hear my doctor mention the word 'cure'. I hadn't considered it. Two years out from treatment I am doing well, back to my normal life and work. I too am self-employed. I wasn't able to work during treatment but told my clients what was happening. They were very supportive and had work for me when I was well enough.

I have great empathy for how you are feeling, Michael. Listen to what your docs have to say, think about it quietly then follow your gut feelings.

I'll be thinking of you and send you love and light from Helen

Michael,

My prayers will be with you tomorrow and every day until you get through this.

You have received the best advice around from the people here that care about each other and now you.

My suggestion is to print out the above and keep rereading it when things get you down.

Keep us posted about your decisions and as often as you like or need to, write. We are here.

Good luck tomorrow.

Jerry

Seems like the darn tonsils are common for this! Why didn't my dentist catch this a couple months ago? It was AFTER I had the swollen node after all.

Oh well. Water under the bridge I suppose. I plan on pointing him to this site for a refresher course on early dx.

You guys have all been awesome here.

I want to recap a quick update below and ask for any hints, info or background that anyone thinks I should include in my Tumor Board presentation tomorrow am.

1) Stage and nodal involvement, CT/PET scans, all pathology reports, etc.
2) Last week or so have had "pain" (a #2 on the 1 to 10 scale) on right side in throat. (sore throat)
3) Slight (2, sometimes 2.5) pain / sensation in Right ear.
4) painless "sore" on right rear side of tongue noticed 2.5 weeks ago, basically ignored by 4 or 5 ENT's
5) Background that FNA's caused lymph nodes to swell at least 25% to their current size.
6) Statement from most senior ENT I saw that persons of a younger age without risk factors has a more agressive neoplasm and requires more agressive tx.
7) Slight occassional ringing in right ear (30 seconds a couple times a day for the last two or three days)
8) Likely to be HPV positive for tumor. (waiting on PCR results from cell block on FNA)
9) Outline of the 2 treatment paths I am considering:

A) MRND following or simultaneous to Radical Tonsilectomy; then radiation (and possible chemo and/or Erbitux)

B) Chemo and/or Erbitux with Radiation, (possible biopsy of R tonsil first), and/or possible radical tonsilectomy. Then, possible MRND if needed post chemo/radiation.

Any of your suggestions are appreciated.