Lisa, I remember well the shell shocked feeling, then finding this forum, and trying to catch up and educate myself on what to expect. It is very scary.

Most important right now is a second opinion at a CCC. We felt much better after the team at Dana-Faber concurred with the treatment plan from our local oncology center. I also wanted a second pathology examination (slides from biopsy were sent ahead) and this was included in the consultation.

It will help that your husband is otherwise healthy and strong. That was the case with my husband and he recently said that overall he is happy and grateful that treatment, although extremely difficult, was an option. We're leaving for a cruise next week - there is hope. Lottie

Lisa,
If I were you, and they don't find your husband's primary, put off the start of Induction Chemo and get to MDA Houston for a comprehensive exam and second opinion.

There are NCCN Guidelines that really should be closely followed when there is the possibility of an Occult(Unknown)Primary and the protocol is significantly different than with known Primaries.

http://oralcancerfoundation.org/treatment/pdf/head-and-neck.pdf (look under Occult Primary)

The protocol you mentioned seems somewhat inconsistent and incomplete. There are many steps to be followed before Chemo.

These days a Major CCC can find the Primary for almost all referred cases.

Some of the most comprehensive studies of true Occult(unknown) Primaries has been done by MDA. Some of their recent work has linked HPV to Occult Primaries. They tend to write the book on many of these things.

Forget stats! Those are irrelevant. All that is important to you is your individual case, and trust me - each of us are very different. And back that truck up re node involvement. In 2004 I had nodes involved on left side, and in 2007 had nodes involved on the right side - and guess what - I'm still here!!

One step at a time. Deep breaths. Lean on us, we're here for you.

Donna

Lisa,
I'm also a caregiver and reading your posts brings back so many memories. First of all, as scary as this is, you have so much going for both of you. It sounds like your husband is in great shape and he has you to help him through this ordeal. It might be difficult to believe at this point in time, but you will be so much closer and love each more because of this life changing experience.
You're numb and in shock right now and also very fearful of the unknown. This will be a tough fight for both of you. Being a caregiver is so stressful and there is no one who can do it for you. He will do his treatments and you will take care of him. This might sound odd, but at the time of Richard's treatment, I felt honored to be able to help him. As the wedding vows say, "In sickness and in health." Most people are never really tested as we have all been.
Another thing that is important...don't look at the statistics. Right off the bat, Richard's RO told him that the treatment should cure the cancer and so far all our checkups have been clear. We are back to all our normal activities.. work, hiking, etc. Richard is lucky enough to have tolerated the treatment and healed up pretty quickly.
Lisa, please lean on us. We know what you are going through and can answer all your questions. The more you are informed the better questions you can ask the doctors and the more you'll know about what to expect. Keep posting as you go along and we will all help you. YOU ARE NOT ALONE.. Geri

Lisa, your words also bring back memories to me. In April last year my husband was diagnosed with stage 4 SCC involving most of his tongue, his lymph glands and his jaw bone. He was told by the first set of doctors that they wouldn't operate because it was too extensive. 2nd set of doctors said they would if we wished but it would be major and they didn't think it would make much difference in the end. His treatment was to extend his life but never to cure. The feeling of shock and daze is unbelievable when you hear things like this. I remember being in a supermarket totally dazed, having forgotten even why I was there.

But just so you know you will get through this. I came to this site and I read and read and read. I read blogs, questions, everything I could think of. And if i had a question I couldn't find the answers to I would ask (still do). The guys here on this forum will be the best mates you will ever have. They don't care if you come here to rant, rave, ramble or even cry. They will be here for you with words of comfort and advise. They know and understand because all of us have been in the same place.

Never give up hope and don't listen to statistics. Your husband is a young, healthy man and that will be in his favour very much so. My husband Steve's odds weren't so great when we started treatment but I'm happy to say almost 5 months out of treatment his last scans came back all clear. Everyone is different and most of all positive thoughts and believing that miracles happen will help get you through.

Wendy

Lisa,
Since you are so close, I think a second opinion at MDA is a good idea also, if to do nothing more than confirm the treatment plan.

If you will look at my signature, you will find that I was a stage III with unknown primary 13 years ago and I'm still walking around despite a new occurence 4 years later. The treatment is nasty but doable. You guys can do this. Take a deep breath and keep us posted.

Take care,
Eileen

Lisa,

I love your statement regarding your husband "he is ready for battle". Awesome attitude and exactly the mindset you both need to be in to face this.

In battle, victory normally goes to the side that has the best battle plan. Listen to the resounding advice here and get that second opinion at MDA if only for due dillegence. It may just be the key to his survival.

I relate to your husband in the fact that I felt fine and was in great shape before diagnosed. I think my overall health was the key to making it through the ordeal.

Good luck

Eric

My primary was also a tough one to find. I had to have the exploritory surgery to take samples from different areas of my throat and it turned out to be on the right tonsil. Teh only symptom I had was the lump on my neck. ! doc said stage III, another sad VIa. It's hard to believe they're ready to start chemo already. I was diagnosed dec 22 07, but didn't start any trearment until feb 1 08. Then it was 7 weeks of radiation with concurrent weekly chemo. If he has radiation, his throat may still be swollen from the surgery, as mine was, and the normal position they set him in to fit the mask he will have may make it hard to breathe. That's what happened to me and I really panicked and had to be repositioned and redo the mask.
Anyway, it was a very rough course of treatment and my wife was a wonderful caregiver and thanks in large part to her, here I am 2 years later and still cancer free. Your support and aid at his appointments (take notes, ask questions, keep things organised) should see your husband through this as well. Best of luck.

Finally some good news, I guess, good news is relative. PET scan
shows a 3cm tumor at BOT along with the 3.4cm lymph (Really is interesting how 8 days ago I'd never heard the term squamous let alone had any idea where the jugulodigastric lymph nodes were) - We are meeting again with his oncologist tomorrow for the full treatment plan. Plan at this moment is to admit him to the hospital on Tuesday - mediport and biospy of tongue will be done Tuesday and chemo starts Wednesday. His oncologist left MD Anderson and is an original founder at South Texas Oncology Hematology and we feel very confident in him. His records were shipped today to City of Hope in LA and MD Anderson. My husband's employer has been very supportive. We have been offered the corporate jet to take him wherever we need. They also have a dedicated team of medical professionals that help with choosing doctors, coordinating care etc. We are very blessed with the resources being offered. Based upon the information that comes back to us from City of Hope and MD Anderson - we will decide whether the Tuesday admission will go forward. Wild roller coaster is the closest I can come to explaining the journey so far. I took some time this morning to visit my gp - emotions were getting the best of me - and some people may think it's weak - I did get a prescription to help calm my nerves. I have to say - I haven't cried in over 6 hours so - that's a good thing. I know I will still have bad days - but yesterday was really bad and I can't be that way for either Ken or my kids.

I so appreciate everyone's advice and welcoming spirit. I already know that this forum will be a key piece in making it through this BUT I cannot wait for the clear CT and PET so I can move on to being a motivator and providing answers and advice. Until then, thank you!

Hi Lisa- I think once you start knowing more of the specifics you begin to just put one foot in front of the other and you just go forward with what you have to do. The initial first days are so hard. Its such a shock especially if you are living a healthy lifestyle and feel good and don't fit the statistics.

I am praying that your husband has a full recovery from this cancer and goes into remission permanently.

KATE