What exactly does "occult mets" mean? Is that where the path report came back clean but that there were really cells there that the pathologist missed or that weren't in that particular slice used to make the slide?

Occult just means that something is not readily visible via the technologies that we currently have to see that it is there.

I always thought "occult mets" referred to when no pathology showed on a CT scan, or other type of scan but when a neck dissection was done and the nodes actually examined, cancer cells were found. Since Amy has had a bilateral neck dissection, my conclusions was there's no longer a 25% chance she has occult mets. Am I wrong in understanding how that's normally used?

Hi Amy!
I know what you are going through as I was on the same boat about 2 years back....diagnosed at the age of 23,unmarried & about to begin my career.I too thought it wasn't fair as I was a non-smoker,non-drinker,healthy eater & etc but I learnt that this disease can strike anyone at anytime & you gotta be as unforgiving to it as it is to you.
From day 1 I told my doctors that I didn't want any statistics as I felt each & every case is individual & generalized figures cannot determine which side you'll fall into.
Ofcourse it's your decision whether to go through radiation or not,but I'd like to mention that the radiation experience is not the same for everyone,I was petrified of starting it,but it wasn't too bad at all....the side effects didn't hit me until after 4 wks & overall it wasn't nice but definitely not the experience I'd actually dreaded...I think I got more sick by worrying about the radiation than the radiation itself.
Take care.
Luv Jill

Amy,

It's not uncommon when you're trying to come to grips with your diagnosis to get to the "why me" stage. I remember thinking at the time about so many people I knew who seemed to have a much less healthy lifestyle than I did, and yet they somehow managed to avoid major health issues like cancer.

You may not see much of a "purpose" now when you are forced to stay focused on getting the right treatment and living one day at a time. However, as I look back on the period of time immediately following my treatment, there were things that seemed devastating at the time that turned out to be moving me in a different -- and much better -- direction. I never could have anticipated the positive developments, both in work life and personal life, in the years since then, many of which are somehow related to what I went through with cancer. On balance, I have to say that some of the best years of my life have been in the post-cancer period.

It's good that you will have a friend with you when you go for a consult -- it can be very useful to have another person helping to listen and ask questions at a time like this. Please keep us posted on how you're doing.

Cathy

Occult mets could be a met to ANY area, that are not visible. There are many tissues and structures in the neck that are left after a dissection ( of which there are many different types taking out varying degrees of tissues) and there can be a metastasis to some tissues that are not nodes that were removed at the time of the dissection. However the study mentioned related to the 28%, specifically looked at node involvement, so quoting that was not necssarily appropriate.

Thanks for helping me understand better what occult mets means, Brian. It seems like in developing my understanding about this disease, I often create an understanding based on the context of a specific discussion with a doctor or piece of research I read, think I understand the concept, and then later realize it's not totally correct or it's incomplete.

Nelie

Amy, In relation to the "why me" stage, I've been through that too--and every now and then I still go there. At one point when I was right in the midst of it, shortly after being diagnosed, I walked by this old guy outside a bar with a cigarette hanging from his mouth (bars are now nonsmoking in NY and it was freezing out but he obviously needed to come out and smoke) and I had this strong urge to walk up to him and say "HEY, I got YOUR cancer! There's been a mistake!"

Then the second after the urge passed I was laughing at myself for thinking that way. I mean, who ever said life was fair, y'know? But whenever I'm driving and I pass by some old guy with a cigarette hanging from his lips I now think to myself "HEY! I think I got YOUR cancer". It helps remind me of the absurdity of trying to figure out what the meaning is behind all this and it still makes me laugh at myself (which is a good skill to have in the cancer battle)......

Nelie

Amy,
don't let your parents poison your intuition. Obviously you wouldn't be here if you didn't have valid concerns, questions and fears.

Most parents would probably naturally be in denial or protective but this will not serve you well in the long haul. They really need to "but out" - you are an adult and this is none of their business. Tongue cancer is serious stuff and recurrence a very real possibility. It amazes me that they would try to impede and/or criticize you for being your own advocate. In my 3+ years I have been on this board this is a first that I have heard of this type of situation.

My parents are not trying to impede in any sort of way - we were all prepared for radiation before the surgery took place. Dad put new tires on the car just for the purpose of driving me everyday ( I would have been staying at their house and the hospital where it would have occurred was an hour and 10 minutes from their house). They were completely supportive. Then, the surgeons said clean margins and no node involvement according to the pathology report and no radiation would be needed in thier opinion. My parents have a good family friend who had tonsil cnacer with radiation about 10 years ago and he lost 70 pounds and had bad after effects and that is what they know of radiation. They are just believing what the doctors have said and don't want me to have to endure that if it isn't necessary. They aren't trying to impeded -but this cancer is so new to us - and no one in my family (extended or otherwise) have had cancer other than some sufface skin cancer lesions wihch were caused by being a farmer for 50+ years of sun exposure. This is just so new to them and myself - and such a rare cancer - that they just don't know all the risks of recurrence or how serious it might be. They know what the surgeons have said and I have not been seen by an oncologist. Once I have - if it is needed - they will not object. I have not told them - b/c I don't want to worry them unnecessarily right now. The docs may say I don't need anything - we won't know until I see them. I'll be making a call in the morning. I don't know how quickly they'll get me in though.