[font:Century Gothic]I was given my news on 6th of August following a whirlwind week of denial.

SCC at the base of my tongue and right tonsil.
BOT = T3N1M3 (Does this jive with a Stage IV characterization?)

I have been complaining about an earache since March. I went to the ER, family practice and Dentist chasing my pain which kept moving around my head and neck. I was sent home with anti-biotic for an ear-infection. During my annual physical in June I convinced my physician to give me an ENT consult since the earaches were returning. July 28th the ENT found a lump at the base of my tongue. He asked for an MRI and PET scan ASAP. The MRI went on the 31st and the PET scan on the 4th followed by surgery on the 6th.

Today I met with the Chemo and Radiation specialists. Tomorrow I see the dentist, speech therapist. My wife and I can both say this is our most miserable day together. The Tumor board will gather Thursday A.M. I expect to begin treatment on 25 August given no dental issues or PEG installation problem.
I was told to expect Cisplatin & IMRT daily X 33.


I am getting over the "why me?", I know that I have cancer but it will not have me.

I am happy to land on this site. Looking at bad-statistics was ruining my week. I have far too much income tax to pay before I go.[/font]

Bill,

Welcome to the OCF. You will be hearing from many members with the same diagnosis that you have. You will find support here that you will not be able to find anywhere else. Ask away if you have any questions and please read the forum for new members, if you haven't done so already. Don't forget to check the rest of the web site as there is a wealth of information available.

I love your attitude and I have no doubt that you will win this battle.

Jerry

Bill,

Love the attitude but not the taxes. Welcome to OCF. There are many here who read the statistics and are still here tell you they didn't apply to them. Glad you found this site.

Bill,

I don't believe you have the Staging listed correctly as I don't think there is a M 3 classification. M = Distant Metastasis and the classifications are:

M X Distant Mets cannot be assessed;
M 0 No Distant Mets;
M 1 Distant Mets.

So if you have Distant Mets then any T and any N with a M 1 is a Stage IV in the Oropharynx region which is where the BOT and Tonsils are located. It would also be rare to see a Distant Met based upon all I have seen in the last 2 years.

If you don't have a distant met and assuming the rest of your staging is correct, then you would be staged a III.

Could be mistaken as I'm not an Oncologist or a doctor of any kind but either way your Tx would most likely be the same. Did they say there were going to take your Tonsils?

Have you been tested for HPV? I would as you're a likely candidate.

You also might want to read some recent posts on the Peg issue as some, including me, did not get the Peg and I'm glad I didn't. I would also want to get at least weekly hydration infusions and weekly Cisplatin Txs. I would also strive for a minimum of 3000 calories a day and 48 ozs of water each and every day.

Hi Bill,

I don't usuallt post answers; I have been the one asking questions. I am trying to be one of the helpful ones on here. Welcome. You will find a lot of support in these forums. It seems like you are stage IV. According to the NCCN guidelines. I will be happy to send you a copy of this. Email me at [email protected] and I will reply with a copy.

BY the way, it is possible for you to live through this; life is not over! That seems to be, from my reading, the hardest thing to accept, is that life IS NOT at a halt. I am new to these forums (I also use rdoc.org for head and neck cancer in UK and it has a lot of help). You are welcome to email me but there are many members here more knowledgeable than I.

Biotene products will be helpful for you. Google it. It's also somewhere on the site.

I am here for my father in law who is also stage IV and will go through his rads in about another month. I'm in India.

There is no way to see this that isn't challenging, it's not easy. I hope that you will find comfort in your loved ones who are near and be here as long as possible.

Bill- I know it is confusing, but I have a degree in anatomy/physiology so my husband has been lucky as I speak "doctor". T3 means the tumor is >4cm and N1 means a met to 1 node on the same side as the tumor. MX=distant met cannot be assessed (meaning they are guessing); M0=no distant mets;M1=distant mets. Stage IV is divided into A=T4aN0M0/T4aN1M0/T1N2M0/T2N2M0/T3N2M0/T4aN2M0; B=anyTN3M0/T4banyNM0; and C=anyTanyNM1. So, as confusing as it sounds (and the doctors WANT it to be confusing) you would not seem to be in Stage IV. Please get the doctor to clarify anything you don't understand and look up all the medical terms. And keep fighting - my husband has had 5 recurrences but has been around since intial Dx for 21 years! Take good care of yourself.
Jennifer

Hate to say it , but welcome to our home away from home. With your attitude you will beat this hands down.For those of us that tjhink positive, we win with , but have to go thru with a lot of things that bother us a little, but we make it and go on living. You are like I was at 1st, kept getting put off with the pains I was having in my mouth , throat and on my tongue. Finally got a surgeon to make a check on his way down to scope my esophagus and he found the OC and had me lined up to see a Dr before I even woke up. LOL things happened fast after that. Good luck and all the best to you.

I am getting looked at for HPV. M = 1 I guess. The radiation oncologist says Stage IV. The ENT feels stage III. Either way I am getting set for the 25 August start.

Went to the dentist today, I get to keep my teeth. Met with the speech pathologist as well. I have my homework.

Thanks

Bill

Hi Bill:

Welcome to OCF. Sounds like you are in the running around stages of getting prepared for treatments. Sure is alot to do at this point. If you are able to eat, try to eat all your favorite foods now. Once you begin treatment, it could be a little while before you can eat properly and food will lose its appeal. Dont worry about gaining weight, you may lose some during treatment. If you have questions jsut ask, there are so many people who will help guide you thru this journey.

Bill,

M1 means a Distant met which would mean your cancer has already spread from the BOT to the neck nodes to the lungs or brain, not the nodes in the neck as those are covered under the N category. Again it would be unusual for it to have already spread outside the local area so be sure to ask about your Staging.

Re HPV, the only way to "get looked at" is to have your cancer slides sent to a certified HPV testing lab such as John Hopkins or Md Anderson. There may be more testing sites but those are the only 2 I know of.

Welcome Bill. You certainly have found the right place as lots of us have similar experiences - sometimes more than once!

Sounds like you are right on top of things but it truly does take awhile for the truth to sink in. I've never spent much time on "why me" either, but then I did smoke. There is so much more beyond "why me", and this is an AWESOME place to post all your questions and thoughts and fears.

Are you out of hospital already?? At any rate, look forward to hearing more from you.

Donna

David - good advice about the HPV test, I did not know that. I was planning to ask my oncologist about it on my next visit, I had assumed it was a simple blood test. I guess I'll call and see if they can start the discovery process sooner. Question - does the presence or absence of HPV have an affect on the chances of recurrence or the choices of treatment? Tina

Bill - If you or your doctors need it this link http://pathology.jhu.edu/labservices/hpv.cfm
is on the bottom of the HPV page of the OCF main site http://www.oralcancerfoundation.org/HPV/index.htm. They can test your tissue samples for your doctor.