Just Diagnosed

Sorry to hear you have joined our little club, but know you have found a place with a wealth of knowledge and support, My advice for now and Im sure others will chime in with more, but take a deep breath or two, relax as best you can, try and wrap your head around this, then put on your game face, and buckle in for a wild ride....I am two years post diagnosis 1.5 post treatment, and there is life after treatment, just know SCC on the tonsil is very treatable, to cureable, the treatment can be brutal, but it can be done....Eat as much as you can, pack on 10-20 pounds if you can, get your dental work checked and taken care of prior to treatment, read up on the superthread, and ask questions from all of us here that have been touched by H&N "C". I'm here for you, and you will find many others as well.....

Jim

Shell,

Welcome to the H&N forum, what a wonderful day to find out you have cancer, for me it was December 23^rd, 2011 (certain dates stick with you).

As said, check out the SuperThread for some understanding and know that many here are survivors of SCC of Tonsils.  For me it was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, rads & Erbitux).

We have all stood where you stand and understand what you are feeling.  There seems to be no rhyme or reason to why it picked on you, it just is.  Don’t beat yourself up, you are stronger than you think and you will manage the days ahead and come out the other side, most likely free of the beast.

Best advice I got was to drink lots of water and swallow often.

Best of luck,

Matt

nobody wants to join.  I'm so happy you found us right away.....this is the best forum on the internet, with a wonderful group of supportive and VERY smart people to help you get through this.  Nobody knows why.... specifically, this cancer chose us....I was an ex-smoker and decided that was why I got it.....nobody ever mentioned HPV-16 till I got here.....and treatment is the same no matter how I got it.  Actully, my particular variation of SCC (Nasopharyngeal) is commonly found in oriental men.....and I'm neither oriental or a man.

Different Drs. have different styles.....I can't remember my ENT (or Oncologist, or the RO) bringing up my lungs or my liver at the beginning stage of the game.  Chances are you have no distant mets.....no sense in adding that worry to the mix.  This is a "one day at a time, one foot in front of the other" kind of disease and treatment.  It took me quite a while to put my name and the word "cancer" into the same sentence and have it make sense.....the diagnosis was just so unreal. 

I'm going to tell you what I was told when I first got to this group.....You are going to make it through this!  It's a patch of gravel on the hiway of life, but you are going to be riding on pavement again....quicker than you think!  You're right when you say "temporary".....it is a temporary slow down of life as you know it now, but the vast majority of us have rejoined the world.....a little different than we were.....Skiffin calls it "abi-normal".....but we are still here to talk about it.   

Advice at this juncture is to EAT!!  Eat all and everything you want.....I was a cheeseburger deluxe/Mexican food girl, myself.....and ate one or the other everyday for 2 weeks before treatment started and the first couple of weeks of radiation.  Eat and enjoy every morsel.....

You're in the hardest phase (emotionally) right now....the beginning of the tunnel.....the unknown in front of you is huge and it's scary.  You'll be surprised tho, how good it feels when you're finally taking an active part in the fight.....fear gets replaced with the will to fight and win....and you will win! 

The "Superthread" everybody is talking about is the first post on the front page.....it is always there, and full of information and experiences.  The best thing about having this group is.....there are so many ideas......when one thing doesn't work to help a problem, another might....we have tricks an tips up our sleeves the Drs. don't even know about.

Your life is temporarily on hold.....but it's not over.......it's going to be ok!

p

Duggie88 said:

Shell

Sorry to hear you have to join our club. There are many good people on this site that will help you through your journey. I went through it starting with the diagnosis October 22, 2009, surgery December 18, 2009, and  radiation starting Februaru 16, 20010. Not a very enjoyable journey but if I can do it anybody can do it. As I said this site is home for many good people. I have never felt so attached to so many people I have never met in person. Stay off google and the world wide web, most of the info is old and not up to reality and quite frankly people are more prone to tell a horror story than they are one with a happy ending. I personally haven't been on this site much because of being very busy at work and my daughter is going through some thyroid issues that just remind me too much of my journey so I try to push forward just coping with her issues. You will have many questions throughout your journey, don't be afraid to ask. The doctors can diagnose, but these fine folks can get you through it. Sit back, take a deep breath, stay positive, and don't be shy, many questions will surface so don't be afraid to ask.

 

      Jeff

But I had very similar. 3 months post treatment and all well. A gentleman called JK posted recently who is 7 years out. The treatment is a challenge but doable and lots of good people here. Some useful treatment blogs on word press gammaraygary and Theo the radioactive man. Both UK based but similair treatments. Good luck Shell, G

I'm so sorry for the emotional rollercoaster that you're riding right now, but you have found the BEST group of people around!  I didn't find this group until after both of my surgeries and I was already in treatment (radiation).  I had a doctor give me some "not so true" statements and luckily the friends I've made on this site set me straight.  Treatment isn't fun by any means, but it's totally doable.  I had a tough time with it, but I had weird side effects and reactions to the rads.  The surgeries weren't too bad actually.  This group is a family and we welcome you to it.  Ask questions, vent, express how you feel and in no time, we'll be celebrating that you are done.  I'm 14 months out of treatment and cancer free.  It was a tough road at times, but I did it and you can too!  Wishing you all the best!!!

Hi Shell!

I myself have not been affected by cancer, but my father was who I am extremely close to.  I know that many ppl on here who have lived it can give you wonderful advice as they did my father.  So sorry to hear that you have to go through this, I'll be praying for you the whole time.  I can't think of many things more devastating than cancer... 

I know one thing is that trying to stay as positive as possible and having support are 2 of the greatest things.  Because of those, my dad has thrived and stayed more positive than anyone I know of in his situation.  He had sinus cancer and 2 lymph nodes affected.  He lost his taste, had a peg tube (which despite sounding scary- was not and was such a lifesaver!).  He is now just hand in hand with Shawn's brother- a little over a year out of treatment and cancer free!  

It's amazing what technology can do these days!  I think going through this now would greater anyone's chances of longer survival versus even 5 to ten years ago! It was amazing when I first visited this site the amount of support and watching people's stories/progress.  You will be amazed.

Prayers!

Cherie 

hi shell, welcome to our family.  the one nobody wants to join.  i'm sorry you need to be here but glad you found us right away.  i didn't find it until after tx and I really missed out on a lot of very important and needed information.  ask any/all questions you have.  i'm sure someone will be able to share their experience with you.  come here if you want to vent or if you feel alone or if you want to share that you had a good day, whatever you feel.  as long as you come here, you will NEVER be alone.  we will ALWAYS be here with you.  we will be on the sidelines cheering you on.  we will even pull you along when you feel like you can't put one foot in front of the other.  we are now family and that's what family does.  as for it spreading, i'd just worry about what has been found, not what someone says may happen.  the tx is tough as the others have said, but also like they said, we are here to share our stories.  we made it and so will you.  start writting down any questions you have so you don't forget to ask them.  leave room to write down the replies.  if you have a hand-held recorder that would be even better.  if possible, have someone attend doc visits with you, 2 sets of ears is always better than one.  create a calender for your treatments so its easier to keep them straight.  plus you can mark them off as you do them.  as you go thru this, i'd get copies of every test i have done and keep them for your records.  if you get them as they are done there is usually no charge.  if you wait until later when there are many, they will charge you, at least that's how it worked with me.  i have a notebook with all my info in it from my dx and rad dosage tx to the last throat dialation i had done in June.  I will be praying for smooth tx and with few side effects.  please keep us posted on your progresss and remember we are here for you.

God bless you,

dj