Just diagnosed

that nobody wants to join....I can tell you right up front that you have found a great forum of people who are knowledgable, and supportive.....I've been here since last March, when I was diagnosed with Nasopharyngeal cancer (that's behind the nose). 

My first advice?  STAY OFF the internet....I just about scared myself silly reading stuff....much of which is outdated.  You will do well enough coming here for information from people who have trudged the same path as you are on.

It sounds like tho you had a slow start in getting diagnosed, but now they have pulled you in and are getting things moving quickly....this part in the beginning is the most nerve wracking.  It will seem like things are moving slow (at a time when we just want to get the cancer out of us as fast as possible)....but it won't be long before your whole life will center around treatments.

Another thing I want to pass on to you.  You are going to be ok!!  Treatment isn't easy, but it's very doable....start reading posts in here, to get an idea of what you might be looking at treatment wise, so you have a heads up.  Just in keep in mind, nobody reacts the exact same way....but you will always find someone on here who has been where you are, so just ask away...all questions are legit, and you will always find help.

p 

Welcome to the family...., Abi-Normal as we are....

Great people here, tons of experience of differing levels of treatment and recovery.

Myself, I was STGIII SCC Tonsils, and a lymphnode..HPV+. My lymphnode was on the same side....

There is tons of great info on the SUperThread, first post on this forum...., check it out as you feel like it.

I had some irritation in my throat for a few months prior to Dx... First ENT visit, he was 90% sure I had throat cancer....

Three days later, the tonsils came out, confirmed STGIII Tonsils, a few weeks later.., biopsy confirmed HPV+.

Chemo, rads..... That was early 2009, all scans have been clean and clear since...

A good positive attitude, and detemination will take you far in recovery, as will a sense of humor.

Best ~ John

Gazebo78,

Welcome to the H&N forum and at the same time I am sorry you qualify as a member.  My route to get started wasn’t as long as yours, but it had similar results (cancer base of tongue with some lymph node involvement).

It sounds like you are getting your team and plan together for the big journey.  The only advice I might offer now is to take someone with you to these appointments, it never hurts to have another set of ears to hear what is being said.  I was a bit overwhelmed by all the information and how fast they expect answers.  I think I was on autopilot during most of my treatment.

Don’t let it scare you too much, there are a bunch of us who have been down this road and heaven knows I am not the bravest person and I made it out ok.

One more thing, if you don’t like confined spaces you may want to get a prescription for anti-anxiety meds before the CT scan.  I had my first ever anxiety attack during my PET scan, I made it ok but from then on I had Lorazapam to dull the edges a little.

Best,

Matt

I'm 10 years older than you and female~~~September,2011 I was diagnosed with a mass on my epiglottis..at that time I wasn't even sure what we needed that for~~I found a fantastic team of Drs at The James in Columbus, Ohio. November 2011, I had surgery by de vinci robot and my epiglottis plus lymph nodes were removed. I was very blessed that the nodes showed no sign of cancer and so avoided chemo and radiation.

I won't tell you it was a piece of cake, because it wasn't..took one full year to learn to speak, swallow and be able to eat almost anything I want..I will tell you, the pain was very low, and I kept high energy. Everyone is different, this forum is overflowing with wonderful, kind,knowledgable people that want the best for you and will be here to help throughout your battle.

Much  good wishes as you begin your fight against this beast, you can do this and you can win!   Peace

ToBeGolden said:

Wecome

Welcome to our club. My original tumor was confined to the larynx, so my experiences won't directly apply. To beat this requires team work. Beside having God on your team you need the medical professionals, yourself (the patient) and caregivers (family/friends). I think the caregivers have it worse. Take care. There are many individuals who will help you on your way. Rick.

I echo all of the above posts. My H&N was a bit different than your's, but many others had the tongue involved, and there's plenty of help here- all you gotta do is ask for answers to your questions, and someone will know. There are a number of "givens" we have all learned in regards to much of what you will experience, including what is expected of the Drs taking care of you so that the H&N experience is not too bad.  My last rad was in early-April of '09= you are gonna survive this thing, so get used to it! There's a few Folks who hang around this place that are well over 10-year Survivors. Many of us look back to where you are now, before the tx starts, and think of it as the worst of times. That said- the bright side is that it does get better, and is very doable. No walk in the park, but can you go thru it all and survive? It just might take over your life for awhile, but keep it in the Positive and keep moving forward to the last day of treatment and the start of your 2nd chance at life. And,

Believe

kcass

No need to repeat all of the good advice my friends have already convened. Stay strong, if you feel 100% comfortable with your medical team, take a leap of faith and do exactly what they say, and if not, be selfish and seek a second opinion. 

We will be here for you through thick and thin.

Mike

Kim_M said:

me too

Hi, I joined today too. I had most of the same symptoms as you, but getting to the dx was very different. I had 2 surgeries to remove polyps before the lab report came back positive for cancer.  I was referred to UofM Cancer Center and things moved quickly from there. I had Chemo on Tuesday. Yesterday was bad for me. Better today.

I go back the first of the month for new CTs and a Tumor 'mapping' surgery. At that time they will decide where treatment will go. (chemo, radiation or both, or surgery.) The hope is this chemo treatment will shrink the tumor by 50%

I'm 55 yr old female and will fight the best I can. Maybe we can chat sometime

Welcome, and hang on for the ride...

Like mentioned above, checkout the SuperThread when you can...awesome info there. I was STGIII SCC Tonsils as mentioned above. I also had a lymphnode as a secondary (same side)..usually if you have lymphnodes on opposite sides, they classify you as STGIV....

Anyways, with the tumor location, they decided similar to your MD's thoughts, see what effect the chemo has before surgey or dissection. For me that was an excellent call..., the tumor actually dissolved away near the iitial nine weeks of chemo.

It didn't lessen my treatment any, as I still had seven weeks of concurrent (weekly chemo and daily rads)...

But the results, I have been clean and clear four years now...

Best ~ John

Isign4Him said:

HI

Hi, wished with all my heart I could kick you out of this club, but now that you are here this is agreat place for support and information. People here are great and have alot of valuable information gleened from experience. You have close to what I was treated for. I had sqamous cell carsinoma of the left tonsil that spread to nodes on both sides of my neck. First, get the port and the PEG although I hated the PEG but had to have it for a month before they could fit me for a MIC-KEY button, I strongly recommend the MIC-KEY as opposed to the PEG. Its a lot less inavasive and managable. The port and the MIC-KEY are the best things I did and they will be a God send for you also.Get them before the TX starts if you can. Stay positive, its tough but it will make your journey alot better. Dont be afraid to ask questions and the DRs and nurses for help. Use this site as it is a great place and will help you deal with alot of different things you will have to face. Trust God !

In Christ, Kevin

Hate to see the seats on this bus filling up again. It's a journey none of us wants to be on but it is doable and I hope yours is easier than you anticipate.

God bless,

Candi

Sorry you had to join our little group.  My situation was similar to yours.  I was 52 and was always having a nagging sore throat that at times the pain would shot like a bolt of lighting into my right ear.  PCM fooled around for a couple of months with antibiotics to no avail.  Then I insisted I be referred to a ENT doc who did the little scope thing and there it was BOT tumor.  Resulting Biospy and PET/ CT scan showed T2N1M0 tumor.  In laymans terms; less than  4cm large site minor involvement on 1 lymph node with no far away spread.  Went through 2 Cisplatin treatments, could not do # 3 due to loss of hearing and 7 weeks of Rads finished in Jan 2012.  It is not an easy treatment but one you can make it through!!!!  I would recommend a PEG feeding tube be installed.  Made things so much easier to maintain proper nutrition when your throat is on fire.  You will do well fellow warrior.  Just put your head down and be determined!!!

Joe