Well, I'm glad I found this forum. It has a great deal of reality and perhaps some hope. Prior to the holidays, I had a neck biopsy for a big lump that only my husband noticed. Unfortunately, the diagnosed this Monday was for squamous cell carcinoma. Since this is Wednesday and I was referred on to a medical team in Denver, I've thus been staged at Tx N3 Mx. From what they tell me the "x" numbers will be filled in after my scope surgery in mid month so it can be further staged, but it is Stage IV at this time. They just need to get the scans and the exploratory done. Since I've already been losing weight, I'll have a PEG tube put in immediately.

Lets just said I'm really REALLY scared.

thanks for being here

Jen

Hi Jen, sad to learn that you are just diagnosed with stage 4 cancer but glad that you have found us in time. What is your primary site of cancer? What keep you from losing weight at this moment when treatment has not yet started? I have lost several lbs too before diagnosis but have stopped losing when I ate a lot prior to treatment because I knew that once I started treatment, I would lose a great deal more.If you need a PEG right now, does it mean you cannot eat by mouth?
Hope you won't mind my being so inquisitive. Just want to offer the right help and don't panic now, a lot of stage 4 cancer patients survive and turn a new leaf after treatment. I am one of them.

Karen.

Jen,

Welcome to this site -- many of us here know how frightening it can be when this kind of diagnosis seems to come out of nowhere. As you go through the next few weeks of doctors' visits and examinations, please ask as many questions as you need to in order to understand what they are finding and recommending. It's best if you can take your husband or another family member to help take notes and also listen -- there's so much to absorb in a short period of time.

I would also second Karen's suggestion that if you can still eat reasonably well by mouth at this point, please try do so for as long as possible.

Feel free to ask questions here as much as you want -- there are plenty of people here whose experiences can be helpful to you as you go through the next several months of treatment.

Cathy

Thanks for your replies. It's Supraglottic meaning I have a primary tumor on my supraglottis. Of course, all this terminology is new to me, but due to online research the doctor confirmed two days ago that I was already at Stage IV due to the huge swelling on my neck. I hate to sound defeatist but it just doesn't sound like I have much positive news to grasp right now. I'm only 43 and have three school aged children. Tomorrow I meet with the radiology department. It seems that treatments, surgeries and appointments are being made for me, without me really understanding what is going on.

BTW, I'm not real good at getting around these boards yet, but I assume they are read by someone. Of course, I'm dealing with alot of quality of life issues right now, being at Stage IV already, I'm questioning whether or not I'm up for the fight and when I can express to my medical team to stop treatment. Unfortunately, I keep trying to find more Stage IV survivors with similar stories, but nothing inspires me.

Honestly, and please forgive me for sounding grim, but I feel like I've just been issued a death sentence and I should gently glide into that good night.

Brainstorker-
Don't you dare give up the fight!!! I was 50, engaged with a 7 year old daughter at home when diagnosed with stage 1V tonsil cancer. That was almost 3 years ago! You can survive the treatment and go on to live a very productive life that will have much more meaning! Hearing that word cancer can put the fear into you, but it doesn't always mean a death sentence. We are there for you!! You need to focus on just getting through day by day one step at a time. And fight! Love - Kris

Hello Jen,

Welcome and sorry You had to find us and really glad that You have. One thing You can be sure of is that we DO know how scared you are at this time. As the saying goes.. "Been there, done that". The posts that You put up are read by a very great number of people, All of whom are pulling for You in ways that are really amazing. Stage IV is only a number. Both Karen and Cathy are long term survivors as am I and quite a few others here. Take "HOPE" and fight with every fibre of your being. You will be able to find an inner strength that You may never knew existed. Sending out positive thoughts and prayers your way.

Peace
Jack
..........
Dx 1/15/97 SCC rt. tonsil met to rt lymph node Stg IV,
Srgry 1/23/97 tonsillectomy & mod radical neck dissection,
Radiation 35 trtmnts both sides

Jen...please do not give up before you start the fight,
My husband also was diagnosed as stage IV ,his tumor was 9cm ,pretty big. He found it whilst shaving one night and swears he never felt a thing the night before. You have the strength for this fight , three kids who really need you!
The road ahead won`t be easy but, there is light at the end of the tunnel.
Your absolute terror at the moment is jumping out at me ..I wish I could help to reassure you.
Please keep in touch , if you wish private email any of us , we have all felt as you did at some time.
Take care
Marica

I was diagnosed in April of 2003 with stage IV jaw cancer, I was 41 with four children still living at home. I am 43 now and my life is very, very close to normal. I had major surgery and 7 weeks of radiation treatments. You can do this and you can survive, but you need to make wise decisions now about your treatment. Make sure you are at a comprehensive cancer treatment center that will be up date on all medical procedures available to patients with oral cancer. Keep us posted so we can help you. I also sent you a private email.
Minnie

Jen,
My husband was diagnosed in December of 2002 - the whole thing started with a large mass on his neck, much like yours. His was also stage 4.

Want you to know that now, two years later, he is back skiing on the Colorado slopes (we live in Colorado, too) and back to "active duty" on the fire department.

Treatment is a challenging road to walk - but one you CAN make it down.

Anita