Hi there. I'm 42, married to a beautiful lady 15 yrs, we have 3 awsome daughters,8,9 & 13 been self employed 11 yrs. Not makin a fortune, just gettin by. Nice home. Pretty positive guy, great life! I was dx 2/11/04 w/scc in throat. Don't know stage yet. Had sinus infection, ear pressure/pain, soar throat, all on right side, since sometime between Thangsgiving & Christmas I think, not really sure. Thinking back, the right side of my face has been hassling me alot of 2003. Had right eye infection July '03 sulfa drops cleared it up. Don't know if related. Seemed like it came back a couple of times but drops cleared it up. Didn't really pay too much attention since I've had sinus problems for 20 some years. Didn't gain the standard 5 or so pounds during holidays & thought it was I'd cut out the fries at lunch! My wife recalls that I wasn't the normal heater in bed, I'm talkin bout tempurature folks, everthing else was fine! Had worked my butt off in December & thought I was just burnt out! 1/26/04 I called my family gp's office & asked nurse that took call if doc could just call in script for antibiotic & he did. On 9th day of augmentin I didn't feel well at all & lymphnode on right under jaw below ear was swollen. I called gp & he saw me that day, looked in ear & nose & said no infection just redness. told me I should take antihistamines see if cleared up on its own. I mentioned I'd had a soar throat & he figured he take a look just for drill. He looked a little surprised & said I had a swollen tonsil & I told him I'd had a tonsillectomy when 6. He called a radiologist for cat scan the next day & made appt. w/ent day after that. Saw ent on friday, he said I needed a tonsillectomy on monday & said it might be lymphoma. When he got in there on monday he realized it was'nt tonsil & took biopsy from lump in throat below tongue. Tuesday ent called & said it was scc, I was relieved to know it was'nt lymphoma What did I know? Went to see differnt ent surgeon at Virginia Mason in Seattle & they proceeded to drop a bomb on me, my wife & 13 yr old daughter about cutting my throat out & rebuilding it w/my forearm, feeding tube, trac, the works! I asked just wht the f--- we were talkin about here. I thougt we were to discuss the procedure to remove the lump in my throat. Boy was I mistaken! Anyway, enough of my pissin & moanin! I'm so thankful I found this website & you people. Its been uplifting & scary to read others postings & responses. Hopefully my experiences can maybe help another the way so many of yours have helped me! I need you guys & hope you'll have me. I,m ready to face this deal head on & win!!! I've overcome so many things in my life. This will, I'm sure, be the biggest. I guess I won't speak for quite a while after surgery & until after radiation so this will be a good outlet. Still very scared but ready. The financial difficulties ahead are just as scary to me as the rest of this. They say change is good, I hope so!

Hi Erik,

You and I have very similar stories, I have three boys 16,13,8, I was 40 when I received my "bomb", I have been self employed in the telephone service industry for 12 years now, married 20 years last September.

Your attitude is good (although I am sure there is plenty of fear yet) I remember the period between diagnosis and surgery was the worst.

Some things for you to think about (like you need more) First thing tomorrow (they are closed today) call your local Social Security office, You should have no problem getting some kind of disability. Second, If you have any disability insurance for your business, make a claim. Third If you have employees you'll be surprised how well they can carry the load. Fourth, if you don't have employees, consider hiring one, if that won't work then do you have a "friendly" competitor that you could ask to carry the load. You'll be very surprised how many people will be willing to help.

Get your mind into "Patient Mode" Coming from a self employed do-it-yourself world in to the world of being needy and requiring medical services is a bit different. Not bad mind you just a different frame of reference. I gained a real appreciation for all the good people who take up care giving as a profession.

Take care

Hello Erik,

You are welcome to the group. We are just sorry you have to be here. There are many people here that will be ready to answer questions and just listen to you as you "vent" if you need to.

Whatever you need - we will try and help.

"Cancer is just a word; not a sentence"

Take care,
Dinah

Hi Eric,
If only I had found this website when I was diagnosed with stage 4 oral cancer in April of 2003. I didn't find this site until after I had surgery and finished radiation. I am also 42, married and our three youngest daughters are 9, 11 and 13. Word of advice to you for the girls, talk ALOT to them, let them know how you feel. I remember telling my 13 year old, Mercedes, that I couldn't promise her that I would come out of this OK but that I was sure going to do my best. She kept trying to get me to promise her that the cancer would never come back and even though all I wanted to do was to make her fear go away, I couldn't tell her something I didn't know. Be real honest with them. If I have learned one thing through all this it's that kids are so adaptive, they can take on anything if you have the right attitude. They will want to help take care of you. You sound alot like my husband so that might be tough for you at first but try. I have always been the caregiver for my family so it was hard for me to become a patient.
For my surgery I had the lower part of my left jaw taken out and replaced with a bone from my leg along with a left side neck disection. Had the trach, all of it. Believe it or not, only my mother could tell now. Surgery was the easy part for me, the radiation is what kicked my butt! I am 7 months past radiation now and life is good, pretty much "normal".
You can get through this Eric, lean on your wife and kids, let everyone take care of you for awhile. One thing my friends did for me was a "meals" program. For the first two months after I was home from surgery, another family delivered dinner to us every night of the week. It was an amazing show of generosity and caring and helped my family so much (not that I was that great a cook, lol. My family has never eaten so well!).
Please don't read or listen to the stupid statistics you will find on cancer. I did and sent myself into a tailspin about it until I listened to others on this board. Mark and Gary are a wealth of knowledge, always there to help and encourage and Brian, even though he doesn't know it, has gotten me through some pretty rough times with the words he will post. People on this site are here for you, you will empower yourself by listening to them. There are sad stories, some posters that are still sick, etc. But keep in mind that the posters that battle this and win usually move on with their lives and don't visit the board to often. There are so many on here that will enlighten you and make you feel like you can go on.
Please keep us updated on everything so we can walk through it all with you.
Minnie

Hi Erik,
And welcome to the club that no one wants to join. I asked my head & neck surgeon about tonsils growing back and he stated it doesn't happen.

Lymphoma is not neccessarily worse than SCC, some doctors feels that it is very responsive to chemotherapy which SCC isn't. Not that any them are great choices.

You didn't mention in your post about a consult with a radiation oncologist. I had an advanced tonsil cancer and they were able to treat it with radiation and chemo alone.

What is difficult about the early stages of diagnosis and pre-treatment, is that you have to make informed treatment choices when you're in total fear!

And they will keep dropping bombs on you too -that's what we are here for - to walk you through this. We are not doctors - just patients like you. We encourage you to challenge the doctors, ask lots of questions and be your own medical advocate. Always bring someone with you to exams a that is good note taker or get permission to tape it. Doctors say very little but also a lot in a short time period. It is easy to miss key points upon which vital decisions must be made. My oncologist once told me that the doctors basically will tell me all of the tools they have to use in this battle and I have to choose which ones. You also need to ask if they have tumor board and find out who the rest of your team members are. You should have a nutritionist and radiation oncologist as well. They should be a multidisciplary team - I would accept nothing less.

The main focus has to be surviving the cancer -you have to look on the horizon. It's easy to get caught up in the details and horror stories about surgery, radiation, recurrence, etc. Remember that many who come here are suffering unusually severe problems and that those don't report in are doing well and feel guilty for doing well and drift away from the forum. You need to temper what you read here as a result.

Financially, this can be a tough time also. SSDI pays a whopping $1500/mo if you are fully vested in Social Security. There is a 5 month waiting period for start of benefits and it is retroactive to the date of diagnosis so you don't need to run down on Tuesday. I would call and make an appointment. You will need to bring copies of your medical records and certified copy of your birth certificate. The claim is usually based on "cancer fatigue", an inevitable side effect.

Call your mortgage company and tell them your plight - mine had a special 2.95% interest rate for almost 2 years. Call your utility company and phone co. and get the medical and lifeline rates. I even got a disabled placard from the DMV which gave me free parking in many places. I also lined up an equity line of credit ahead of time. Also I found a paralegal (cost around 400 bucks)to set up a living trust, will, advanced directives, durable power of attorney, etc., which we all need anyway. I also gave my wife power of attorney over my accounts there was a while that I was wiped out to pay the bills. It is better to get these things in motion while you have a clear head. I really regret not having insurance to cover credit card and mortgage payments.

If you end up having the surgery and radiation it could take an entire year before your activity levels are back to normal. It took me almost a year with radiation and chemo alone. I have been phasing back in for the past 6 months. Remember that we all recover at different rates and your relatively young age is in your favor. Once in a while you'll read about people who went to work during much of this period, scheduling their radiation late in the day, driving themselves to the hospital, etc. What I am saying is that there is a wide range of response to treatment here so think positive.

This is not the time to let your insurance lapse. My bill for radiation alone was well over $300,000.00 (which my HMO paid 100%).

And always remember - take it one day at a time!

Hey Erik,
As a caregiver, I know how frightened your wife must be, too. I was so overwhelmed when we got the diagnosis and only had days to make decisions, that I just cried and cried. But then you get the strength (I know ours was from God and other wonderful church people and family), that we got busy making decisions, getting the surgery, etc. Dan had a canker sore on his tongue for quite a while before he went to a doc and then was put on multiple antibiotics before his actual diagnosis. We had never even heard of tongue cancer. He had clear nodes from modified neck dissections so no rad in the beginning. But within three months had it back in his neck. We were only with a local oral surgeon, but since the mets ended up at the University of MD and they have a tumor board. We feel in much better hands now, so I do think it is important to be your own advocate and get to where there is a tumor board and a team of doctors to agree and treat. The trach was hard, but I think harder on me trying to understand him...we got a white erase board for communicating and that helped once Dan was able to write a little clearly. The morphine made his writing chicken stratch for a little while. My hubby is 48 and we have two boys, 24 and 19. We have never been sick except for the occasional cold or sore throat. That's why the cancer sore never made us think of anything, especially like cancer.

We have had help with meals and Dan has had a PEG tube for about 4 weeks. Our insurance wouldn't cover the BoostPlus he needed (and it's pretty expensive), but our Bible study had a BoostPlus party for us and brought cases! There's always a way, plus ask all kind of questions, becaause somethings can be paid for by insurance or assistance, but they never usually give you all the information....just ask and ask and ask!!!

Take care, will pray for you and your family, and feel free to email anytime. My husband is on disability and I just got laid off. Sometimes life hits us hard, but God is there and able to help us deal!!

Take care,
Debbie

Minniea, while your post is enlightening, I would like to make a comment on a statement you made. I have gone through this life-threatening battle and consider myself a winner at this moment. Ever since I discovered this forum, I got stuck to it and the first thing when I turn on the computer every morning is to read the posts on this forum to see if my experience can be of any help. I don't post often because of my inadequate knowledge about this disease, unlike Gary and Mark and also because of my low language proficiency compared with most of you. I won't allow myself to disseminate even the slighest bit of wrong information. Nor do I want to add any discomfort to our fellow members. Now that it is over two years post diagnosis, I am still aware that I was once severely ill with advanced cancer and I know I can never get rid of this word for the rest of my life. I will not hide myself away from this cancer world but I have a firm belief that with my strong will and positve attitude, cancer will remain just a word (as quoted by Dinah) in my dictionary.

Karen stage 4 tonsil cancer diagnosed in 9/01.

Thanks all! Gary,the way my ent explained it was that the tonsillectomy I had when I was 6 was performed in a way that not all of the tonsil tissue was removed & the remaining had become inflamed & swollen or possibly cancerous. I meet w/radiation oncologist tomorrow & should know more. Virginia Mason seems to have an all encompassing team approach w/all the professionals you refer to.

Hi Karen,
thank you for the compliment but I can assure you that I am no expert on this disease. I have always been a quick study and I am in the information business as a consultant.

I look forward to your posts and wisdom as one who went before me with an almost identical treatment plan. I find your use of the language very eloqent and I have learned much from you. My hope is that you will continue to blaze the trail ahead of us.