new and scared

Welcome to CSN
Mike, I can't add much as Scam and Matthew covered most of what you need to know for now. Once your treatment plan has been established we can help you with any questions or concerns you may have about type of treatment. We have all been there and can help ease your fears throughout your journey through cancer treatment. It is very DOABLE!!

Matthew was dead on when he said not to research the internet. I did before finding CSN and I scared myself needlessly, most of the information is so old that it holds no bearing on todays cancer survivors.

My one bit of advice for now is eat, eat, eat and then eat some more. Also start getting used to drinking at least 8 glasses of water a day. You should try to gain some weight now before treatment starts as most of us lost weight during treatment and hydration plays a big part in your recovery.

You will do well Mike and we will all be here to help you.

Stay strong,
Glenna

matthewcplourde said:

Just one..
Scambuster pretty much laid it all out in a clear and concise manner

My only suggestion I have is a difficult one: try to avoid doing too much internet research.

You will stumble across some pretty shocking things, and the truth is every diagnosis, treatment and recovery is different.

I know it's difficult, and you want to learn as much as you can -- but I'd leave things in the hands of the professionals for now (and definitely see a few different professionals to get the widest range of opinions/options).

The internet can help, but it can also be frightening... just remember, the info from the internet is agnostic of YOU. Remember that your path will be different, and try not to take the pictures/testimonials/"facts" on the internet as gospel.

Be prepared for a torrent of love and support from the community here though I only recently joined, and I'm floored by everyone here. Great bunch of people.

Agree
I agree with Matthew, Stay away from the internet search. A lot of the information will challenge you with your attitude. You have two percentages win or _____________. You will win with the support of the people her on CSN. They are wonderful. Many times you will feel like your alone, well not here. However they can not read your minds so reach out to us, don't be afraid to ask for help.

1 - Maintain a positive mental attitude

2 - Believe all will be fine and it will be

3 - Let go of your pride and accept help

4 - Hang tight to your faith, God loves all

5 - Never, Never, Never give up!

John

A LOT of information for you...
First and foremost - YOUR TONSIL CARCINOMA IS NOT A DEATH SENTENCE! There are millions of survivors walking around, many of whom had considerably worse cancers than you and dramatically more severe treatments! Here are my insights in no particular order. It's a TON of information, but please read well...

* Remember that doctors make guesses based on the data in front of them. 2nd and 3rd opinions are very worth while.

* Remember that doctors can only make a recommendation based on the data that they have in front of them. If you see three doctors and they're all looking at a single pathology report, just because you get three consenting opinions doesn't mean they all agree on the right course of action - it means they all agree based upon what they looked at. Getting a 2nd and 3rd biopsy can be very important.

* The most important doctor in all of this is YOU! You have to take charge of your body and treatment. So do the following:
1. Get a big 4-5" thick binder with folders and keepers for all the info you're going to get.
2. Bring someone else with you, NOT YOUR SPOUSE, someone who can remain objective and may have either gone through cancer treatments or helped someone who did, to all doctors visits. This person is to remain objective and help ask questions you didn't think of. Emotions will cloud your thinking. Bringing a digital audio recorder or micro-cassette recorder is a good idea as well. The docs will allow it and if you're not sure afterwards what a doc said, you can play it back to confirm.
3. Know your insurance policy - deductibles, process for specialists, co-payments, etc. Understand what they will pay and what you will pay.
4. Have your finances in order. Cancer treatments can get expensive.
5. Save all bills paid and expenses, even travel, meals, parking, etc related to a doc visit or treatment. It's ALL tax deductible!

* Understand and accept that there are basically 4 phases of the cancer cure and you will go through them all:
Phase 1; "Congratulations, your biopsy was positive. Your PET is scheduled for Monday. Good luck trying to sleep and not cry over this first week. We have no information to give you yet." This is the phase you're in now and it's a rough one.
Phase 2; "School's in session". This is the phase where you'll have tons of doc visits, tests and scans. You'll read, you'll research, and you’ll go crazy trying to figure out what is the right course of treatment. This one is bad too.
Phase 3; Your actual treatments. While the physical side-effects of some treatments are rough, it feels good to just have a plan of attack!
Phase 4; Your cancer is gone, you're cured and you have to live for several years with PTS. "Is it really gone?" "Is it coming back?" "What's that new pain?" They say cancer survivors don't have little headaches, only brain tumors. This goes away with time.

* There are two types of tests you will get to determine the type, stage, severity of your cancer and your treatment. Scans and pathology. The scans will be PET and/or CT. PET is they inject you with a radio-active sugar solution. After waiting an hour and peeing, you get the scan. "Cancer loves sugar" so the PET will show where the sugar goes in your body. Some things light up automatically - your brain and your bladder and kidneys (as they're already processing out the solution). They're looking for "uptake", other area(s) where the solution goes to. Hopefully, it's only spotted in the one tonsil. Note that PET will only pick up uptake in the macroscopic range of about 3-5mm. It's not perfect, but it's as good as we have right now. CT will take cross-section sliced pictures of your body looking for masses and tumors. Like PET, CT will only spot up masses in the macroscopic range of about 3-5mm. Not perfect, but it's what we've got.

The MOST important though is the pathology report from the biopsy. This is the actual cellular tissue that a Pathologist looks at through a microscope in the lab. What type of cancer? What's it surrounded by? What are the margins? Is it well encapsulated? Is there lymphatic tissue in it or around it? The answers to these questions are more important than the scans. It pays to have a 2nd and 3rd pathology review. My initial path report was wrong. Done by a local county lab contracted by the hospital. The path reports at Johns Hopkins and Wake Forest discredited the first and it meant a different form of treatment.

* The PET and CT scans can be given to you on CD - GET THEM! Make copies and keep them so you can give them to other docs. You have the right to them. If at all possible, get and keep your path slides as well. They won't get lost if you have them locked away. Hand them off to docs to give to their paths as needed and get them back. Get copies of your medical records as well. Having them in hand means you can hand them to a new doc directly. If not, BEFORE you go to see the 2nd and 3rd docs, call 1-2 weeks ahead of time to make sure they have your medical records, scan CD's and path slides (if necessary). Don't go to a visit and hear them say, "well here's what I think, but we haven't gotten the results of the (test). This is what I think based on the first (test)." You have to take charge to make sure the docs get the data they need.

* Be careful about you read on the net and what your friends and family tell you. Why? BECAUSE EVERYONE'S CANCER IS UNIQUE AND EVERYONE HANDLES TREATMENTS IN THEIR OWN WAY! I'm coming into my 7th week of radiation to my throat. If I believed everything I first read and heard, I would have a PEG feeding tube in by now. But you wanna know something? I'm still eating solid foods!!! So there! My relatives would tell me horror stories and I would have to ask, "how old is he?" "86." "Did he smoke?" "All his life." And this means I'm going to have the same experience as him as a 41-yr-old, non-smoking, triathlete?!

*** VERY IMPORTANT!: When you have your first Oncology consult after your PET, the most important question to ask is, "Do I have time to get 2nd and 3rd opinions and new path reports or is this cancer aggressive enough that requires immediate treatment?" Sometimes the answer is that they need to get you on chemo or radiation immediately. That's OK. If the first round of treatments is to stop its spread or just shut it down and it's not the exact right type of treatment, that's OK. If you have the time, that's even better. But if it's metastasized and is in your lymph nodes and the Oncologist wants to hit it immediately, just go for it. In some cases you have time, in some cases you have to put the brakes on it immediately. And again, millions of people have heard those words, gone through treatments and are now cured and living normal lives.

* Don't dwell on "why?" Identifying the cause is important because your lifestyle affects your risk factors which can affect your type of treatment. Smoking? Acid Reflux? Alcoholism? HPV? Understanding the cause is important - but don't dwell on "why me?" **** happens. We're all sorry this has happened to you, me, everyone here. But we're here now and we have to deal with it. People are amazed as to how well I'm handling my treatments. I haven't missed a day of work and I'm still smiling and laughing. It's because this is simply what I have to go through to get better. What am I going through? And this is just me - Constant burning pain in my throat. My voice is nearly gone, it's a muted raspy whisper. A constant horrible taste of dead, burned tissue in the back of my throat that makes me nauseous. The skin on my neck is fried. And I sleep 12-14 hours a day now. Now that's just ME. And I'm not complaining. It's what I have to go through to get better and I WILL get better!

* Caringbridge.org - Set up a Caring Bridge web site to keep people up to date. That way you can post and not have to answer, "so how are you doing?" 50 times a week. It really helps. You can check out mine if you want. My journal is a pretty funny read. Check out some of the posts when I first started radiation: http://www.caringbridge.org/visit/dougbernstein

* A support group or counseling for your immediate family can be very helpful. Take mental note - you're about to go through something big, either surgery, chemo, radiation or a combination of the three. That's the only three means we have of beating this disease and all are big things. Your spouse or immediate family (whomever is your immediate care-giver) is going to go through a lot as well. There will be resentment, anger and guilt. Dealing with it up front and talking about it in the open keeps you and them from going nuts. Wife my wife's business, the house and the kids - it's now 95% all on her. That's a lot more than the 60-40 we're used to. It's tough on her so we both have to recognize it and work together through it. Good mental health promotes good physical health. Remember that!

* STAY POSITIVE! Like I wrote earlier - This is NOT a death sentence! Did you know that when Lance Armstrong finally went to the doc to find out what this lump on his testicle was, they basically said, "you have testicular cancer. And you waited way too long to get it checked out. It's spread to your brain and lungs." He had stage-4 cancer in his brain and lungs! You would instantly think that means a dirt nap for him. But no. He went through his treatments, beat it and 18 months later he was back into his normal life and went on to win the Tour de France 90 more times! ;-) It's not because he's an elite athlete. It's because he stayed positive and because CANCER IS SURVIVABLE TODAY! THESE TREATMENTS DO WORK! So have faith brutha! You can and will beat this!

* If you do want answers from the Internet - just come here and ask. You've got some 20+ year survivors here and lots of people with extensive experience with tonsil cancer. This is one of the best groups of people you'll ever find!!!

Good luck! We've all been in your place. Write to me here or you can email me directly at rightclick@mi-connection.com if you have any other questions/concerns. You're going to be fine. You may not like to read this but, welcome to our club!

areomech said:

Thank you
Thank you all for the peace of mind and advice. I will be sure to keep everyone infomed what happens to me and my progress.

Great Advice
All of the above is excellent advice...as you venture deeper into the journey, I'm sure there will be little specifics that will surface. Most of all of us have had something similar that we've dealt with. Stay in touch and ask questions, someone is usually online or will be shortly with some experience and knowledge to help you out.

Stay positive like Sweet mentioned, draw on your Faith, Family & Friends....we are all within this catagory.

Best,
John

Skiffin16 said:

Great Advice
All of the above is excellent advice...as you venture deeper into the journey, I'm sure there will be little specifics that will surface. Most of all of us have had something similar that we've dealt with. Stay in touch and ask questions, someone is usually online or will be shortly with some experience and knowledge to help you out.

Stay positive like Sweet mentioned, draw on your Faith, Family & Friends....we are all within this catagory.

Best,
John

The best information...
...can be found here. Since the above posts have shown you the tremendous amount of first hand information that can be found here...you also need to know of the care and support that exists on the site.
Mark, the fellow you see to the left, was diagnosed with SCC of the left tonsil, stage IV HPV16+ in April. In May he had the tonsil, surrounding area, part of his soft pallet, part of his tongue, all of the lymph nodes on the left side of his neck and the the left front neck muscle surgially removed. In June he started chemo and radiation. His last day of treatment was July 20th. The picture you see was taken on August 11th, where he ate 20+ BBQ wings at my dad's 75th birthday celebration (also drank a beer, maybe two - sorry Scam).
This weekend we just came back from a biking weekend in Maryland including Assateague Island. We not only biked, but swam in the Atlantic, ate crabs, and some other adult stuff that cannot be mentioned on this family freindly site.
I tell you this so you know there is an other side. What you will go through is something like you have never imagined, nor would want to. But you will find good doctors, find a good facility (go to the best in your area, or travel outside your area), and have good support around you. You will move through this one day at a time and no faster. Some times the days will move very slowly, but they do move in a forward direction. I felt great satisfaction crossing them off as they were done.

Mike, stay with us here, and you will never be without knowledge and support. We even laugh sometimes.

You are at the beginning...there is a finish line. We cheer all the way,
Kim

JUDYV5 said:

Great Advice
There is such great advice on this site. Keep positive - attitude is so imprtant.

Everyone is different
Everyone is different and has a total different outcome, you have entered a GREAT group of people, sweet was right attitude, we all where scared, and chose different outcomes, wait, let us know and we can stand behind you here at least....Dennis

Jumping on the Welcome Wagon Bandwagon
areomech,
Echoing the others' sentiments - sorry you were in a position to be looking for cancer support - glad you found this site. Luckily, I found it before treatment started - it's been great. Eat eat drink drink drink. Keep us updated. Do well.

Feeding tube
It's ok to be scurred, I was too, but you will be fine. I was diagnosed with stage 4 last October in my tonsil and neck lymph nodes. Looked like the size of a small baseball on the side of my neck. My wife and I were scared too as everythings happens so fast, but we just did everything they told us and as fast as we could. During the biopsy they took an ice cream scoup size out of the back of my throat, then I had 6 back teeth pulled as a prevention for later on, daily radiation for 8 weeks with Chemo every 3 weeks -a super strong dose as I was stage 4(Cisplatin-it is really stong and helped the radiation to work). This Chemo is hard on your kidneys, so DR said drink lots of water to flush it out. This is very hard to do even when not getting radiation, so if the DR suggests a feeding tube, get it up front, don't wait until later during treatment when you feel bad, just do it now, it will make adding water easier. I got one and mainly used it to add water, water, water to flush out the chemo and help kidneys, and it worked, and use the anit nausea meds (I found the 4 mg anti-nausea "Ondansetron" tablets worked best and was even better than the 8 mg-the 8 mg was too strong and actually made me sick)- They will probably give you anit nausea with the chemo meds as well, take it, and if feeling real bad you can also go in to dr and have them add anti nausea meds thru your your port)and I didn't even throw up once during my treatment, which I was told is rare. Don't suffer if feeling bad, they have lots of meds to help you, take them if able! I used lots of gravy on food too which helped alot to eat! Now 12 months later my blood work is perfect, my chemo port (i would get a port too if suggested)and feeding tubes are out, I am feeling good, and gained back my weight. my last scan was good too.
Hang in there. Keeping a positive attitude is crucial. It will be ok.