new and scared

susan0803 · October 2010

Kent Cass said:
Mike
Really not possible to add anything new to what others have posted in this thread. I would only "second" the importance of staying Positive, keeping your Med team in the loop as to how you are physically coping with it all (and mentally, too), and stressing the importance of getting the necessary Nutrition/ammo your body needs to best fight this battle. You will survive this C thing, as we all have. The roads we take vary in difficulty, but know that thru it all the one you are on leads to survival in a physical state that will be entirely acceptable to you.

Believe

kcass

Hi Mike
Mike,
My husband was diagnosed with tonsil SCC at the end of July. He had some lymph nodes and tonsils removed in July and August. He started chemo/radiation on 9/28/10. Radiation is 5xweek for 7 weeks and 3 rounds of Cisplatin (week 1, 4 and 7). He is starting week 4 on Monday and the 2nd round of chemo on Tuesday. So far we are doing pretty good - mostly thanks to this discussion board. I've gotten the most information to help us understand all of this and how to deal with the side affects of the chemo and radiation from everyone here. My suggestion to you is to post as many questions, comments, feelings etc on this board and read all of the posts, even older ones (I just did a search on benadryl for some information I was looking for).

I can't thank enough EVERYONE on this discussion board for how helpful and supportive they have been to me as primary care taker for my husband. Also know that it's perfectly OK to be scared, angry and all the rest. I certainly still am all of those things, maybe even more so than my husband is.

Hope this helps you feel that you are not alone and everyone here is here for you too.
S.

pascotty · October 2010

Totally understand
Where you are at. I was petrified. I deferred treatment for a month to prepare myself and detox my body. My treatment ran quite smoothly. No peg no sore throat and only a slight reaction to chemo. Seemed like it took forever to begin. Seemed like forever during. Now I can't believe that was all 6 months ago. It takes it's course and then you get on with life. I had scc of the right tonsil with one lymph involvement. Tonsils removed. Nine back teeth removed. Side effects now are tinnitus. Slight hearing affected. Saliva back at around 80 percent. Tastebuds back. Lymph gland sometimes doesn't drain as well but not all the time. Shoulders feel a little tight at times. The first three months after treatment can be a little tiring. But I worked all the way through fulltime and still am. I sincerely send my love and smiles to you. You are in the what I believe the worst stage. The emotional battle. Facing your own mortality. But it's okay. The gut turning does stop and you will smile and laugh again and mean it. Best of luck. I wish I had found this site before treatment it would had lifted a heavy burden for me. Instead I found the Internet. Huge mistake. It got me very depressed. If you can avoid it avoid it. But totally understand the need to know. You will find really great support here cause we really understand xxxx

micktissue · October 2010

Scambuster said:
Step by Step
HI Mike,

Sorry you found yourself here but just know you have found a great bunch of people who will help you through each step of the path ahead. You should find a lot of good insight and extra information as well so post whatever and whenever. Just know you can get through this Mike so hang tough and take one step at a time from here on in. Things will all fall into place for you.

Firstly, your PET CT will determine exactly how big the cancer is on your tonsil and also show if it has moved any lymph nodes. it is not uncommon to have a couple of nodes 'light up' but the docs will let you know if that is inflammation or the cancer is there as well. The PET CT is easy, follow their pre-scan instructions re: foods (esp no sugars) for X hours usually from say 8pm the night before. THey will inject you with a dose of sugar type solution with an isotope piggy backed on it which will get sucked in by any cancer cells and by obvious to the scan machine., then they slide you into the Scan and take a bunch of pics which will show a 3D what is there.

Next step is to decide your treatment. You have 3 main stream options offered by the Cancer treatment centers. 1 Surgery - go in and cut it out. 2 Radiotherapy - usually IMRT is best if that is available. and 3. Some sort or target therapy or Chemo - to kill off or inhibit the cancer cell reproducing. These can be done in various sequence. i opted to have Surgery them concurrent Rads and Chemo (Erbitux).

Once your PET CT result is in, you will meet with the Doctor to determine your best course of action. Don;t be afraid to ask them questions and if you feel uncomfortable, it is OK to wait and seek a second opinion. you need to be confident in your Doctors Mike as they will be your friends for the next couple of months.

Most tonsil cancers are caught fairly early so the tumor will probably be quite small. Mine was 15mm x 10mm. for surgery, they simply go in by the mouth and cit it out. They will try to get 'clear margins' meaning they cut it all out with a margin of say 5-10mm around the tumor to ensure it is all out. No stitches usually and it will just heal over. You will have a nasty sore throat for several days. Doable. if they find it in the nodes, they will opt for a modified neck dissection. more extensive but again-doable.

If you opt for the Rads, as said earlier, ask about IMRT (Intensity Modulated Radio-Therapy) is does less collateral damage to surrounding tissue than standard Rads. On the Chemicals, much will depend on the extent of the treatment. if there is no spread at all and they get a good cut, they may say 'go home'. Most however will recommend Radiation as the next option and if they are more concerned, then the Chemo/target therapy (different type of Chemo) will be recommended along with rads. Rads usually goes for 7 weeks. We all react differently to the treatment Mike. Some waltz through and keep working, while others end up sick as a dog and in hospital.

That is about enough for now from me Mike except to suggest you get a diary/note pad and carry it from now on, write down questions when they arise so you remember to ask the Doctors and if you can have a friend/Spouse attend the meets with you, it helps to remember what was said. Start a file with all info you download as you go along. You may feel overwhelmed right now Mike, but you will catch on quickly.

Keep positive Mike, you can do it - we did.

Scambuster
SCC left tonsil Aug 6 2009, Surgery IMRT + Erbitux all in Hong Kong. 10 mths now out and doing great.

advocate and ask questions and keep us posted
Hi Mike. Sorry to hear about your diagnosis. You can survive this, a lot of people do so like others have said try and calm yourself until you get more information.

The one thing I wish I had done early and often was advocate for more information. I wish I would have had someone with me who could have advocated for me better than I could. Drs are used to dishing out generic information without mush regard for how this effects us emotionally. I could not think very well when the Dx (diagnosis) was early and my life was swirling. Like Scam said, please please please do not back down from Drs. If you have a question, no matter how banal or redundant, ask it and demand an answer that makes sense to you and your care givers.

This journey you are now on will change your life and it's best to embrace the process so you can stay on top of medications and nutrition.

Please ask for help here and someone will answer. Hang in there Mike.

Best,

Mick

luv4lacrosse · October 2010

Bigfuzzydoug said:
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!

COULD NOT HAVE SAID IT BETTER
Listen to Doug, I would have keyed my reply almost verbatum. I will say the one thing you have control over is your mental attitude. You can choose to be up, or you can choose to be down. I finish the last of my Radiation Wednesday, and finished my last Cisplatin yesterday. I am probably the other side of the spectrum as far a side effects go. I was 240 LBS, a powerlifer, never smoked, I did drink. I have lost 50 lbs since my journey started and the worst of all of the side effects have been with me for the last 2-3 weeks and will probably continue on for a month after my treatments are finished. I have been workig from home for a month as all of the pain meds. I am on, I probably would not look like "driver of the year" on the highway passing by a cop.

Long story short, I logged on today only looking to feel better for me as the strong person I am usually known for has turned into a pittiful little whiner for the last 36 hours. I feel good again just reading and posting. This is the ONLY internet based site i will even look at anymore, so take Doug's advice when he says stay off of the internet.

You will get through this my friend. Do not worry about how easy it will be for you as your body will react to the treatments how it reacts. Be proactive, eat, stay hydrated, be very open minded to getting a PEG TUBE early in the process. I did not, and have lost 50 lbs to date.I finally had my PEG inserted 2 weeks ago today.

BEST

Mike

luv4lacrosse · October 2010

Kimba1505 said:
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

THE OTHER SIDE
MARK ,YOU DA MAN!!!

Kim, what a wonderfull post. I am 2 days away from completing treatment. I have been down mentally for the last couple of days, (horrible side effects) but logged on today just looking for some good uplifting posts. And man did I find a few today.

BEST!!

Mike

hawk711 · October 2010

pascotty said:
Totally understand
Where you are at. I was petrified. I deferred treatment for a month to prepare myself and detox my body. My treatment ran quite smoothly. No peg no sore throat and only a slight reaction to chemo. Seemed like it took forever to begin. Seemed like forever during. Now I can't believe that was all 6 months ago. It takes it's course and then you get on with life. I had scc of the right tonsil with one lymph involvement. Tonsils removed. Nine back teeth removed. Side effects now are tinnitus. Slight hearing affected. Saliva back at around 80 percent. Tastebuds back. Lymph gland sometimes doesn't drain as well but not all the time. Shoulders feel a little tight at times. The first three months after treatment can be a little tiring. But I worked all the way through fulltime and still am. I sincerely send my love and smiles to you. You are in the what I believe the worst stage. The emotional battle. Facing your own mortality. But it's okay. The gut turning does stop and you will smile and laugh again and mean it. Best of luck. I wish I had found this site before treatment it would had lifted a heavy burden for me. Instead I found the Internet. Huge mistake. It got me very depressed. If you can avoid it avoid it. But totally understand the need to know. You will find really great support here cause we really understand xxxx

This is a great support club
Mike

You have the best advice givers in the medical world here. This is a tough battle as you now know, but it is a winnable battle. It's ok to be scared, I'm sure every soldier in Iraq was scared, but they did their job. Your job is to go aggressively into treatment and tell yourself you are going to kick cancers ****. That's what I told myself and it helped and also worked. I am in remission now and still have issues, but I wouldn't let cancer cut my life short. Radiation is the real tool for H&N cancers, it seems to kill off the cancer cells very well. Ten years ago, they only gave Rads and no chemo.
Get support from family and friends. It helps alot. This board is an anonymous way to complain, ask questions, praise others, and really get information from people who care about you and your improvement. We've all been there and we understand....
Go get em and keep in touch with us as you progress.
Steve

new and scared

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