Just Found Out

debbieg5

Ron49 said:

Hi Debbie,

Thanks so much for the reply. Any and all info at this time is so helpful. I do feel like I want the tumor out of my neck but the Dr is saying it may be too large for surgery alone.

Thanks again Debbie!

food
Ron...since it's the holiday time with lots of good food everywhere...take this opportunity to eat and enjoy as much as you can. Unlike others, you can indulge to your heart's content and not feel guilty. You can be like a squirrel storing up for the winter. :-)

Ron49

ekdennie said:

second opinion
I am so happy that you were able to find this website. there is always someone on who can help, and if they are not on today, they will be soon. I can not relate as far as location of tumor and since I don't know what type, I can't relate there either but I understand about the unknown and the internet.
From the time you get diagnosed it can be very scary. then you have to determine which option your doctor offers you is the best for you. Unless your tumor is very fast growing, things can progress very slowly. while waiting, get a second opinion...it never hurts to see another doctor and you might get a less invasive option. My tumor was in my hard palate and had grown into my sinuses. I had to debate between seeing the doctor everyone said was the best in my area, but who had a backlog due to a death in his family or seeing someone else who was available right away. I chose to wait for the best. I am very glad I did...he was the right fit for me. while waiting for my surgery I went to my family physician and asked him what I could do to improve my recovery time post surgery. (I am the mother of three kids under 5, my youngest at the time of diagnosis was 4 months old) he ran blood work and was able to get me started on iron pills so that I wouldn't be anemic when my surgery came. he also said to exercise as much as I could...it gets your blood pumping which helps healing!
It is important that you become your own advocate. ask dozens of questions about what will happen, what your options are, why they recommend those options, how soon they need to begin, etc. if at all possible, write everything down and then if you don't feel 100% comfortable with the options...wait a day to decide. it will leave you feeling in charge and more confident when it comes time to have treatment.
Be very careful with online resources...many will just make you depressed with inaccurate information for your type of tumor. I even found one site that I thought was telling me accurate prognosis rates, only to read the fine print that indicated the last patient treated was treated in 1990 and that they were just indicating who was still alive at the time of the survey, it didn't include who had died from natural causes or who had died from the cancer. I ended up trying to read the actual document, not the summary with graphs that was online and found that most of those who were listed as deceased had died due to old age. they had been in their late 70's and 80's at the time of diagnosis! I am 31 years old...that sort of information didn't give me quite what I needed. a lot of research and improvements in treatments has happened in the last 10 years. with the surgery I had, the doctor didn't even have the equipment to perform 2 years ago! I found a better study that concluded in 2008...with vastly different prognosis rates! My tumor prognosis went from 50-75 in the first study to 75-95% in the second, with only one death caused my the type of rare tumor I have (minor salivary gland tumor called Mucoepidermoid Carcinoma).
Ask if you need a PET scan or other diagnostic test before your surgery.
Wishing you the very best. You and your family will be in my thoughts and prayers.
Hugs!

thank you for sharing, all
thank you for sharing, all this info is so helpful and my wife and I appreciate it. I wish you only the very best in your recovery. Keeping good thoughts and sending prayers! God bless

Ron49

connieprice1 said:

hpv +
Hi Ron, I am sorry to see you here but this site has helped my wife and I as the people here know more about the treatments and survival and side effects than some doctors. My wife Connie has cancer at the base of her tongue which spread locally to the lymph nodes in neck. My wife's lymph nodes (2) swoll up to the size of a golf ball from the time she received her initial diagnosis until she received her 1st round of induction chemotherapy. (approximately 2 months)It takes time for diagnosis, biopsy, we needed assistance from hospital because we did not have insurance, once accepted it took 10 more days for 1st appointment and then it took another 10 days from 1st appointment for all the scans, tests etc. to start the chemo. We were hoping for surgery to remove the lymph nodes but it was too late for that and she was prescribed 9 weeks of chemo followed by 7 weeks of radiation. I was afraid that we had waited too late to treat this because the nodes had become so large her appearance looked scary. After the 1st treatment the lymph nodes responded immediately to the chemo and in 4 days 80-90% of the swelling had gone down to almost normal. The reason I wanted to let you know this Ron is because your lymph nodes will probably respond well to chemo also, at 1st when I found out that she could not have surgery to remove the nodes I thought I had let my wife down. So right now the most impotant things you need to do is 1. Try to find out where the primary tumor is located. 2. Find out if the tumor is HPV positive which will give you a better prognosis 3. Find out where you will receive your treatment and what your treatment will be. 4. Try to receive treatment at a cancer treatment center that specializes in cancer care. I wish you well my friend and remember you have friends on this site that are willing to help you and want you to beat this disease. Your friends, Homer & Connie Price

Thank you Homer for all of
Thank you Homer for all of the info. I will ask about the hpv. Also the 2nd and 5rd opinions seem to be a common recommendation. I am not completely sure what my options are since i am with kaiser.
Thanks again for sharing your and your wifes story. It is really touching and helpful. We will keep you both in our thoughts
Ron & Robyn Adams

sportsman

Cancer Diagnosis
Ron: Certainly sorry to hear about you. However you have found a web site of experts in throat cancer here. There is a wealth of knowledge to be acquired here. I was diagnosed in December of 2006 with pharyngeal cancer. Mine was detected by a ENT after a lymph node popped out on my neck that looked like a large knot. A needle biopsy was done and I found out about a week later that it was cancer. I had a radical neck dissection to remove fourteen lymph nodes in which four were positive for cancer. My cancer was hidden below my tonsil and was not seen with a scope. I had complained about a year earlier to my physician when I was having my yearly physical about swallowing problems. The scope was done then and no cancer was detected. After the neck dissection I had thirty five radiation treatments and chemo once a week for seven weeks. Just recently was checked by my ENT and found that I am still cancer free for almost four years now. Life is not what it used to be due to some severe swallowing problems caused by the radiation. However I am still alive and will get to spend another Christmas with my family. I advise from my experience is to get all the information you can get about your cancer in regards to treatment options. I was pretty much rushed to take action on mine from the ENT I was initially seeing. I wish I had got at least another opinion about my cancer and treatment options. God Bless and take care

Skiffin16

My Story Was Similar
Hi Ron, welcome to the forum....

My cancer started off as a small irritation in my throat, nothing bad just annoying I guess. But after a month or so it persisted, not really getting worse. After seeing my general MD and doing some antibiotics, I consulted an ENT.

From the very first he suspected SCC and ordered a CT that afternoon. Later in the day (which was a Friday) he was certain I had SCC in my tonsil. By that time I also had a small lump on the side of my throat behind the ear and lower.

This was all very devastating to say the least as I'm never sick. I have never smoked or used tobacco. This made the ENT suspect of HPV which eventually that was the diagnosis for the origin.

They removed my tonsils the following Monday. But left the tumor at that time. Thought being the location was very near the carotoid artery. Leaving surgery as a final option with the hopes of the chemo or chemo/rads to shrink or dissolve the tumor. After the second round of chemo, the tumor was gone, confirmed with a CT...

I started first with three 3 week cycles of Cisplatin, Taxotere, and 5-FU on Mondays. The 5-FU was administered via a pump 24/7 ending on Thursday night. The following two weeks were recover time.

After that nine weeks, I started seven weeks of Carboplatin every Monday and 35 daily doses of Radiation. Each day before the radiation I was injected in my abdomen with Amifostine to help retain some salivary function (not sure how well that actually worked).

I completed my treatments the 19th of June 2009. My first PET scan in the later part of August show no signs of the cancer, no signs of the tumor.....maintenance mode now with regular visits and check-ups initially every 6 - 8 weeks, that has spread out to about every 3 - 6 months now.

One nice thing about being overweight (6' tall and 275#) is that I managed to live without the PEG. I lost about 42# overall, it was a rough diet for sure.

Just keep a positive attitude and humor....and surround yourself with similar people and staying away from the negative stories.

Faith, Family, and Friends.....

This forum is totall awesome, the amount or prayers from my family of brothers and sisters here....prayer from my family, friends and church have been huge.

Anything that you are going through, will go through, or have questions about more than likely can be answered and probably have been had from others on here.

I am nearly 18+ months post treatment, I am NED, have about 90+ of both my salivary function and taste back....

Best,
John

Bigfuzzydoug

THIS should be your first place on the Internet
Avoid most of the "scary stories" on other sites. The people here are AMAZING!

You can do a search on some of my posts. This first phase you're in is one of the worst. I define the 4 phases of cancer as...

1.) "Your biopsy is positive, you have cancer. We have no information for you at this time. We have to run more tests to see what's going on. Good luck not trying to freak out for this first 1-2 weeks." This time of fear and no answers is brutal - BUT YOU'LL GET THROUGH IT!

2.) "School's in session!" In two ways; you'll become a lab rat. Poked and prodded and tested upon. And two, you'll listen to doctors, read, learn, go to more doctors. You'll go insane trying to absorb what feels like 4 years of medical school into a few short weeks.

3.) The actual treatment. While neither surgery, chemotherapy and/or radiation therapy is a fun experience. It's actually a relief to have a plan and be doing something about your illness.

4.) You're NED (No Evidence of Disease). The treatments worked. And now it feels like your support structure goes away and your left wondering with every little ache, pain, cough and sneeze if it will ever come back. This goes away in time.

We've ALL been through it.

Bigfuzzydoug

Bigfuzzydoug said:

THIS should be your first place on the Internet
Avoid most of the "scary stories" on other sites. The people here are AMAZING!

You can do a search on some of my posts. This first phase you're in is one of the worst. I define the 4 phases of cancer as...

1.) "Your biopsy is positive, you have cancer. We have no information for you at this time. We have to run more tests to see what's going on. Good luck not trying to freak out for this first 1-2 weeks." This time of fear and no answers is brutal - BUT YOU'LL GET THROUGH IT!

2.) "School's in session!" In two ways; you'll become a lab rat. Poked and prodded and tested upon. And two, you'll listen to doctors, read, learn, go to more doctors. You'll go insane trying to absorb what feels like 4 years of medical school into a few short weeks.

3.) The actual treatment. While neither surgery, chemotherapy and/or radiation therapy is a fun experience. It's actually a relief to have a plan and be doing something about your illness.

4.) You're NED (No Evidence of Disease). The treatments worked. And now it feels like your support structure goes away and your left wondering with every little ache, pain, cough and sneeze if it will ever come back. This goes away in time.

We've ALL been through it.

Some thoughts I once posted for newly-diagnosed "club members"
A LOT of information for you...

First and foremost - YOUR CANCER 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!!!

I know this is a ton of rambling opinion. Some may be useful, some may not. 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!

luv4lacrosse

WELCOME RON
Hi Ron and welcome to our special group of friends. I am 46 yo and my journey started on a Saturday Morning in front of the mirror while brushing my teeth. I noticed quite a large lump on the Right side of my neck. I did the usual thing, in to see my Physician on the monday morning, was given antibiotics to no avail, sent for an Ultrasound and then a Biopsy which then verified the cancer. My primary was originally BOT but then was changed to my Right Tonsil with METS to the Lymph Nodes. I had 23 nodes removed of which 19 were cancer. You do want to be tested for the HPV Virus as these types of cancers do well with the treatments being used.

Sounds like you are on the right path with a long road ahead of you. Please try to stay off of the Internet as much as possible as you will become insane after reading all of the "jibberish" that is out there. I only have and only will use this site right here as you are dealing with others that are in the "same boat as you."

Please insist on a second and even third opinion if you do not feel comfortable with your initial diagnosis and plan of treatment. Please try to limit your treatment options to that of a "National Cancer Institute" rated facility, as these institutions are on the cutting edge right now. Take lots of notes and write down your questions in advance as you will forget to ask some of them. lastly I hope you have a strong family support system and a caregiver in place. and please do not hesitate to ask all of us as many questions as you need. we have all been in your shoes, and are here to support you.

BEST!!!


Mike

greg from pa

Hi Ron,
Sorry about your current diagnosis.I am glad you found your way here. My name is Greg, I discovered a lump on the left side of my neck last Febuary.After some exams and a biopsy I was diagnosed with cancer to more than two lymph nodes in early April. The cancer suergeon ordered a pet scan and a CT. From the scans He determined the primary was in the tonsils.He was going to do a modified radical neck dissection, and ordered the tonsils to be removed by an ENT specialist.My wife works at a hospital and had a great ENT in mind.who also specializes in cancer. He studied the scans and determined that the primary did not appear to be in the tonsils but rather on the base of the tounge.He advised against the dissection and did a thourough exam under anesthesia. He took a biopsy on the base of the tounge and determined that the cancer was HPV related. With that he advised that I not get any further surgery. He wanted to try chemo and radiation. after 7 weeks of radiation 5 days a week,and 6 chemo sessions my treatment was complete. incidentally the lymph node swelling went down after the first treatment! After 3 months I had another PET scan and It came back clear! no evidince of cancer. That was the first week of December. I am very gratefull to God and my docters.Particularly My ENT DR Brian Flowers of york PA. He literally saved my neck. The treatment was easy the first 5 weeks , It was little difficult toward the end, but it was worth it.some say Head and neck cancer treatment is one of the tougher to go thru, but it is one the most curable. Head and neck cancer is not a death sentence. I was scared the fi8rst couple months ,but the fear turned into faith.The cancer ultimately let me know where I stand in life ,that I can savor every day and live it as a gift. I hope you stay in touch on this board, Greg

Ron49

Bigfuzzydoug said:

Some thoughts I once posted for newly-diagnosed "club members"
A LOT of information for you...

First and foremost - YOUR CANCER 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!!!

I know this is a ton of rambling opinion. Some may be useful, some may not. 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!

Thank You!
Doug, Wow, I don't know what to say...I so appreciate all of the info you have provided and the stages you described are right on the money...we are definitely in phase 1/2 and have some highs and lots of lows which occur when it is quiet and there are no distractions. My wife keeps asking why can't we get any more info and why does it seem there is no sense of urgency? (which I now understand can actually be in my favor). I am on a cancellation list for exploratory surgery and a tonsilectomy that may occur within the next 2 weeks? I also recieved a name of a great Dr for a 2nd opinion and spent the day getting copies of my biopsy patholgy and ct reports. The image files I have to request seperately which I will do tomorrow and try to schedule 2nd opinion. All of your info is really helpful to me and does help to ease my and my wife's mind so again thank you for that.
I will check out your link at caring bridge. We had a relative suggest that site also and I would like a place to keep a journal of sorts.

Thanks again for the time you spent to give me so much helpful info. I truly appreciate it.

Ron & Robyn Adams

Greg53

greg from pa said:

Hi Ron,
Sorry about your current diagnosis.I am glad you found your way here. My name is Greg, I discovered a lump on the left side of my neck last Febuary.After some exams and a biopsy I was diagnosed with cancer to more than two lymph nodes in early April. The cancer suergeon ordered a pet scan and a CT. From the scans He determined the primary was in the tonsils.He was going to do a modified radical neck dissection, and ordered the tonsils to be removed by an ENT specialist.My wife works at a hospital and had a great ENT in mind.who also specializes in cancer. He studied the scans and determined that the primary did not appear to be in the tonsils but rather on the base of the tounge.He advised against the dissection and did a thourough exam under anesthesia. He took a biopsy on the base of the tounge and determined that the cancer was HPV related. With that he advised that I not get any further surgery. He wanted to try chemo and radiation. after 7 weeks of radiation 5 days a week,and 6 chemo sessions my treatment was complete. incidentally the lymph node swelling went down after the first treatment! After 3 months I had another PET scan and It came back clear! no evidince of cancer. That was the first week of December. I am very gratefull to God and my docters.Particularly My ENT DR Brian Flowers of york PA. He literally saved my neck. The treatment was easy the first 5 weeks , It was little difficult toward the end, but it was worth it.some say Head and neck cancer treatment is one of the tougher to go thru, but it is one the most curable. Head and neck cancer is not a death sentence. I was scared the fi8rst couple months ,but the fear turned into faith.The cancer ultimately let me know where I stand in life ,that I can savor every day and live it as a gift. I hope you stay in touch on this board, Greg

Ron
Ron,

Sorry you have to be here, but glad you found us. You've got tons of info already so all I have to say is welcome and hope you keep posting. Hang in there! You've got a lot of folks here who REALLY care!

Positive thoughts headed your way!
Greg

debbieg5

Bigfuzzydoug said:

Some thoughts I once posted for newly-diagnosed "club members"
A LOT of information for you...

First and foremost - YOUR CANCER 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!!!

I know this is a ton of rambling opinion. Some may be useful, some may not. 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!

Great summary
Wow...that was a super summary. And very uplifting! I think I will cut and paste parts of that and email to my hubby. He is at the opposite end of the spectrum of "positive thinking".
Debbie

davidgskinner

hi Ron
My beginning experiences with this whole cancer business were a lot like yours. Lots of uncertainty and fear. For what it's worth, I have the same HMO as you do, and likely saw a few of the same docs you will be going to see. I have been pretty satisfied with how I was cared for, but the initial wait was the absolute worst. And the lump on my neck just kept growing and freaking me out. In the end, the treatments (chemo.radiation) shrunk it down, although I did have surgery 6 months later to remove what was left. I am considered cancer free today, although I still get checked monthly and have a couple side effects that bring to the doctor a lot.
Also, for what it is worth, I have pretty direct knowledge of a couple family members/friends who are currently dealing with another local "famous" hospital group (you can guess the name) who have not been treated nearly as quickly and proactively as I was. Their waits were even longer and required a lot of telephone time. And, as it turns out the doctors of the two groups consult with one another regularly on the best ways to treat this.
What I am trying to say is, as annoying and frustrating and scary as it is, you can get through it and in my opinion you are in pretty good hands.
I live close by, get in touch if you feel like it.
And eat like crazy during the holidays!

Ron49

DJG1 said:

Many Been There
Hello Ron,
Sorry you to hear of your news, but glad you found this site. There is a lot of information 1st hand from patients that have the same thing you speak about. I was diagnosed in April 2010 with SCC cancer, stage 3. The primary was in my right tonsil, and had spread to two lymp nodes in my right side. Had three teeth extracted and a partial neck dession in Aug 10, removed tonsils and 4 lump nodes. Started radiation treatment middle of Sept and finished about 5 weeks go. My advise to you is to ask questions before you proceed with treatment and feel comfortable with the doctors and treatment plan. It could be the most difficult thing you have done, but it is doable. Getting a 2nd or 3rd opinion is suggested. You will find on this site, there is a variety of treatment, some surgery, radiation, chemo, some have all, some have one or two of the options. Everyone reacts differently to each treatment, so make sure you are comfortable with the treatment plan you choose. Are you HPV+? If you do not know, ask you ent to test. I was negative, my was beleived to be tobacco related. If you have any specific questions, please feel free to ask.
Debbie

Thanks so much Debbie for
Thanks so much Debbie for taking the time to reply to me. I am amazed at the responses I received and overwhelmed by it. I had heard from a friend this was the case. I so appreciate all of the advice. We talked about a 2nd opinion but are not sure what our options are as we are with Kaiser. We are going to make some calls tomorrow. I feel like it is a time bomb in my neck and I want it out but Dr said he thinks it may be too large for surgery already. That is why we started talking 2nd opinion. I originally thought the cancer may have come from my left tonsil but now I am not sure. I was a cigerette smoker for years and also cigars until a year ago.

Thanks again for your response, it is so helpful to talk to others!
Ron

Ron49

davidgskinner said:

hi Ron
My beginning experiences with this whole cancer business were a lot like yours. Lots of uncertainty and fear. For what it's worth, I have the same HMO as you do, and likely saw a few of the same docs you will be going to see. I have been pretty satisfied with how I was cared for, but the initial wait was the absolute worst. And the lump on my neck just kept growing and freaking me out. In the end, the treatments (chemo.radiation) shrunk it down, although I did have surgery 6 months later to remove what was left. I am considered cancer free today, although I still get checked monthly and have a couple side effects that bring to the doctor a lot.
Also, for what it is worth, I have pretty direct knowledge of a couple family members/friends who are currently dealing with another local "famous" hospital group (you can guess the name) who have not been treated nearly as quickly and proactively as I was. Their waits were even longer and required a lot of telephone time. And, as it turns out the doctors of the two groups consult with one another regularly on the best ways to treat this.
What I am trying to say is, as annoying and frustrating and scary as it is, you can get through it and in my opinion you are in pretty good hands.
I live close by, get in touch if you feel like it.
And eat like crazy during the holidays!

David,
Thanks for the info,
David,
Thanks for the info, it helps to hear from someone we know has dealt with the same situation and hmo. The lump is starting to be uncomfortable and is freaking me out. I will get in touch after the holidays as both robyn and I have some questions for you. BTW so happy to hear you are cancer free, this also gives me hope. Enjoy your holidays. Ron

Rayarno

Ron49 said:

David,
Thanks for the info,
David,
Thanks for the info, it helps to hear from someone we know has dealt with the same situation and hmo. The lump is starting to be uncomfortable and is freaking me out. I will get in touch after the holidays as both robyn and I have some questions for you. BTW so happy to hear you are cancer free, this also gives me hope. Enjoy your holidays. Ron

This too shall pass
Ron, God Bless you and God heal you like he has done for us all here. I finished my treatments 4 months ago (stage 4, right tonsil spread to nodes, etc). Keep hydrated during treatments, keep up nutrician, stay positive. The time of your treatments will pass by faster than you will think.

Ray rarnold@vvainc.com

Hondo

Rayarno said:

This too shall pass
Ron, God Bless you and God heal you like he has done for us all here. I finished my treatments 4 months ago (stage 4, right tonsil spread to nodes, etc). Keep hydrated during treatments, keep up nutrician, stay positive. The time of your treatments will pass by faster than you will think.

Ray rarnold@vvainc.com

Hi Ray
Welcome to CSN glad to hear you have passed the finish line and doing well.

Hondo

josh r.

Ron49 said:

David,
Thanks for the info,
David,
Thanks for the info, it helps to hear from someone we know has dealt with the same situation and hmo. The lump is starting to be uncomfortable and is freaking me out. I will get in touch after the holidays as both robyn and I have some questions for you. BTW so happy to hear you are cancer free, this also gives me hope. Enjoy your holidays. Ron

Keep the Faith
Ron,
You have received wonderful info and encouragement from very knowledgeable "club members". I too discovered a golfball size lump on the left side of my neck on July 11th. I began treatment with radiation-chemo on July 28th and finished up on November 22nd. This was in 1991 and I am still going strong. It's worth the fight and you know you have a whole army of brothers and sisters on your side. God Bless, Josh r.

Irishgypsie

josh r. said:

Keep the Faith
Ron,
You have received wonderful info and encouragement from very knowledgeable "club members". I too discovered a golfball size lump on the left side of my neck on July 11th. I began treatment with radiation-chemo on July 28th and finished up on November 22nd. This was in 1991 and I am still going strong. It's worth the fight and you know you have a whole army of brothers and sisters on your side. God Bless, Josh r.

Interesting!!!!
Josh Jr., I have to say that from all the web surfing and checking sites here and on the oral cancer foundation; you may be the longest survivor I've came across!!! Almost 20 years that's awesome!!!

Charles

josh r.

Irishgypsie said:

Interesting!!!!
Josh Jr., I have to say that from all the web surfing and checking sites here and on the oral cancer foundation; you may be the longest survivor I've came across!!! Almost 20 years that's awesome!!!

Charles

Awesome!!!
Hi Charles,
I agree that my good forture, longevity after treament, is awesome. My ent wanted to do surgery but my onc-hemotologist strongly suggested a relatively, at that time, rad-chemo combination of high intensity. So far so good. Second and third opinions are so important even if you end up back at the original suggestion. At least you feel involved in your future. I am so glad that I ran across csn to possibly give hope and encouragement to brothers and sisters that are going through what I've been through. As trite as it sounds you have got to picture the soldiers that are being pumped into you and "lazer beams" they are shooting into you are kicking butt on the bad guys. I still visualize it and believe it. Never give up and God Bless, josh r.