PROBABLE STAGE 4 TONGUE CANCER
Comments
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Good News
Hi luv,
First, sorry about your diagnosis, and glad that you found your way here. I was a little different as I had stage 4 tonsil cancer with mets to lymph nodes. The good news is there are many people here that have or have had exactly what you have and they are doing fine surviving many years. So keep your chin up and keep posting here and the folks here will answer your questions. I am 3 months out of treatment and I am doing great. You can beat this!!!
Best,
Steve0 -
GOOD NEWSstevenl said:Good News
Hi luv,
First, sorry about your diagnosis, and glad that you found your way here. I was a little different as I had stage 4 tonsil cancer with mets to lymph nodes. The good news is there are many people here that have or have had exactly what you have and they are doing fine surviving many years. So keep your chin up and keep posting here and the folks here will answer your questions. I am 3 months out of treatment and I am doing great. You can beat this!!!
Best,
Steve
Thanks for the positive comments. Looking at your photo, we appear to be of simillar age. (46?) The waiting time to see the Oncologist sucks. Very glad to hear you are doing so well so soon after treatment.
God Bless my friend.
Mike0 -
Googled Out
Hello luv4lacrosse, I know exactly how you feel about googling. Keep googling and you can prepare to be assimilated because the mountain of information is too much to process. This place, and these people will help you distill the facts and options. I'm sorry to hear you have to face this, but everyone here has done the same, or has helped those who are facing it. Most were stage 4, me too, it's too often at that level when discovered. Take a big breath and let the chill leave your chest. You're headed for treatment, and on the road to recovery. It's starts with diagnosis and a treatment plan, and the oncologist on Thursday is your start point. Come here with specific questions, support, and to vent. For now I imagine apprehension is your biggest concern, but you're now moving forward and if you love lacrosse, you know the ball can move fast, so be ready for a busy schedule that can lead you back to health.
keep posting, best
Hal0 -
Stay clear of "general" information.Hal61 said:Googled Out
Hello luv4lacrosse, I know exactly how you feel about googling. Keep googling and you can prepare to be assimilated because the mountain of information is too much to process. This place, and these people will help you distill the facts and options. I'm sorry to hear you have to face this, but everyone here has done the same, or has helped those who are facing it. Most were stage 4, me too, it's too often at that level when discovered. Take a big breath and let the chill leave your chest. You're headed for treatment, and on the road to recovery. It's starts with diagnosis and a treatment plan, and the oncologist on Thursday is your start point. Come here with specific questions, support, and to vent. For now I imagine apprehension is your biggest concern, but you're now moving forward and if you love lacrosse, you know the ball can move fast, so be ready for a busy schedule that can lead you back to health.
keep posting, best
Hal
I am very sorry to hear that you have found yourself on this sight...but I have to tell you in gets your head in a better place than any of those other sites you have been on. And the only informtion/numbers you should pay attention to are yours. What you are reading on the internet is research that has nothing to do with your situation. It is a collection of hundreds of people's situations with the same diagnosis averaged together. Go through your diagnostic process, educate yourself (here is best, I think), and be an active part of planning your treatment. I highly recommend a cancer hospital if you are near one (and 100 miles is close). Make the effort to travel for the best care. Work with an ENT who specializes in head and neck cancers. A general ENT will say he/she can treat you, but remember he/she is also taking out kids' tonsils.
My partner, Mark, is the one diagnosed with SCC tonsil Stage IV. I beleive whole heartedly, where we picked for him to be treated makes all the difference in the world. His determination, attitude, and general good health are major factors too.
Best of luck to you. Use the knowledge that exists here. These folks know because they have been there.
Kim0 -
GOOGLED OUTHal61 said:Googled Out
Hello luv4lacrosse, I know exactly how you feel about googling. Keep googling and you can prepare to be assimilated because the mountain of information is too much to process. This place, and these people will help you distill the facts and options. I'm sorry to hear you have to face this, but everyone here has done the same, or has helped those who are facing it. Most were stage 4, me too, it's too often at that level when discovered. Take a big breath and let the chill leave your chest. You're headed for treatment, and on the road to recovery. It's starts with diagnosis and a treatment plan, and the oncologist on Thursday is your start point. Come here with specific questions, support, and to vent. For now I imagine apprehension is your biggest concern, but you're now moving forward and if you love lacrosse, you know the ball can move fast, so be ready for a busy schedule that can lead you back to health.
keep posting, best
Hal
Thanks a bunch Hal. I am definitely looking forward to Thursday's Appt. I will share my visit with others here.
Mike0 -
base of tounge primary
Hi, I am glad you found this ite.I too have been diagnosed with base of tounge primary c with metastisis to 3 or more lymph nodes.It took 10 weeks from diagnosis to get into radiation and chemo.There were 2 biopsys,peg tube insert and port insert but now finally I am in treatment.I too spent to much time on those other sites and they did nothing but bring me down.base of tounge c can be very treatable ,particularly if you were a non smoker with a hpv + diagnosis on the biopsy.I am a newcomer on this site but I can tell you there are some terrific people on here. Draw from their experience and support.Best wishes. PA greg0 -
GENERAL INFOKimba1505 said:Stay clear of "general" information.
I am very sorry to hear that you have found yourself on this sight...but I have to tell you in gets your head in a better place than any of those other sites you have been on. And the only informtion/numbers you should pay attention to are yours. What you are reading on the internet is research that has nothing to do with your situation. It is a collection of hundreds of people's situations with the same diagnosis averaged together. Go through your diagnostic process, educate yourself (here is best, I think), and be an active part of planning your treatment. I highly recommend a cancer hospital if you are near one (and 100 miles is close). Make the effort to travel for the best care. Work with an ENT who specializes in head and neck cancers. A general ENT will say he/she can treat you, but remember he/she is also taking out kids' tonsils.
My partner, Mark, is the one diagnosed with SCC tonsil Stage IV. I beleive whole heartedly, where we picked for him to be treated makes all the difference in the world. His determination, attitude, and general good health are major factors too.
Best of luck to you. Use the knowledge that exists here. These folks know because they have been there.
Kim
Kim, thanks for the reply back. I cannot wait for my Appt. on Thursday. I am being seen at the only facility in Missouri that is certified by the NCI. Siteman Cancer Center through Barnes Jewish Hospital in St. Louis. The Doctor specializes in Head and Neck Cancer.
I will continue to post info. on this site as I feel comfortable here.
All my best to Mark in his recovery.
Mike0 -
BOT Primarygreg from pa said:base of tounge primary
Hi, I am glad you found this ite.I too have been diagnosed with base of tounge primary c with metastisis to 3 or more lymph nodes.It took 10 weeks from diagnosis to get into radiation and chemo.There were 2 biopsys,peg tube insert and port insert but now finally I am in treatment.I too spent to much time on those other sites and they did nothing but bring me down.base of tounge c can be very treatable ,particularly if you were a non smoker with a hpv + diagnosis on the biopsy.I am a newcomer on this site but I can tell you there are some terrific people on here. Draw from their experience and support.Best wishes. PA greg
Thanks Greg for the reply. I have never smoked but am, (was) a regular drinker. What is the deal with the HPV+ I keep reading about?
Mike0 -
botluv4lacrosse said:BOT Primary
Thanks Greg for the reply. I have never smoked but am, (was) a regular drinker. What is the deal with the HPV+ I keep reading about?
Mike
I was schedulded to have a modified radical neck dissection in april. The surgeon that was to perform the procedure also wanted a tonsilectomy as he thought the primary was in my tonsils.The surgeon wanted an ENT to assist in the tonsilectomy.My wife works at a large hospital and had an ENT speialist in mind.We went to see him and he informed me that base of tounge primary c that tests positive for HPV respond very well to chemo and radiation. In my case he suggested a very good prognosis.after doing the biopsy and finding high risk HPV present.I was a pretty heavy drinker for alot of years,but I almost always just drank beer. I hope this helps Mike0 -
Welcome!
Hey Luv
We have just about the same diagnosis, BOT cancer with some lymph node involvement. I am at the mid point in my treatment, I get my 2nd of 3 chemo injections today and am at 17 of 35 rads. I haven't had too much difficulty so far, everything has been manageable. You've surely come to the right place for some excellent support. Question, you're 'luv' is for LaCrosse Wis or Lacrosse the sport? Cheers.0 -
Base of Tongue, Too
Mike,
Like the others, sorry you had reason to be Googling "cancer", glad you found this site. The people here have made a huge difference for me - so much useful info and support.
I was diagnosed late Oct. 2009 with Stage IV base of tongue cancer. It had spread to two lymph nodes, one very large, one slightly enlarged. I finished treatment March 16, 2010. Last Friday, my doctor said he would consider me to be in remission. Of the three "hot spots", only one now shows any metabolic activity (the smaller lymph node), and even that activity is considered to be in the "normal" range.
Like you, I nearly Googled myself into a state of despair, becoming obsessed with some "doom and gloom" findings. This site exposed me to real people (not statistics). It raised my hopes, and gave me extra tools for my cancer-fighting arsenal.
Many things treatment-wise weren't as bad as I'd imagined they would be. Of course, we also have that "continuing to live" incentive . . .
Good luck Thursday. Take notes, take a friend, ask questions, have the friend ask questions. Write down a list of questions before you go - refer to the list, don't assume you'll remember on your own. When you have a game plan, let us know. Whatever your protocol will be, chances are there are multiple people here who did the same treatment, and are here to talk about it, and willing to help light your way.
Do well,
- Pam0 -
WelcomeJimbo55 said:Welcome!
Hey Luv
We have just about the same diagnosis, BOT cancer with some lymph node involvement. I am at the mid point in my treatment, I get my 2nd of 3 chemo injections today and am at 17 of 35 rads. I haven't had too much difficulty so far, everything has been manageable. You've surely come to the right place for some excellent support. Question, you're 'luv' is for LaCrosse Wis or Lacrosse the sport? Cheers.
And sorry you are here, of course, but you are most welcome to be here.
My C differs from yours, as a 20-month NPC survivor, so my help may be more limited than most others. You are in Missouri, and speak like your treatment options are minimal. A co-worker's step-dad had tongue C years ago, and was only treated with rads. Came to regret it- ended-up in Iowa City at the U of Iowa hospital, where he shoulda gone in the first place. Might be a long drive for you, but they do claim to be right there with the others at the top of H&N in America. My med team has direct ties to them, and (so far) they've done right by me. For your consideration.
Being where you are in the process, Mike, is not an easy place to be- but we have all been there. Googling sites like the ACS and NCI, and others of repute, is not a bad thing, but realize that they can only speak in terms of generality. It is good to be informed, but that which will not apply to you could be a bad kinda worthless info, if you let it get to you. You got H&N C, Mike, as do we all, past and present. This is 2010, and treatments are far advanced, compared to 10 or 15 years ago, as are the new meds used to help with issues. We've all battled, or are battling, C, and we're all still here, Mike. We are survivors, and you will be, too.
You start, Mike, with a little thought that you don't let go of- you NEVER let go of: I'M GONNA SURVIVE THIS BATTLE WITH C. Get used to it, Mike. We all have, and we all bear testimony to that battle having been worthwhile. All you gotta do is fight the best fight you can- your med team and support group, and the good Lord, will take care of the rest. I do ask you to stay involved with us- we are all here to help, but we need updates, and questions and concerns you have when they arise. And we are global- Jimbo's in Thailand, and Scam's in China, Tricia and Janymac in England, numerous in Canada, and Hawvet's in Hawaii. I'm in the Quad Cities, and GREG'S IN ST.LOUIS. And I reckon more than one of us has taken a road adjacent to the one you are about to take, and will give you some advice you need.
Believe
kcass
As for the man in paragraph #2: he's long been back to work as a contract plumber0 -
A little advice before treatmentPam M said:Base of Tongue, Too
Mike,
Like the others, sorry you had reason to be Googling "cancer", glad you found this site. The people here have made a huge difference for me - so much useful info and support.
I was diagnosed late Oct. 2009 with Stage IV base of tongue cancer. It had spread to two lymph nodes, one very large, one slightly enlarged. I finished treatment March 16, 2010. Last Friday, my doctor said he would consider me to be in remission. Of the three "hot spots", only one now shows any metabolic activity (the smaller lymph node), and even that activity is considered to be in the "normal" range.
Like you, I nearly Googled myself into a state of despair, becoming obsessed with some "doom and gloom" findings. This site exposed me to real people (not statistics). It raised my hopes, and gave me extra tools for my cancer-fighting arsenal.
Many things treatment-wise weren't as bad as I'd imagined they would be. Of course, we also have that "continuing to live" incentive . . .
Good luck Thursday. Take notes, take a friend, ask questions, have the friend ask questions. Write down a list of questions before you go - refer to the list, don't assume you'll remember on your own. When you have a game plan, let us know. Whatever your protocol will be, chances are there are multiple people here who did the same treatment, and are here to talk about it, and willing to help light your way.
Do well,
- Pam
My wife set up a bi-weekly e-mail notice of my progress to all friends and relatives. This kept the phone calls and the redundant messages down to a minimum. Most helpful when I could not talk.
Don't be afraid to eat as much as you can.
Keep a daily log during your treatment. It will come in handy for meds you take, good days/bad days, various changes in yor vital signs, great for developing questions for various physicians, and a great read a year from when treatment started.
Be sure and let neighbors, friends, and relatives help you out. They a willing to help, but not sure how. Tell them directly. Go to pharmacy for me.... take garbage can out....drive me to treatment....set morning paper by the door....come visit for an hour or so...etc..etc. I thought in the beginning that this was pretty presumptious of me, but found out much later that it was the best thing to do.
I'm sure others have tid bits of advice.
Larry0 -
Take Notes
Hi LL, Sorry to see you here but there a re some great people to help you through.
To recap some previous comments, as you are overloading with information, slow down and take a Pad and Pen' - and write down the critivcal information and or bits of information that are relevant - as you coem across it OR Print off pages off the net. Also keep a special page for QUESTIONS. This will help when you see you Doctor(s) as there is lot going on now and it's hard to remember it all.
You will soon have a good grip on all this. Normally we have 3 options of attack being 1. Surgery 2. Ratiotherapy and 3. Chemo of some type. I like another one which is 4. Nutrition. You can check my expressions page for more information on diet etc. The first 3 steps here can be started in any order depending on your case. Sometimes they suggest to have the RT and Chemo first to shrink the tumor, other times, surgery first, then chemo and RT to clean up what's left.
On the RT, if your clinic has it, IMRT (Intensity modulated Radio-Therapy) is said to a little better and more targeted with less collateral damage to surrounding tissue. The are bunch of Chemo dru in use. The Doctors will advise.
Let us know how things go at the Docs and again, take your note pad along to take a few notes.
Scambuster0 -
lacrosseJimbo55 said:Welcome!
Hey Luv
We have just about the same diagnosis, BOT cancer with some lymph node involvement. I am at the mid point in my treatment, I get my 2nd of 3 chemo injections today and am at 17 of 35 rads. I haven't had too much difficulty so far, everything has been manageable. You've surely come to the right place for some excellent support. Question, you're 'luv' is for LaCrosse Wis or Lacrosse the sport? Cheers.
Love for the sport. My 2 sons play and I am the president of our HS Team.
Glad to hear you are tolerating the treatment so well.
Mike0 -
Base of Tongue tooPam M said:Base of Tongue, Too
Mike,
Like the others, sorry you had reason to be Googling "cancer", glad you found this site. The people here have made a huge difference for me - so much useful info and support.
I was diagnosed late Oct. 2009 with Stage IV base of tongue cancer. It had spread to two lymph nodes, one very large, one slightly enlarged. I finished treatment March 16, 2010. Last Friday, my doctor said he would consider me to be in remission. Of the three "hot spots", only one now shows any metabolic activity (the smaller lymph node), and even that activity is considered to be in the "normal" range.
Like you, I nearly Googled myself into a state of despair, becoming obsessed with some "doom and gloom" findings. This site exposed me to real people (not statistics). It raised my hopes, and gave me extra tools for my cancer-fighting arsenal.
Many things treatment-wise weren't as bad as I'd imagined they would be. Of course, we also have that "continuing to live" incentive . . .
Good luck Thursday. Take notes, take a friend, ask questions, have the friend ask questions. Write down a list of questions before you go - refer to the list, don't assume you'll remember on your own. When you have a game plan, let us know. Whatever your protocol will be, chances are there are multiple people here who did the same treatment, and are here to talk about it, and willing to help light your way.
Do well,
- Pam
Thanks so much for sharing your story with me. I am lucky my wife is Director of Trauma at a hospital affiliated with the medical center. She has the ability to make things happen if she or I do not like what is taking place.
You are right about this site,I feel so much better today mentally, and can probably stay focused enough on work to actually get something done today.
I will post the results of tomorrows Oncology visit soon.
Best!!
Mike0 -
Take notesScambuster said:Take Notes
Hi LL, Sorry to see you here but there a re some great people to help you through.
To recap some previous comments, as you are overloading with information, slow down and take a Pad and Pen' - and write down the critivcal information and or bits of information that are relevant - as you coem across it OR Print off pages off the net. Also keep a special page for QUESTIONS. This will help when you see you Doctor(s) as there is lot going on now and it's hard to remember it all.
You will soon have a good grip on all this. Normally we have 3 options of attack being 1. Surgery 2. Ratiotherapy and 3. Chemo of some type. I like another one which is 4. Nutrition. You can check my expressions page for more information on diet etc. The first 3 steps here can be started in any order depending on your case. Sometimes they suggest to have the RT and Chemo first to shrink the tumor, other times, surgery first, then chemo and RT to clean up what's left.
On the RT, if your clinic has it, IMRT (Intensity modulated Radio-Therapy) is said to a little better and more targeted with less collateral damage to surrounding tissue. The are bunch of Chemo dru in use. The Doctors will advise.
Let us know how things go at the Docs and again, take your note pad along to take a few notes.
Scambuster
Thanks for the reply. One of the first things that crossed my mind was nutrition. I am a Power Lifter and do try to take good care of myself. I am assuming that the Whey Protien I already take is a good thing. I will probably lay off of some of the Pre Workout supps. until a professional tells me it's ok to take. I weight 235 lbs, not fat, bu stocky and muscular so I have some weight I can actually afford to lose if things get bad.
I will review your "expressions" page for more info.
Best!!
Mike0 -
Welcome Mikeluv4lacrosse said:Take notes
Thanks for the reply. One of the first things that crossed my mind was nutrition. I am a Power Lifter and do try to take good care of myself. I am assuming that the Whey Protien I already take is a good thing. I will probably lay off of some of the Pre Workout supps. until a professional tells me it's ok to take. I weight 235 lbs, not fat, bu stocky and muscular so I have some weight I can actually afford to lose if things get bad.
I will review your "expressions" page for more info.
Best!!
Mike
Mike,
Sorry you found yourself here, but welcome to our group. A better bunch of people would be very hard to find. As it was pointed by my friend the Cubbie Fan (Kent), I'm from St. Louis also. I would have sent you a note earlier, but just got back from out of town for the Holiday and just started looking at all the threads at lunch today.
I'm a little different in that I have stage 4, right tonsil SCC, mets to numerous nodes, diagnosed in January '10. I had tonsillectomy and rad neck dissection in Jan. followed by 7 weeks of concurrent rad/chemo. Treatments ended mid-April so I'm 3 months out and doing fairly well. You've already gotten a lot of good advice I see. My only advice for your visit is the same as others have pointed out: bring someone along if you can (2 heads better than one), write your questions down ahead of time and the only dumb question is the one you don't ask. Good luck tomorrow.
I'll be on the site later tonight and will pm you.
Good thoughts going to you and eveyone here!
Greg0 -
Stage 4 tongue cancer
I was stage 4 tongue cancer. Did the simultaneous radiation and chemo to shrink the tumor then surgery. The chemo and rads killed the tumor and what was thought would be required for surgery was just scar tissue not tumor. Treatments work. That was over 10 years ago and I've been NED ever since.0 -
WELCOME MIKEGreg53 said:Welcome Mike
Mike,
Sorry you found yourself here, but welcome to our group. A better bunch of people would be very hard to find. As it was pointed by my friend the Cubbie Fan (Kent), I'm from St. Louis also. I would have sent you a note earlier, but just got back from out of town for the Holiday and just started looking at all the threads at lunch today.
I'm a little different in that I have stage 4, right tonsil SCC, mets to numerous nodes, diagnosed in January '10. I had tonsillectomy and rad neck dissection in Jan. followed by 7 weeks of concurrent rad/chemo. Treatments ended mid-April so I'm 3 months out and doing fairly well. You've already gotten a lot of good advice I see. My only advice for your visit is the same as others have pointed out: bring someone along if you can (2 heads better than one), write your questions down ahead of time and the only dumb question is the one you don't ask. Good luck tomorrow.
I'll be on the site later tonight and will pm you.
Good thoughts going to you and eveyone here!
Greg
I am curious, did you receive your treatment through the Sitemena Cancer Center (BJC)?
That is the facility I am using. Have been told it is the only NCI certified facility in the state.
Look forward to hearing more form you. I live in Eureka.
Best!!
Mike0
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