PROBABLE STAGE 4 TONGUE CANCER
Comments
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AWESOMESASH said: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.
So glad to hear your long term health is good. Did you have Mets to the Lymph Nodes?
Mike0 -
Metsluv4lacrosse said:AWESOME
So glad to hear your long term health is good. Did you have Mets to the Lymph Nodes?
Mike
No mets to the nodes. Tumor was classified stage 4 because of the size. Tumor was in entire tongue except maybe .5 inches at the time. Tongue was about .75 inches thick because of the tumor, was wider than my teeth, and at one point was in front of my teeth all because of the tumor.0 -
treatment for me and my tongue cancerSASH said:Mets
No mets to the nodes. Tumor was classified stage 4 because of the size. Tumor was in entire tongue except maybe .5 inches at the time. Tongue was about .75 inches thick because of the tumor, was wider than my teeth, and at one point was in front of my teeth all because of the tumor.
Hi LL
Just want to update you that I was diagnosed with stage 2.5 base of tongue cancer with 2 lymph nodes where the cancer spread. I was given the IMRT radiation for 33 visits and took chemo at the same time. I am 3 months post treatment now and doing well. I still have some healing to do, but all in all the tongue is not swollen and my first PET scan showed all areas reduced significantly but they need to wait 90 days for the next one as I still have a lot of radiation in my system. Let us all know what your treatment plan is and we will give you the good/bad of the treatments and what to do to feel better. There is a light at the end of the tunnel, but get you mind around that this is a long term fix, 6-12 months really. you need a great deal of patience and a lot of prayers from friends and relatives. It all helps.
Best of luck
Steve0 -
I found that we are not cancer specialists. My Radiation Nurse said that things are changing so rapidly that what you read from last week has changed today. Stop diagnosing yourself and stay on this site and get an idea of what people experienced and how to handle the side effects of the treatment. We are all emphathetic towards you, are and have experienced what you are going to experience. We are here to help you and share with you. I played Doctor for a while, and found that this site is much better for me in handling the cancer. I find so much more comfort here, rather than trying to calculate if I am going to pass away or not. Live for today for your, your loved ones and us.0
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TREATMENT ADVICEhawk711 said:treatment for me and my tongue cancer
Hi LL
Just want to update you that I was diagnosed with stage 2.5 base of tongue cancer with 2 lymph nodes where the cancer spread. I was given the IMRT radiation for 33 visits and took chemo at the same time. I am 3 months post treatment now and doing well. I still have some healing to do, but all in all the tongue is not swollen and my first PET scan showed all areas reduced significantly but they need to wait 90 days for the next one as I still have a lot of radiation in my system. Let us all know what your treatment plan is and we will give you the good/bad of the treatments and what to do to feel better. There is a light at the end of the tunnel, but get you mind around that this is a long term fix, 6-12 months really. you need a great deal of patience and a lot of prayers from friends and relatives. It all helps.
Best of luck
Steve
Hawk, thanks much for the advice. I had my first visit with my ENT Oncologist yesterday. It went very well and with their team approach, I feel very comfortable. My Doc. sits on the advisory board and all new diagnoses are reviewed by a group of professionals and discussed to insure the diagnosois is agreed upon and the plan going forward. I had my Lymph Node re biopsied and it was confirmed for Squamous Cell. My Doc is keeping me as an unknown primary until he sends me to the OR for a look and actual tissue sample.
I get my PET Scan today at 12:30 and will have those results later today.
All in all, I fell pretty good today.
Will keep the site posted.
Mike0 -
I agree with you 100%. Since I have found this site with all of these wonderfull genuine folks, I have not googled anything else since. I just posted to Hawk where I am currently. Once I get the results of my PET Scan later today, I will post all of the latest info. I have.finz2lft said:I found that we are not cancer specialists. My Radiation Nurse said that things are changing so rapidly that what you read from last week has changed today. Stop diagnosing yourself and stay on this site and get an idea of what people experienced and how to handle the side effects of the treatment. We are all emphathetic towards you, are and have experienced what you are going to experience. We are here to help you and share with you. I played Doctor for a while, and found that this site is much better for me in handling the cancer. I find so much more comfort here, rather than trying to calculate if I am going to pass away or not. Live for today for your, your loved ones and us.
My best to all!!
Mike0 -
Sending Positive Vibes Your Wayluv4lacrosse said:TREATMENT ADVICE
Hawk, thanks much for the advice. I had my first visit with my ENT Oncologist yesterday. It went very well and with their team approach, I feel very comfortable. My Doc. sits on the advisory board and all new diagnoses are reviewed by a group of professionals and discussed to insure the diagnosois is agreed upon and the plan going forward. I had my Lymph Node re biopsied and it was confirmed for Squamous Cell. My Doc is keeping me as an unknown primary until he sends me to the OR for a look and actual tissue sample.
I get my PET Scan today at 12:30 and will have those results later today.
All in all, I fell pretty good today.
Will keep the site posted.
Mike
Hope you bring us good news later, Mike.0 -
The oral Cancer Foundation!luv4lacrosse said:I agree with you 100%. Since I have found this site with all of these wonderfull genuine folks, I have not googled anything else since. I just posted to Hawk where I am currently. Once I get the results of my PET Scan later today, I will post all of the latest info. I have.
My best to all!!
Mike
Hi, Sorry to hear about your new diagnosis. As you have realized this is a great place for support and information. Though it sucks it helps realize that u are not alone and that u will get through this. I am about 8 days post treatment for stage 4 tonsil. U just have to take one day at a time and be prepared for the hardest marathon of your life! u/we will get through this!!
P.S. There is also the Oral cancer Foundation blog; but I like this one better it allows us to post pics of ourselves; I think it adds a more friendly touch!
Charles0 -
GOOD NEWSPam M said:Sending Positive Vibes Your Way
Hope you bring us good news later, Mike.
My Doc called me last night with the results of my PET Scan. BOT is confirmed as the primary and is about 2 CM. Mets to the Right Lymph and some Superclavicular nodes also. NO OTHER SPREAD ANYWHERE!!
I am to have some pre testing next week and on the 21st I will have the BOT biopsied and he will see if he can use the robot for surgery VS going in by hand. The Robot he says is not invasive and will speed up my healing process. Worst case he goes in by hand and it takes allot longer to heal. Radiation and chemo to start about 6 weeks after a hopefully successfull surgery.
I want to PERSONALLY THANK everyone who so kindly communicated with me as you have made this situation a hell of allot easier to deal with. God Bless you all!!
An extra shout out goes to my "homie" Greg 53.
Best!!
Mike0 -
BOT with nodes, tooluv4lacrosse said:GOOD NEWS
My Doc called me last night with the results of my PET Scan. BOT is confirmed as the primary and is about 2 CM. Mets to the Right Lymph and some Superclavicular nodes also. NO OTHER SPREAD ANYWHERE!!
I am to have some pre testing next week and on the 21st I will have the BOT biopsied and he will see if he can use the robot for surgery VS going in by hand. The Robot he says is not invasive and will speed up my healing process. Worst case he goes in by hand and it takes allot longer to heal. Radiation and chemo to start about 6 weeks after a hopefully successfull surgery.
I want to PERSONALLY THANK everyone who so kindly communicated with me as you have made this situation a hell of allot easier to deal with. God Bless you all!!
An extra shout out goes to my "homie" Greg 53.
Best!!
Mike
Mike,
Glad to hear you've got the primary pinpointed. Now to the fight!
I WAS BOT with 2 nodes. Induction Chemo, then chemo rads. Doc considers me in remission now (got the word one week ago). With your attitude, and the extra surgery weapon in your arsenal, you've surely got what you need to win this war. Do it. Keep us updated.
Be well,
Pam0 -
Sorry - Double Postluv4lacrosse said:GOOD NEWS
My Doc called me last night with the results of my PET Scan. BOT is confirmed as the primary and is about 2 CM. Mets to the Right Lymph and some Superclavicular nodes also. NO OTHER SPREAD ANYWHERE!!
I am to have some pre testing next week and on the 21st I will have the BOT biopsied and he will see if he can use the robot for surgery VS going in by hand. The Robot he says is not invasive and will speed up my healing process. Worst case he goes in by hand and it takes allot longer to heal. Radiation and chemo to start about 6 weeks after a hopefully successfull surgery.
I want to PERSONALLY THANK everyone who so kindly communicated with me as you have made this situation a hell of allot easier to deal with. God Bless you all!!
An extra shout out goes to my "homie" Greg 53.
Best!!
Mike
Be Well0 -
BOT WITH NODES TOOPam M said:BOT with nodes, too
Mike,
Glad to hear you've got the primary pinpointed. Now to the fight!
I WAS BOT with 2 nodes. Induction Chemo, then chemo rads. Doc considers me in remission now (got the word one week ago). With your attitude, and the extra surgery weapon in your arsenal, you've surely got what you need to win this war. Do it. Keep us updated.
Be well,
Pam
Nice to hear from you and so good you are in remission. Makes my day, you must feel great about that.
I am fortunate that there are 2 very good Cancer Centers in St. Louis, Siteman where I am going and Spratt Cancer center too.
I am going forward with the surgery first.
TO ALL NEWCOMERS TO THIS SITE, USE IT AND COMMUNICATE WITH EACH OTHER. I HAVE BEEN HERE ONLY ABOUT A WEEK AND WHAT IT HAS DONE FOR MY SANITY IS AWESOME.
Best
Mike0 -
Great AttitudeIrishgypsie said:The oral Cancer Foundation!
Hi, Sorry to hear about your new diagnosis. As you have realized this is a great place for support and information. Though it sucks it helps realize that u are not alone and that u will get through this. I am about 8 days post treatment for stage 4 tonsil. U just have to take one day at a time and be prepared for the hardest marathon of your life! u/we will get through this!! P.S. There is also the Oral cancer Foundation blog; but I like this one better it allows us to post pics of ourselves; I think it adds a more friendly touch!
Charles
Mike,
Sounds like your attitude is great. Good for you. My opinion that's half the battle. Glad to hear it hasn't spread. Had similar diagnosis on robot versus hand surgery. I had 11 nodes, 10 on right and 1 on left. Due to how close they were to jugular, ENT did surgery by hand. Turned out good and no issues from that.
Keep the faith, man. And nothin' can beat a couple of tough North County boyz, even this c-stuff.
Hang tough!
Greg0 -
Welcomeluv4lacrosse said:BOT WITH NODES TOO
Nice to hear from you and so good you are in remission. Makes my day, you must feel great about that.
I am fortunate that there are 2 very good Cancer Centers in St. Louis, Siteman where I am going and Spratt Cancer center too.
I am going forward with the surgery first.
TO ALL NEWCOMERS TO THIS SITE, USE IT AND COMMUNICATE WITH EACH OTHER. I HAVE BEEN HERE ONLY ABOUT A WEEK AND WHAT IT HAS DONE FOR MY SANITY IS AWESOME.
Best
Mike
Mike, sorry to hear about your troubles but as a newbie I can tell you that you have come to the right place. I was diagnosed with BOT and Tonsil C on April of 09 and I live in rural So. Missouri. Unfortunately my ENT decided the only that could be done for me was surgery. So after he performed 4 surgeries with no result but the tumor growing back more rapidly than before he sent me to Barnes Jewish in St. Louis where they did the same thing. So I found this site where everyone was so helpful and ended up in Tulsa where I just finished 20 rads, had a feeding tube placed, a port put in and am now home until Aug. 2. If it wasn't for the people here I would still just be going thru the motions with surgery after surgery. Siteman wasn't covered under my insurance so couldn't go there but hear they are great. You will beat this. You PET showed it was still confined. That is good news. Unfortunately I have some spots in my stomach that showed on my PET that I will be dealing with also. This site is awesome and so are the people. Best of luck and keep everyone posted.
Debbie0 -
LYMPH NODE GROWTH
Is it common for my enlarged Lymph Nodes in my neck to almost double in size in less than a week? I did have a second needle biopsy last Thursday. I wonder if this is more swelling VS growth.
My Doc. is out of the country this week and I have a call into the Doc. that is covering for him.
My worry is that it is spreading0 -
BOT squamous cell and lymph nodesluv4lacrosse said:LYMPH NODE GROWTH
Is it common for my enlarged Lymph Nodes in my neck to almost double in size in less than a week? I did have a second needle biopsy last Thursday. I wonder if this is more swelling VS growth.
My Doc. is out of the country this week and I have a call into the Doc. that is covering for him.
My worry is that it is spreading
My husband has been diagnosed with BOT cancer and when the lymph nodes began to swell (our first indication something was amiss) the second group of lymph nodes at the base of his neck swelled to about ping-pong size almost overnight. Don't know why.
His treatment regimen does not include surgery. He has a tumor (3 cm x 4cm) that was isolated except for the lymph nodes. He has had 2 big doses of chemo- 3 weeks apart- + 5FU given 24-7 by a pump at home. The port-a-cath has been great for this. After the chemo and he has regained some strength he will get radiation/chemo combo for 7 weeks, with radiation every day and chemo weekly. He ended up hospitalized because of diarrhea from C-Dif infection which was probably contracted when his white count dropped so low. He's still quite weak and anemic. They put in a PEG so he'll start getting nourishment- his appetite just isn't there any more. The good news is that after the first 2 treatments and the pump (4 weeks) the ENT scoped his throat and the tumor is gone! At least, not visible. The radiation/chemo is to prevent recurrence.0 -
Hope
Dear LaCrosse, Are you from LaCrosse, WI. or do you like the game? I'm from LaCrosse WI.
Hi, I'm hoping I can share some things to help you feel better. Do you believe in alternative therapy at all? Stop eating sugar right away, as cancer feeds on sugar. You discover this the first time they give you a PET scan. The injected glucose goes to the cancer cells first. What helped me was going on a greens only diet, I have a Vita-mixer, but you can also buy green drinks dehydrated online, look for ones with organic spirulina.
Are you a Bible reader? I needed answers to my questions like "Why does a loving God allow people to suffer?" and "If I should die, what would I experience?" "What is the hope for people who have died?" Have you ever asked any of these questions?
Can I leave you with my favorite verse in the Bible? It's at Revelation 21:4&5 "And he will wipe out every tear from their eyes and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away." "And the one seated on the throne said "Look!, I am making all things new, also he said write because these words are faithful and true."
If you are interested in alternative treatments, I have some web sites you may want to look at. Hope to hear from you, sincerely Susan0 -
GREAT TO HEARbrendamurphy said:BOT squamous cell and lymph nodes
My husband has been diagnosed with BOT cancer and when the lymph nodes began to swell (our first indication something was amiss) the second group of lymph nodes at the base of his neck swelled to about ping-pong size almost overnight. Don't know why.
His treatment regimen does not include surgery. He has a tumor (3 cm x 4cm) that was isolated except for the lymph nodes. He has had 2 big doses of chemo- 3 weeks apart- + 5FU given 24-7 by a pump at home. The port-a-cath has been great for this. After the chemo and he has regained some strength he will get radiation/chemo combo for 7 weeks, with radiation every day and chemo weekly. He ended up hospitalized because of diarrhea from C-Dif infection which was probably contracted when his white count dropped so low. He's still quite weak and anemic. They put in a PEG so he'll start getting nourishment- his appetite just isn't there any more. The good news is that after the first 2 treatments and the pump (4 weeks) the ENT scoped his throat and the tumor is gone! At least, not visible. The radiation/chemo is to prevent recurrence.
Brenda,that is great news for you and your husband. I have elected to have surgery first then Rad / Chemo. I still have to ave the primary site (BOT) biopsied and the surgeion is going to see if there is room to use the Robotic Surgical Equipment. Doc says this is way less invasive.
Best!!
Mike0 -
ALT THERAPYsusan smiles said:Hope
Dear LaCrosse, Are you from LaCrosse, WI. or do you like the game? I'm from LaCrosse WI.
Hi, I'm hoping I can share some things to help you feel better. Do you believe in alternative therapy at all? Stop eating sugar right away, as cancer feeds on sugar. You discover this the first time they give you a PET scan. The injected glucose goes to the cancer cells first. What helped me was going on a greens only diet, I have a Vita-mixer, but you can also buy green drinks dehydrated online, look for ones with organic spirulina.
Are you a Bible reader? I needed answers to my questions like "Why does a loving God allow people to suffer?" and "If I should die, what would I experience?" "What is the hope for people who have died?" Have you ever asked any of these questions?
Can I leave you with my favorite verse in the Bible? It's at Revelation 21:4&5 "And he will wipe out every tear from their eyes and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away." "And the one seated on the throne said "Look!, I am making all things new, also he said write because these words are faithful and true."
If you are interested in alternative treatments, I have some web sites you may want to look at. Hope to hear from you, sincerely Susan
Susan, thanks for the reply. My kids play Lacrosse. I live in STL.
As far as Alternative Therapy goes, I am not at all familiar with it, so at this time I have no opinion.
I feel very well about my medical plan going forward as I am being seen through one of the better facilities in the country.
As far as diet goes, I do pretty well and have most of my life. I have never smoked, but have decided to either stop all alchohol consumption or limit it to only weekend family activities. Before I was diagnosed I would have a few cocktails every evening after work. Those days are over.
Best to you and your Husband.
Mike0
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