Squamous cell carcinoma of right tonsil

luv_freedom

Found out that I have this just a few weeks ago. Still in the stages of setting things up as far as surgery and such. Said that I am a P16 positive. Apparantly that is a good thing according to them. Found a mass at the base of my tongue and apparrantly towards the right tonsil. Also a theyroid gland is a bit enlarged in the right side just under my jaw. Just had several appointments. One with the dental dept at the hospital. Told me that the chances are that I will receive radiation treatments and he said that he will remove 6 molars while I'm in surgery to remove that mass or tumor. They will also remove that theyroid gland while in surgery as well. Sceduled for 7/1/2015. Just had a PetScan done today to check for cancer anywhere else I'm told. To make things more difficult I am post liver transplant so I think chemo is out of the question. That leaves me with surgery and radiation treatment. The ENT surgeon thinks that he may be able to completly remove the cancer by surgery but I'm not pinnin my hopes on it. I'm 61 almost 62 and thought I was out of the woods with the new liver. I believe that the anti rejection drugs is what caused me to get this but not sure. I did smoke but quit 4 years ago. I read that there are cases that the medicine for immune suppression such as I take (Prograf) can cause this virus. So now I'm pretty depressed and thinking I'll never see 70. Never see my youngest granddaughter grow up who is 11 now. What a bummer! I thought that the liver transplant was a life changing event. Not even close to what this sounds like.

Gary

rcaulder

Hang on

Gary

     Don't give up before they even start treatment. I have had the tonsil CA, positive node DX for about a month now. I had the same thoughts, will never see my kids gratuate High school. They are 11 now. I worked through those thoghts. My fate is in Gods hands. He has power over all flesh. I am doing radiation and Erbitux. It is rough. My strength comes from my faith. I get weak, I then pray. A month ago I would of never expected I had cancer. Yes, your DX is tough. But be tougher than it. If you don't have the strength ask God for His. He wants you to have it.

 

phrannie51

Gary...I agree with the above...

Don't jump the gun with the "what if's"....There are many MANY people who were HPV P16 positive, but you are the first taking anti-rejection drugs that I can remember.  Chemo can be tough on the kidneys...hearing...neuropathy....but I haven't heard anything about it affecting the liver....so wait till you talk to your Dr. before you think you'll be pushing up daisys anytime soon. 

Want to welcome you to this great forum....most supportive on the internet....smart folks here to help you get through this.

p

wmc

Welcome to the H&N Group Gary

Welcome to the group and i'm sorry you need to be here. Yes HPV+ is a good thing as it responds much better to treatment. There is many that had BOT on here and can give you some answers and guidance. Mine was just above my vocal cords and pressing on the left one. I have severe COPD so I was told that I would not survive the surgery or radiation because of my lungs. Then I was told they can remove my larnyx and 86 lymph glands and have a stoma to breath out of. [Stoma is a perminate trach and a hole in your neck] Not much of a chose but let's do this. Before surgery I was T4; N2;M0; which is not the best but could be worse. It was an 8 hour surgery and they cut me from ear to ear, and did remove the cancer. They down graded it after surgery to T3; N0; M0 much better and put in a prosthesis so I can still talk. It is very life changing, but I still have my life to change and the outlook looks real good for me.

I would sugest you go to the Superthread which is on top and read only. It can anwser many questions and explain some terms used. When you go to the doctors take someone with you because the doctor will say something and you will go blank. If you have questions write them down and leave room for answers. I did and just handed it to him and he explained each question and wrote the answers down as well. You are scared, this is so normal. try to not do the Google Dr as you can get too many wrong sites and with wrong answers. Your team of doctors will decide what is best for YOU as an individuale, just you and all of your conditions.

This is going to be a very rough road you will be going down, but so many here have been down this same road before you and came through it. It's rough, there is no getting around that, but it is doable. So now what you need to do is decide, are you willing to fight this beast for yourself and your kids? If so you need to get a big attitude that you will do this and you will beat this. Never give up........ And above drink lots of water to keep swalling and stay hydrated. Dirnk drink drink. You can forget how to swallow, sounds crazy but it is very true. You will need to just take one day at a time, and on the really bad ones, go hour by hour and know you will beat this.

Remember you will not be alone in this, this is a support group and will be here for you. Were open 24/7 and just come and vent when you need, we do udrestand. Also thank your caregiver now because it it rough on them as well. They will feel your pain but can't do much but be there for you. You will lose some people you concidered as friends. Don't get upset as some people just can't handle a big illness. You will see who is there for you, and when the others ask how you doing, [they don't really want to know] so just say, we're doing ok. Don't know if you are religious or not but praying doesn't hurt ether. I will add you and your family to my prayer list.

Bill

avisemi

Gary,
I hope you feel better

Gary,

I hope you feel better today. You will probably have some bad days as yesterday, some good days, and others in between. Yes, it is horrible that just when you thought you were okay with the transplant, something else comes up. And yes, this would make you feel like giving up. So come here when you feel that way. Hopefully we can help you feel better! This journey is not easy, but you can do it and there are folks here to support you along the way. I was lucky to have folks tell me early on to take things one day at a time. Don't think about year from now, or even a week from now. Just focus on each day. This helped my husband and I a lot.

Good luck!

 

luv_freedom

rcaulder said:

Hang on

Gary

     Don't give up before they even start treatment. I have had the tonsil CA, positive node DX for about a month now. I had the same thoughts, will never see my kids gratuate High school. They are 11 now. I worked through those thoghts. My fate is in Gods hands. He has power over all flesh. I am doing radiation and Erbitux. It is rough. My strength comes from my faith. I get weak, I then pray. A month ago I would of never expected I had cancer. Yes, your DX is tough. But be tougher than it. If you don't have the strength ask God for His. He wants you to have it.

 

Thank you. Just a big shock when I thought I was over the worst.

luv_freedom

avisemi said:

Gary,
I hope you feel better

Gary,

I hope you feel better today. You will probably have some bad days as yesterday, some good days, and others in between. Yes, it is horrible that just when you thought you were okay with the transplant, something else comes up. And yes, this would make you feel like giving up. So come here when you feel that way. Hopefully we can help you feel better! This journey is not easy, but you can do it and there are folks here to support you along the way. I was lucky to have folks tell me early on to take things one day at a time. Don't think about year from now, or even a week from now. Just focus on each day. This helped my husband and I a lot.

Good luck!

 

Thanks everyone! I didn't think I'd get much response. I'm feeling a little better today. Had my PetScan done yesterday Still waiting for any calls and keeping my fingers crossed. Going to see the Radiation doctor tomorrow. Appointment at 2pm. I noticed estimated office time is 90 minutes? Wow he must have a lot to tell me if radiation is done which it probably will. I'm more concerned with that than the surgery lol.

MrsBD

SCC

You have joined an elite family. Do you know what I love about this site? You get to see people who joined just months ago, scared and needing support, now giving their support to the newest members. Check in any time. There will always be someone here for you. 

Skiffin16

Welcome..

Sorry you're here.., but it's a good place to be.. 

There's usually always someone on here to answer questions or give support. I've had afew battles of my own.. Also STGIII right tonsil SCC, HPV+, and a lymphnode.

Sixteen weeks, four chemos, 35 days of rads, tonsils removed...., Oh and that was over six years ago now.., clean and clear.. I did have a wicked surgery last year called a whipple due to a precancerous cyst or tumor on the head of my pancreas.. That caused me three surgeries, several months of no food or water by mouth (PICC line)... a hole in my stomach leaking externally for eight months, and lost 90#.. But I survived and now doing very well... The hole was finally closed up in December.. (initial surgery was in April)..

I've had it easier than most concerning cancer though.., but the whipple was kick ****..

It's a rough road that we travel.. 

Never give up, never lose your humor, stay positive, take in calories, stay very hydrated, and believe in your MD's..

Everyone here will help you get through, and you will...

Best,

John

wmc

Skiffin16 said:

Welcome..

Sorry you're here.., but it's a good place to be.. 

There's usually always someone on here to answer questions or give support. I've had afew battles of my own.. Also STGIII right tonsil SCC, HPV+, and a lymphnode.

Sixteen weeks, four chemos, 35 days of rads, tonsils removed...., Oh and that was over six years ago now.., clean and clear.. I did have a wicked surgery last year called a whipple due to a precancerous cyst or tumor on the head of my pancreas.. That caused me three surgeries, several months of no food or water by mouth (PICC line)... a hole in my stomach leaking externally for eight months, and lost 90#.. But I survived and now doing very well... The hole was finally closed up in December.. (initial surgery was in April)..

I've had it easier than most concerning cancer though.., but the whipple was kick ****..

It's a rough road that we travel.. 

Never give up, never lose your humor, stay positive, take in calories, stay very hydrated, and believe in your MD's..

Everyone here will help you get through, and you will...

Best,

John

Wow John................

You have been to hell and back and always have the best advice and in great spirits, and have helped too many to count myself included. You make the rock of gibraltar look like a sea sponge..... . Bless you John

Bill

Skiffin16

wmc said:

Wow John................

You have been to hell and back and always have the best advice and in great spirits, and have helped too many to count myself included. You make the rock of gibraltar look like a sea sponge..... . Bless you John

Bill

Well...

Thanks, I don't really consider myself any different than the rest here.. You do what you have to do to survive.., might as well find humor in it if possible.., LOL.

 

The cancer only took out the tonsils.., the whipple got the head of my pancreas, part of my stomach, my gall bladder, and duodenum.. I can't afford to lose much more as for body parts.. 

tommyodavey

Skiffin16 said:

Well...

Thanks, I don't really consider myself any different than the rest here.. You do what you have to do to survive.., might as well find humor in it if possible.., LOL.

 

The cancer only took out the tonsils.., the whipple got the head of my pancreas, part of my stomach, my gall bladder, and duodenum.. I can't afford to lose much more as for body parts.. 

Positive Attitude

Yes, you got dealt a bad hand with this one happening after the transplant.  But what you will and have found here is the majority of us still stay positive in that we will beat this beast.  You and I are the same age and the same thoughts occurred to me too.  With all the support of the people here and my family, especially my wife, I got through some crappy times.  It will get behind you and all you can do is keep the frame of mind that you will beat this one.  It's not a death sentence until they say so.  Get the best team of doctors you can find and keep that good attitude.  Skiffin 16 has always been a great friend and mood lifter.  Thanks John!  Mimic his humor and you'll feel much better.

 

Don't ever throw in the gloves.  We are fighting survivors here.  Log in everyday for attitude adjustment.

 

I wish you well as you head down the bumpy road of treatment.  It sucks, but what other choice do you have?

 

Tom

luv_freedom

followup

Thanks everyone got the reports from the MRI and the PetScan read to me yesterday at my consultation with the Rad clinic. The MRI was for the transplant followup and the liver is looking good. No problems. The PetScan showed no cancer anywhere else in my body but the spot that they are aware of Which is the right side tonsil and base of tongue, and one node on my neck just under my jawbone is swollen so they will remove it. So I feel very fortunate that it is not worse than it is. Surgery on July 1st. If they can't get it all then some radiation treatment after. They gave me  the choice of the surgery or just radiation treatment. I elected for the surgery. I just have a gut feeling that this is the better of the two. If I'm very lucky they will get it all and I won't have to do any radiation treatments but I'm prepared if they do.

 

Gary

wmc

luv_freedom said:

followup

Thanks everyone got the reports from the MRI and the PetScan read to me yesterday at my consultation with the Rad clinic. The MRI was for the transplant followup and the liver is looking good. No problems. The PetScan showed no cancer anywhere else in my body but the spot that they are aware of Which is the right side tonsil and base of tongue, and one node on my neck just under my jawbone is swollen so they will remove it. So I feel very fortunate that it is not worse than it is. Surgery on July 1st. If they can't get it all then some radiation treatment after. They gave me  the choice of the surgery or just radiation treatment. I elected for the surgery. I just have a gut feeling that this is the better of the two. If I'm very lucky they will get it all and I won't have to do any radiation treatments but I'm prepared if they do.

 

Gary

Gary that is some good news in away.

I think going with surgery is your best chose. They can alwasy do Rad. later if needed. If radiarion is first the surgery is now on radiated tissue and it is more like leather and a little harder to do. Sorry it got the base of toung, but so many here have had that and tho it can be rough. They all got through it and doing pretty good. Will keep youu in my thoughts and prayers.

Bill

robswife87

luv_freedom said:

followup

Thanks everyone got the reports from the MRI and the PetScan read to me yesterday at my consultation with the Rad clinic. The MRI was for the transplant followup and the liver is looking good. No problems. The PetScan showed no cancer anywhere else in my body but the spot that they are aware of Which is the right side tonsil and base of tongue, and one node on my neck just under my jawbone is swollen so they will remove it. So I feel very fortunate that it is not worse than it is. Surgery on July 1st. If they can't get it all then some radiation treatment after. They gave me  the choice of the surgery or just radiation treatment. I elected for the surgery. I just have a gut feeling that this is the better of the two. If I'm very lucky they will get it all and I won't have to do any radiation treatments but I'm prepared if they do.

 

Gary

Hi Gary

I am the caregiver of a survivor. Stage IVA SCC Left Tonsil and Lymphnodes on both sides of neck HPV+ P16. 7 chemo treatments and 35 rads. We are now 2 years out and he is doing good. Gained all weight back now and eating good. It was a rough ride for a couple of months and then every day got a little better. Go to the Superthread here, lots of great information that are lifesavers. I forsee great things in your future so plan on staying around.

Sandy

luv_freedom

Thanks

Thanks for the encouragement everyone. I appreciate it. The support and information I've gained from here and the support from friends and family have made a bigger difference than I thought it would.

LumpinmyThroat

luv_freedom said:

Thanks

Thanks for the encouragement everyone. I appreciate it. The support and information I've gained from here and the support from friends and family have made a bigger difference than I thought it would.

Kick it in the face!

Hey l_f,

Based on your background, you're one tough cookie.  This is not going to end you.  It's just a bump in the road to your full recovery.  You got this!!!!!!!!!!!!!!!!!!!! 

debbiejeanne

hi, Gary, and welcome to our

hi, Gary, and welcome to our family.  you are thinking in the wrong direction!  there are MANY of us who have beat the beast even when the doctors said there was no way.  even though you quit smoking 4 yrs ago doesn't mean the cancer isn't from smoking.  but that doesn't really matter.  you need to get yourself into warrior mode so you can fight hard!  you need to be positive and let those who offer to help you, help.  i do believe you will not only see 70 but 80 and maybe 99.  look what you have already survived.  you are a survivor!!!  So, tie up your boot strings and prepare to fight and be a winner!!!  we are here for you when you need us.  we are always on the sidelines cheering you on.  we all look forward to seeing you cross the finish line.  go Gary, go Gary, go Gary!!!!

God bless you,

dj

luv_freedom

Thank you! I needed that! I'm over the shock and ready to fight to live! I'll post again after surgery on July 1st.

Gary

luv_freedom

OMG!

Back home from surgery. This has got to be the most painful recovery I've ever gone through. Won't know about any rad treatments unitl I go back to see the doctor for follow-up visit in two weeks. He said that I came through the surgery very well. My sister told me that I was in the operationg room for 7 hours! Someone else came from the team and I remember them saying I had a pretty deep tonilectomy to get everyghing. I haven't had a minute without pain since I got home on the 4th of July.

 

Gary

lornal

luv_freedom said:

OMG!

Back home from surgery. This has got to be the most painful recovery I've ever gone through. Won't know about any rad treatments unitl I go back to see the doctor for follow-up visit in two weeks. He said that I came through the surgery very well. My sister told me that I was in the operationg room for 7 hours! Someone else came from the team and I remember them saying I had a pretty deep tonilectomy to get everyghing. I haven't had a minute without pain since I got home on the 4th of July.

 

Gary

Pain

Sorry to hear you have been having a lot of pain. I had the same thing in 2007, but my doctor must have nicked all the right nerves, because I only had pain for a few days.  The neck dissection didn't hurt because I have no feeling there - even 8 years later.  I do remember though, that coming home we were to pick up a prescription of pain killers.  The computers for my insurance pharmacy program were down, and they wouldn't fill my prescription.  We had to beg to get a couple of pills to tie me over.

Hoping for a quick recovery!  Try to stay hydrated, because that will help the recovery and the pain.

Lorna 2007 & 2014