Diagnosis Post Radiation/Chemo Treatments

My husband had PT/CT/MRI testing results today after completing 90 radiation treatments and 9 chemo treatments just over 8 weeks ago.  He is stage IVA squamous cell of the tonsil and only 48 years old.  Of course we had prayed for the best but we THOUGHT we were prepared for the worst.. we weren't.

His tests reveal that he has not beaten the cancer YET.  He has evidence that mets to the sinus cavity, base of the skull and possibly the lungs appear.  The part that was the initial tumor, though smaller, is still alive and wrapped around the carotid artery, what the Dr. calls worse case.

We are seeking further care from MD Anderson, the clinic in Orlando is where we went.  They are testing further but looking at scheduling surgery in two weeks for a radical dissection. 

I need words of encouragement that this surgery IS the right step.  The possiblity of losing the voice, use of his shoulder, etc is scary.  The fact that they cannot remove the carotid artery and if the tumor is wrapped around as they suspect they will have to perform the radical and implant radiation seeds for what the Dr describes as :last ditch:  They will have to remove muscle from his chest to implant in his neck as the carotid artery will be left with skin only between it and injury.

Anyone have this surgery? 

On 10/30/2007 Weezy wrote:

My husband had PT/CT/MRI testing results today after completing 90 radiation treatments and 9 chemo treatments just over 8 weeks ago.  He is stage IVA squamous cell of the tonsil and only 48 years old.  Of course we had prayed for the best but we THOUGHT we were prepared for the worst.. we weren't.

His tests reveal that he has not beaten the cancer YET.  He has evidence that mets to the sinus cavity, base of the skull and possibly the lungs appear.  The part that was the initial tumor, though smaller, is still alive and wrapped around the carotid artery, what the Dr. calls worse case.

We are seeking further care from MD Anderson, the clinic in Orlando is where we went.  They are testing further but looking at scheduling surgery in two weeks for a radical dissection. 

I need words of encouragement that this surgery IS the right step.  The possiblity of losing the voice, use of his shoulder, etc is scary.  The fact that they cannot remove the carotid artery and if the tumor is wrapped around as they suspect they will have to perform the radical and implant radiation seeds for what the Dr describes as :last ditch:  They will have to remove muscle from his chest to implant in his neck as the carotid artery will be left with skin only between it and injury.

Anyone have this surgery? 

Where do you live? I would recommend Emory in Atlanta Ga. I would see Dr. William Grist. He is the best neck & oral surgeon. He is my Dr. I had stage 3 Tongue cancer 19 months ago.

We are in Central Florida and will have treatment continuing at MD Anderson in Orlando.  The surgeon is one of the best in the area (my niece works for the same clinic and has extreme faith in their ability).

The radical they are considering is going to have long-term effects that I am researching the possible options we have for him. I want him to have a quality of life and from what I am reading I am not sure that will be the case. 

Losing his voice we can deal with... losing his ability to swallow, work in his own business and the physical limitations we can deal with... BUT losing HIM I am not ready to deal with...

Weezy

I understand what you are going thru & him also. I didn't talk for 6 months.I can swallow, but because I can't eat the esophgus has almost closed off. They will not put me thru opening it until they see movement in the tongue. I have accepted the fact ,that I may never eat again. My speech isn't normal, but that is ok. I don't miss food at all. It has been so long since I have easten normal. Does he have a feeding tube? I am 57 & found out I have the tongue cancer in April of 05. I must say radiation burnt me up. I had no side effect from chemo. My mouth is so dry & that gets to me& my tissue in my mouth is very fragile. My mouth bleeds alot if I talk to much, & I love to talk. I would have never made it thru all this without God, family & friends. I am single & have always been single. I have always been a fighter. I would like to share a verse with you that keeps me going." I can do all things thru christ who gives me my strength"I hope you didn't mine me sharing that. God healed me of this cancer. He is a healer. I had my full body PET scan in Aug. & I am cancer free.  I do have to take pain medicine, because my left jaw is damage from so powerful radiation & I can't open my mouth wide. Please continue to share with me about his cancer & how he is doing. Ask me any Questions. I am from Orlando & now live in Dahlonega, Ga. He should be on social sercurity disability. I was put on it right away because of my speech & the line of work I was in. I will pray for healing for him & strenght for you & him. God is Great

Blessing,Gatorgirl
 

'

On 10/30/2007 Weezy wrote:

We are in Central Florida and will have treatment continuing at MD Anderson in Orlando.  The surgeon is one of the best in the area (my niece works for the same clinic and has extreme faith in their ability).

The radical they are considering is going to have long-term effects that I am researching the possible options we have for him. I want him to have a quality of life and from what I am reading I am not sure that will be the case. 

Losing his voice we can deal with... losing his ability to swallow, work in his own business and the physical limitations we can deal with... BUT losing HIM I am not ready to deal with...

Weezy

Weezy,  I sent you a message back, but I don't think I did it right, so it I think got posted to the message board. I hope you can find it. Sorry

On 10/30/2007 Weezy wrote:

My husband had PT/CT/MRI testing results today after completing 90 radiation treatments and 9 chemo treatments just over 8 weeks ago.  He is stage IVA squamous cell of the tonsil and only 48 years old.  Of course we had prayed for the best but we THOUGHT we were prepared for the worst.. we weren't.

His tests reveal that he has not beaten the cancer YET.  He has evidence that mets to the sinus cavity, base of the skull and possibly the lungs appear.  The part that was the initial tumor, though smaller, is still alive and wrapped around the carotid artery, what the Dr. calls worse case.

We are seeking further care from MD Anderson, the clinic in Orlando is where we went.  They are testing further but looking at scheduling surgery in two weeks for a radical dissection. 

I need words of encouragement that this surgery IS the right step.  The possiblity of losing the voice, use of his shoulder, etc is scary.  The fact that they cannot remove the carotid artery and if the tumor is wrapped around as they suspect they will have to perform the radical and implant radiation seeds for what the Dr describes as :last ditch:  They will have to remove muscle from his chest to implant in his neck as the carotid artery will be left with skin only between it and injury.

Anyone have this surgery? 

we live in florida and i just found cyberknife is in melbourne at the cancer center in brevard county ..i have head neck and throat  cancer and its mainly based in my throat i go for consult the 8th of novemeber number is 3219520898  see if they have any words that might help or go to www.cyberknife.com for more info might be something to look into for him...

God Bless
Cathy & Dustin

Gatorgirl,

Thank you for sharing your story with me.  I have extreme faith in God and the powers of a prayer, let alone the hundreds of prayers we are blessed to have working for us.

Today I talked to a friend that is a Doctor and discussed the procedure and the aftermath.  Unfortunately the carotid artery encapsulated in the tumor is the worst thing that can happen.  They cannot remove it, the tumor is still growing and and the cancer is spreading.  I just hate to see him go through all this pain and misery and have the same outcome.

I have prayed and prayed for an answer to my question of Should we do the surgery.  I feel deeply inside that the answer is no, God has given a chance to say goodbye to this wonderful man in our own way.  I did a lot of research and have realized that with the radical they want to do he will have no quality of life IF he ever comes out of the hospital.  The chance of bleeding out is high, the cancer is spreading to other areas (sinus, skull, lungs, etc.) but they cannot address that until they find if they can remove the danger here.  He will have no ability to talk, eat, drink, move his arm and shoulder (only after long sessions of therapy) and due to the weakened condition he is in I don't know if he can even survive surgery.

We will go to the appointments set up, listen to the Dr's opinions and sit down with our sons and family and family of friends and make the best choice for him.

Now.. IF they tell us that the carotid artery is NOT completely encased in the tumor as they say it was.. well...  THAT is a different story!

Sometimes God blesses you with the opportunity to say goodbye to someone, you just have to be ready to do it.

Weezy