So afraid.

MaryRC

GRAVEY said:

Get yourself to an ENT also
Get yourself to an ENT also Mary. I had a cancerous lymph node removed from the right side of my neck. I went and had a PET/CT scan done, it came up negative. My ENT was going to remove my tonsils and do biopsies of my tongue and throat also, and when I was under, before he removed anything, he saw the spot on the base of my tongue. I know PET/CTs are like the best they have, but If I were to have left it at that, who knows where I would be right now. It took my ENT to physically look and find my Primary source of cancer.

Good luck and Godspeed to you. And know that we all here will listen to any of your gripes, fears, worries, whatever you feel like talking about, thats why we're all here, to help each other

GRAVEY

Hi, I do have an ENT. On the
Hi, I do have an ENT. On the first visit there she ran a scope of somesort down my nostrils and couldnt see anything. I go to see her on Wednsday. Thankyou for the reply. I hope you are doing good.
Mary

MaryRC

Skiffin16 said:

My PET
I was glad to finally have the PET initally. I remember having a bout with diverticulitus at the time. I wasn't sure what was going on and had been really nervous and upset (sound familiar)...anyways, I remember lying there, my stomach hurting and cramping. I thought of course the cancer had spread, first thing I guess we all think. Anyways, I remember thinking well at least whateve I have, they'll see it and we can know where all of the areas that we need to attack.

It was kind of funny in some ways. I go from a few days earlier to thinking I'm gonna die, I have cancer. To having the tonsil removed and only showing a very small area where the tonsil was and the effected lymphnode lighting up...it was such a relief to only see those small areas. I don't know why really, LOL. I mean after all I still had cancer, and I still had to go through the treatment. But some how seeing that small area gave me hope and a positive outlook on kicking butt.

So think of it as a positive thing. You'll know exactly what you're in for, and you won't have any surprises down the road hopefully.

God Bless and stay positive girl...
John

Thanks John
Thanks for the encouragement. I know, I was laying there in that tube thinking they are going to find cancer all over my body. Well I dont know yet if they did, but still I dont feel like I have it all over my body. What I do know is I do have cancer in the lump on my neck and its going to have to come out. Alot of people mention tonsils. I had mine out when I was 4 yrs old. My ENT ran a tube down my nostrils and didnt see anything. I go on Wednesday for what is going to happen. I know there is going to be surgery. I am a nurse but I make a terrible patient. I am a crybaby with pain. But I will do it,I have too much to live for.
Thankyou all who have been writing to me. Makes me feel better.
Mary

D Lewis

stevenl said:

Weekend
Hi Mary,
Well got that part out of the way, that's good. Enjoy your weekend now and enjoy your husband and son
and we'll get started again next week on your journey. But if you need anything please write us. We are here for you.

Praying for you,
Steve

Still wondering here...
Still wondering why MY insurance reviewer STILL has not yet okayed my PET-CT. This is the gold standard for locating the primary, when a 3-cm mets SCC has been identified in a neck lymph node. I'm going on 23 days here since removal and biopsy of the lymph node. First request for the PET-CT was denied, as not being medically necessary. Was told to do the MRI first, by insurance reviewer. I had the MRI done on Wednesday, the 9th, and it showed nothing. Has ANYONE else here been required to get the MRI before being given permission for the PET-CT? Is this unique to California? Anthem Blue Cross is insisting that the new protocol is to require the MRI first. I have an appointment for the PET-CT in radiology for Monday, the 15th, but they will cancel it if they do not get insurance approval by 4:00 p.m. tomorrow (Friday). I have an appointment for surgery - tonsil removal, endoscope, and multiple biopsies, for Tuesday, if the PET-CT is approved, and IF the results come back early enough to be reviewed. Otherwise, the surgery will be bumped to Wednesday. So, I have the special diet for Sunday and the fasting for the PET-CT on Monday. My ENT has told me not to eat on Tuesday, so pending timely receipt of results, he can cut me in the afternoon. Otherwise, we will have to wait for Wednesday. More no eating. These folks are going to burn me down to bare bones before the actual treatment even begins. I think I've already lost ten pounds. And my cheery good humor. Thank you all for listening to me rant. It's so reassuring to hear how each of you are moving forward through the treatment and recovery process. I feel better, then I become intensely fearful because I am trapped in this terrible limbo.

micktissue

D Lewis said:

Still wondering here...
Still wondering why MY insurance reviewer STILL has not yet okayed my PET-CT. This is the gold standard for locating the primary, when a 3-cm mets SCC has been identified in a neck lymph node. I'm going on 23 days here since removal and biopsy of the lymph node. First request for the PET-CT was denied, as not being medically necessary. Was told to do the MRI first, by insurance reviewer. I had the MRI done on Wednesday, the 9th, and it showed nothing. Has ANYONE else here been required to get the MRI before being given permission for the PET-CT? Is this unique to California? Anthem Blue Cross is insisting that the new protocol is to require the MRI first. I have an appointment for the PET-CT in radiology for Monday, the 15th, but they will cancel it if they do not get insurance approval by 4:00 p.m. tomorrow (Friday). I have an appointment for surgery - tonsil removal, endoscope, and multiple biopsies, for Tuesday, if the PET-CT is approved, and IF the results come back early enough to be reviewed. Otherwise, the surgery will be bumped to Wednesday. So, I have the special diet for Sunday and the fasting for the PET-CT on Monday. My ENT has told me not to eat on Tuesday, so pending timely receipt of results, he can cut me in the afternoon. Otherwise, we will have to wait for Wednesday. More no eating. These folks are going to burn me down to bare bones before the actual treatment even begins. I think I've already lost ten pounds. And my cheery good humor. Thank you all for listening to me rant. It's so reassuring to hear how each of you are moving forward through the treatment and recovery process. I feel better, then I become intensely fearful because I am trapped in this terrible limbo.

Hi Debbie
When I first went in they wanted to do an MRI because they were looking for locally growing tumors. I think this is standard, but that was before the biopsy. My MRI was normal - no tumors in my mucosa. Once the lymph biopsy came back + for scc a PET/CT was scheduled and it makes sense. If the biopsy was negative there would have been no reason for a scan.

As for protocols, I'm in CA but I have Kaiser. It might be in ABC's protocol to not do a PET/CT but I would be down there every day demanding that they treat you the way all H&N cases you know of are treated - for all us here (I think) the PET/CT was mandatory for a full and proper assessment.

23 days is too long to wait after Dx for PET/CT and they need the scan to create the Tx plan. I'd continue to advocate in that manner. How do they know how to treat this if they don't know if you have distant mets? And how will they determine if you have distant mets without a PET/CT scan?

Bummer you have to fight this. Let us know how it goes.

Best,

Mick

ygfilart

MaryRC said:

Hi, I do have an ENT. On the
Hi, I do have an ENT. On the first visit there she ran a scope of somesort down my nostrils and couldnt see anything. I go to see her on Wednsday. Thankyou for the reply. I hope you are doing good.
Mary

Squamous cancer of the tongue
Hello. I am yllette from the Philippines. Sept, 2009 i was diagnosed with stage1 squamous tongue cancer. I had about a fourth of my tongue cut-off. But the cancer recurred in January this year and spread quickly to almost all of my tongue. Doctors wanted to cut off my tongue. That same instance, I did research and found out about this hospital in china. I flew there right away. I am now recuperating from various therapies which were not at all surgicaly invasive. I am feeling a lot better by the day and am so glad that not a single part of my tongue was cut. I can talk and swallow better now. But I will still have to go back and forth for follow up tests and treatments until I am fully well. A lot of cancer patients have been treated successfully.

Skiffin16

ygfilart said:

Squamous cancer of the tongue
Hello. I am yllette from the Philippines. Sept, 2009 i was diagnosed with stage1 squamous tongue cancer. I had about a fourth of my tongue cut-off. But the cancer recurred in January this year and spread quickly to almost all of my tongue. Doctors wanted to cut off my tongue. That same instance, I did research and found out about this hospital in china. I flew there right away. I am now recuperating from various therapies which were not at all surgicaly invasive. I am feeling a lot better by the day and am so glad that not a single part of my tongue was cut. I can talk and swallow better now. But I will still have to go back and forth for follow up tests and treatments until I am fully well. A lot of cancer patients have been treated successfully.

Welcome Yllette
Welcome here Yllette....

I'm very glad that you found your way here, and also that you have found a place that you have faith and confidence in for your treatment.

God Bless and Best Wishes....

John

MaryRC

still so afraid
It is Saturday and I have until my doctors appt on Wed. to find out results of my PET scan and what is going to happen to me. I can hardly do anything. My husband took me on a long drive and we ate lunch out but I started to have an anxiety attack. Came home and was reading more on here about unknown primaries and radiation and chemo and I wonder if I am going to be able to do that when it comes that. I still have the lump on my neck, it appears to be the same size. I have Ativan for anxiety and I know I am going to have to take some before I see the doctor on Wed. People at home keep telling me to be positive but I just see the dark side.
Mary

debbiejeanne

MaryRC said:

still so afraid
It is Saturday and I have until my doctors appt on Wed. to find out results of my PET scan and what is going to happen to me. I can hardly do anything. My husband took me on a long drive and we ate lunch out but I started to have an anxiety attack. Came home and was reading more on here about unknown primaries and radiation and chemo and I wonder if I am going to be able to do that when it comes that. I still have the lump on my neck, it appears to be the same size. I have Ativan for anxiety and I know I am going to have to take some before I see the doctor on Wed. People at home keep telling me to be positive but I just see the dark side.
Mary

so sorry
Dear Mary, I'm so sorry that you are so scared. We have all been there, in fact, we will all probably always be a little scared and once the cancer is gone. I wish I could help you be less afraid b/c we here all know what you're feeling. The best I can say is to have faith in God and never let the illness take that from you. It will be what get's you thru your journey. Your friends here on CSN will also help you. We will always be here when you need to talk, sceam, cry, whatever. I am sorry for you and everyone who visits this site b/c we all have or have made that journey. I pray you can stay strong and rember to pray to keep your fiath strong.
God Bless You,
Debbie

pk

delnative said:

A little update
Mary: I was diagnosed July 11, 2008 -- my 54th birthday -- and finished treatment in October of that year. I also had a modified radical neck dissection in January 2009 to remove a bum lymph node.
Today I went back to Johns Hopkins to see my radiology oncologist for a routine checkup, something I get every three months.
He scoped my throat -- through the nose, of course -- and made approving noises throughout the procedure. Once he pulled the scope out he said, "Your throat is amazing. It looks like you never had radiation." Now he doesn't want to see me for another six months, instead of three.
Now I had no reason to think anything was wrong, because I had a PET scan in December that came up clear, but still, getting to amaze your doctor is pretty cool.
You see? Not only can you beat this beast, but you can become a medical marvel!

--Jim in snowbound Delaware

Jim
You are a marvel indeed!!! Not only to your Dr., but to all who are on this site. Yours is the very news that all who post here want to know about. I am so happy for you.
PK

Skiffin16

MaryRC said:

Thanks John
Thanks for the encouragement. I know, I was laying there in that tube thinking they are going to find cancer all over my body. Well I dont know yet if they did, but still I dont feel like I have it all over my body. What I do know is I do have cancer in the lump on my neck and its going to have to come out. Alot of people mention tonsils. I had mine out when I was 4 yrs old. My ENT ran a tube down my nostrils and didnt see anything. I go on Wednesday for what is going to happen. I know there is going to be surgery. I am a nurse but I make a terrible patient. I am a crybaby with pain. But I will do it,I have too much to live for.
Thankyou all who have been writing to me. Makes me feel better.
Mary

Mary You're on my List....
My prayer list that is...only the best of results from your scans....it doesn't matter that you're nurse (though I applaud you, my mother was a nurse as was my wife's mother), it makes everyone afraid and re-evaluate your life.

Anxiously awaiting your results.

John

MaryRC

one more day and night to go
See the doctor on Wednesday. Then I will get PET results and what is going to be happening to me. Maybe then the knot in my stomach will ease up. My anxiety is bad. Have to force myself to get outside and do something. Most of the afternoon and evening I have been laying on the sofa staring at the TV. Wish I would wake up from this nightmare that is now my life.
Mary

Hondo

MaryRC said:

one more day and night to go
See the doctor on Wednesday. Then I will get PET results and what is going to be happening to me. Maybe then the knot in my stomach will ease up. My anxiety is bad. Have to force myself to get outside and do something. Most of the afternoon and evening I have been laying on the sofa staring at the TV. Wish I would wake up from this nightmare that is now my life.
Mary

The Waiting Game
I know where you are coming from, it is a long journey and most of us here have traveled down that road. What ever your results maybe we will all be here to help you through it.

God bless

D Lewis

MaryRC said:

one more day and night to go
See the doctor on Wednesday. Then I will get PET results and what is going to be happening to me. Maybe then the knot in my stomach will ease up. My anxiety is bad. Have to force myself to get outside and do something. Most of the afternoon and evening I have been laying on the sofa staring at the TV. Wish I would wake up from this nightmare that is now my life.
Mary

I'm with you, MaryRC
I got the PET-CT yesterday, and the technician was kind enough to burn the test results onto a disc so I could carry it back to my doctor. I'm scheduled to see the ENT at 10:30 a.m. today. Hopefully he can go over the scans with me then. He's planning to remove the tonsils and do a comprehensive endoscopy based on those scans, later in the day, at 1:00 p.m. I sure hope everything goes according to plan. I caught a cold from my office mates, and I'll be pissed if that changes anything.

Sadly, this isn't a nightmare that we can wake up from. This is our new reality. I am trying to accept it as MY new reality. I'm also beginning to see it as my new job, at least for the time being. I've got some serious work to do, over the next few months and I'm going to do it right.

Hang in there, baby.

Deb L.

MaryRC

D Lewis said:

I'm with you, MaryRC
I got the PET-CT yesterday, and the technician was kind enough to burn the test results onto a disc so I could carry it back to my doctor. I'm scheduled to see the ENT at 10:30 a.m. today. Hopefully he can go over the scans with me then. He's planning to remove the tonsils and do a comprehensive endoscopy based on those scans, later in the day, at 1:00 p.m. I sure hope everything goes according to plan. I caught a cold from my office mates, and I'll be pissed if that changes anything.

Sadly, this isn't a nightmare that we can wake up from. This is our new reality. I am trying to accept it as MY new reality. I'm also beginning to see it as my new job, at least for the time being. I've got some serious work to do, over the next few months and I'm going to do it right.

Hang in there, baby.

Deb L.

PET scan results.
You sure got yours back fast! Well to let everybody know.... my ENT called me this morning even thou appt isnt until tomorrow. When I saw the number on caller ID I started in with a panic attack. She called to tell me the only cancer shown on the PET scan is in the lump on my neck. We will talk about surgery tomorrow when I go in. She said depending on surgery finding and pathology, then she will know if I need radiation. She said the lump where I have it means usually something oral but she cant find it on the scope or didnt show up on the CT or PET scan.
I have been up all night , my stomach in knots. Ached all over my body. Now I feel like dancing, though I still have cancer!!!!!!!!! I know I will have the surgery soon, I want this damn lump out of my neck. I will be ok with having radiation if thats what it will take. I will be Mary again.
She did tell me my PET scan showed I have a kidney stone. Like big deal!!!!!
I know I will be a big baby after surgery. I have to find out how long a hospital stay.
Will post tomorrow with more news.
Deb, I hope you get good results with your PET as well!!!! Thinking of you.
Mary

Skiffin16

MaryRC said:

PET scan results.
You sure got yours back fast! Well to let everybody know.... my ENT called me this morning even thou appt isnt until tomorrow. When I saw the number on caller ID I started in with a panic attack. She called to tell me the only cancer shown on the PET scan is in the lump on my neck. We will talk about surgery tomorrow when I go in. She said depending on surgery finding and pathology, then she will know if I need radiation. She said the lump where I have it means usually something oral but she cant find it on the scope or didnt show up on the CT or PET scan.
I have been up all night , my stomach in knots. Ached all over my body. Now I feel like dancing, though I still have cancer!!!!!!!!! I know I will have the surgery soon, I want this damn lump out of my neck. I will be ok with having radiation if thats what it will take. I will be Mary again.
She did tell me my PET scan showed I have a kidney stone. Like big deal!!!!!
I know I will be a big baby after surgery. I have to find out how long a hospital stay.
Will post tomorrow with more news.
Deb, I hope you get good results with your PET as well!!!! Thinking of you.
Mary

YAAAA Mary C....
So glad for you...

See I told you, isn't it funny how quick you go from thinking the worst "My God, I have Cancer", to dang, "I only have Cancer in that one spot"..... So happy for you, and I hope that it continues to be only that area, and trhat your treatment will be easy and effective (as can be under the circumstances).It's still going to suck, but nothing you can't handle.

God Bless You,
John

stevenl

Skiffin16 said:

YAAAA Mary C....
So glad for you...

See I told you, isn't it funny how quick you go from thinking the worst "My God, I have Cancer", to dang, "I only have Cancer in that one spot"..... So happy for you, and I hope that it continues to be only that area, and trhat your treatment will be easy and effective (as can be under the circumstances).It's still going to suck, but nothing you can't handle.

God Bless You,
John

Fantastic!!!
Great news Mary!!!!!
Like a lot of us have said, the more knowledge you have about your condition, the better you feel. Knowledge empowers us to begin the fight!! Hang in there girl. Here's to a very uneventful journey!!!
Blessings,
Steve

P.S. Yea that is still me in the picture, only now instead of a fish I am holding the greatest catch of my life.

sportsman

So Afraid
MaryRC: It is a definite shock to find out you have cancer. Probably the most terrible thing that I had ever heard other than when my sixteen year old son was diagnosed with cancer nearly twenty five years ago now. I remember just sitting in my vehicle and crying after my ENT took a needle biopsy and told me he suspected it was cancer. I was being treated for allergies and a persistant sore throat with anitbiotics. Then a lmyph gland popped out on my neck and I knew then that this was something beside allergies. I immediately put my faith in God and asked him to help me fight this dreaded disease. My cancer being in stage four was fairly well advanced and I was immediately scheduled a neck dissection and after that 35 radiation treatments and chemo once a week. I later found out that this is probably the most severe radiation you can take and can and will most likely cause lifetime side effects. I was fifty seven years old and in the physical shape of men twenty to thirty years younger than I when I was diagnosed. This according to my doctors helped me tremendously in my battle. As of February 26 I will be three years cancer free. I need two more years to feel safer that the cancer will not return. I am not the man I once was but I am alive and now live the life I call the "new normal". I have good days and bad days and some in between but I have gone through this hellish fight and I refuse to quit. God Bless you,

Skiffin16

sportsman said:

So Afraid
MaryRC: It is a definite shock to find out you have cancer. Probably the most terrible thing that I had ever heard other than when my sixteen year old son was diagnosed with cancer nearly twenty five years ago now. I remember just sitting in my vehicle and crying after my ENT took a needle biopsy and told me he suspected it was cancer. I was being treated for allergies and a persistant sore throat with anitbiotics. Then a lmyph gland popped out on my neck and I knew then that this was something beside allergies. I immediately put my faith in God and asked him to help me fight this dreaded disease. My cancer being in stage four was fairly well advanced and I was immediately scheduled a neck dissection and after that 35 radiation treatments and chemo once a week. I later found out that this is probably the most severe radiation you can take and can and will most likely cause lifetime side effects. I was fifty seven years old and in the physical shape of men twenty to thirty years younger than I when I was diagnosed. This according to my doctors helped me tremendously in my battle. As of February 26 I will be three years cancer free. I need two more years to feel safer that the cancer will not return. I am not the man I once was but I am alive and now live the life I call the "new normal". I have good days and bad days and some in between but I have gone through this hellish fight and I refuse to quit. God Bless you,

Sportsman
Wow, your symptoms started exactly like mine including the swollen lymphnode that popped up. I also had the primary as my tonsils, the lymphnode as a secondary. Stage III here though and no neck dissection, but an added nine weeks of triple chemo (Taxotere, Cisplaten and 5FU), the seven week regime during 35 radiaion exposures was just Carboplaten.

Glad you are doing well, and wish for your continued success. I'm only eight months out of treatment.

John

MaryRC

sportsman said:

So Afraid
MaryRC: It is a definite shock to find out you have cancer. Probably the most terrible thing that I had ever heard other than when my sixteen year old son was diagnosed with cancer nearly twenty five years ago now. I remember just sitting in my vehicle and crying after my ENT took a needle biopsy and told me he suspected it was cancer. I was being treated for allergies and a persistant sore throat with anitbiotics. Then a lmyph gland popped out on my neck and I knew then that this was something beside allergies. I immediately put my faith in God and asked him to help me fight this dreaded disease. My cancer being in stage four was fairly well advanced and I was immediately scheduled a neck dissection and after that 35 radiation treatments and chemo once a week. I later found out that this is probably the most severe radiation you can take and can and will most likely cause lifetime side effects. I was fifty seven years old and in the physical shape of men twenty to thirty years younger than I when I was diagnosed. This according to my doctors helped me tremendously in my battle. As of February 26 I will be three years cancer free. I need two more years to feel safer that the cancer will not return. I am not the man I once was but I am alive and now live the life I call the "new normal". I have good days and bad days and some in between but I have gone through this hellish fight and I refuse to quit. God Bless you,

sportsman
I am happy to hear you have been cancer free for 3 yrs!
This site has helped me so much. I hardly knew a thing before Ifound this site.
I am a bit concerned that with me the doctor hasnt found the primary. I will talk to her about that tomorrow. I am still having some stress, not as bad but still stressed. Have all my family now asking me if I ate something. I know for sure if I have radiation I will have the Peg tube. I cant afford to lose much. I am a nurse and one of my little patients has a feeding tube so I know how to work one.
I am more ready now then I was.
Steve, I like this picture with your wife better then the one with the fish!
Mary

stevenl

MaryRC said:

sportsman
I am happy to hear you have been cancer free for 3 yrs!
This site has helped me so much. I hardly knew a thing before Ifound this site.
I am a bit concerned that with me the doctor hasnt found the primary. I will talk to her about that tomorrow. I am still having some stress, not as bad but still stressed. Have all my family now asking me if I ate something. I know for sure if I have radiation I will have the Peg tube. I cant afford to lose much. I am a nurse and one of my little patients has a feeding tube so I know how to work one.
I am more ready now then I was.
Steve, I like this picture with your wife better then the one with the fish!
Mary

Fish
Hi Mary,
We have been married 33,oops,32years. Now you know the 2 greatest loves in my life.
They are both the "F" word. Family and Fishing.LOL What? Did i get you with the F word thing? Just a little joke LOL.

God Bless ya Mary,
Steve