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So afraid.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I had a lump on the back of my neck and after having a needle biopsy it came out squmous cell carcinoma. I have to have a PET scan this coming Thursday. I have always felt fine and healthy. I have been a vegetariann for 10 yrs and then a vegan. I felt I have had a healthy life style. So I was so shocked when I found the lump on the back of my neck, thought she would say it was a fat lump. When she said the word cancer I dont know how I made it home from work. I got to my bed and screamed for 2 hours. My husband came in from work and held me till it passed. My family doctor called me, he had just gotten the reports himself. He said it doenst say lymph gland on ct report, just mass in my neck. I guess the PET scan is to see if is coming from some other place in my body I am so afraid I am going to die any minute. Up until this point I was out working in my garden and laughing at life. I want be positive and I found this site to talk to other people going what I am going through. I am trying to stay sane. I had another good cry this morning.
Thankyou for listening to me.
Mary

MarineE5
Posts: 751
Joined: Dec 2005

Mary,

Sorry to hear that you have to walk down the path that many of us here had to travel.

I know that you have many emotions running through your mind and in turn make you feel upset. You feelings make you react to the situation that is present.

You came to the right place to find answers to many questions that you will have. The thing right now is to not get overwhelmed with might happen until you have had all your tests and all the options have been presented to you.

There are allot of good people here to help you. Read what you can and learn. Try not to look at the survival rates as they can muddy your mind and many of the stats are outdated. I recently did a search on that and the stats were the same ones I looked at 5 years ago. And at that time, many of them were 5 years old.

My Best to You and Everyone Here

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

It just gets so overwelming. Show shocking to have this happen to me. I am always so active and I eat well and have always been fine. Now a cancer lump on the back of my neck. I have my test on Thursday but wont get results until Wednesday.
Mary

fsdman
Posts: 51
Joined: Jul 2009

Hi Mary,
Sorry for your trouble. I cant imagine waiting a week for results.I took my last PET on last Wed and got the results Thurs. Why must you wait?No reason I know of.
Also ,you are getting great advice here. It has been a big help to me as I made the journey from diagnosis to traetment to post treatment to now.There is nothing you will go through that people here havent already survived. We will help you as you need it.Just ask.Good luck

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Mary. I too had about three weeks of thinking the worst. I was so scared I could not sleep. Since diagnosis (31 Dec), surgery (15 Jan), and treatment plan (6 Feb, my treatment starts on the 17th) I am better. What I think scared me the most was the 'not knowing'. Every time I got information I calmed a bit more. It has been a rather frightening two months.

Once the initial shock wears off I would suggest doing some research on your illness and ask the Drs to give you the exact diagnosis and staging. I would also suggest getting the book AntiCancer by David Servan-Schreiber for inspiration as well as a guide to treating cancer. There are several books to look at, but this one I find especially inspiring and helpful.

There is a support site for the kind of cancer we have called Support for People with Head and Neck Cancer (SPOHNC) and can be found at http://www.spohnc.org/. As well you need to visit the National Cancer Institute's Head and Neck site found at http://www.cancer.gov/cancertopics/types/head-and-neck/.

Please do not give up hope. What you have is likely very treatable and most of us on here are pre- or post-treatment and can offer you a great deal of support and information. I found and joined this site on 29 December and it has been a gift to have these people to chat and share with *daily*. What I've come to accept is that I have a "new normal", a phrase you may hear a lot on this adventure. All of us have been changed by this experience and accepting the change can be difficult, depressing, annoying, aggravating ... Yet it is in accepting it that you may find strength and courage to confront and advocate for your treatment. This is a very important thing. Many people don't feel empowered to advocate for themselves and it can be the thing that gives you the courage to face what's coming. Keep a journal for questions you have for your Dr. Build a support group with your family and friends. Certain people will rise to the occasion and it may surprise you.

Chin up Mary. We are all of us here with you. Please continue to post and ask questions, search the threads, reach out. We are here.

Best,

Mick

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

My family doctor called me after he had the report on his desk. He said all report said was there there was only cancer in lump on my neck, it didnt say a lymph node. My CT scan only showed this one lump. The ENT doctor wants me to have the PET scan. So scary but I wont know till the test is over with. I dont have any symtoms of having cancer anyplace else.Yes I guess it is the not knowning that is scary.
I came home from getting the dianosis and cried on my bed for hours, couldnt stop, shaking and so afraid. Now I do ok for awhile then something comes over me and I will cry again.
My doctor (ENT) hasnt said much yet. I had more comfort from my family doctor.
Thanks for writing to me and keep me posted on you. Your treatment will be succsessful.
Mary

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Hi Mary. I got mad at a few of my Drs when they wouldn't communicate with me to my satisfaction. If yo are not getting what you want from your ENT they need to know. You can put it as a formal request "please tell me everything you know about my illness" or emotional "I need more information so I can stop crying". Either way are likely to get a response.

You are your own best advocate. If that is a problem for you designate someone to advocate for you. Someone in your family or a friend who are not afraid to confront, might be helpful to you right now. Obviously you'll want to stop short of rudeness or accusations, but being assertive does not equal being rude or inappropriate.

With so little information your mind is going to the worst case scenario. In my case more information always meant I got a little calmer. Now I am ready for my fight.

You will get through this Mary.

Best,

Mick

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Mary,
So sorry that you have been diagnosed with cancer. But you have found a great place to get help with your fears, questions and just a great place for general support, whatever your need may be at any given time. I found this place the day after I was diagnosed. The people here have helped me overcome my fears and guided me in what to expect and what I should ask my doctors. Don't be afraid of the c, maybe you can do like me and just get mad at it. From what I have learned thus far, this is very treatable and you CAN BEAT IT!!. I had a radical right neck dissection which was very successful and I start my radiation and chemo the 15th. So I have made it this far and I will make it all the way through, and there is no reason that you won't make it too!!!. So hang in there, post here when you need something and someone WILL help YOU. Have courage be strong YOU WILL MAKE IT!!!!.

All the best,
Steve

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Thankyou Steve.
I am not crying as much as when I got the dianosis on the 3rd. I was at work when the doctor called me. I dont know how I made it home. Got home and completely came apart. My husband finally got me to settle down after an hour. What really helped me is my family doctor called me soon as the report was on his desk. He was so calm and told me all about what the report said. He didnt rushed it and scare me. The CT scan I had last week didnt show anything but the one lump in back of my neck. I do the PET scan on Thursday at 7:45am. But wont get results till Wednesday. Can I ask you what you have? Did yours start with a lump on your neck. Did you have to stay in the hospital after your surgery?
Thankyou
Mary

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Yes you can ask what I have. Here goes; Squamous Cell Carcinoma, Stage 4, Primary Right Tonsil. Yes it started with a small lump on the right side of my neck. I stayed 2 nights in the hospital after my surgery. Mick is right about the doctors. If you feel you are not getting all the information about your diagnosis, by all means ask! If you don't know what to ask post here and people will help you. Mick and Marine E5 have really helped me a lot. Everybody here has helped me and they will help you too. Hang in there, my thoughts and prayers are with you.

Steve

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I think y our reaction is normal. I must admit that I did not scream for two hours but in retrospect it might have been the thing to do. Releasing your feelings is most likely good in the long run. After the shock is settled then you will start to make good decisions in regards to the direction of your treatment.

What ever is decided for your treatment you are headed for a tough journey. Keep your feelings open and continue to think positive. Your cancer is treatable. Taking the step to enter this site is a good step in your journey. Good luck and do not feel alone.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Thankyou for the support. Have you had surgery and treatment yet?

cwcad's picture
cwcad
Posts: 117
Joined: Nov 2009

I am three years cancer free from Stage IV tongue cancer. I am a new member to this forum. But the help that has been provided has helped me turn the corner on this cancer. I was stuck in depression after the treatments. Everything has worked out for the best so far. Reading the posts on the forum has made it easier for me. I do not have to many horror stories. The chemo is not fun. The radiation is as bad as everyone says. But it is no harder than showing up for work. Some days I didn't feel like going...but I did. I tend to think of the depression that comes during and after the treatments. This is where I let myself go. Depression has slowed my recovery. It has helped reading of other who were depressed and how they handled it.

Someone will be here for you. The members are always willing to share and listen. I think it was the last prescription in my battle with my cancer.

Keep posting and good luck. You and the others of the forum will be in my prayers this night

Hondo's picture
Hondo
Posts: 5749
Joined: Apr 2009

I too was a vegetarian for more then 15 years before I found out that I had NPC. Cancer does not have respect for anyone, but remember that there is life after cancer treatment. You will find a lot of help and support here so keep strong and keep us posted on your progress,

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am now reading on here about radiation and PEG tubes and having teeth out. I dont know if I can sleep tonight. This was such a shock to me. I have been healthy all my life and when I felt the small lump on my neck I just thought it was an infection or something. Hearing the word cancer has scared me to death.
I am glad I found this site.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am now reading on here about radiation and PEG tubes and having teeth out. I dont know if I can sleep tonight. This was such a shock to me. I have been healthy all my life and when I felt the small lump on my neck I just thought it was an infection or something. Hearing the word cancer has scared me to death.
I am glad I found this site.

Hondo's picture
Hondo
Posts: 5749
Joined: Apr 2009

It did the same thing to me, I remember being afraid and asking God what he was thinking, Cancer is for people who misused and mistreat there bodies not me. But in time I learned to lean on Him and trust Him so must more then I every could had I never had Cancer, in my storm I found he is my anchor.
Fear in natural when dealing with cancer and the road is very dark but there is light at the end of the tunnel, we are here to help you through that tunnel.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

From what I gather from your first post in this thread, only a needle biopsy has said it is C? A needle biopsy is only the first step/test.

The Pet Scan is to see where the C MIGHT exist in your body, as the scan will typically cover all areas from your brain to upper-thighs. I would advise avoiding sugar before your Pet Scan, as sugar seems to be key to false positives in the mouth/throat area

I would advise talking to/visiting your regular Dr. He/she may be able to help you cope with a prescrip- such is not untypical. I've had my Port and PEG tube for over a year, now, and neither is as bad as it seems. And, I would advise getting the PEG if your Dr. suggests it- makes getting nutrition easy during treatment, and nutrition is critical in helping your body deal with all that treatment brings with it. Some of us regard the PEG as a blessing.

Mary, you are in transition. All of us go thru it when we are diagnosed. Brave new world, Mary. You don't wanna be where you are, just as none of us do/did. You just have to accept it, but at the same time keep your Drs. on their toes. You must keep your eyes on the time after treatment, BECAUSE you will survive this, and your life will go on. Hondo and I, as have many others, found solace with the Lord, and help given by the grace of God. This is a time for adjustments. You got a bit of an historic battle ahead of you, and there will be difficult times, but you will survive. Your Drs. will not only treat the C, but they will also help you cope with it all with prescrips- but you must let them know of your struggling with this. Everyone of us has survived (I'm 15-month), and so will you. It is a brave new world, Mary, but all of us come out of the treatment as better people than we were before our diagnosis. The light at the end of the tunnel is already there, Mary. All you have to do is seek it correctly. That light, and your post-C continued life, are waiting for you. Find them, Mary, and

Believe.

kcass

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

Glad you found your way here....

Reading your other post I can very well relate and sympathize with you. I remember the Friday that I found out that I had SCC stage III in my throat as well. It was a shocker to say the least. I remember the week-end in-between finding out, and having my tonsils out very well. I was feeling very good other than a small irritation in my throat that wouldn't go away prior to the diagnosis. That week-end was pure hell to me and my wife. I wasn't diagnosed stage III until he removed my tonsil. I also had a lump in my throat that came up the last few weeks before diagnosis also. I gathered all of my important documents and account information for my wife I wasn't sure if I was going to make it through that week-end....

But I did make it, the surgery, the nine weeks on chemo and then seven weeks of concurrent chemo and radiation. It's rough and not fun at all, but you can make it also.

One thing that I hope the check out for you is if it is HPV derived. The sent my biopsy out for testing of that and it did come back as HPV positive. HPV related throat cancers tend to respond well to the treatments if that's any comfort.

Hopefully your PET will go well and it will be confined to that one area. Usually there is a primary and secondary source. For me the tonsils were the primary the lump the secondary. All has been good since treatment, no signs of cancer present. The lump actually dissolved after the second round of chemo for me....

I also have United Health Care as my work primary provider and contracted through the Watson Cancer Center for Research here in Lakeland, Florida where I live and work.

United Health Care came through very well for me and I had very little problems with anything. If I had a prescription get hung up, I could call and the gate keeper for our plan had it resolved within a few hours...

Good Luck and God Bless...
Keep us posted and feel free to ask any questions you may have.....
John

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Hang in there. Things will get better, and so will you. This is a survivable cancer, and you can beat it.
As for being a vegetarian/vegan: So was my dear cousin Annie. She got breast cancer. She died.
By contrast, I have been eating a largely organic diet for decades, but I do eat meat. It's mainly venison from deer that I shoot during hunting season, along with wild waterfowl and the occasional wild boar. That's about as organic as organic can be, and I can't remember the last time I bought meat.
I got cancer. I didn't die -- and I don't plan on doing so for a number of years yet.
As has been pointed out previously, cancer doesn't pay much attention to who you are or what you've done. But with the right attitude and the right treatment, you can damn well make it sit up and take notice.
Welcome to the board, and please keep us informed of your progress.

--Jim in snowbound Delaware
(Stage III SCC of the right tonsil, one lymph node involved, HPV-positive)

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

My PET scan is this Thursday. So far all they know is I have a small lump on the back of my neck,near my hairline. Not very big but had a needle biopsy and it is cancer. Now all the tests, and the waiting and waiting. I am going back to work tomorrow. I was laying around wallowing around in feeling sorry for myself. I am a homehealth nurse and have two special needs kids that need me there to take care of them. My family doctor put me on anti-anxiety pills and I am not going to take more, make me sleepy and I need to be strong to fight this!!! Thankyou for writing to me. How long have you had this cancer?
Mary in California

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

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

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I am so glad that you are free from your cancer! I had another panic attack today but then I didnt take any of my anti-anxiety pills today. Plus havent been eating. I feel better now that I took the pill. Plus my husband came home from work and made me a egg/cheese omlet and said I dont care if you are a vegan , you eat this , you need some protien, so I did just awhile ago and I feel stronger! I have to beat this Jim. I have a 14 yr old son that needs me still. Thankyou for telling me your good news!
Mary

debbiejeanne's picture
debbiejeanne
Posts: 2406
Joined: Jan 2010

Jim, that is AWESOME!!!!!!!!1 I am sooooooooooooo happy for you. I can't wait for the day that the rest of us also get to type that. I think you should celebrate because you are a Medical Marvel!! Again, fantastic news that we are all glad to hear. Praise God for miracles!
Debbie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Excellent to hear your throat is in such good shape; clean PET even better.

pk's picture
pk
Posts: 192
Joined: Aug 2009

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

Dasri
Posts: 5
Joined: Feb 2010

Jim -
It is wonderful to hear that you are doing well! I am new to this site and forum. I too have dealt with the squamous cell cancer. Mine was found on the right tonsil/right lymph node area. I finished my treatments in April of last year and things are going well. I am glad to know another "medical marvel" exists besides myself! I started out at stage 4 and am now free (so far) without any surgery required. May God bless you and keep you going strong!

cjamesfu's picture
cjamesfu
Posts: 14
Joined: Sep 2009

Sorry to hear the bad news. But it is OK to cry. Remember the five stages of emotion: denial, angony, negotiation, depression and acceptance? The sooner you get to the stage of acceptance the better. I went through them myself when I was diagnosed with NPC. I allowed myself only five days and never to dwell in one stage more than a day. I constantly checked the status of my emotion so it did not go back and forth. I quickly got to the stage of acceptance. At that time, I was calme and able to cencentrate on the strategy and road map to fight the cancer.

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

24 hours till my PET scan. I seem to be ok and try to be positive until someone calls me to tell me to be positive, then I start crying my eyes out. All this about radiation, and sugery and PEG tubes, frightens me so much. When it is over will I be me again? Even the grumpy me would be good.
Mary

Hondo's picture
Hondo
Posts: 5749
Joined: Apr 2009

Don’t be afraid I been there many of times dealing with this stuff and you know what I am better now then I was then, and you too will be a better person when it is finish no matter what the outcome

marthakmason's picture
marthakmason
Posts: 7
Joined: Feb 2010

Hi Mary. I relate so much to your fears and unbelief that you have cancer. My husband was diagnosed with throat cancer in November 2009, and we were SO shocked! We are both very active hikers and he has been hiking sections the Appalachian Trail. He was feeling fantastic!

When we first got the call I went into sort of a trance - nothing seemed real to me. We couldn't sleep until we finally got the full diagnosis and found out it was probably caused by the HPV-16 virus and was very curable. I immediately got online and learned much more than I could handle about PEG tubes, teeth, weight loss, etc. etc. It scared me to death.... I didn't even tell my husband about all I was learning!

But now he is past his 7 chemos and has only 11 more radiation treatments. The PEG tube is NO BIG DEAL and I highly recommend it! This is not fun, by any means, but you will find some sort of normalcy after the first shock reaction fades.

I have been thankful for the anti-anxiety drug, Ativan. There are times that Kent has really needed some help, and it does the trick. Keep eating! I agree with your husband -- protein!

I'm so glad you are posting on this site. I just joined and I wish I had found it earlier!

Martha

Hondo's picture
Hondo
Posts: 5749
Joined: Apr 2009

Welcome to CSN, I too like most people did not find CSN until I was years passed treatment, but I am so glad to be part of it now.

Take care

pk's picture
pk
Posts: 192
Joined: Aug 2009

Welcome to the site. My husband too was diagnosed with cancer -base of the tongue. He completed his last rad/chemo on Sept. 28th. He had is first PET scan on Jan 5th. and it came back clean - an A+ result. He is now pretty much back to his old self outside of missing a few pounds and his taste is still off. Other than these 2 issues, he is active and not fatigued and can eat anything. Hang in there.
PK

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

Mary- yes, you will be you, again. Trust me- you will emerge from this a better you than you now are. This is typical, with many of us. There really no need to be afraid, though we all have been, to varying degrees. The only real thing in front of you is the business of getting this thing taken care of. You got a job to do, now, and that is priority-one. Try to just focus on that. Trust me, and...

Martha- I also learned to be thankful for the PEG tube. You two have a short ways to go, but the light at the end of the tunnel is just up around the bend. You are close...

Believe.

kcass

marthakmason's picture
marthakmason
Posts: 7
Joined: Feb 2010

Thank you Kent. (My husband is Kent, too) It has been a hard week, but we are trying very hard to focus on the future.

P.S. I like your picture!

Martha

marthakmason's picture
marthakmason
Posts: 7
Joined: Feb 2010

Thank you PK for the encouraging words! I know my husband is as the "sick and tired of being sick and tired" stage. It's good to know life can return to almost normal!!
Blessings!
Martha

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

I had my PET scan today. Laying there in that tube I didnt feel alone. I kept dozing off and I would hear voices from people telling me everything was going to be ok. I would wake up and doze off again, hearing friends and family saying again its all ok. Got up when over and went home and was able to eat. Trying to stay positive here. Wont know results until Monday at 9:45am. Then I will know I guess what all is going to be done for me.
Mary

Hondo's picture
Hondo
Posts: 5749
Joined: Apr 2009

We will all be waiting to hear how your PET went, good or bad, we will all be here for you. Sometimes in out struggles when we have nothing left to give, we need to learn to rest our burdens at the feet of Jesus.

Take Care

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

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

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

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

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

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

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I'm sure all of us here are hoping (and those of us who pray, praying) for a positive result.
Have a nice weekend, and keep your loved ones close.

--Jim, up to his a*s in snowbound Delaware

GRAVEY's picture
GRAVEY
Posts: 84
Joined: Jan 2010

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

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

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

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

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's picture
micktissue
Posts: 432
Joined: Dec 2009

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

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

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's picture
MaryRC
Posts: 114
Joined: Feb 2010

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

ygfilart's picture
ygfilart
Posts: 11
Joined: Feb 2010

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's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

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's picture
MaryRC
Posts: 114
Joined: Feb 2010

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

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