Hello Fellow Travelers

was over....but have had CT scans every 6 months.  My Oncologist says I really don't have to do that....so my next one won't be until August....after that maybe once a year.  I went to my ENT every month for a check up until December 2014.....so that was 2 years and 3 months....I chose that, however....I think every 3 to 6 months for that is the norm.  I see the rad doc once a year. 

I think they keep really good track of patients until they cross that critical 2 year mark....at two years out, your chances of a recurrance go WAY down.

p

My husband was scoped every 3 months the first year, now every 6 months.  This is done by his ENT oncologist at his office.  I'm not sure what the norm is, but my husband  no longer meets the criteria to get  a PET or other screening tools used when he was diagnosed so I don't think he minds much. He was a stage 3 unknown primary so that may be why they are still scoping.

Shirley,

First 2y post, appointments every 3m (scope, feel and interview every appointment), 2 PET (1 my request), 3 CT scans (ENT ordered out of concern).  After 2y, appointments every 6m (scope, feel and interview) scans as-needed.

I DID NOT feel the original cancer ulcer on my tongue, but it was there and visible by scope.  Luckily, I had a lymph node enlarge to alert danger (stage IVa was bad enough).

While a scope is not fun; as long as they lube it up and mist my nasal passages it is not bad and I would estimate to be less invasive then at PET scan (which has a place in cancer diagnosis and post maintenance).

Once bitten, twice shy.

Matt

My doctors follow the NCCN  Guidelines Version 2.2013 for Head and Neck Cancers. You can Google it. I had a 3 month PET and a scope. They will do another scope in 3 months and may do a PET scan. It seems everyone is different, but I do like the peace of mind from frequent follow up scopes.

You are not alone in worrying about what happens if it comes back! I've had the same thoughts and the "What if the treatment didn't work " line of thinking before my followup  PET scan. How could we go through this again? I also wondered if you can have radiation again or if they use different chemo or do surgery. Somewhere I read that you can train yourself not to dwell on those worries. The advice was to let yourself worry for a specific amount of minutes and then get involved in another activity. I believe that God loves me and has good in store for me, so I pray. This cancer is a real test of my trust in God's promises! This discussion group is a blessing as I think you will hear positive comments from lots of survivors. Hey, as of a week ago, I'm a survivor too!

I am one year out now (on the 16th) from my second cancer - I don't think they considered it a recurrance though.

I had been having symptoms for 18 months - all attributed to radiation scar tissue from the first cancer in 2007.  I had scopes, CT scans, barium swallow - just about everything but a PET scan - wish now I would have pushed for it.  (I have a different ENT now - so, I'm sure he knows exactly how I feel about getting PET scans!)

Its not over for me!  I didn't have radiation this time - I'm saving it for the next.

I was scoped at the end of August, had a clean PET scan at the end of November, several clean CT scans.  I will get scoped again in March

Lung xrays are important now - you should be getting those yearly.

I'm for taking any exams or tests they'll let me have - I want to catch the next one early.

Lorna 2007 & 2014

Sailor123 said:

Thank you all.
 It seems i'm

Thank you all.

 It seems i'm really outnumbered on this topic.  I probably should have let him do it.

I just now feel i'm getting my life back and its hard to imagine starting another round of treatment or surgery.  What I have read has lead me to believe that if it comes back its pretty much game over.  Is it true that we can buy time, but not a cure after a reoccurance?  Has anyone out there had a reoccurance and was it in the same location as the original tumor?  Do you still have quality of life and feel that you are cured?

Right now I feel i'm too busy enjoying life (finally) to be chasing it.

I will get scoped next time.

I got my PEG tube out today.  Mother trucker, I wasn't expecting that.

Shirley

I have a 75% chance it won't ever come back. Thats great odds. When I go to get checked, I'm not worried they will find anything. Now if they do, I'll fight it as well. There are many that have had 2 and three times and they just fight it.

Only five people thought I would make it. The surgen, myself, and my wife, and two friends. My Son and Brother and 200 co-workers thought they would never see me again. I knew I would be fine, and yes I was scared, but it wasn't my time.

Live today and don't worry about the what if. You see I have Emphysema stage 3 and you can't beat that. I did beat the cancer, so each day is special to me, and should be to you as well.

Bill

Sailor123 said:

Thank you all.
 It seems i'm

Thank you all.

 It seems i'm really outnumbered on this topic.  I probably should have let him do it.

I just now feel i'm getting my life back and its hard to imagine starting another round of treatment or surgery.  What I have read has lead me to believe that if it comes back its pretty much game over.  Is it true that we can buy time, but not a cure after a reoccurance?  Has anyone out there had a reoccurance and was it in the same location as the original tumor?  Do you still have quality of life and feel that you are cured?

Right now I feel i'm too busy enjoying life (finally) to be chasing it.

I will get scoped next time.

I got my PEG tube out today.  Mother trucker, I wasn't expecting that.

Shirley

hi Shirley.  i am also a survivor of a recurrence of laryn cancer.  2/28/15 will be 3 yrs cancer free for me so you definitely have the wrong info.  recurrence is not a death sentence.  it is very important to catch it as soon as possible though so please don't skip appts.  nobody knows if the cancer will come back but if it does, catching it is key. 

God bless you,

dj

sharon 1 said:

So many questions

I have throat cancer(HPV) and have had 3 bouts of radiation and 1 round of chemo(cysplatin). I have a very hard time breathing out of my left sinus so the dr has me on some steroids that help a bit. I am new to this site so please bear with me. I feel like crap and although its only my first week, I am so petrified of starting my 2nd week. I am so blessed to have found this site. I  havnt had much vomiting but my throat is very sore and the ent said next week will be very painful so any advice for that would be helpful. Still getting used to this feeding tube dangling, I havnt used it to feed with yet, but from what I have read I will be glad to have it in place. Well, I just wanted to get to know you all and thank you for your help before hand. 

Let me say WELCOME, and i'm sorry you need to be here.

Please coppy what you wrote and POST NEW Form  [ http://csn.cancer.org/node/add/forum/164 ] so the ones that have responded to this will see yours.

Mine was Stage 3 SSC  supraglottic and only had surgery to remove the tumor and my larnyx [voice box] along with a radial neck dissection to remove 86 lymph glands as a precaution. Kinda cut from ear to ear, but never had Radiation or chemo. Most everyone else here has and they can answer your questions on that better than I can. You are going down a very bumpy road, but you can do it and come out and beat this. So many heve been down this road before you. You will get answers, and so much support here from people who have been their and really know what you're feeling. You need to get a BIG Attitude that you are going to beat anything that comes. Belive me it helps, oh, and so do prayers. Mine were answered so much more than I ever hoped they could be. So for now I'll add you and your family to my list.

Remember to re-post so the others don't miss this one of yours.

Bill