Hello Fellow Travelers

I went for a 7 month post checkup yesterday with my rad doc.  My question is how often do you guys get scoped and Pet scans post treatment.  They want to scope me every three months and I have refused the last two.

For one thing it seems excessive and I wonder how much they are doing it so they can bill insurance.  Secondly the rad doc says no need for more than one Pet post treatment and the chemo doc says I should have one every six months for two years.  The chemo doc says the scoping is unnecessary and the rad doc says something else.  Its hard to know what to do.

I'm just not open to receiving any bad news at this point. (From the tests)  I'm just getting my sea legs back after all that treatment.  

Wondering what docs around the country are recommending.

Thanks.

Shirley

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Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    i don't have pet scans any

    i don't have pet scans any more and have never been scoped.  i have asked why and they say b/c my larynx is gone so no need to.  personally, i'd feel better if they scoped me.  good luck.

    dj

  • phrannie51
    phrannie51 Member Posts: 4,716
    I only had one PET scan once treatment

    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

  • cureitall66
    cureitall66 Member Posts: 913
    Check-ups

    At the University of Michigan check-ups every 6-8 weeks with the scope for first two years. Xrays of the chest every year. Pet scan after 1 year. Scopes farther apart as the years go on. I find them very assuring and appreciate the questions the doctors ask as well as the physical exam. They can feel and see things I can not. I have a friend who had a recurrence during the first year. Check-ups are a good thing.

    ~C

  • Sunshine60
    Sunshine60 Member Posts: 81
    Scopes

    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.

  • Ladylacy
    Ladylacy Member Posts: 773 Member

    i don't have pet scans any

    i don't have pet scans any more and have never been scoped.  i have asked why and they say b/c my larynx is gone so no need to.  personally, i'd feel better if they scoped me.  good luck.

    dj

    Scoping

    Debbie, my husband was scoped at every follow up with his ENT after radiation and chemo and then by the head and neck specialist after his larynx was removed.   Even the radiologists scoped him on check-ups before and after he had his larynx removed.  He was having PET/CT scans every 3-4 months for the first year.  It was after the first year when he was going to have the TEP insert and esophagus dilation that the H&N specialist found a second primary at the cervical of his esophagus.  Maybe you should ask about a scope at your next visit.

    Sharon

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    belt and suspenders

    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

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Ladylacy said:

    Scoping

    Debbie, my husband was scoped at every follow up with his ENT after radiation and chemo and then by the head and neck specialist after his larynx was removed.   Even the radiologists scoped him on check-ups before and after he had his larynx removed.  He was having PET/CT scans every 3-4 months for the first year.  It was after the first year when he was going to have the TEP insert and esophagus dilation that the H&N specialist found a second primary at the cervical of his esophagus.  Maybe you should ask about a scope at your next visit.

    Sharon

    Sharon, I've asked and was

    Sharon, I've asked and was told it wasn't necessary.  I've even seen 2 other ENTs and rec'd the same reply.  i'm at a loss as nobody feels it is needed.  don't know what else to do.  thank you for your reply.  i feel the same, i just can't find a doctor who does.  at this point i've decided it does not matter b/c if the cancer comes back a 3 time, my plan is to do nothing but live out what life i will have left.  i will go for quality this time, not quantity.

    dj

  • MrsBD
    MrsBD Member Posts: 615 Member
    Follow Ups

    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.

     

  • wmc
    wmc Member Posts: 1,804
    Scopes and Scans

    I was stage 3 SCC supraglotic and blocking one of my vocal cords. [Just before surgery it was T4,N2,M0] I could not servive Rad or surgery, [bad lungs] so they removed my larnyx and that got all the cancer. They also did neck dissection on both sides and took out 86 glands. Because I did not need or receive Rads I will need to be scoped every two months for the first year. My surgen is the head of that dept. Head ENT/ONC/Surgen. It is an all day trip for me, he is 215 miles away and round trip in 10 ~ 13 hrs. He told me to go to my local ENT to be checked every outher time to make it easy on me. [ His concern is my health and that it doesn't come back, not so he can bill insurance] My local ENT agreed and he does not have a scope, he just uses mirrors and feels my neck, throat, ears, and nasil passages. If he even thinks there might be something, he will send me back to Stanford. I did not have RADs so I have never had any PET/CT after surgery. I now go every six months unless something comes up, then I'm back at Stanford ASAP. 

    Now as for not up for receiving any bad news from the tests. No one ever wants to. But not going for the check ups might mean it might catch it two or six months or a year sooner when it's not to late to do anything. If I was not on top of my condition as much as I was, and my doctors listened to me, I would not be here today. I went to a hospital that has a tumor board and they all decide how to treat me. My Dr is the head of it so all go through him. I don't get to hear and arguing or disagreements.. Don't know if this helps but, I was seen one year before by the best Cancer [Chemo] doctor in town and he did blood work to rule out me having cancer as to why I was sick. He said "You do not have any cancer so don't be concerned about it". Well, He was full of ****. I had cancer surgery a year later and it takes over a year to grow that big, he just missed it. I continued to get worse and started coughing up large amounts of blood. Not sure if it is My COPD or GURD.  Now if anyone had sent me to an ENT back then, I might still have a voice box and not breathe through my neck, but I do. So my 2 cents is, don't skip too many checkups, and I wish you good health.

    Bill

  • Sailor123
    Sailor123 Member Posts: 97
    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

  • Sailor123
    Sailor123 Member Posts: 97
    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 don't mean to frighten

    I don't mean to frighten anyone who has had a reoccurance.  I'm not that well informed about second go arounds and wonder what they do in that event.

  • MrsBD
    MrsBD Member Posts: 615 Member
    If it comes back

    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!

  • Sailor123
    Sailor123 Member Posts: 97
    MrsBD said:

    If it comes back

    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!

    MrsBD:
    Thank you for your

    MrsBD:

    Thank you for your response.  I appreciate knowing i'm not alone in this.  

    I actually don't spend much time worrying about the future.  It rattles me once in a while when someone dies or has a reoccurance or a new diagnosis, or I have a doctors appointment, but not for that I really feel like things are going to be fine.

    My mother is a christian and I was so worried if I didn't survive it would shatter her faith, but it didn't come to that.  Keep your faith, its a good thing.

    Shirley 

  • lornal
    lornal Member Posts: 428
    2nd cancer

    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

  • hwt
    hwt Member Posts: 2,328 Member
    lornal said:

    2nd cancer

    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

    Shirley

    I understand your anxiety. I don't get scoped often but when I do, they use a child's scope. I've come to be ok with it when the need occurs. Seems I have more PETs and CTs than most. The first year following tx, I had a PET and then CT every 3 months. Second year I went to 4 months and they found recurrance. Initial cancer of jaw traveled and was wrapped around carotid atery. I went to Mayo Clinic and they did SBRT a five day radiaition tx. Next scan showed it was gone. I have had a PET every 3 months since. The following year, another recurrance was found opposite side around carotid. I had more chemo because there was apparently microsocpic cancer cells out there. I went back to Mayo for another SBRT tx and scans since have been clear.   Tx for the recurrances was much easier on me than initial tx. Had it not been for scans, and because the carotid arteries were involved, it would have taken my life. For that reason, I encouage scans. Having said all that, recurrance in that area is not unheard of but certainly not common. 

  • wmc
    wmc Member Posts: 1,804
    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

    Yes there is a chance it could come back...

    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

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Shirley

    My ENT scopes me every time I see her to check and make sure nothing new is there. I am 9 years passed my last treatment so I no longer do PET scan my ENT prefers to do MRI only if needed, I guess that is why she scopes me every time I see her.

    Glad to hear your sea legs are back, it took me a while before I could get back out on the open water.

     

    Tim

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    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

    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
    sharon 1 Member Posts: 50
    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. 

  • wmc
    wmc Member Posts: 1,804
    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. 

    Welcome to the H&N Group of the CSN.....

    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