Need to make a decsion

jtl
jtl Member Posts: 456

I will be 4 years post treatment this November.  My last CT/PET was over a year ago.  Medicare will only pay for 3 PET scans and I have had my limit.  Here is my dilemma.  My rad onc does not think it is necessary to have any further scans, but my ENT would like to see me continue with scans up to the 5 year mark.  They are in agreement that any recurrence at the primary site would be obvious during my twice per year oral exams but the ENT wants to be sure there is no metastasis to another location since I did have at least one lymph node that was affected.  All of my scans and oral exams have be NED but I am kind of leaning toward at least one more scan even though I will have to pay for it.  I am also going to check on whether just a CT scan would be sufficient.  Interestingly Medicare will pay for one diagnostic CT scan if you have smoked within the last 15 years ( I quit about that long ago), but I am not sure if it covers anything beyond the chest area and my CT/PET scans have been "eyes to thighs".

Are you getting scans up to the 5 year mark and are they PET or CT or both?

John

Comments

  • rcaulder
    rcaulder Member Posts: 70
    Seems simple

    I would pay it for peace of mind. Would you really want to go threw this all over again if it seeded and spread to the lungs etc. Just go on a payment plan.

  • wmc
    wmc Member Posts: 1,804
    Expensive choice to make.

    First let me say I would not get it if I was given that choice. I only had surgery so they got it all and never did chemo or radiation so my thinking can be different than some that had Radiation to kill it. I have never had a PET/CT after I got out of the hospital, only the one before surgery. You have had Three and all were clear. This is why insurances don't want to many of them. I know the prices differ but where I went the bill without insurance would have been $12,000. If they do ever see anything then they can request one because you "Have " cancer. Hope this helps in some ways. I would be willing to bet if that doctor had to pay, he would not say you need one.

    Bill  Oct 2013   20 months NED

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    3 scan limit

    Is that per occurrence of cancer or every five years or what?

    My husband had no scans after the first three years.  He has both Medicare and private insurance.  His oncologist released him after 4 years but his ENT has not yet and scopes him every few months.

  • hwt
    hwt Member Posts: 2,328 Member

    3 scan limit

    Is that per occurrence of cancer or every five years or what?

    My husband had no scans after the first three years.  He has both Medicare and private insurance.  His oncologist released him after 4 years but his ENT has not yet and scopes him every few months.

    John

    My recurrance was first found with a CT scan.

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

    My ENT prefers doing the CT and only then if something is a little out of order will request an MRI. It is a hard call to make sometimes but the way I look at it is what ever you decided will be the right choice for you. I believe my last MRI was a little over $4,000 insurance paid half and the PPO discount was about $1,800 so my out of pocket was only 200 bucks. Sometimes you can talk them down to being treated like if you are in network, but you need to do it before you take the MRI.

     

    Tim

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Six Years Post

    My ENT is not big on CT or PET after year two actually..., he doesn't like the excess exposure.. But my onco ordered a CT and PET rotating every six months for the first five years.. PET, then a CT after six months, next scan would be a PET...

    She still has me doing a CT every six months..

    Some of that now I believe (I'm 6 1/2 years post Tx), comes from having the Pancreas tumor that was found (benign pre-cancerous) at five years post.

    But anyways...

  • osmotar
    osmotar Member Posts: 1,006
    Insurance

    my insurance about a year or maybe a tad more deemed PET scans medically unnecessay, and will only approve CTs that I get every 6 months a few days prior to seeing my oncologist and ENT...my oncologist also has me get a chest X-ray , all have been clear..So who knows...I will be 4 yrs out of treatment in December.

    linda 

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Insurance

    My husband is on Humana Medicare Advantage.  When first diagnosed 5 years ago, he was having PET/CT scans every 3-4 months without problems about payment.  I would say in total he had about 8 PET/CT scans in a 2 1/2 year period.   After undergoing treatment for a second primary and spread he declined all further treatment and that was 3 years ago.  So I can't say what Medicare allows anymore.  All I know is that each doctor has different procedures and protocols that they follow.  My husband's second primary was found during a procedure to have a TEP inserted for talking.

    I know Medicare has set new guidelines due to Obamacare funds being taken from Medicare.  I also think it is all in how your doctor codes the need for the procedure.  I know PET/CT scans done together are very expensive, but then again what procedure isn't.

    I also know that when our youngest son was diagnosed with kidney cancer, that his insurance would never approve a PET scan but does approve a CT scan once a year and he is 6 years NED.

     

  • jtl
    jtl Member Posts: 456
    Thanks for all of the input

    Matt, yes time does fly, glad you are doing well.  I am HPV+

    Bill, the cost of a CT/PET combo through Medicare is pretty reasonable.  When I sign the papers at the place that does the scans there is a section that says if Medicare does not pay I will be responsible for a payment of $1600.

    Noellesmom, the 3 scan limit is what Medicare allows for diagnostic scans of the original cancer.  A recurrence would restart the allowance.

    Hwt, i think a CT scan alone would usually be sufficient but in my case the primary was such that it took a PET scan to locate it so I am a little reluctant to rely on a CT alone.

    Tim, I have never had an MRI, just CT/PET.

    John, just the opposite for me.  The ENT says do it and the rad onco says nay.  I too am concerned about excess radiation.  God only knows we have all had plenty.  I read about your pancreas issue, what an ordeal. I believe you said that it was not related to the scchn, is that correct?

    Ladylacy, the 3 scan rule is fairly new and only pertains to the traditional Medicare, not the Advantage plans which are HMO's and can chose to make there own decisions.  Sometimes they are better and sometimes not so.  I chose to stick with traditional Medicare with a supplemental policy to cover deductibles and copays so I have zero out of pocket.  I was concerned that my choice of doctors would not be available in an Advantage plan but it would have been less expensive.  At least with Medicare I can go anywhere in the country for treatment providing they accept Medicare.  Not many people on this forum are on Medicare from what I know.  

    As an aside.  I am amazed at how many people that I know personally have been diagnosed with scchn.  My best friend in FL was diagnosed a year after me and had a jaw resection followed by radiation and Erbitux and is currently doing well,  my neighbor a few houses down my street also had a jaw resection and chemo and is 5 years post NED, a seasonal neighbor across the street had a jaw resection, grafts to his tongue after a recurrence and is now on a permanent trach and feeding tube.  Now my one of my best friends in Minnesota starts rads and chemo tomorrow at the Mayo clinic for scchn.  

     

    Good luck to everyone.

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    I'm three years out...

    I see my ENT every 2 months for a lookie, pokie and feel....see the Onc every 6 months....and have had a scan every 6 months (until this next one whiche will be 8 months).....but haven't had a PET since 3 months out of threatment. I've been getting CT, with and without contrast....and only my head.  Because of the 6 month CBC, my liver is fine (that's what they tell me, that my numbers would tell)...haven't a clue about my lungs but there seems to be no indications.  My Onc did tell me I could go into Imaging and ask for an Xray....I haven't done that tho.

    I'll be on Medicare starting in Sept....so I'm glad to know that they will pay for 3 of them....at least for 2015....who knows what it'll be next year.....

    Can they CT a whole body?  Just wondering if that is feasable???

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    the decsion is all yours

     

    John,

    Your 4yr post is my 4yr beginning, how time flys.

    I have read your diagnosis and if you are not HPV positive, I might require a PET scan for peace of mind.  The only reason I say that is because HPV likes certain cell types and it does not travel so readily. That’s not to say HPV does not spread the cancer.

    I’ve had two PET scans and three CT scan over the last 3 ½ years  I’ve only had the oral exam for the last year and I hope it is enough.  If I felt at all strange I would request one and I am almost sure my radiation oncologists or my ENT would sign off (read between the lines).

    Since joining the cancer world we each know how unpredictable it is.  There is a lot to be said about catching it early. No matter how good I feel it’s never completely out of mind

    Maybe, 10 of us could go in together and get a discount?

    Good luck, 

    Matt.

     

  • hwt
    hwt Member Posts: 2,328 Member

    I'm three years out...

    I see my ENT every 2 months for a lookie, pokie and feel....see the Onc every 6 months....and have had a scan every 6 months (until this next one whiche will be 8 months).....but haven't had a PET since 3 months out of threatment. I've been getting CT, with and without contrast....and only my head.  Because of the 6 month CBC, my liver is fine (that's what they tell me, that my numbers would tell)...haven't a clue about my lungs but there seems to be no indications.  My Onc did tell me I could go into Imaging and ask for an Xray....I haven't done that tho.

    I'll be on Medicare starting in Sept....so I'm glad to know that they will pay for 3 of them....at least for 2015....who knows what it'll be next year.....

    Can they CT a whole body?  Just wondering if that is feasable???

    p

    P

    My CTs are always twofold, head and neck and chest.

  • jtl
    jtl Member Posts: 456

    I'm three years out...

    I see my ENT every 2 months for a lookie, pokie and feel....see the Onc every 6 months....and have had a scan every 6 months (until this next one whiche will be 8 months).....but haven't had a PET since 3 months out of threatment. I've been getting CT, with and without contrast....and only my head.  Because of the 6 month CBC, my liver is fine (that's what they tell me, that my numbers would tell)...haven't a clue about my lungs but there seems to be no indications.  My Onc did tell me I could go into Imaging and ask for an Xray....I haven't done that tho.

    I'll be on Medicare starting in Sept....so I'm glad to know that they will pay for 3 of them....at least for 2015....who knows what it'll be next year.....

    Can they CT a whole body?  Just wondering if that is feasable???

    p

    3 scans

    I think you will like Medicare but it will take some time to figure out whether you want pure Medicare or Medicare Advantage or traditional Medicare with a suppemental policy.  Medicare Part D (prescription drug coverage) is ok but not great.

    I am not sure how the 3 scan rule works it you have already been treated for scchn, they may count the previous scans.

     

  • phrannie51
    phrannie51 Member Posts: 4,716
    jtl said:

    3 scans

    I think you will like Medicare but it will take some time to figure out whether you want pure Medicare or Medicare Advantage or traditional Medicare with a suppemental policy.  Medicare Part D (prescription drug coverage) is ok but not great.

    I am not sure how the 3 scan rule works it you have already been treated for scchn, they may count the previous scans.

     

    I signed up today...

    for a supplement....didn't feel comfortable doing an Advantage plan, until I hit 5 years on the cancer remission....I only take bone pills and thyroid now, so got the Walmart plan....

    Does Medicare count CT's?  Or just the PET scans?  I'm hoping for unlimited CT's.....save the PETS for if something happens.

    p

  • TracyLynn72
    TracyLynn72 Member Posts: 839
    jtl said:

    Thanks for all of the input

    Matt, yes time does fly, glad you are doing well.  I am HPV+

    Bill, the cost of a CT/PET combo through Medicare is pretty reasonable.  When I sign the papers at the place that does the scans there is a section that says if Medicare does not pay I will be responsible for a payment of $1600.

    Noellesmom, the 3 scan limit is what Medicare allows for diagnostic scans of the original cancer.  A recurrence would restart the allowance.

    Hwt, i think a CT scan alone would usually be sufficient but in my case the primary was such that it took a PET scan to locate it so I am a little reluctant to rely on a CT alone.

    Tim, I have never had an MRI, just CT/PET.

    John, just the opposite for me.  The ENT says do it and the rad onco says nay.  I too am concerned about excess radiation.  God only knows we have all had plenty.  I read about your pancreas issue, what an ordeal. I believe you said that it was not related to the scchn, is that correct?

    Ladylacy, the 3 scan rule is fairly new and only pertains to the traditional Medicare, not the Advantage plans which are HMO's and can chose to make there own decisions.  Sometimes they are better and sometimes not so.  I chose to stick with traditional Medicare with a supplemental policy to cover deductibles and copays so I have zero out of pocket.  I was concerned that my choice of doctors would not be available in an Advantage plan but it would have been less expensive.  At least with Medicare I can go anywhere in the country for treatment providing they accept Medicare.  Not many people on this forum are on Medicare from what I know.  

    As an aside.  I am amazed at how many people that I know personally have been diagnosed with scchn.  My best friend in FL was diagnosed a year after me and had a jaw resection followed by radiation and Erbitux and is currently doing well,  my neighbor a few houses down my street also had a jaw resection and chemo and is 5 years post NED, a seasonal neighbor across the street had a jaw resection, grafts to his tongue after a recurrence and is now on a permanent trach and feeding tube.  Now my one of my best friends in Minnesota starts rads and chemo tomorrow at the Mayo clinic for scchn.  

     

    Good luck to everyone.

    John

    I've never had a PET scan

    I have only had CT scans when they first found my tumor.  Two surgeries, a feeding tube and 30 rads later...with NO insurance!  I did payment plans, got help from Medicaid and talked down all I could. I'm still making payments, but am alive to do so and I try not to complain.  I'm two years out and all I get now are neck/chest xrays.  I'd love them to do a scan or at least xray of my HEAD...where the cancer actually was, but they don't feel it's needed.  They feel all is well with the exam they do every 2-3 months. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    John, I don't get scans

    John, I don't get scans either and haven't since the first year.  Hell, my doctor doesn't even poke and prod when I see him.  I thought that was strange so I saw two other docs but nope, they didn't either.  they all said no reason too unless there is a problem.  so, while i am not really comfortable with that the docs seem to be.  wishing you the best.

    dj

  • jtl
    jtl Member Posts: 456

    I signed up today...

    for a supplement....didn't feel comfortable doing an Advantage plan, until I hit 5 years on the cancer remission....I only take bone pills and thyroid now, so got the Walmart plan....

    Does Medicare count CT's?  Or just the PET scans?  I'm hoping for unlimited CT's.....save the PETS for if something happens.

    p

    Supplement Plan

    I took the supplement just before I was diagnosed and I am glad I did.  I chose the "plan F" and have never seen a doctor bill.  The supplement plans are usually more expensive but you can go anywhere in the U.S that takes Medicare without any referrals or extra charges.  I really like that flexiblity for a little more $$.

    Check out SilverScript for your part D, it was the cheapest I could find.  I only take Lipitor (generic).

    I think Medicare counts all scans but I don't know for sure.  I have an appointment on Monday with my ENT I will see if he knows the answer.  He wants me to get the CT/PET.  I do know if there is a suspicion of something going on you can get a PET or CT or both covered under Medicare.  They just don't want to continue paying for expensive routine scans.

  • jtl
    jtl Member Posts: 456

    John, I don't get scans

    John, I don't get scans either and haven't since the first year.  Hell, my doctor doesn't even poke and prod when I see him.  I thought that was strange so I saw two other docs but nope, they didn't either.  they all said no reason too unless there is a problem.  so, while i am not really comfortable with that the docs seem to be.  wishing you the best.

    dj

    Seems a little unusual

    However you appear to be doing fine and that is all that counts.  Scans are great when we get the NED but there is always a chance of a false positive creating more tests and more anxiety which we don't need.  

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    jtl said:

    Thanks for all of the input

    Matt, yes time does fly, glad you are doing well.  I am HPV+

    Bill, the cost of a CT/PET combo through Medicare is pretty reasonable.  When I sign the papers at the place that does the scans there is a section that says if Medicare does not pay I will be responsible for a payment of $1600.

    Noellesmom, the 3 scan limit is what Medicare allows for diagnostic scans of the original cancer.  A recurrence would restart the allowance.

    Hwt, i think a CT scan alone would usually be sufficient but in my case the primary was such that it took a PET scan to locate it so I am a little reluctant to rely on a CT alone.

    Tim, I have never had an MRI, just CT/PET.

    John, just the opposite for me.  The ENT says do it and the rad onco says nay.  I too am concerned about excess radiation.  God only knows we have all had plenty.  I read about your pancreas issue, what an ordeal. I believe you said that it was not related to the scchn, is that correct?

    Ladylacy, the 3 scan rule is fairly new and only pertains to the traditional Medicare, not the Advantage plans which are HMO's and can chose to make there own decisions.  Sometimes they are better and sometimes not so.  I chose to stick with traditional Medicare with a supplemental policy to cover deductibles and copays so I have zero out of pocket.  I was concerned that my choice of doctors would not be available in an Advantage plan but it would have been less expensive.  At least with Medicare I can go anywhere in the country for treatment providing they accept Medicare.  Not many people on this forum are on Medicare from what I know.  

    As an aside.  I am amazed at how many people that I know personally have been diagnosed with scchn.  My best friend in FL was diagnosed a year after me and had a jaw resection followed by radiation and Erbitux and is currently doing well,  my neighbor a few houses down my street also had a jaw resection and chemo and is 5 years post NED, a seasonal neighbor across the street had a jaw resection, grafts to his tongue after a recurrence and is now on a permanent trach and feeding tube.  Now my one of my best friends in Minnesota starts rads and chemo tomorrow at the Mayo clinic for scchn.  

     

    Good luck to everyone.

    John

    Whipple...

    Hey John..,

    Right the pancreas issue was just picked up actuslly on some of those scans I mentioned above. It had been there for awhile, and it didn't really seem to increase or become active until they started poking and probing around on it.

    Then it started to increase in size and become an issue they wanted to get rif of before it turned into something worse..

    Sometimes bad luck seems to be all we have...

    But all is well finally and I'm good to go, and maybe a little better than before.

    Best,

    John