PET scan at end of treatment?

Jewlz
Jewlz Member Posts: 13 Member
in Anal Cancer #1

I am curious as to what scans, etc. everyone received at the end of their treatment.

My insurance is denying my oncologist's request for a PET Scan. (Twice now.) My treatment ended Nov. 2nd, so I am two months out. Insurance is now saying I need a CT scan and then I can do a PET scan. I had a CT scan the last week of October when I was hospitalized.  Their request makes no sense to me.

My rectal surgeon and oncologist don't want to see me until I get my scans complete.

I am quickly becoming frustrated at my insurance company.

Julie

Comments

  • eihtak
    eihtak Member Posts: 1,473 Member
    #2
    Jewlz...

    Hi,

    Firstly congratulations on finishing this treatment, I will pray you are managing any lasting side effects with little or no complications.

    I was initially dx and treated almost 7 years ago with anal cancer stage 3b. As for insurance coverage and follow-up protocal I will tell you it varies quite a bit between doctors, locations, major medical centers vs clinics, etc. I had my only follow-up PET scan one year post treatment and prior to that as well as in the months and years after, only CT scans. Some people are scanned frequently and some very seldom. Digital rectal exams and blood work are often the first line tests done and help to decide if a scan is needed. Fortunately (or un-fortunately) I was dx with breast cancer just one year after the anal cancer and so have been scanned more frequently then some, however, as I said...CT scans.

    It is extremely frustrating, I know, but also a PET scan done too soon following radiation treatment is likely to show "hot spots" that are not actually an indication of a problem but rather residual effects of this treatment and for that reason it seems some prefer to go with CT scans that use a different type of imaging. Often though, if your doctor can provide to your insurance provider a valid reason for ordering the test  (explain why he believes it necessary) the insurance company will reconsider.

    I hope this helps and that others chime in as well. The last thing you need to be dealing with is insurance conflicts when you deserve to be resting and celebrating life!!

    katheryn

  • tanda
    tanda Member Posts: 174 Member
    edited January 2018 #3
    JEWLZ

    NCCN Guidlines recommend Chest/pelvicCT with contrast imaging ANNUALLY for 3 yrs (IF T3-T4 or inguinal node positive ( this is after evaluation in 8-12 weeks with exam and DRE

          a few years ago, scans were recommended more frequently

    While everyone is following the NCCN Guidelines for treatment, surveillancee/ followups are all over the place, Guidelines are just guidelines and doctors(and insurance companies are influencing treatment  decisions...PET scans are expensive.

    I had a PET/CT and CT during  my pre-treatment workup.  I have never had a PET scan for surveillance.  I have had CT Chest/AbdominalPelvic scans every 6 months; I am almost 3 years out and will probably move to an annual scan(which may be too much)

    Radiation keeps working for about 6 months or more; PET scans light up lots of sites that may not be significant.  My Onc  would probably add a pet scan if there were new

    suspicious areas on the CT scan. He does not order PET scans for routine surveillance (but many people on this site have had PET scans)

    You might check with your Drs ; if they want a PET scan, perhaps they can make the case with your insurance company.

    n

  • mp327
    mp327 Member Posts: 4,440 Member
    #4
    JEWLZ

    My first scan at time of diagnosis was a PET/CT scan.  Post-treatment, I had quite a few PET scans.  My medical oncologist was definitely a fan of PET/CT's, which my insurance company paid for for about 3 years.  However, my insurance company then began denying his requests for PET scans, so after that, I had CT scans.  All of that said, my medical oncologist was definitely a "scan man," and I probably had more scans than most anal cancer patients.  While I think he was a great doctor (who unfortunately passed away a couple of years ago), I now believe I was probably over-scanned. 

    I believe the primary reason insurance companies deny PET scans, such as in your case, is cost.  They are expensive and, as we all know, insurance companies take any measures they can to reduce the amount of payments they make.  It's quite likely that a CT scan for you will be adequate, but since I'm not a doctor, you should pose that question to your doctor(s).  If they still believe a PET scan is in your best interest, then have them write to your insurance company and make their case.  My medical oncologist did that once for me and the insurance company approved the PET scan.

    I wish you the best as you try to get this all sorted out. 

  • Jewlz
    Jewlz Member Posts: 13 Member
    edited January 2018 #5
    eihtak said:

    Jewlz...

    Hi,

    Firstly congratulations on finishing this treatment, I will pray you are managing any lasting side effects with little or no complications.

    I was initially dx and treated almost 7 years ago with anal cancer stage 3b. As for insurance coverage and follow-up protocal I will tell you it varies quite a bit between doctors, locations, major medical centers vs clinics, etc. I had my only follow-up PET scan one year post treatment and prior to that as well as in the months and years after, only CT scans. Some people are scanned frequently and some very seldom. Digital rectal exams and blood work are often the first line tests done and help to decide if a scan is needed. Fortunately (or un-fortunately) I was dx with breast cancer just one year after the anal cancer and so have been scanned more frequently then some, however, as I said...CT scans.

    It is extremely frustrating, I know, but also a PET scan done too soon following radiation treatment is likely to show "hot spots" that are not actually an indication of a problem but rather residual effects of this treatment and for that reason it seems some prefer to go with CT scans that use a different type of imaging. Often though, if your doctor can provide to your insurance provider a valid reason for ordering the test  (explain why he believes it necessary) the insurance company will reconsider.

    I hope this helps and that others chime in as well. The last thing you need to be dealing with is insurance conflicts when you deserve to be resting and celebrating life!!

    katheryn

    eihtak

    Thanks for your response. This makes a lot of sense as to why my insurance wants a CT scan and not a PET. 

     

     

  • Jewlz
    Jewlz Member Posts: 13 Member
    #6
    tanda said:

    JEWLZ

    NCCN Guidlines recommend Chest/pelvicCT with contrast imaging ANNUALLY for 3 yrs (IF T3-T4 or inguinal node positive ( this is after evaluation in 8-12 weeks with exam and DRE

          a few years ago, scans were recommended more frequently

    While everyone is following the NCCN Guidelines for treatment, surveillancee/ followups are all over the place, Guidelines are just guidelines and doctors(and insurance companies are influencing treatment  decisions...PET scans are expensive.

    I had a PET/CT and CT during  my pre-treatment workup.  I have never had a PET scan for surveillance.  I have had CT Chest/AbdominalPelvic scans every 6 months; I am almost 3 years out and will probably move to an annual scan(which may be too much)

    Radiation keeps working for about 6 months or more; PET scans light up lots of sites that may not be significant.  My Onc  would probably add a pet scan if there were new

    suspicious areas on the CT scan. He does not order PET scans for routine surveillance (but many people on this site have had PET scans)

    You might check with your Drs ; if they want a PET scan, perhaps they can make the case with your insurance company.

    n

    tanda

    Thanks for responding. I will be moving forward with a CT scan next week and really. I am also going to ask him at my appt on Thursday why he wanted the PET scan. 

  • LindaBaehr
    LindaBaehr Member Posts: 47
    #7
    PETs for Me

    Post treatment, I have been scanned three times (and due for another next month).  My doc always requests PET scans, insurance denies it, he repeats the request, then they give in and do it.  Maybe because my anal cancer had also metastisized to my liver that a PET for me is more sensitive?  I don't know.  

  • Jewlz
    Jewlz Member Posts: 13 Member
    #8
    mp327 said:

    JEWLZ

    My first scan at time of diagnosis was a PET/CT scan.  Post-treatment, I had quite a few PET scans.  My medical oncologist was definitely a fan of PET/CT's, which my insurance company paid for for about 3 years.  However, my insurance company then began denying his requests for PET scans, so after that, I had CT scans.  All of that said, my medical oncologist was definitely a "scan man," and I probably had more scans than most anal cancer patients.  While I think he was a great doctor (who unfortunately passed away a couple of years ago), I now believe I was probably over-scanned. 

    I believe the primary reason insurance companies deny PET scans, such as in your case, is cost.  They are expensive and, as we all know, insurance companies take any measures they can to reduce the amount of payments they make.  It's quite likely that a CT scan for you will be adequate, but since I'm not a doctor, you should pose that question to your doctor(s).  If they still believe a PET scan is in your best interest, then have them write to your insurance company and make their case.  My medical oncologist did that once for me and the insurance company approved the PET scan.

    I wish you the best as you try to get this all sorted out. 

    JEWLZ

    Thanks for replying. I did a CT and PET scan at the time of diagnosis as well. I am a little worred because of the two week break I had to take due to severe readiation burns. I know from reading that any break in treatment can lower your cure rate. Nearing the end of my two week break, I also ended up in the hospital with an anal spasm and bowel obstruction for four days...a CT scan was done at that time of my abdomen and pelvis. Oncologist said it looked like treatment was working. 

  • Dodiefae
    Dodiefae Member Posts: 41 Member
    #9
    Jewlz said:

    JEWLZ

    Thanks for replying. I did a CT and PET scan at the time of diagnosis as well. I am a little worred because of the two week break I had to take due to severe readiation burns. I know from reading that any break in treatment can lower your cure rate. Nearing the end of my two week break, I also ended up in the hospital with an anal spasm and bowel obstruction for four days...a CT scan was done at that time of my abdomen and pelvis. Oncologist said it looked like treatment was working. 

    PET scans

    Hi,

    i am 10 months post treatment and have never had a PET scan (before or after).  Since treatment, I've had a couple pelvic MRIs (and a surgical biopsy).  

    Good luck

  • Mollymaude
    Mollymaude Member Posts: 431 Member
    edited January 2018 #10
    Julie

    I had a PET before treatment but only CTs (yearly) since then. I know it's hard but try not to worry about the break in treatment. That was out of your control. The cure rate is so high that even if it is slightly less effective to have a break, your chances are still excellent that your treatment has gotten rid of all the cancer. I know they say outcome is not as good with the break but I never have seen the studies that back that up. 

Discussion Boards