PET/CT vs CT

nancy591
nancy591 Member Posts: 1,027 Member
edited March 2014 in Ovarian Cancer #1
I am wondering why a PET/CT is not the choice diagnostic tool when monitoring for recurrence. A PET/CT caught my recurrence early. The CT portion showed all clear but the PET portion showed hybermeatabolic area. On my most recent PET/CT, the CT portion showed my primary recurrent spot to be IMPROVED but the PET portion showed increased metabolic activity to all three areas. My oncologist said based on the CT alone she wouldn't have changed my chemo. I find this really interesting and disturbing at the same time. Is a PET/CT not the tool of choice because treating earlier does not improve overall life expectancy? Just wondering what everyone thinks.

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  • seb44
    seb44 Member Posts: 4
    thank you for writing about pet/ct scans
    Whenever you write about pet/ct scans my curiosity rises. I mentioned pet/ct to my sister (OC 3c) and today I am going to print out internet info and mail it to her. Thanks to you and all of you who post on this site.
  • tmc576
    tmc576 Member Posts: 60 Member
    seb44 said:

    thank you for writing about pet/ct scans
    Whenever you write about pet/ct scans my curiosity rises. I mentioned pet/ct to my sister (OC 3c) and today I am going to print out internet info and mail it to her. Thanks to you and all of you who post on this site.

    I'm new to all this, but I
    I'm new to all this, but I know that my mom's pet scan showed NO cancer at all, when she had tumors on bother ovaries, uterus, small bowel, diaphram, etc. In simple terms, the doctor explained that a pet scan shows cancer cells, because they attract glucose (which you are given prior to the scan), so the cancer "lights up" on the scan. However, my mom is diabetic, and her body and cancer cells were already used to higher than normal glucose levels - so the cancer did not attract the extra glucose and show up on the scan. If it weren't for the fact she already had a tumor removed that showed up right under the skin in her upper abdomen, which was typed as OVCA, they might not have proceeded with surgery. Just throwing that info out there.
  • ten101
    ten101 Member Posts: 14
    treating earlier
    Nancy I note at the end of your comment about the treating earlier not prolonging the final outcome. I was at a conference at NYU this weekend and the study about that showed no difference with earlier treatment has quite a few detractors. It seems the study was done in England and treatment protocols there are very limited in the national health care system, they only use two or three drugs. They do not have the variety of treatments that are being used in the U.S. so if studies done here now results may show something very different. Just more food for thought like there's not enough of that already.

    Mary Carol
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    ten101 said:

    treating earlier
    Nancy I note at the end of your comment about the treating earlier not prolonging the final outcome. I was at a conference at NYU this weekend and the study about that showed no difference with earlier treatment has quite a few detractors. It seems the study was done in England and treatment protocols there are very limited in the national health care system, they only use two or three drugs. They do not have the variety of treatments that are being used in the U.S. so if studies done here now results may show something very different. Just more food for thought like there's not enough of that already.

    Mary Carol

    Mary Carol: do you have web address for the new study?
    I've been basing my tendency to 'watch and wait' when little things light up on my CT/PET scan on the earlier study that said that life expectancy is not increased by initiating treatment before physical evidence is there (i.e. treating on CA125 and PET alone). If that earlier study has been refuted, that would be important to my decision-making on my treatment. If you know a place on the web that I can read these new findings, please let me know so I'm not basing my choices on outdated information. Thanks!

    I have had 3 CT/PET scans, all covered by my private insurance (My clinic billed them an astounding $25,000 each and they accepted the $22,000 each that the insurance paid. What a money-maker for the hospital!!) I think the FDA approved PET scans for ovarian and uterine cancer last spring; I know it was up for approval at that time. My chemo-onc was very much against them until he knew my insurance would cover them; now it's his "go-to" diagnostic test that I get every 3 months. The problem with PET scans is that studies have reported about 45% false-positive when tumors are smaller than 1 cm. They are very accurate when tumors are larger than that, but little things can light up all over, especially if you don't do a couple days of no carbohydrates and no exercise prior to the scan.
  • nancy591
    nancy591 Member Posts: 1,027 Member

    Mary Carol: do you have web address for the new study?
    I've been basing my tendency to 'watch and wait' when little things light up on my CT/PET scan on the earlier study that said that life expectancy is not increased by initiating treatment before physical evidence is there (i.e. treating on CA125 and PET alone). If that earlier study has been refuted, that would be important to my decision-making on my treatment. If you know a place on the web that I can read these new findings, please let me know so I'm not basing my choices on outdated information. Thanks!

    I have had 3 CT/PET scans, all covered by my private insurance (My clinic billed them an astounding $25,000 each and they accepted the $22,000 each that the insurance paid. What a money-maker for the hospital!!) I think the FDA approved PET scans for ovarian and uterine cancer last spring; I know it was up for approval at that time. My chemo-onc was very much against them until he knew my insurance would cover them; now it's his "go-to" diagnostic test that I get every 3 months. The problem with PET scans is that studies have reported about 45% false-positive when tumors are smaller than 1 cm. They are very accurate when tumors are larger than that, but little things can light up all over, especially if you don't do a couple days of no carbohydrates and no exercise prior to the scan.

    Memorial Sloan Kettering
    Memorial Sloan Kettering does not offer any dietary suggestions in the days leading up to the PETSCAN. The only dietary restiction is no food or drink, except water, 6 hours prior to the test. My recurrence was 13mm...milimeters!! It lit up on the PET and was confirmed by biopsy. My hospital bills 3,420 for the PET (skull to thigh) and $750 for the contrast medium.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    nancy591 said:

    Memorial Sloan Kettering
    Memorial Sloan Kettering does not offer any dietary suggestions in the days leading up to the PETSCAN. The only dietary restiction is no food or drink, except water, 6 hours prior to the test. My recurrence was 13mm...milimeters!! It lit up on the PET and was confirmed by biopsy. My hospital bills 3,420 for the PET (skull to thigh) and $750 for the contrast medium.

    My husband just corrected me: my insurance pays $13,000
    I just asked my husband because we are clearly being charged so much more for everything here. We are billed $25,000 for the CT/PET (inclusing contract & the staff time) but my insurance only (ONLY!) pays $13,000 and they accept that. I go to Geisinger, which President Obama has cited numerous times on TV as an example of "a small rural hospital that manages to run fiscally sound." They must do that by charging those with private insurance enough to supplement those on MA, and by giving each oncologist a HUGE case load.

    Nancy, according to that study I read, with a tumor that tiny lighting up on a PET, you had a 45% chance it could have come up as benign in biopsy. That was just one study. But what a happy surprise that would be for anyone!
  • ten101
    ten101 Member Posts: 14

    Mary Carol: do you have web address for the new study?
    I've been basing my tendency to 'watch and wait' when little things light up on my CT/PET scan on the earlier study that said that life expectancy is not increased by initiating treatment before physical evidence is there (i.e. treating on CA125 and PET alone). If that earlier study has been refuted, that would be important to my decision-making on my treatment. If you know a place on the web that I can read these new findings, please let me know so I'm not basing my choices on outdated information. Thanks!

    I have had 3 CT/PET scans, all covered by my private insurance (My clinic billed them an astounding $25,000 each and they accepted the $22,000 each that the insurance paid. What a money-maker for the hospital!!) I think the FDA approved PET scans for ovarian and uterine cancer last spring; I know it was up for approval at that time. My chemo-onc was very much against them until he knew my insurance would cover them; now it's his "go-to" diagnostic test that I get every 3 months. The problem with PET scans is that studies have reported about 45% false-positive when tumors are smaller than 1 cm. They are very accurate when tumors are larger than that, but little things can light up all over, especially if you don't do a couple days of no carbohydrates and no exercise prior to the scan.

    Linda, sorry for the late reply
    I do not have a website on this information. A panel discussion at a conference at NYU Medical Center and all of the doctors were skeptical of the results due to the limited treatment options for the patients involved. You might ask your doctors about the details of the study done in England. My feeling would be to attack any cancer as aggressively as reasonably possible and the sooner the better just for my mental outlook that I would be doing something about it. On the other hand, I wouldn't want to think the worst every time a test came back showing something without knowing exactly what is going on.
  • upsofloating
    upsofloating Member Posts: 466 Member

    My husband just corrected me: my insurance pays $13,000
    I just asked my husband because we are clearly being charged so much more for everything here. We are billed $25,000 for the CT/PET (inclusing contract & the staff time) but my insurance only (ONLY!) pays $13,000 and they accept that. I go to Geisinger, which President Obama has cited numerous times on TV as an example of "a small rural hospital that manages to run fiscally sound." They must do that by charging those with private insurance enough to supplement those on MA, and by giving each oncologist a HUGE case load.

    Nancy, according to that study I read, with a tumor that tiny lighting up on a PET, you had a 45% chance it could have come up as benign in biopsy. That was just one study. But what a happy surprise that would be for anyone!

    Just an fyi... 13 mm = 1.3
    Just an fyi... 13 mm = 1.3 cm ;-) (10 mm = 1.0 cm)
  • msfanciful
    msfanciful Member Posts: 559
    Hi Nancy,
    I hope all is well

    Hi Nancy,

    I hope all is well with you.

    I've often wondered also, am I shortening my life? Because I have never had a PET/CT, due in part to my insurance not covering it at the time. I will check on the status of that since things are changing these days with insurance issues.

    I've always had regular CTs however.

    I will ask my oncologist her opinion about this and throw more info on this into the pot.

    Take care,

    Sharon