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Thread: PET scan vs. CT scan

  1. #1
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    PET scan vs. CT scan

    I had a clean PET scan last December. My onc ordered up a next PET scan for April. My insurance company (Anthem/Blue Cross California) will not approve a PET scan for surveillance, that is, for a patient without symptoms. I guess the insurance company's point of view, FWIW, is that it will approve a CT scan, cheaper than a PET scan, and if the CT scan shows anatomical changes then it will approve a PET scan to look for metabolic changes. My onc seemed blasť about the insurer's disapproval of the PET scan, then conflated a couple of new issues: (i) new thinking is that DLBCL patients shouldn't get any more diagnostic radiation than necessary, and (ii) six months between scans is good enough. So, I went from an appointment for a CT/PET scan to April to an appointment for a CT scan in June.

    Poking around the internet a little bit reveals that insurance company approval/disapproval of PET scans is a common issue over here.

    I'm curious: for those in remission, are your follow-up scans PET or CT? Assuming NED, how frequently do you get scans? I'm interested in the experience of those outside the States, as well as the experience of those who deal with our world-famous American insurance companies.
    Diagnosed at 57 years old on December 7 '09 with DLBCL, stage III, bulky
    Completed 8 cycles of R CHOP 21 May 24 '10
    Completed 18 sessions of radiation July 21 '10
    NED since May of '10

  2. #2
    Administrator Top User ChemoMan's Avatar
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    Hi Schnauzer

    I am coming up to 3 years remission. I had my last Pet over a year ago and I am not able to get them anymore under the national health scheme. I can have as many CT's as I like but I have declined any further scans. My doc keeps telling me that I will know if I have a relapse, so I am not particularly concerned with this. CT scans give a hefty dose of radiation and should be used carefully especially if there is a possibility you will need radiotherapy in the future.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  3. #3
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    My insurance (Kaiser Colorado) will cover PET scans every 6 months, so our plan is to do alternating CT/PET scans every 3/6 months. My next one will be a CT in about 2 months or so, since I started with a PET. And this was approved with me having NED.

    David
    David
    Age 43
    March 1, 2011 - Grade 1 Follicular Lymphoma from node removed from neck.
    2/22 PET/CT scan revealed one additional node in groin - also removed.
    Officially Grade 1 / Stage 3 due to second node.
    No Other Evidence of Disease.
    7/8 PET/CT shows two new small nodes - opposite sides, neck and groin.
    1/06/12 Completed Rituxan x 4 Monotherapy. 2/29/12 NED! Completed 4 additional maintenance doses of Rituxan. 12/12 NED! 6/14 NED!

  4. #4
    Administrator Top User Didee's Avatar
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    I am in Australia and coming up to one year in remission. I had a CT in November and February and my onc only wants to now do bloods every six months. I had to kick, scream, sulk, pout and bargain to get one more done then I will go with bloods and have a CT scan only if some symptoms come back.
    He does not feel that scan is necessary at all even though my stage 2 T cell lymphoma was a sneaky aggressive and bulky little bastard and I have supposedly 30% chance of getting to 5 years event free.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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    Out of all the things I have lost, I miss my mind the most.

  5. #5
    Senior User rizza's Avatar
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    Hi Schnauzer, I have bloods doen every three months. My next appointment (June) will be a year since finishing treatment. My onc has ordered a chest x-ray. He feels there is no need for any more unnecessary radiation. I have to say I'm happy with that!
    30yo female (27 at diagnosis)
    Mediastinal Large B-cell Lymphoma
    Started six cycles of R CHOP 21 on 8th Jan 2010, completed 23rd April 2010
    4 weeks of daily radiation, started on 18th May 2010
    First clear PET scan 5th August 2010!
    2 years cancer free June 2012!
    My blog: http://dlbcljourney.blogspot.com/

  6. #6
    Senior User Dorney1's Avatar
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    Hi Schnauzer,

    In the UK I think it differs region to region, however, for me I am having CT follow ups.

    To be honest, reading a few other boards, it appears (at least for HD anyway) that the consensus is to move away from scanning altogther and only scan in the event of new lumps, symptoms etc. To be honest, I'm comfortable with this as, from a mental point of view, I have found it much easier to move on with life without frequent reminders of the illness through continued scans and appointments. Again, my opinion is based more on HD so may not be relevant.

    James
    Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.

  7. #7
    Senior User Buffboy's Avatar
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    I'm in the strange situation, where myself and my hematologist both think that I am in remission, but it is difficult to say that I'm NED as long as the PET shows activity. As a result I'm getting PET/CT scans every 2 months until I get a clean scan.

    Once I get a clean scan I consider declining any future scans considering that almost all BL relapses happen within the first 3-6 months after end of treatment. And BL is so aggressive anyway that I think it will only be a matter of weeks before I get symptoms. It would be a strange coincidence if the scan would pick up the relapse before I experienced symptoms.

    In Denmark, everything is covered by the public healthcare system, so it is for the onc/hem to decide in each specific case what to do with scans.
    Age: 32 (29 at diagnosis)
    Diagnosis: Burkitt's lymphoma, sporadic type (originally misdiagnosed as FL, then DLBCL)
    Stage: 2B, bulky disease
    Treatment: Began 8 cycles of R-CHOP 14 on 21 May 2010 + protocol. Discontinued treatment after 6 cycles due to misdiagnosis and switched to 3 cycles of R-CODOX-M/R-IVAC on 20 August 2010. Ended treatment with BEAM+Autologous SCT on 1 October 2010.
    In remission ever since.
    My story: http://www.cancerforums.net/threads/...s-old-My-story

  8. #8
    Newbie Top User joepet's Avatar
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    I have never had a PET scan. I had a Galium scan (the precursor to PET) before and after treatment, and I have had about 5 CTs. I have used only CTs for followup since getting to remission, and assuming that my two year scan shows nothing, I will probably have no other scans unless symptoms warrant a followup.

    I actually feel like declining the two year scan, on account of all the other extra radiation I'm getting these days...
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  9. #9
    Senior User Dorney1's Avatar
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    Quote Originally Posted by joepet View Post
    I actually feel like declining the two year scan, on account of all the other extra radiation I'm getting these days...
    Not sure if I'm meant to laugh Joe but you worded that hilariously!
    Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.

  10. #10
    Senior User Sleeper's Avatar
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    Hi Schnauzer

    I must fall into the new thinking category as I received
    1 CT upper body scan
    1 CT Full body scan
    1 PET Scan
    All these were for the initial purpose of diagnosis

    I have not received any other scans since finishing chemotherapy and then radiotherapy (about 10 months ago)

    I initially wanted a scan to give a sort of "evidence" of my remission but over time I am happy not to have had more scans. I too think it's good to be able to lay it to rest rather than having a reminder.
    Resoluteness Is The Vigour Of Sustainability (S. Rush July 2010)

    Age 35 at diagnosis
    Diagnosis 8th Jan 2010
    Diffuse Large B Cell Lymphoma
    1st Pet Scan - Negative
    Stage - 1A (localised neck)
    LDH - Normal
    Bone Marrow Trephine - Clear
    Chemo - 3 Cycles R-CHOP 21 (finished 16th March 2010)
    Radiotherapy - 15 Sessions (finished 6th May 2010)
    My Story So far http://www.wildrossendale.co.uk/non-...-lymphoma.html

    Remission 09/09/2010
    2 Years out of treatment and cancer free 07/05/2012

  11. #11
    Administrator Top User ChemoMan's Avatar
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    Hi Joepet

    I actually feel like declining the two year scan, on account of all the other extra radiation I'm getting these days...
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

  12. #12
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    Hi Schnauzer
    I have had a discussion with my oncologist on this issue recently. He said that the advantages of follow up scans to monitor for relapse had been looked into a lot and one of the main conclusions has been that the vast majority of relapses are identified when people present between scans with symptoms and are not identified out of the blue by a scan. I picked this up with my GP too, and he agreed, saying that in aggressive lymphoma any relapse would tend to be very aggressive and there would tend to be some symptoms. From my layperson's perspective, I know clear scans would be a source of reassurance to me but I have been told that there is no advantage from a medical perspective.

    Shadesy
    30 years old
    Diagnosed September 2010
    Primary mediastinal B-cell NHL, stage 2EB
    6 R-CHOP
    Borderline scan result
    40gy radiotherapy ends shortly

  13. #13
    Newbie Top User joepet's Avatar
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    Quote Originally Posted by ChemoMan View Post
    Hi Joepet

    Quote Originally Posted by joepet View Post
    I actually feel like declining the two year scan, on account of all the other extra radiation I'm getting these days...
    I'm not sure why you were laughing at me. I was being serious!

    At this pointing I'm thinking to call tomorrow and cancel the 2 year scan.
    My Story: http://cancerforums.net/viewtopic.php?t=11396
    Diffuse Large B cell Lymphoma
    Stage 1AE (localized in colon)
    Began six cycles of R chop 21 3rd Dec 2008
    Finished R chop 21 Apr 2009
    Complete remission as of May 2009
    Confirmed April 2010

  14. #14
    Administrator Top User ChemoMan's Avatar
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    Hi Joepet

    Honestly I thought you were kidding.... no offense meant.

    Cheers
    Age 58
    Diffuse Large B cell Lymphoma
    Stage 2a
    Finished six cycles of R chop 21 26th May 2008
    Officially in remission 9th July 2008
    Remission reconfirmed 1st October 2008
    Remission reconfirmed 17th June 2009
    Remission reconfirmed 7th June 2010
    Remission reconfirmed 6th July 2011
    NED on the 2/01/2013
    No more scheduled visits to the Prof
    http://cancerforums.net/viewtopic.php?t=9620

    RULE NUMBER 1.....Don't Panic
    RULE NUMBER 2..... Don't forget rule Number 1

    Great moments often catch us unaware-beautifully wrapped in what others may consider a small one.

    I may not have gone where I intended to go,
    but I think I have ended up where I needed to be.

 
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