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
Completed 8 cycles of R CHOP 21 May 24 '10
Completed 18 sessions of radiation July 21 '10
NED from May of '10
Recurrence of lymphoma February '15
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.
Diffuse Large B cell Lymphoma
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.
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.
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! 1/15 NED!
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 58
1987 CIN 111. Cervix lasered, no further problems.
Years of pain, bleeding, women's plumbing problems. TV ultrasound, tests, eventual hysterectomy 2007, fibroids in lining of Uterus.
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.
Discharged Nov 2014.
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/
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.
Diagnosed Mixed Cellularity Hodgkins Lymphoma 1st February 2010. 4 cycles ABVD and 30 gy radiatiotherapy. NED.
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: 34 (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
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
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
2 Years out of treatment and cancer free 07/05/2012