Insurance denied PET scan

Kaniksu
Kaniksu Member Posts: 54
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Good morning all.... As I sit here in the middle night not being able to go back to sleep,my mind jus keeps spinning. I called my oncologist today to see when my 3 month post treatment scan was scheduled. I missed the call bac from the nurse but the message said that because  I had stage one, Cigna denied the post treatment scan..My world has. Kind of been revolving around this...being anxious to have it done to be sure they got it ..I'm really distressed over this. The nurse said my Dr was ok with the decision. Has this happened to you? I feel like I should fight ...

nancy

Comments

  • po18guy
    po18guy Member Posts: 1,507 Member
    edited May 2016 #2
    I would totally relax

    PET scans are radiation. Radiation increases your risk of a secondary cancer - usually an aggressive leukemia. Those are really bad. PET scans are not used to detect relapse - they are used for staging purposes when it is known via other means that the lymphoma has relapsed. PETs can easily produce false positives (i.e. patient freaking out). They are not diagnostic of anything by themselves. That's why other means are used to determine a relapse. The PET then determines how extensive the relapse is. Doctor is correct on this one. From Cigna's viewpoint, why spend $6-10K and risk a leukemia when there is no evidence of lymphoma? 

    Why is this correct? PETs can light up as a result of simple exercise, injury, healing, inflammation, autoimmune conditions or many other non-cancerous causes. If your last scan at treatment end was clear, and you were at stage 1 (extremely early - lucky - for lymphoma), then you should relax, in my opinion. The majority of relapses are caught by symptoms, rather than scanning. There are things to push for and things to let go. More radiation is not something to push for. It is something to reluctantly agree to when doctor decides that it is necessary. I have had a bazillion scans because it was necessary as part of the clinical trials and long-term study I was in. One of these days, I will probably pay for that. 

    No idea how your lymphoma was discovered, but there are many things to simply keep your eyes open for. Lymphoma is rarely an emergency, so the stage at which it is discovered mostly dictates treatment strategy more than survival rates or treatment success.  

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,817 Member
    #3
    Scans

    Nancy,

    I agree with most of what Po said.  I was advanced Stage III HL and did six months of R-ABVD, but I have only had two PETS in my life.  For the last five years since my treatments ended, except for a couple of CTs, my wellness testing has been just extensive bloodwork and physical exams by an NP, currently one a year.   When I was diagnosed with prostate cancer two years ago, I had the option of curing it with surgical removal or extensive therapudic radiation. The radiation is easier, but I chose surgery instead, because I did not want my heavy chemo use to be followed by extensive radiation, which can, as Po observed, slightly increase the chances of later developing some form of leukemia. (The amount of radiation for prostate cancer treatment is many, many times what one gets from even numerous PETS -- it would have been 76 Gray, administered over 40 days. A 'Gray' is a measure of radiation.)

    While most scans patients receive are necessary and not necessarily very dangerous, radiation is best kept to a minimum, and avoided when possible.

    Me -- I would accept the decision, expecially since your oncologist it OK with it, and not fret too much.

    max

  • po18guy
    po18guy Member Posts: 1,507 Member
    #4
    Dr. would probably not order

    Dr. would probably not order a PET, given the cost alone, and due to the fact that PETs can provide false positives and are less accurate in determining the size of any masses or enlarged nodes. Far less expensive scanning should be done, IMO, but only when symptoms indicate. Particularly if one began this at stage 1. That is extremely early for it to be caught, and treatment stands a very good chance of producing a lifetime remission. As to rads, prostate rads are localized, but 76 gray is still going to do a lot of collateral damage. PETs and CTs that I have had (about 40 CT series and 20 PETs) irradiate from head to pelvis. There are trillions of cells in the mitotic process while all of this is being conducted. The bottom line is that a PET is used to stage lymphoma after a confirmed relapse. It would be a waste of time, money and radiation in the case of a stage 1 patient who was clear only three months ago. I think that is reasonable.   

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