The PET Scan That Wasn’t

A few months ago, I experienced the biopsy that wasn’t, and I found out on Thursday, that my PET scan isn’t going to happen today either.

When I left work on Thursday, I checked my messages, and the imaging clinic asked me to call them as soon as possible.  The lady there said my insurance had not approved the scan, because I “only” had stage I papillary cancer.  She said my insurance said I had to have stage II thyroid cancer, OR stage I thyroid cancer (papillary) and a thyroidectomy.  I told her I was scheduled for a thyroidectomy next week.  She clarified even further and said at stage I, there has to be indication of reoccurrence of the cancer.

She told me without the reoccurrence, it is nearly impossible to get the insurance companies to pay for the scan.  She said the thyroidectomy would make a stronger case, but it would still be very difficult.  I sat in the car, stuck in construction traffic, in a state of disbelief- yet again.

I wanted the PET scan so I would have peace of mind.  I want to know the true condition of my health.  The reality that an insurance company can deny me that simply because I am not sick enough, or because the cancer hasn’t spread yet– just is inconceivable. 

The lady told me she didn’t want me to be surprised tomorrow at this news (which I appreciate they did call to tell me this), and if I still wanted it, I would have to pay it out of pocket.  She said it is over $2,000.  On one hand, this is my health-money shouldn’t be an object.  But on the other hand it occurred to me that there probably is a reason the insurance company won’t pay, based on some research my family has done for me.  

The chances and statistics of stage I, papillary thyroid cancer spreading beyond the lymph nodes is rare.  If it does happen, it is very slow moving and more than likely would take years for this to happen. I remember Dr. S. telling me my cancer was in the very early stages, and that we had caught it early.  Dr. S.’s office had said usually the endocrinologist ordered a PET scan, down the road if it was needed.  The thought occurred to me that maybe, just maybe, the chances were extremely low that the cancer had spread.

I asked the lady if my thinking was correct.  I can’t remember her exact words, but she confirmed that if the cancer had spread, it usually was at stage II and beyond, hence the reason why the insurance company wasn’t going to pay for the scan at stage I. 

I thanked her and told her I was going to hold off on the scan for now.  It should be causing me reason to be happy, but I couldn’t process this is good news or bad news.  As the night progressed, I feel like it is a little of both- good that it does seem to be rare that the type of cancer I have would have spread into other organs this fast.  But bad, because I still don’t know with 100% accuracy, and chances are I won’t know for some time.

 One of my friend’s husband’s suggested that I call the insurance company and ask them firmly why they are not paying for this scan, even though my doctor ordered it.  I don’t have a ton of energy to “fight” the insurance company.  I am not Erin Brockovich right now, but I do think I can manage a call, or have one of my family members do it for me.

My dad, sisters, and I agreed that for now, it is probably best if we leave it on the back burner.  The results of the scan will not affect my upcoming surgery, and the probability of the cancer having spread, seems very, very low. 

However, I feel frustrated, and angry at the insurance company.  If a doctor orders a procedure for a patient, it should happen. The number one concern should be patient’s health.  Suppose I am that one rare case.  Treatment by the time they figure this out, will cost way more than the $2,000 plus dollars for the scan. It seems ridiculous and almost criminal that patients can’t take a proactive role in their health because they just haven’t gotten as sick as the insurance company thinks they should be.

I am tired, I am scared, I am drained, I am exhausted.  I am trying to take care of myself and my boys, while keeping a positive attitude.  I do not have the energy to take on an insurance company on top of trying to fight cancer.  This is wrong, and it sucks.  Much like cancer itself.