PET CT Scan for cancer – A Mama's Blog

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.

It has been six days since I found out the extent of the surgery I am facing for my thyroid and lymph node cancers. Everyday the shock wears off a little more, but I think I am still in a state of disbelief. Each day that I have to think about it, is another day I have to think about it and live with cancer. I want to stop thinking about it, but I can’t. I can’t turn my brain off.

As far as the actual condition my body will be in after the surgery, I feel like I can live with most of them. I can handle the pain. I can handle a scar-even if it a U shaped one. I can handle shoulder rehab. I can handle being on a restricted diet for six weeks to prepare my body for the radioactive iodine. I can handle gaining weight and becoming depressed because of this diet. Of course, these aren’t things I want- but I can put my mind around them and realize in the grand scheme of things, they aren’t that bad. With the help of my family and friends, I will get through it.

I can’t handle thinking about how I am going to be numb from my earlobes to my collar bone. That makes me cry just thinking about it. My boys hug me around my neck. I like my neck rubbed. I like my neck kissed, and it seems like a very big loss, to realize I am never going to feel those sensations again. I realize it might not be as bad as I am thinking, and over time, I might gain some feeling back again. But right now it is a causality that I have to mourn.

I have been terrified thinking about the surgery- those last few minutes that I am awake. What if that is it for me? What if I never wake up?

When I do wake up, I am dreading being in the hospital for so long. I have never been away from my boys for longer than three days. I might have to be away from them from seven days. That seems like a life-time. I am so worried about what kind of toll this is having on them, and for me to go away for seven days- my heart breaks thinking about it.

I have been wondering if the cancer is anywhere else in my body. How do I know this hasn’t spread? My dad suggested that I call my doctor and ask him. I did on Monday. They told me that the endocrinologist usually handles this aspect of the case. But they recommended I have a PET CT Scan as soon as possible from my brain to my legs, to find out for sure so they can answer that question for me. I am scheduled for this on Friday.

I let my mind go there for about half an hour on Monday- the major, “What if?” What if the cancer is in the rest of my body?

I feel like I am on auto-pilot. Get through the days so I can go get the PET CT Scan, and then get through the days so I can have the results to that, and then get through the days to the pre-opt appointment, and then get through two more days to the surgery. Somewhere in between there, I am trying to keep a positive attitude and be strong. And hope, with everything that I have, that the cancer has not spread past my lymph nodes.

So I try to get through each hour. I have stayed very busy. I am exhausted but I keep going. When it is quiet, and I don’t have enough to do, then the thoughts I don’t want to think about, start creeping in my mind. I wish the surgery was tomorrow. I think waiting around for that day to come, is one of the hardest parts. I have to keep managing my emotions and thoughts until June 12th.

But as bad as I feel at times, there has also been such an out-pouring of support and love. I never imagined this- never imagined the small things so many people do for me every day, to help the day be a little better, and a little happier.

I decided not to get a second opinion after talking to my family about it. My aunt Laura, has been an intensive care cardiac nurse for over 20 years in for a major hospital in Denver. Laura will tell you how it is- nicely of course- and sometimes not so nice. 🙂 When talking to her she came out and said it- I have cancer. She said she had been looking at different treatment options besides surgery, and there aren’t any. She said I have it, and I have to get it out- what my doctor proposed is the treatment, and it is effective.

I told her I felt confident with what my doctor told me, and she told me that was half the battle- finding a surgeon you feel comfortable and confident with. Laura says that affects the outcome of the surgery. I knew I had already found that doctor, and I felt happy I didn’t have to be searching for another doctor right now. Laura spent a lot of time looking up information for me, and relating it to me in a non-medical way I could understand.

One thing my doctor, Dr. S., told me I could do to be proactive before the surgery was get an appointment with an endocrinologist. Dr. S., gave me the name of the endocrinologist, Dr. M., his wife sees, who also has thyroid cancer. I felt my time would be better spent doing this, than trying to find another doctor to look at my case, and end up telling me the same thing anyway.

I was told when I called Dr. M, that he was too booked up and he was not going to be able to take me as a patient. I was getting motivated to try to find another one, when his office called me today and said Dr. S., had called them and told them he had referred me. They told me I could meet with an associate doctor of Dr. M’s., for the initial appointment and then from that point on, Dr. M., would be my endocrinologist. They told me as long as the doctor met with me before six weeks post-opt, that was fine. I have an appointment in July- a few days shy of the six-week mark. I am not sure what changed, but I am thankful that Dr. S., made the referral for me, and I am now a patient of endocrinologist I wanted.

As far as my neck, my sister, Mara, told me her knee has been numb for 12 years-ever since her knee surgery. She says she can’t feel a very light touch on her knee, but she feels pain on it. She said the numbing would get better. My sister-in-law, Kat’s, left side of her back is numb from back surgery she had ten years ago. Evidently I will fit right in.

My friends Amy, and Kathie, helped me find a great relaxation meditation CD for surgery. I have been listening to this since Sunday night, and I am falling asleep much easier, and I am starting to feel calmer about the surgery.

As far as Ryan and Cole go, all I can do is love them and tell them that. I tell them that much more than I used to. I am also receiving a lot more hugs and kisses from them. They know I am going to the hospital and we talk about that. I keep it very light and very basic with them. But, I feel it is very important that they know why I am going to be away from them, where I am going, and that I am going to be just fine. My children don’t need to know every detail about my health and they are not at an age where they can comprehend it all. But they do know that Mommy has to have an operation at the hospital, and they deserve to have their questions and feelings answered and acknowledged.

My family and friends have been there to listen to me talk about my fears about all of this- the good, the bad, and everything in between, In the end, they all tell me I am going to be fine. In my heart I believe that.

I have realized during these last six days, I do have a choice- I can choose to be depressed and sad, or I can choose to be hopeful and positive. No matter how many bad days I have between now and then. No matter how scared I am. No matter how much I wish this wasn’t happening. I am going to beat this cancer and be healthy again- no matter what.

Once you choose hope, anything’s possible. ~Christopher Reeve