My doctor’s run-around has continued. I’m going to pull the info I previously wrote about my doctor visit and put that at the beginning of this post and then I’ll write on what happened after that.
I went to the doctor on Thursday the 23rd for my thyroid cancer check-up. I have slow-growing cancer and I go in quarterly to see how it’s growing. My doctor originally requested that a PET scan be done but my insurance would not cover it. She opted instead to do a chest, abdomen, and pelvis CT scan. The scans came back okay and she assured us that we didn’t need to worry. At this point, the bloodwork wasn’t back. The number we were most wanting to see was the thyroglobulin tumor marker.
The doctor repeated about three times not to worry as the scans look really good and this is what she goes by. The tumor marker was just a tool. She would see me in 4 months.
At the previous appointment, the tumor marker had been at 500ish. They expected it to go to 800ish.
Kalissa expressed concern that CT scans were done instead of the PET scan she originally ordered. The doctor said don’t worry about it. CT scans can do what we needed, it’s only that PET scans make this all easier. We felt content with that and didn’t worry that I had only had CT scans rather than the PET scan.
The next day the numbers finally came back and I saw them via the online care program Mayo Clinic has. The number had gone into the 1200’s. I messaged our kids and told them the numbers weren’t good and that I wouldn’t be surprised if my doctor called me to discuss it. This was at about 9 am.
Then about 3:55 pm, I got a call from the Mayo Clinic business office. They were coordinating with my insurance about my upcoming appointments. WHAT? I don’t have any upcoming appointments. The lady assured me I did. One at the beginning of October. One at the end. WHAT?! When I left the doctor’s office I was told that she would see me in 4 months.
It’s now 4 pm on Friday. I called Kalissa to double-check to make sure she heard what I heard at the doctor’s office. 4 months from now appointments right? She said yes. She told me to quickly email my doctor and I did. By now I was mad and frustrated. The doctor had said again and again that the blood work was only a tool. She said she believed in the scans.
I had no call from my doctor. I had no reason to know what these appointments were for. Sure I knew my blood work numbers were higher than expected…but all of this for that with no phone call??!!
I was working so Kalissa offered to call Mayo Clinic and see what’s up. I said yes, please.
Kalissa called me back a bit later. She called and talked to the schedulers, schedulers boss. Apparently, I am getting a PET scan at the end of October. The early October appointment was a mistake. My doctor ordered it. No one talked to me about it. UGH.
My friend showed up to walk. As soon as I was home, I checked my appointments on the computer. The early October appointment was gone. The other appointment listed was with my doctor. No PET scan was scheduled…just the follow-up appointment with my doctor. Hmm. Then I noticed the time for the appointment… 9:45 am. Well, that isn’t enough time for a PET scan to happen and the results to be back. I was confused by it all and frankly frustrated.
That is where I left you in the story…
Monday I got a notification that I was to get a PET scan the next day. I was also to get a head and neck scan. WHAT??? The next day. What is going on??
How can that have cleared with insurance? I’ve gotten a PET scan before. I know there is a diet to go with it. No one has told me to go on that diet. What is going on? There was no appointment listed to follow up with my doctor after the scans. The appointment for the end of the month to see my doctor was still listed.
Kalissa was here and ended up calling Mayo and asking about these changed appointments. I asked about insurance covering the scan. I felt I needed to know these things.
Kalissa got the run around…transferred from this person to that person. The gal said yes, these scans were needed ASAP? What? ASAP? What is going on? When I left the doctor on Thursday nothing at all was urgent. That tumor marker we were told was just a tool. The scans were good and that was supposed to be our real guideline. What was going on?
I was so thankful that Kailssa was at the appointment with me. This is all ridiculous.
Kalissa asked the person we were talking to to check on this…let us know if this was approved by insurance. If these appointments were legitimate…
In the meantime, I was trying to decide if I should call my childcare parents and tell them I needed tomorrow off. I looked up what the PET scan diet was and started trying to eat accordingly. What a mess. I was so frustrated.
Still no call from a doctor.
About two hours later we got a call from Mayo Clinic. The gal was calling back. I was trying to take care of the kids so handed the phone to Kalissa. We were told- Big mistake. I didn’t need any of the appointments. The scheduler had looked at the doctor’s note that said 4 months and saw it as 4 weeks. Then to get an appointment within four weeks, it’s coded as ASAP. No worries. All of the appointments were removed. Kalissa did ask the gal to request that my doctor call and tell us her feelings about the tumor marker being so high.
WHEW. No ASAP Pet scan. That made me feel better. 4 months sounded great to me. It wasn’t that I was against getting a PET scan. I just needed to:
-make sure insurance was covering it
-make sure my doctor really wanted it as nothing previous to this indicated she did
-get on the right diet for the scan
-get the day off from work
But wait. There is more…
At 3 pm on the same day, I got a call from Crystal my doctor’s nurse. My doctor does want me to get a PET scan. She does want it within the next four weeks. The worst part of the call is she laughed and said “I heard you didn’t want to get a PET scan”. WHAT??
NO. I just wanted to get a call from my doctor and explain the about-face that happened. She was so casual at my appointment making it seem like we were silly to be concerned about any of this. One phone call from her could have prevented all of this.
She said I needed to get as soon as I could. I said I was unsure of insurance. They wouldn’t cover it before. I didn’t know what was going to make them cover it now. Plus insurance had told me they don’t do them without a Pier to Pier review. My doctor said she doesn’t do Pier to Pier reviews as they take a lot of time and often are rejected anyway.
I hung up the phone. Frustrated again. I really don’t mind a bit going to appointments. What I mind is the confusion in it all…
So… half an hour later someone called from Mayo. They wanted me to call my insurance and see if they would approve the PET scan. I called. They forwarded me to someone else. They said they had no orders from my doctor requesting one and they needed a coding number from me.
I called Mayo. I talked to first my doctor’s secretary and then pre-approval. They said they had no orders from my doctor. No one from Mayo could have possibly called me and told me to call my insurance company as that is not how they do this. Unless they got an order from my doctor with my name on it, they could do nothing. The gal in pre-approval did tell me that I could put a downpayment on the PET scan. At this time they are $7800. If I have to, I could figure out how to pay that…but I can’t figure it out four times a year which is looking like how often I need PET scans.
What is going on? I promise. I am not imagining any of this. I am not exaggerating any of it.
On Tuesday I joking said to Kalissa if Mayo calls I’m not going to answer. My blood pressure can’t handle it.
They didn’t call…well they didn’t call until Wednesday.
It was the same gal that called me and told me to contact my insurance company and see if they would cover a PET scan. I told her I called. I called the insurance company who passed me to someone else…she needed a doctor’s order and a code number and was wondering why Mayo Clinic wasn’t arranging this. I told her I then called the pre-approval at Mayo and they told me that this was not how this all happens. She said she needed doctor’s orders for the scan and then they would contact insurance. She had no doctor’s orders.
I could have been a jerk. I could have said it all in a mean tone, but I didn’t. I just told her my experience and that everyone I talked to told me there was no order from the doctor for a PET scan and until there was they couldn’t do anything about it…and it was not the patient’s job to arrange insurance.
In all of this, I can still hear my doctor saying… she doesn’t do Pier to Pier reviews as they take a lot of time and often are rejected anyway.
So that is where I am as of Wednesday afternoon. People have been calling or messaging me to see how my appointments went. So far I’ve only said, “We’re waiting for another test.” I don’t know what else to say. There is no way I’m going to start explaining all of this.
Kalissa and I have decided that we are going to fight to make sure this doesn’t happen again. From now on bloodwork will be done the day before and I will see my doctor the next day. I refuse to see her until all of the tests are back. More than once the tumor marker hasn’t been back by the time I see my doctor. Every time it’s been a mess.
In the meantime, I’m just waiting for my phone to ring or an email to come so I know what I’m going to hear next. I will let you all know if I get an update…in the meantime, my response to any question will be short and simple. “We’re waiting for another test.”