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