PET Scan Update

So my friends…the PET Scan didn’t happen.

If you have read the blog last week you know that my cancer is growing again. Where? Who knows. It took off growing and acting like it was on a 100-yard dash race. It grew astronomically faster than anyone expected. It’s to the point it’s concerning.

The test that indicated the growth is called a thyroglobulin tumor marker. It’s a simple blood test they do on all thyroid cancer patients. If it’s under 2 the patient is considered to be okay…above 2 means cancer is growing. When it’s at moves higher, the cancer is considered to be growing.

I had mine treated in January 2021. At the time, the number was around 1300. It plummeted to 11. Six months later is was 19. Now, it’s over 2800. No good.

I told you in an earlier post that they scheduled me for a PET Scan that was supposed to happen today. It did not.

My insurance has to approve the PET Scan…We purposely scheduled the appointment out 10 days from the initial appointment hoping it might have time to be approved. I hadn’t heard anything so Tuesday night I messaged my daughter Kalissa and asked her to call Mayo Clinic and make sure it was approved. I would be at work and couldn’t call during business hours. She was great with that.

I told you that I got a job and am working at the vet clinic. When I got hired, I had no idea my cancer was growing again. Days after I was hired, I went to the doctor and found out it was growing. I haven’t told anyone at work yet. I will but want to know what my treatment is before I bother telling them.

One of the hardest things for me in all of this is people treating me differently because I have cancer. I don’t want to be treated like a CANCEROUS person. I want to be treated like a person, who happens to have cancer. There’s a difference. So I don’t want to say much until I know what the treatment is.

Kalissa calling for me would help me keep it quiet just a bit longer.

So…guess what? Mayo didn’t submit the request until 7 days after my appointment. 7 days. So no. The scan wasn’t approved yet.

That is the very short version of it all. While I was at work, Kalissa made three phone calls. None were happy. None were apologetic. Kalissa was so frustrated and then had to tell me.

I don’t see my phone at work except for noon time. I did see she was having trouble but was hopeful that it wouldn’t be trouble big enough to cancel my appointment. It was…well not really.

Kalissa was assured they would follow up and would call her back “later in the afternoon”. They never did so at 4:40 pm Kalissa followed up with a call and they said my appointment can’t be canceled because the schedulers in that department had already left for the day. UGH.

They did tell Kalissa that I could keep the appointment as long as I was willing to sign a waiver that I would pay the $15000 if insurance wouldn’t cover it. UGH. I wasn’t doing that because one time when we requested, they wouldn’t cover it.

So…I have ZERO news. I don’t know when it will be approved. I have a feeling it will, just don’t know when. Then I don’t know when they will have a PET scan appointment open…and on top of that, because we live 2 hours away, we have to have a follow-up doctor appointment the same day and the appointment has to be six hours apart.

In the meantime…My cancer grows.

…and that’s what I know at this point. Right now it’s Mayo Clinic that dropped the ball.

Thankfully I’ve been through this before and know better than to trust that things will just happen smoothly so I’m not terribly disappointed. It’s not worth the energy.

I am also thankful that Kalissa called and checked. I feel the worst about the bother to Kalissa as she had to change her entire work schedule so she could go with me. We had planned to go and stay overnight in Rochester because the scan was supposed to be at 6 am and we have a two-hour drive. Those plans had to be canceled. Kalissa had juggled things around to get a babysitter for when we’d be gone. Those plans had to change too. So many plans simply because my case wasn’t given the priority it needed to have.

When I left my doctor’s office she told me to get the soonest appointment. So much for trying to follow doctor’s orders.

I know many of you have been praying or sending good vibes my way. I figured you all deserved an update on the latest medical drama. UGH. Hopefully next time I’ll have better news or at least news that the scan happened.

UPDATE:
This afternoon I got a call from my doctor’s nurse wondering why I wasn’t there for the appointment. I explained the Wednesday fiasco and how everyone was passing the buck and blaming other people. I told her we weren’t given any instructions from anyone on a follow-up. She said she would do what she could and call back.

Before she hung up I asked if the PET scan appointment could be at 8 am or after because we live 2 hours away and don’t want to pay for a hotel room. Then I reminded her that we were told that we would have to make my doctor’s appointment 6 hours after the PET scan as we were previously told would have to happen.

10 minutes later I got a call. It was the nurse. My appointment for the PET is on August 25th at 9:15 am and my appointment with the doctor will immediately follow. I told her we were told that it had to be 6 hours apart. She said, my doctor will take care of it and the results will be sent immediately. WHAT?? WOW.

This all sounds fabulous but we still don’t know for sure if insurance will approve the scan. I think they will…but who knows. I’ll know more in a week.

Again, thanks for the thoughts, prayers, and good vibes going out on behalf of me and that family. I also want to thank a couple of blog readers who sent a gas card or money. It is so appreciated!!

39 thoughts on “PET Scan Update”

  1. It would be so nice if people would just do their jobs. I know things fall through the cracks, but medical staff should be more conscientious…it is literally people’s lives they are dealing with. Hope everything goes smoothly next week!

    1. I agree Tammie 100%,,,i expect this kind of stuff outside of the medical community BUT NOT in the Medical field…CRAZY,,,yes if everyone would just DO THEIR JOB!!! just makes me furious…So sorry Jo is going through this at all and none of this makes it any easier..Prayers for Jo!!! wish she could come to MDAnderson in Houston!!!

  2. CALL THE CEO IMMEDIATELY – actually talk with his secretary. THEN CALL THE DIR OF MEDICINE. THEN CALL THE OMBUSMAN. This is gross negligence bordering on malpractice. You need to rattle the cages — sadly, been there, done that.

  3. I have the same problem with my Doctors and clinic. I was supposed to have my Dr see in February, 6 month check up. No reminder call, My Coumadin lady found that on the computer when I was there for a coumadin check. I had to reschedule. I asked at the desk why nobody called me to remind me and she said they don’t do that anymore, but if I had a cell phone they could have texted me to remind me. I have no cell phone. Out of luck for any further phone calls in the future. Also I was out of my thyroid medicine and Walgreens sent a message to my Doctor to okay a refill. I never knew why it took so long for them to refill it, 2 weeks later they still didn’t reply. I got on the phone and called the clinic nurse and told her about it and that I was taking old thyroid meds 88mg and I need 100mg. They finally got it to Walgreens the same day. Why did I even have to call. People are blaming covid for the lack of workers. The only thing I blame covid for is it made people lazy and don’t want to work.

    1. Amen, Diane. Thanks to the flu, people had the excuse needed to allow a lazy lifestyle. I look around and see the lazy workers outnumber the good workers. And there are good workers. My youngest picked a bad time to start his framing company. It’s him and one other guy. Can’t even find a young person willing to work. Work is there for him and he could use at least 2 more guys. Meanwhile, people like Jo pay the price by not getting their care on time. It just bites! I have to continually remind myself that God has this all in His hands.

      1. I sure do hope God has things in hand. My opinion is that He needs to give some /a lot of people a good whack upside the head and a swift kick in the rear to remind them the Covid vacation is over.

  4. Sorry that everything had to be rescheduled. Such a hassle for you and your daughter. I hope things go better. Praying for you Jo.

  5. I promise I won’t treat you any differently (except to send prayers, love, positive vibes & healing energy your way in waves).
    I go to Mayo (here in Holmen), too, & have found the doctors are much more on the ball re administrative stuff than the support staff. So you’re not alone.
    You ready? PRAYERS, LOVE, POSITIVE VIBES & HEALING ENERGY headed your way!

  6. Jo, so sorry for such a frustrating situation. I agree with another commenter that those working in the medical field need to be extra diligent – especially in such a serious situation. $15,000 for the scan! Oh my! This type of service shouldn’t even need the insurance okay, should be automatic. I will be praying for you.

  7. I’ve waited 8 days to get my husband a hearing test. Last week after 2 phone calls over 4 days I finally got someone to answer the phone and they said he needs a doctors order. The doctors offices said they never heard of such a thing but they would send it. Now I’ve waited all week and they still haven’t made an appointment. Guess what? He’s going to Sam’s Club for his hearing aid. Their loss. I’m telling you all this to show you aren’t alone with frustration and appointments. You hang in there Jo, you’re going to be OK.

  8. Oh, Jo! Just the roller coaster of emotions must be crazy for you. Prayers will continue for you but also that this mess gets resolved.

  9. Still praying for you! I hope your insurance comes thru! The prices they charge for some tests, OMG. Hopefully all goes well for your next scheduled appointment.

  10. When anyone says “Mayo Clinic” other people think you’re getting the best care. I have close family members who are Mayo patients in a Southern MN town. Mayo bought out the local hospital and started a clinic also. I don’t believe that they are getting quality care. Back in the late ’90’s my dad was at Mayo in Rochester. He had excellent care. Now that Mayo has taken over medical care in so many communities, I think the quality of care has gone down. Now days you have to advocate for yourself or have someone to advocate for yourself. I’ll keep you in my prayers Jo.

    1. I agree. I also have cancer and am getting fabulous care here at a local cancer clinic. If they don’t know something they consult with an expert in the field, no matter the distance. I have heard scary stories from doctors, no less, about care at Mayo. It seems they are living on a reputation built in the past. I watched an NPR program on Mayo and was horrified that they no longer see patients who can’t pay. If you’re uninsured or out of $ they will no longer see you as a patient. I thought part of their core was curing the sick, no matter your insurance status.

    2. Yes ,Martha, I agree. Times have really changed at the “World Famous Mayo Clinic”. Nowdays if you have good insurance they roll out the red carpet, AND another one of their schemes is to have you see as many different specialists and take as many tests as they think your insurance will tolerate. Your portion of the bill is still huge. I’ve spent the last few years paying bills for a chronic illness that we tried to hit hard. I finally had to rebel for awhile and stop the appointments. The bill hanging over my head was so stressful.
      You do have to advocate for yourself and your loved ones!! Otherwise your care will be a crap shoot.

      1. Always sending you off to some other office for evaluation or a scan or whatever seems to be the latest medical trick to get more money out of you. My husband goes to the dentist for a checkup and gets sent somewhere for an evaluation on a tooth ($200), gets told he needs to have a root canal redone on a tooth that’s already got a crown, goes to have it done and is told they can’t finish the job because the previous dentist botched the whole thing ($500) and he needs to have it pulled by an oral surgeon. Luckily they found something that works for him to numb the pain so he didn’t need full anesthetic but still ($365). Now I got the same runaround with the eye doctor. I wonder how many kickbacks get passed around.

  11. Jo I’m sorry you have to deal with all these issues. It doesn’t just affect you but your family also. They show so much love to you.
    I am especially watching your issues as I too take thyroid medication but it is not anything serious, but it is educating me on what to keep an eye on. Will keep you in my prayers!

  12. Continuing to pray for you, Jo and your family, and that this all works itself out.
    Thank you for keeping us posted.
    Love and prayers

  13. Life is a classroom, isn’t it. I got angry with a clinic just yesterday after they informed us they could not see my husband after I had jumped through every hoop to make his appointment – we were there in the waiting room in the next town. Things had changed over night and they were no longer a service provider for our insurance. 3 hours later, I called and apologized for my anger. Love has you and all of us and will not let us go despite the screw-ups, the indifference, and the mistakes. We will not be shaken, might be shook up for a while, but not shaken loose. Thank you for being you!

  14. So sorry you’ve had all the messing around, Jo. All it takes is for one person to mess up, and it throws everything out. It’s not acceptable when it’s something so important as a PET scan. I’m glad you’ve got Kalissa as your wingman.

  15. Mayo doesn’t understand these types of screw ups give them a bad name. I have heard many other horror stories about Mayo. Mayo may say it costs $15000, but you can be sure if the insurance approves it, it will not cost them that much. They have agreements for how much they will pay a provider for each type of service. I am thankful you have a really good doctor who cares and will advocate on your behalf. Still sending prayers up on your behalf.

  16. Fingers crossed for more positive results than you are expecting when you get the scan. I call that whole rigmarole climbing on the medical hamster wheel. It feels to me like I’m handing control of my life over to the medical world. I hope the August 25th appointment happens and the doctor gets the results. You just never know until it actually happens. I sure hope this turns out well for you!

  17. I’m glad you were persistent, Jo. We have to be our own advocate. Fortunately you have such a supportive and caring family. Those kids are awesome! Take care and keep us posted. You are in my prayer basket.

  18. I was so surprised to hear about mayo dropping the ball ? My experience with them has been soooo good ! Everything was soo organized ! I too had a pet scan and dr appt .. hope it shows what is needed and is approved !

  19. I have followed you for several years. In those years there has been a common denominator in reference to your medical care which is very poor communication and care from Mayo Clinic. Is there a patient advocate within the Mayo system that can run interference for you? Does your doctor know of the communication issues you have had? Go to Mayos FB page and share your experiences with the public. After 50 years of nursing I can reassure you that your experiences with Mayo are appalling! You have to staunchly advocate for yourself. Do not be afraid . You will suffer no retribution. I’m in your corner rooting for you!

  20. As if dealing with cancer isn’t stressful enough, you have to deal with the delays in scheduling. Keeping you in my prayers and that this will all soon be resolved.

  21. Pamela Meyers Arbour

    I think the worst part of any sickness or tragedy is the INSURANCE! And in today’s world, there doesn’t seem to be any follow-up on anyone’s part. It is all left up to the patient who is trying to deal with the illness and the insurance at the same time. Some time ago, I was having a similar problem and getting nowhere so I told them that my mother had just died from cancer and my son has cancer and if they didn’t want to pay for psychiatric care for me, they would get me a blanket approval and I hung up! Surprisingly, I never had to call them again! I guess they weighed the costs! I am praying for you.

  22. Every time I hear you talk about the need for prior approval from your health insurance I cringe. It seems like such an inhumane system in this country. And the health care staff you are dealing with for this type of stuff are often some of the lowest paid and most short-staffed. It’s sad, and yes, people still deserve to be treated with compassion and competency. So glad you are mostly able to take it in stride. Having nurses in your family is a plus for sure!

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