The PET Scan…

Well…my life is always a saga. So here goes with the current saga…

On August 8th I went to the doctor for my 6 month cancer scan. My cancer decided to blow up and make itself known, not in my chest CT but in my bloodwork. My doctor said let’s schedule you for an immediate PET scan. That would be great but my insurance isn’t guaranteed to cover it. So in light of that, we had the appointment for 10 days out thinking the insurance and Mayo Clinic would have time to submit the paperwork to my insurance and insurance would say yes.

If you read last week’s blog post about this you will know that Mayo dropped the ball and didn’t submit the paperwork until Tuesday so it wasn’t approved. You can read it HERE if you missed it.

The only way we knew about it was because my daughter Kalissa started calling to check if it would be approved the day before the appointment. I was at work and couldn’t do it…anyway, long story short, there was no approval. It was too late in the day for me to cancel the appointments so I was a no-show.

As I told you in the previous post, my doctor’s nurse called. She immediately scheduled me for a new appointment the following Friday which is today.

In light of the annoying circumstances of last week, I called Wednesday afternoon to see if the PET scan was approved. It wasn’t.

UGH. I wrote down a log of every single person I talked to and the time of day I talked with them. I started at 8 am in the morning. I had 12 interactions with either the insurance company or Mayo Clinic throughout the day.

In the process, I found out it wasn’t approved on Wednesday when I called Jodi in preapproval at Mayo at 4:37 pm. I asked about my case. She said they hadn’t heard anything and it wasn’t approved. Immediately after that, I called insurance and they said they couldn’t do anything until they got the results of my July and January CT scans. They had requested them from Mayo but they hadn’t been sent. I was told I could try sending them from my online record but would need to fax them. I couldn’t figure out where I could fax anything from. Then Kalissa had to work that night and they have a fax machine so she took them and faxed them.

I didn’t think that would be sufficient so in the morning at 8:04 am I called Insurance. They got the scans from Mayo at 4:42 pm on Wednesday.

This frustrated me. This means Mayo had the request earlier and hadn’t sent them. This means that my phone call to Mayo initiated the sending of those records. I called at 4:37 pm–the records were sent at 4:42 pm. UGH. Another ball dropped.

I asked Insurance if there was a way to expedite my case. They said the doctor would need to mark it as urgent.

I called Mayo and was told there was no way to do that. The urgent notification would have had to be attached to the original file.

Then there were several more calls back and forth between Mayo and me and Insurance and me. What a run around.

One of the calls was from Mayo. I was a half hour from home in town picking up my meds. My doctor was going to mark my case as urgent but they were unsure on how to relay that to my insurance company. I hurried home from town to give them the phone number scribbled on my pad of notes.

I called my doctor’s office to offer the phone number.

I decided to call Insurance to see if that really had happened. At this point, I really believe no one so I was going to follow up and check for myself. Yes. It was marked urgent. Now the problem. My file had moved from wherever it was in the normal queue to the bottom of the urgent queue. It was 3 pm in the afternoon and there was no way to know if the review board would get to my case before close of day.

I asked if there was anything that could happen to expedite it all. I was told yes. My doctor could call in a pier-to-pier review. They gave me the direct number and gave me my “tracking number”.

I called my doctor’s office and told them what I learned. They said they would pass the info on to my doctor.

I got a call at about 4:40 pm yesterday. It was my doctor’s office. Apparently, they tried to call my insurance.

For now, I was told, the PET scan was being denied. They had a nurse (yes they said nurse) reviewing my case with the new information that came in today. I’m assuming it’s the CT scans that they had requested.

Apparently, my doctor asked well could we do a CT scan of the pelvis, abdomen, and chest instead. They said they could but that would have to go through pre-approval as well. UGH.

So all of my appointments were cancelled for today. No PET scan. No visit to my doctor visit to make a plan of attack.

How very frustrating.

As I was writing this post, my untrusting self decided I was going to my insurance again. I always play really dumb when I do this. I think it would be the fifth time I’m calling in one day…I wanted to hear it with my own ears…DENIED.

Do you know what? I didn’t hear that. I just heard that my file was still under review but there would likely be no answer in time for me to make my Friday appointments. I am going to call back today when they open to see if there might be a slim chance it was approved. I highly doubt it but a girl can hope…right??

I am not angry…I am not mad. I am frustrated. I know my insurance is a pain in the butt. I know they are slow to approve. BUT, I can also see that plenty of blame in this deal falls directly in the lap of the Mayo Clinic. They were the ones who initially didn’t send the request until a week after my appointments. They were the ones who didn’t send the requested CT scan results for my July and January scans.

Regardless of whose fault it is…it is what it is and there is no use to fret or play the blame game. I take responsibility for part of the blame as well. I likely should have followed up on Monday rather than waiting until Wednesday. I know better now and I will do better to advocate for my own care…and now I have ALL of the needed phone numbers…they are worth gold.

But wait…there is more

UPDATE FRIDAY MORNING: I called this morning and guess what? My scan was approved by insurance!! GLORY BEE. Well by the time I found all of that out, my appointments were cancelled. So I waited until 8 am when the doctor’s office opened to call them and tried to get appointments. SURPRISE…a new complication…My doctor’s request for a PET Scan was canceled when the appointment was canceled. Now we have to wait until she approves a PET scan again. It’s always something. I’m guessing my doc won’t be in until 9 am.

I was on the phone for 2 hours this morning starting at 7:50 am and ending at 9:45 am. I finally have a PET scan scheduled for today. My appointment is at 12:45 pm.

The bad news. My doctor isn’t in this afternoon…so I’ll read the results later online. I’ll have no plan. I’ll only know how far and where the cancer has spread to. I’ll wait until next week to hear the plan and the news to tell me what we’re going to do about it.

It’s one step forward and I’m going to be thankful for that.

On a side note: If you’re a receptionist, please know that your kindness and caring can make all the difference in a person’s life. I’ve talked to so many different people on the phone over the last two days. Some of the great ones have been Angie, Alfonse, and Kesha from my insurance. At Mayo there was Michelle and her coworker. There was another great gal in Mayo Preapproval. All of them were outstanding and wonderful. Then there was the one bad seed Judy who was enough to sour all the wonderful experiences I had. Why oh why does one bad seed spoil the whole bunch? I’d so like to buy Judy a shirt that says, “If you can be anything, be kind”. She told me she’s been working there for 20 years…Hmm. I’d take a new gal on her first day that is slow and pleasant over an old battle axe any day.

And that’s where I sit. When I know more, I’ll share that with you.

44 thoughts on “The PET Scan…”

  1. It’s quite the ordeal. I dread calling insurance, then clinic/doctor, then insurance, going back and forth. I always document conversations, too, and jot down numbers/names. One question I sometimes ask is “what would you do if you were in my place?” I am so sorry you are having to go through all this.

  2. Oh my goodness gracious what an ordeal you’re going through just to get the needed test, Jo. Pretty certain I would have lost it at some point way before the battle axe Judy! That being said it doesn’t help one thing on the stress level that’s for certain. Good for you in keeping it all together with kindness. Good luck on understanding the results when they come in.

  3. This is so unbelievable! Again, this needed test should not have to be approved by any insurance company. I suppose there may be doctors who would order this test when not needed, but really!! I feel for you and it certainly is to your benefit that you don’t get mad or angry, but one could understand if you did. You continue to be in my prayers.

    1. There is a place at Mayo Clinic called patient experiences and they were very helpful in navigating the system getting to .the right people.

  4. I’m so sorry that you are having such an ordeal. I’m so happy you have at least had the test. That’s something. I’m especially happy that in spite of it all, you have a very positive attitude.That’s REALLY something. In the meantime, I’m sending all of my best thoughts your way. Stay strong Jo. I can see now why you haven’t been as productive as usual with your cross stitching. Geesh!!!!

  5. I can’t believe all that run around!!! Can you print all this off and send to your legislator? It would be worth a try – heck, send it to Mayo’s president! That is unacceptable – Mayo is supposed to be one of the very finest of medical facilities in the world, for cryin out loud! How can this be ok??? I am furious on your behalf!

  6. Jo you are a trooper and such a positive person. The insurance papers and Medicare summaries are so hard to read as everything is in code. So far I have been fortunate that everything has been paid for for foot and total knee replacement. Cataract surgery in October. I do pay a higher premium for no deductible but it sure paid off for all the surgery that was done.
    Hang in there and know prayers are being sent your way.

  7. Again, call the CEO (start with his/her secretary), director of medicine, and the ombudsman for starters. You have energy but this needs to be used for healing — just a few thoughts. Prayers your way.

  8. Jo all of this TOTALLY sucks! I hope things improve quickly both with Mayo and your insurance company. It’s really difficult to be the person waiting for all the approvals and communications to happen. It’s so stressful! Hang in, your attitude is amazing.

  9. Ugh, it’s a wonderful anyone ever gets anything done! What an ordeal, only adding frustration to concern. Hang in there, you’ve got this.

  10. I am so sorry to hear that you are going through this. I know firsthand how frustrating this all is, especially when you are going through so much stress already because of your condition and the uncertainty of it all. All anyone is really asking is for people to do their jobs! Is that too much to ask? You are doing so well keeping it all together under the circumstances.

  11. I am so sorry for the ordeal you’re going through. I wish you were down here. I used Texas Oncology and they were great to work with but I guess it depends on which branch you use and the ones in the bigger cities might not be as efficient. sigh Like you said, it’s always something. Praying for you to get past this milestone so you can get back to the good stuff.

  12. Oh, Jo! How do you have the patience? Just for future reference – you can FAX from your computer. There’s a website – https://faxzero.com/ – where you can attach a file and FAX for free. There’s also a low-cost FAX option. I’ve used it for some of Tom’s stuff.
    Thinking of you -Ila

  13. I very much doubt the celebrities, world leaders and dignitaries who fly to Mayo for care get treated this way. They have assumed names in the system for confidentiality and they probably have a care coordinator every step of the way, too.

  14. Jo, I’m so sorry you are having to deal with insurance stuff when you have much more important things on your mind.

    I so much admire your attitude and patience in working through all of the hassles just to get the medical services you need and deserve. This is just SO WRONG and in the United States should never be happening.

    Maybe you dont know this because you are just trying to treat others as you hope to be treated… BUT YOU ARE A RARE LADY and I so very much respect the way in which you are getting things taken care of. Most people would have left SCORCHED EARTH by now – thank you for being such a wonderful example and encouragement to the rest of us!

    Im praying for you every day

  15. Am so sorry for all that you’ve had to endure this week … when a person is in need of help and getting everything to go right–what a miracle it must take, when all is considered. Patience of a SAINT Jo!! That’s you!! Prayers that it will all work out and you will soon know what comes next!
    I can relate!! Believe me!!!

  16. I am so sorry you are going through this. The person on the other end of the phone makes or breaks your day, right?! God bless you, Jo. Praying for you.

  17. Rebecca Hoetger

    Jo, I am so sad and furious that you’ve had to go through this ordeal. My formerly positive opinion of the Mayo Clinic has taken a serious hit.
    I am praying that it’s all straight now and that you can move forward to good news to come.
    Rebecca

  18. Shame what a terrible ordeal you are having to cope with!! Which made me think of the battle axe you mentioned….. Maybe Judy has become a battle axe after 20 years of verbal abuse by patients who had troubles with medical aids, or appointments….. Maybe she was also having a bad day…. Maybe she needs a virtual hug too….who knows?? Keeping you in my prayers.

  19. I’m praying for you. I hope your scans give you good news. You are doing amazing. I’m glad all your hard work paid off.

  20. Your story encapsulates all that is wrong with our health system. I think you should send a link with your blog post to your Congressman and Senators with a plea to do something about the sorry state of health care in this country. Something is wrong when insurance companies make medical decisions that affect peoples’ lives.

  21. Meredith in Cincinnati

    It’s almost like the whole medical community is playing “gotcha” with YOUR health. We all assume that when someone says they will send something, or call someone, that the job will be done. How frustrating! Praying for you, and hope for a fast solution to this mess they’ve made.

  22. The medical profession has lost a lot of its compassion. I think they become “immune “ to others needs. There are some who listen and try very hard to help. I’m sure at the end of their workday they go home exhausted and defeated for the ones they couldn’t help. I pray you’ll be treated better next time. My husband gets the same runaround from VA as he uses outside drs. I’m sorry that your health isn’t better and the troubles you go through surely make it worse for you.

  23. sorry about this dilemma. Does your state have ombudsmen who can help makes this known and not just some apologies for you but also be a wakeup to prevent others from a similar occurrence ???

    As an administrative person in the medical field, I can say this is most of our worst nightmares. It is so little to ask of an employee to remember that every person who comes through the doors or is on the other end of the telephone is likely not in a very good place with a thousand questions going through their mind and to act accordingly.

  24. Jo so sorry you had the run around and around. Praise for your perseverance.
    I don’t know why pet scans vs ct scans are so complicated. My insurance covered pet scans for 2 years and then suddenly stopped. So now instead of 1 1hour appt. I have 2 3-4 hour long appointments. First to get injected with radioactive whatever, then off to a ct with contrast, then wait 2-3 hours and then have a bone scan.
    The techs told me the hospital overcharges for pet scans so insurance will only cover cts and bone scans. The same info is gotten either way but at for me constant iv’s are difficult. There’s got to be a better way. Good luck, and my thoughts are with you.

  25. Oh my goodness, I admire you for keeping so calm, Jo. But like you say, it is what it is. Thank goodness you’re finally getting it done.

  26. Jane Bergstralh

    Hi, Jo. My sympathies for what you are going through. My daughter Carol (age 53) has lived with me since my husband’s death in 2019. She was diagnosed with stage 4 ovarian cancer on December 25 of that year, and the years since have been a journey so much like yours. We spent the last three weeks on the same roller coaster of insurance denial, cancelled appointments, appeals. The nurse called yesterday and Carol will begin treatment Monday. We watch your blog, pray for you, and hold hands across the miles. We are so with you! Love and hugs—jane

    1. Jane, how blessed your daughter is to have you right by her side. Take care of yourself. I know it’s hard to be a care giver.

  27. Good Grief! This has been such a trial! All in the attempt to get healthcare. You are so gracious and calm. I would not have been so calm. Bless you! Prayers continuing.

  28. I really feel for you too, Jo. It is frustrating. On some of our insurances they have a 1 minute survey after your phone call. There should have been one for “Judy”s. How sad. My thoughts
    and prayers are with you, Jo.

  29. Beryl in Owatonna

    Oh my goodness. So many things to take into consideration. Your life and health being the most important. You are very patient and that is a good thing. That helps with the response you get and the response from those you are talking to.
    I continue to pray for you and the situation, so glad we have a God who cares and has it under control. Trust Him. Each day counts. Love and HUGS.

  30. Unfortunately, a person now a day has to be their own advocate when it comes to health care and not depend on receptionists or the doctor’s scheduler. I had a problem with a CAT scan a few months ago and pretty much spent hours on the phone getting things resolved as well. One thing, I had a PET scan last month and I had to be on a special diet the day before my scan….it was a no sugar low carbohydrate diet. The reason, I was told, is because sugar can cause more things to light up on the scan than just the active cancer cells. Good luck with your scan.

  31. I’m frustrated for you, what a fiasco and there was no reason for it. Mayo isn’t all it’s cracked up to be. So glad you can advocate for yourself, I wonder what happens to folks who can’t. Prayers for some answers and a plan for whatever lies ahead.

  32. It breaks my heart to see what medicine and insurance companies have come to. I’m afraid there are far too many of us who understand your frustration all too well. I gave up treatment for MS because I just couldn’t take dealing with all that over and over. Cancer is quite a different thing, however, so I pray you get the treatment and care (as well as respect) you should have.
    I’ve laughed many times, saying that insurance companies are guilt of practicing medicine without a license. I don’t laugh so much anymore.
    You’re in my prayers.

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