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.”
Insurance rules! So sorry you have had to go through this. I was telling someone yesterday that I’m so fed up with our country not trying to protect their citizens with good affordable health care. Hang in there.
Oh my…It’s hard enough going thru what you are faced with let alone be overwhelmed. I’m glad your daughter is there to help you sort through this and try to get a reasonable response. I hope you can get your blood work done before your appointment. That’s how my husband does it with VA. Morning appt for blood then answers later.
Prayers for you Jo for Peace in this matter.
Oh how frustrating. Hugs and prayers.
Oh my! How frustrating all that confusion is. It sure seems like somebody is dropping the ball in the wrong pot. I sure hope it all gets resolved in a timely manner and all is well. Thankfully you are so busy you can’t sit around and let this eat you – well not too much any way. Prayers for you!
Oh, do I know your frustration. I had a horrible case of sciatica and now have a dropped foot due to nerve damage. At least that’s what PT says. Went through 6 weeks of PT. Not my doctor though. I have called the office 3 times and every time I get, “They’ll call you back”. Not once has anyone called me . Seriously considering looking for another doctor. Had blood work done even though I could barely walk but my doctor was determined I have my regular blood work. She has never called on results . I’m hearing more and more doctors are not seeming to care. So busy it doesn’t seem to matter to them whether they get in touch or not.
My heart is with you and your family, Jo. Many hugs and prayers. ❤
You are taking it better than I would. I would be livid
Yuck, yuck , yuck, I hate the medical run around. I have several health issues and last October I had blood work, some one coded it incorrectly and Quest wanted $1700 for what they did, my insurance and Medicare denied coverage. At the next office visit ( I also go every 3 months) I told the doctor I really didn’t want any blood work done quarterly as it was too expensive and I really only wanted it done every 6 months . She had her office rebill the blood work with the correct coding and most of it was paid but it was a hassle.
I hope you send a letter with names dates and times. There are a number of people who need to see this I closing the patient advocate for Mayor, the Doctors Business Manager and anyone else you can think of. If you can find a home address for the doc send one there. In writing and to as many people as possible.
I am sorry the auto correct messed things up above but you get point. You are not being mean. A lot of people love you and want you around for a long time.
Boy – what an experience. My cancer diagnosis is different than yours, but at the beginning of the saga we had a terrible time with docs and such. My daughter finally hooked us up with Emory’s cancer center and life got better under one umbrella. Emory schedules blood work before the doc appt – same day, and they must have a hot shot lab, as the results are ready within 90 minutes – except for the tumor marker. That result takes about 3 days to get. I googled tumor marker a while back, but couldn’t get anything understandable in layman’s terms. Fortunately my insurance does cover PET scans, and Emory handled the insurance claims not me. Actually the last time I had to contact and insurance company over claims was in the 80’s. Mayo should be doing all the paperwork, not you. Take a deep breath – and have a bloody mary and watch some netflix!
PS I never see my oncologist alone, daughter is always with me. Takes 2 these days
What a nightmare! You have been very patient. Someone needs to straighten this all out. I wish you the best outcome through all of this. Deep breaths! Take care of yourself. Hugs!!!
What a pain!! I’m so sorry that you are having to go through all of this frustration, Jo. Hoping it all gets worked out soon (and good thinking to wait for seeing the doc until after the bloodwork comes back from now on!)
None of that is surprising in this day, though I would have expected far better from The Mayo Clinic. I’m so sorry you’re going through all this. I cannot imagine how you’re staying sane.
You’re in my prayers!
Just reading what you went through makes my blood pressure rise and makes me want to punch someone! Mayo should be doing the leg work, not you. I’ve found that, when possible, taking someone with me to medical appointments is just smart!
What you are experiencing is medical malpractice. You need to call the medical director at Mayo and report this. This is not ok. Don’t wait for them to straighten this out. It’s your health!
No, this is not malpractice. It is poor patient care and pure lack of communication.
I am so sorry to hear everything you are going through, Jo. Prayers for grace to handle all of this.
Oh my goodness! What a mess. I would be extremely frustrated. Tell them to call when it is arranged and not before. You do not need their stress passed to you. Hang in there Jo!
Jo, I am so sorry for the medical nightmare. I had a nightmare for 21 yrs with neurologist over disabling migraines. I kept a record of every appt and test. Got me nowhere but worse. A correct diagnosis by a TMJ dentist and prayer cured me. Will keep praying for you and the agonizing journey.
Jo, I’m sorry this is happening to you and I can totally understand the frustration. I hope it all gets cleared up and you can move forward and find out why your numbers are so high.
I’ve been through all of trying to arrange care for my mother. I don’t understand why it all to be so hard! Sorry for the craziness, and sending hugs that it eases SOON!! Also prayers that when it finally dies ease? You’ve beaten all forms of cancer, and are able to live very long life inspiring the rest of us!!
Dear Jo, so sorry about what your going through it’s bad enough to have to deal with cancer
Having to deal with a care less dr. Is the absolute pits. To think she laughed when she called you and then refused to help makes my blood boil. Praying for you, and your medical care givers. I just found out the other day that my sister had thyroid cancer she has tests every 4 months too. So glad you took your girl with you .
I’m so sorry Jo and I’m glad that Kalissa goes to these appointments with you to support you and be your advocate. You have blessed them with your patience and kindness when you had every right to be angry. I hope this all gets straightened out promptly and I suspect your next Doctor appt will be a very lengthy discussion.
Hugs to you.
My husband has a ct scan and his blood work on the same day. He has an appointment with the oncologist a week later. The oncologist wants all of the results before he sees Mike. So thankful for that!
Prayers for you and a voodoo doll for the Mayo crew.
Dear Jo. MY blood pressure is going up just reading this!
You have been extremely patient. Thankful Kalissa could be there to confirm conversations.
Yes, that doctor should have called you. I think Mayo relies too much on your patient portal.
Praying this is all unnecessary and that your numbers are good.
I am so sorry you have to go through this. We have the best medical system in the world but the most bureaucracy ever. It doesn’t do any good to get mad but persistence is the key.
I am so sorry you are having to go through all of this. Sounds like you know the ropes but it is so frustrating dealing with everyone involved who has a different answer. I think you are smart. Wait it out. Take a breather then re-assess. Its almost like you need to go to the Mayo Clinic and spend the day with the scheduler until things get set up and insurance okayed. Do they have a concierge service to handle things like this for one person?
Keeping you in my thoughts and prayers, my friend. We all know health care shouldn’t be this hard but insurance and rules make it this way.
So glad Lalissa is there to help you out.
Love and prayers
I know how frustrating the doctor runaround can be. Going through it myself. Try. Try. Try. Not to let it get to you. Easier said than done. Just hang in there. Remember. This too shall pass.
So sorry you are dealing with this…..not acceptable.
Have your daughter, to call Mayo Clinic and ask if they have Patient Advocates!!! If they do, request to have one contact you and your daughter!
If they don’t, I would call and ask for the individual who works with a cancer patient and their situation.
I feel confident they have someone, within their hospital, that does that service.
I’ve known of others who have had lesser problems than you have endured and they received a Patient Advocate, who took care of getting a “mess” resolved and got the hospital and patient on the same page.
Prayers coming your way, Jo!!!
I am so sorry. I am beginning to think this kind of runaround, he said, she said is the norm with medical facilities. We just went through similar things for one medical emergency for me and another for my husband in July.
I am sorry you are going through all this. Insurance should not be able to dictate the patient’s needs being covered.
For us, it was a huge awakening going from private insurance to Medicare. There are so many plans and options! We chose one that said it covered our doctors, our meds, etc. What they didn’t tell us was we had to beg for certain coverages. One procedure that I was accustomed to doing 4 times a year was granted an exception for once per year.
Praying you get the PET scan you need and insurance covers it.
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