I'm fuming! I was scheduled to have a CT scan today at noon. It's been scheduled for months. I received some paperwork from the insurance company yesterday (Jan 25) that they needed more information before they would authorize the scan. It said they needed a response by Jan 22nd. A little hard to do when I just received the info yesterday. Also, I had checked two times previously with the insurance company on the status of the authorization and they just said it was in progress. I called them again and was told I needed to have oncology call them to provide more details. That was at 6:40 pm last night. I called oncology as soon as they opened and provided the info. I didn't hear anything back, so I called again but couldn't get an update. So I called the insurance company again and they said the authorization was canceled yesterday. I asked how could that be since I had talked to them at 6:40 pm and it wasn't canceled at that time. She said it was canceled because they don't normally do CT scans for blood disorders. Really??? I belong to several CLL groups and many people have had CT scans multiple times. This is my first one. My WBC is 123.5k with slightly low IGG and some lymph node involvement. Doctor ordered it to check lymph node involvement and to see if spleen shows enlargement or if liver is impacted. Has anybody else ever been denied a CT scan? Needless to say, I'm really pissed off!
CT scan denied: I'm fuming! I was scheduled to... - CLL Support
CT scan denied
That is frustrating! Never experienced a problem. Suggest you have your hematologist office call the insurance company. There may have been a glitch with a code. 🙏💕
I am so sorry for this frustrating event that you are dealing with. I sometimes feel in some medical circles(especially insurance), we are not considered as living human beings. I keep at it and eventually I find a person that recognizes I am a living human being and follows up my request for me. I don’t know why it is such a struggle sometimes. The best to you and I pray you can see this through and feel better.
Sandra
Do you see a specialist? CT scans have fallen out favor. Your doctor should be able to palpate your spleen and do an ultrasound on your liver if needed.
I’m not medically trained but you don’t need the radiation unless you’re part of a clinical trial and being treated.
I would rethink this as they actually could be doing you a favor.
Jeff
I agree with your comment. It is exactly how I felt when my oncologist first said I should have one. But after posting in other groups, they all said it would be good to have the scan.
I used to have 2 doctors, a local hemo that doesn't understand CLL, and a specialist that I see once a year. The specialist sees all my results and makes decisions on my health. My local doctor wanted the scan. But since then, I stopped seeing the local doc and now just see the specialist. But at the time, the specialist had agreed with the local doc about the scan, and I warmed up to it after hearing other CLLers say they've had them done and they encouraged me to have it done.
BTW, when I saw the specialist in July, she said she couldn't even feel my spleen. So I doubt it is swollen. And, I do not have any other symptoms other than high WBC, slightly low IGG, and a few small lymph nodes. I'm 13q mutated, the best all (if there is such a thing).
Typically a scan is done at the beginning of clinical trials and throughout. If you feel fine and your specialist is okay with holding off, if it were me, I’d hold off. Run it by your specialist and see.
I had a CT scan at Dana Farber when I moved my care there. They don’t do them regularly but they certainly are done on occasion.
I'm sorry to hear this & I hear your frustration. I assume this is in the US?
Yes
The way some insurance companies work is to deny procedure authorizations and make people appeal through a confusing red tape procedure that frustrates people and makes them quit. If someone gets too persistent, then they approve.
Some policies might not cover scans at all. It sounds like yours does, but the company has some BS doctor reviewing procedures who has opined it is medically unnecessary. Some insurance companies have even been known to pay doctors based on money they save denying procedures. That is illegal if it can be exposed.
You will likely win any appeal you push, no matter to them, they will still safe money overall frustrating other people until they quit.
I think a CT scan at diagnosis of cll is recommended in order to get a baseline of enlarging lymph nodes that are too deep to be palpated.
Short of suing them, all you can do is jump through the hoops of the appeal process unless there is some adjuster you can convince.
This type of crap is standard operating procedure for some insurance companies, just like in the Gresham novels.
I know what you mean! I received a call from thr oncologist, she will be having a peer-to-peer call with the insurance company. If they approve it, I can have it done Friday. I recently had the fish test redone (previous was 2011), a mutation test, cbc, and igg levels. The CT scan is intended to identify whether I need to start treatment again. It will likely be Acalabrutinib.
They will almost certainly approve after the peer to peer. They make their money off the ones who get frustrated and give up.
Don't be mad. They need to save somewhere so they can pay your Acala pills. I hear they cost an arm and a leg. Good luck!
🤣🤣🥴
I am a nurse case manager for an insurance company so I deal with people who are unhappy about this all the time. I tell them to chase it from both sides. Call the insurance company, call the Dr office back and forth until it gets resolved. However, after doing that now for three weeks MYSELF, my CT was denied. The next step was my hematologist was to call the insurance company physician and explain the need. I've called my Dr.'s office every day for the last two weeks and she has not done it. I just keep getting run around from the office. How do I know she hasn't done it? Because I'm also chasing it at the insurance company and they have not heard from her. I also realize that she didn't submit the request correctly either. She submitted it for surveillance and did not include enough clinical detail to justify what the purpose of the scan was.
Most people want to blame the insurance companies and often rightly so. BUT, very often the physicians office is dropping the ball and not following through to do what is necessary to get things approved.
While I am disappointed and angry with my insurance company, I see clearly now it is time for me to find a new local hematologist.
This is extremely frustrating for you and I understand that you are upset. Having been on the other end trying to get studies and procedures approved I can tell you what a waste of time and money this whole process is. I have had many peer to peer calls and it is extremely time consuming with insurance companies banking that those do not happen and the study or test remains denied. It is sometimes mind boggling that I have to talk to physicians denying procedures who are not in my field of expertise!!! In other words they have no idea what they are talking about. I had to play hardball several times asking for their license number and flat out stating that they are practicing medicine in a field they have not received any training. I tell them that I will document their denial in the patients chart in case there are bad outcomes. In my career I have not yet received one denial of a peer to peer call. The whole process is extremely frustrating time consuming and very expensive.
I haven’t heard of CT scan being turned down for blood disorders. I actually have one today for a pain in my stomach after starting Acalabrutinib. I’m not too worried about radiation. The risk is small and unless you have been having them since teenage years the exposure to radiation is not likely to manifest until after you’ve gone! Saying that, Dr’s do proceed with caution and they aren’t usually done unless the benefit outweigh me the risk. Sometimes with CLL I think they like to have a benchmark.
I had a CT scan when I was first diagnosed (presumably to get a baseline assessment), and now again two years later, before starting treatment. My understanding from the haematologist is that it is to check the size of internal lymph nodes, in order to assess the risk of tumour lysis syndrome before starting venetoclax.
Hope your insurance approval comes through.
Hello MyCLLJourney
The issue may be medical coding. I would try getting your doctor involved with your insurance company. Good example is Medicare only allows two blood tests per year, so in order to get my blood tests covered I have to insure my primary private insurance is listed first. If billing goes to Medicare first, which they will not pay, then insurance will not cover a billing refused by Medicare. Blessings.
I should have also added; if medical coding listed reason for CT scan was possible enlargement of spleen would be better than medical coding blood disorder.
Thanks, my dr wil be doing a peer to peer call with the insurance company. Hopefully that will help. I'm thinking a code for enlarged spleen will get denied and told to palpitate instead. Good to know about Medicare, I get bloods draws 4 times a year. I'll be starting Medicare next year, so I'll need to follow to on that.
What is the insurance company? Want to avoid it.
United health care
Aargh I really dislike the runaround that insurance companies put the patients AND doctors offices through.
My insurance denied a provider Dec 2020 that was covered earlier in 2020, and will be covered again starting Jan 2021. Some of the things they do just don't make sense medically, I do believe they deny to try to wear you down. Every t must be crossed, every i dotted. Gaaah!
If your CBC and IgG indicate you definitely need treatment, I am not sure why your doc needs a CT scan for Calquence initiation. Unless your WBC is really really high, I don't see any TLS warnings for Calquence. However, I am unfamiliar with a CT scan being the basis of "to treat or not" without associated abnormal lab parameters. It doesn't mean it isn't done, your doc knows your history & should be the judge of that. Off the top of my head, a CT pre-Calquence can
1) note any lung lesions for baseline. Calquence can cause pneumonias in I think around 10% of patients, and a baseline would be optimal if you developed a pneumonia/pneumonitis. Do you have a history of lung problems?
2) Assess if internal nodes are pressing on cardiac, liver, or other organs. I appeared Medium Risk for TLS pre-Venclexta, but CT scan showed large >2.5cm lymph node at periaortic arch. I actually was High Risk, and am glad I was hospitalized, etc. for Venclexta Tx initiation. I would have had difficulty maintaining high hydration without IV support, and my kidneys were stressed (high BUN) as well as elevated PO4. There's been several reports here of people with non-palpable external nodes but large internal ones, so it can be a concern.
3) Perhaps your doc is trying to determine if you have a high internal tumor load that needs treating, based on other symptoms. Are any cardiac or LFT functions abnormal, or history of cardiac, kidney, or liver problems? Any GI issues? All those could be a rationale for a CT scan to determine tumor load/lymph node size.
Good Luck.
My wbc was 123.5 in november. My IGG is low, but did increase slightly between July and Nov. My LDH is high (250), but according to my specialist, it isn't high enough to worry about. It was my local oncologist who wants me to start calquence. But, I have no other symptoms other than a couple of small lymph nodes on my neck. To me, a high WBC is not a reason to treat unless there are other symptoms. My local oncologist wanted a ct scan to get a better idea of what is going on, e.g. enlarged spleen, is liver impacted, do I have a lot of lymph nodes they can't see? My specialist agreed that it wouldn't hurt to have a ct scan. I have since dropped the local oncologist and only see the specialist now. My specialist had a peer to peer discussion with a doctor representing the insurance company and they finally approved the ct scan. I had it this morning. I also had my blood draw, and should see the results tomorrow. Wish me luck. I just hope my WBC has leveled off, or gone down.
I think non-CLL specialists assume any high WBC needs treatment. Other blood disorders generally get treated, no? I don't recall diseases with "watch and wait" until I entered the CLL world. Glad you are seeing a specialist & got a CT done to assess node size. And since many CLL patients never need treatment, I think that fact contributes to the hassle we go through getting insurance to approve things. Hope your bloodwork/tests show you are still W&W!
Thank you. I was first diagnosed in the fall of 2011. I was told I was watch and wait. I am 13q but they wanted to see me every six weeks. Six months later in 2012 I needed treatment because my white count had more than doubled. I also had some fatigue which would hit around 8pm every day. Chemo was a breeze. In December of 2017, it started coming back. So far, no physical symptoms other than a few small lymph nodes. I too hope I can go longer before treatment. I also found out I'm mutated which is also good.
CT scan or not 
Recent Chest CT scan to check for SLL progression, June 7, 2024 (part 2 of 2 posts)
need answer ASAP. Re infusions 😳😳😳
CT scan series part 10 - Clinical Trial CT scan Context
Ct scan?
