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Insurance Co denied 6 month PET / Any suggestions?

Tim6003's picture
Posts: 1511
Joined: Nov 2011

Hey all ...looking for some ammo here (and opinions if anyone thinks it's fair or not fair, I want to be sure I am being reasonable).

Here's my history in a nutshell.

Oct 20, 2011 of head and chest reveals mass at base of tongue with mets to one lymph node
Nov 6, 2011 biopsy on tongue, confirms SCC HPV+

Nov 16, 2011 PET scan of whole body to determine stage III base of tongue and one lymph node

Nov 20, 2011 tx began - 35 rads and Erbitux

Jan, 20, 2012 last rad, no more Erbitux

May 6, 2012 PET reveals good results, slight uptick of heat in vocal cords, some heat at base of tongue still, but team of docs feels it is just rad residual, not disease residual.

August 6, 2012 CT w/ contrast of head and neck, oncologist cofirms NED (I asked if we could do lungs and brain as well, oncologist said no, base of skull and mid-chest only)

November 8, 2012 suppose to have PET of eyes to thighs, Insurance company says no because it's a "surveillance " scan and they do not cover those. Treatment yes, surveillance not covered. The way I read the denial letter it seems to me NO PET or any surveillance will be covered in the future, but I may be wrong on that...never easy to read those letters.

Of course the letter is signed by an MD (head docotor in charge on their end).

My treatment center immediately appealed the decision, and within 1 week denial was upheld, so I was told my Oncologist would schedule another CT scan in November instead of PET (I assume the CT will be of head and neck, nothing else).

Tim6003's picture
Posts: 1511
Joined: Nov 2011

sorry, for some reason I could not add to the above discussion, so had to sign out and in again...

Anyways ...to continue...(and if I am wrong on anything below this line, please feel free to correct me, I feel like I am careful to research stuff...but am no doctor).

So I feel they should approve the scan every 6 months due to...

1. My ENT (and what I have read) says there is a 35% chance of recurrence
2. I won't list the 5 year mortality rates since so many new treatments are out there and those stats are a little dated. But most of us on here no what the "book" reads.
3. "IF" recurrence does occur, 90% of all recurrences are in the first 2 years
4. American Cancer Society reads " agressive monitoring" follow-up should be done for my type cancer
5. 25% of all recurrence or mets that do happen can be in the lung

If my ENT and Oncologist order the scan, and all the Cancer affiliated institutes say it is within the guidelines, ..why would they deny it?

I feel I have received great care, I certainly do not want to run up the cost of healtcare single handedly :) ...but I do like to keep an eye on the lungs, and if you read the history above, it seems like one area we are leaving open is the lungs if I do not have the PET.

Also, I would like to add, I know this site is for encouragement and positive thougths, I would never want any of my stats above to discourage or "drain" anyone. I am also the type that likes to "know my enemy" ..and to do that I feel I have to know the stats, but again I want to say if any of my stats are wrong above (and they could very well be) ...please feel free to correct me. I do try very hard to do my homework and I of course do rely on my ENT and Oncologist to give me many of the abvoe stats.

Thanks all...my goal would be to have the denial overturned of course, but not sure how to do that if the very treatment hospital I go to was not able to get it overturned.



Posts: 1914
Joined: May 2012

Hey Tim,
I think that you need to talk with the billing office at your clinic. They have to enter specific codes in order to get pre-approval on these tests. I was in the same position awhile back...and the phone calls made the difference. This is a pain, but we aren't trying to milk the insurance companies...just trying to avoid re-occurrance. And everyone, a pet is tough on our systems...if it is absolutely needed, yes do it. If not, your doctor should make sure you get the test that best suits your needs. Thinking of you Tim ! Katie

Grandmax4's picture
Posts: 709
Joined: Dec 2011

While we are going about the business of getting well or seeking treatment, our health care in this Country is silently being reduced by big business. Last visit to my primary Dr. she insisted I get a colonoscopy, have put off for 16 years, anyway she said a new ruling is that at the age of 75 , benefits for colonoscopy, mammograms, pap smears, many other tests will no longer be available. Population Control?

hwt's picture
Posts: 2330
Joined: Jun 2012

I think Kate maybe right, as I understand it's all in the coding.

Pam M's picture
Pam M
Posts: 2196
Joined: Nov 2009

There are a lot of us. My insurance, too, denied the second PET requested after treatment. They'd only allow it if I failed my CAT (or some other type of scan, I suppose). Unfortunately, I DID fail the CAT; insurance then covered their part of the PET that I ended up getting anyway, just a little later than originally planned. The first (clean!) PET after my dissection was covered - next check, I again just got a CAT, because the PET wasn't allowed. I have slightly different insurance now (same company, but instead of the COBRA coverage I had, I now have coverage the state must make available to me through the same company). My most recent PET was allowed, even though my most recent tests were (thank goodness) still clean.

While I'm on the thought, how much are folks paying for insurance now? I have the bad luck to be both "uninsurable" and employed by a company that has a nearly useless insurance plan, so I have to keep up the state coverage. At 47, I pay about a hundred for the company insurance, and six-forty for the state coverage.

Hoping your insurance company reconsiders, for your peace of mind, not because it's needed.

hwt's picture
Posts: 2330
Joined: Jun 2012

Ours is through my husband's retirement, he has Medicare and pays just under $400 a month which covers me in addition to his supplemental plan and our prescription plan too. It has been great insurance. I can't imagine being in the middle of this battle and having to deal with an insurance company too.

phrannie51's picture
Posts: 4673
Joined: Mar 2012

I have excellent insurance coverage, but that doesn't mean in the near future I too will be denied a PET scan. It seems to me tho, that a PET at 3 months is the going procedure, so that one will probably be ok...it's the ones down the road that have me wondering. I had to pay almost $700 for my first one, but that may have been part of my out of pocket...everything else has been 100% ever since.


CivilMatt's picture
Posts: 4318
Joined: May 2012

Hi Tim,

I was 6 months post last Sunday and my chemo onc told me no scans planned that my ENT visit (scope, neck feel and tongue manipulation) where it. Of course I rattled on about being proactive how I know it some times shows in the lungs and how I expected a scan at 6 months. She said unless the ENT notices something they (she) considers me cured. Nice to hear, harder to believe. So I need to get my ducks in-a-row and contact my ENT. While I have to say, the threads here do scare me I still want to be on top of things. I can’t tell whether it is the doctors or the insurance making the call in my case.



ToBeGolden's picture
Posts: 695
Joined: Aug 2010

I have a summary of guidelines for Medicare. You can get it by searching on "Medicare Indications for PET and PETCT". Essentially it says the PET'S can be used for diagnosis and staging of H&N cancer. So if a CT was suspicious or if you had some symptom (pain, cough?) perhaps a PET would be covered. Even if you are not on Medicare, I would expect the standards would be the same.

Also I always file my own appeal and my healthcare provider also files an appeal. This assures that at least one appeal is filed.

I am not a fan of insurance companies BUT I do think that PET's have far too many false positives. I just had a PET which lit up several spots in the lung. I am hoping that it's pneumonia.

On the other hand, we do trust our healthcare teams. I don't think they are in the habit of ordering needless tests. Therefore, there must be some reason to suspect that your cancer may not have been cured.

Finally, my first PET was 8 months post treatment. I've mouthed off enough. Rick.

Posts: 660
Joined: Mar 2012

My docs only ordered a CT scan and does not plan on another one for 6 months, will see the ENT on October 15th and the RAD and Onc in December but thats it. Diane asked the Onc why no PET and like Rick said she was told that if nothing unusual thru the CT or Doc visits that a PET is not recommended by many Doctors due to false positives and likely thats where the insurance companies are coming from. Well all that said maybe I am the exception but I just hope the CTs continue to show nothing and that there are no Mets anywhere. I know before cancer it was the last thing I went looking for, but now that we have had it and we know folks on this site that unfortunetly have dealt with Mets we now kind of want to know what if anything is running around our bodies. So I get folks desire to be screened from Head to Toe in hopes of a clean bill of health, but if I can rely (Hope and Pray) that the CTs and Doctors will be sufficient, because now my fear is a PET being approved because that likely means with my insurance company something is UP.... Good Luck Tim with your Appeal and if you win it just another NED confirmation for you Im sure.

D Lewis's picture
D Lewis
Posts: 1576
Joined: Jan 2010

I'm thinking it was about half a year ago. It might have been in response to a post by KTeacher.

Several of us had follow-up PET-CT scans denied. In my case, I was told that it was owing to the fact that I had no symptoms of on-going issues. I very quickly 'developed' some, and called back my physician to remind him that I was choking, aspirating food, and I forget what else. That PET-CT was then suddenly approved.

I am now about 2 1/2 years out from end of treatment. Its time for another PET-CT according to my Stanford doctors, but they are also admitting that it's getting a lot more difficult to get them approved. I was HPV+ BOT, stage 4. Stanford has told me that their most current research, including some research findings that haven't even been published yet, are showing that the cancer rarely, if ever, reoccurs at the original site. Apparently I am way more likely now to develop mets to the lung than to have a recurrence. Stanford has suggested that we first do a CT, and look for evidence of trouble in the lungs. Then, if needed, it will be easier to get pre-approval for the PET-CT. Not what I wanted, but I may have no choice.


Kent Cass
Posts: 1898
Joined: Nov 2009

Your insurance might have a case, based on typical timing. You've already had the first post-tx PET (which typically is to only establish a baseline to compare future PETs to). And now a second PET 6-months later? They might be wanting you to wait for the one-year mark after the end of tx. That's what went down with me, and my ENT made like that's protocol. Might be that your getting two post-tx PETs in the first 10-months raised red flags.

Like Deb said, though- if there is untypical post-tx cause/need for another before the one-year, then they should cut the strings and cover it. I can tell you that my late Cousin had two PETs in the same week- the second was to confirm that his C had, indeed, come back, and double-check where all it was. Thing is- the government paid for his PETs, and Uncle Sam has different standards than Insurance companies.


Tim6003's picture
Posts: 1511
Joined: Nov 2011

Well, to be clear, I have no symptoms or anything suspicious going on ...my oncologist knows I am very pro-active and in fact asked me if I wanted my PET in October or November (I told him asap) so he ordered it.....he is not an older oncoloist, I'd say in his late 30's ...so I'm not so sure he is as seasoned as some oncologists...but he seems to be very knowledgeable as well as efficient...he ceratianly is personable and takes time with me each visit if I have questions.

I am only 49, so not on medicare :)

I kind of thouht the same thing as some of you which is "two PETs in less than 6 months along with a CT with contrast is a lot" ..but of course now we know the 2nd PET is not likely to happen..so the oncolgist did order a CT/w contrast ...

Do you think I should ask him to do a CT of the lungs and not the H&N???? I just had a CT w/ contrast of the H&N August 6th ( I forgot to mention I had a lung X-ray last month due to a prolonged cough and was tested for whooping cough at the same time) both the X-ray and whooping cough came back negative.

I forgot to see who posted this on the thread, but someone posted recurrence somewhere else in the body is more likely than in the same spot??? Wow, is that correct? Who knew. If that is correct you would thik they would alternate the scans anyway...H&N this time, lungs next time, brain next time (I probably am showing how puckered I am at the moment)......but...

...I like the way ditto put it ...we are always wondering if something is wondering around our body :) ....and I guess that's part of the process we all have to deal with...

I'm not trying to sound overly brave here at all...but I often wonder if I would be as puckered in regards to being so diligent if the faces of my five kids were not always there to look at....I caught myself the other day when I was playing with my 2 year saying out loud "I gotta stay healthy for you little guy"......

Thank you all for your feedback....anybody else who reads this, jump right in!



Skiffin16's picture
Posts: 8286
Joined: Sep 2009

Tim, with the cost of the PET at nearly $6-8K, and a CT at less than $2K, you can see why they give you so much crap.

As mentioned, my annual scans are at six months apart...PET annually in July, CT around February.

But the CT does cover from top of the head, down to the groin...same as PET.


Tim6003's picture
Posts: 1511
Joined: Nov 2011

I think that is what I will request from my Onc...a head to groin CT w contrast ...surely he won't say no to that I hope! :_)



Skiffin16's picture
Posts: 8286
Joined: Sep 2009

With the insurance..real test I guess will be when your due for the annual.

Some people have had the same problems as you for nearly any post TX PET scan.

I've been lucky so far, I've had three post Tx annual PET exams.

I can't figure out some of the economics of these insurance companys. They'd rather save a few grand and not be pro-active, than hundreds of thousands on treatment re-active.


Tonsil Dad's picture
Tonsil Dad
Posts: 489
Joined: Dec 2011

Most insurance companys would rather pay for the full amount of
the cost of treatment rather than a preventative method. Its all a game,
we...us ..have to put up with the bull@#*t and have to deal with the worry
and stress (which we don't need) and the insurance Co's keep you guessing wether
they will pay or not. I hope everything turns out in your favor Tim, and you
get all the scans you need (and deserve) .

God bless
Tonsil dad,


ToBeGolden's picture
Posts: 695
Joined: Aug 2010

Not any kind of expert but: I think neither CT or PET are very good diagnosis tool for the brain. I get CTs AND PETs of the body, but I always have MRI of the brain. I know that the brain is too energy hungry to be scanned with a PET. If your brain doesn't light up, your significant other should start to worry.

Posts: 213
Joined: Sep 2012

Praying this will be resolved favorably for you.........
Your brother in Christ.

jtl's picture
Posts: 455
Joined: Sep 2011

Hi Tim,
I am on Medicare so my situation is different but I had a PET/CT at 3 months post and another 7 months later these were in addition to my diagnostic scan to locate the primary cancer site. Originally I had a CT scan but that did not show anything unusual, the next day I had a PET and the primary was found. The following was taken from the Cleveland Clinic website:

"In head and neck tumors, recurrences
often are challenging to detect by CT or MRI
alone, as surgery or radiation therapy can significantly
distort the normal anatomic landmarks.
Although PET by itself accurately
detects tumor recurrence, PET/CT more precisely
delineates the enhanced FDG uptake,
making it easier to differentiate between
recurrent neoplasm and inflammatory or physiologic

The article can be found at ccjm.org/content/73/12/1075.full.pdf

PET/CT are becoming very common and I was surprised to hear that your insurance company would not pay. IIRC you had some uptake on your first PET which is not unusual but I would think you could make a case for seeing if it has changed since your baseline scan. The cost of a PET/CT where I live is under $2K retail and about $1600 under Medicare. Good luck and stay healthy!

Posts: 90
Joined: Jul 2011

Luckily, my insurance carrier never denied any treatment that any of my doctors ordered.
I know I had a PET scan pre or early-on in treatment, but after 6 years out, I am not having any scans.
The one thing you have to remember is that if your insurance carrier is provided through your employer, they will not be receptive to preventive measures. They do not want to pay for prevention since, in my case, they might not be the carrier for treatment. My company changes medical insurance carriers every one or two years. Usually the insurance carrier is changed every January. I am totally surprised when the new carrier accepts my pre-existing condition at all.
I think it is a moral outrage that a doctor on the insurance company's payroll, who is PAID to keep the insurance company's costs down, is determining whether a person needs tests or treatment! Sorry, I get a little carried away...

But as stated before, the billing codes are usually the reason most people have problems with insurance payments.

meaganb's picture
Posts: 243
Joined: May 2012

Thought I'd throw my two cents in. I have never had a PET scan. I had a CT to diagnose the mass then a full body CT several weeks after the mass was removed. I switched ENTs and my new Dr ordered a brain/neck MRI 3 months after Rads and my oncologist did a chest x-ray. I think scans are important but I don't think we should get caught up in what tyPe they are. I haven't had a CT since Apriland unless I tell my Onco that I want one, he hasn't scheduled one until Feb which is when I had my first one. Just chest x-rays and physical exams until then. I have a friend who is a radiologist and when I told him about so many having PET Scans he said it isn't always necessary and I shouldn't worry about having one. I totally understand the desire to have one because we all want to be well informed and stay on top of any recurrence that might happen but I don't think we should 100% trust that a PET scan is the end all. I've read stories of PETs not picking up tumors at all or on the other end lighting up falsely and causing undue worry. I know it's hard because sometimes insurance companies don't make any sense. During my full body CT they at first didn't want to cover the neck part of the CT....everything else was fine( head, chest, abdomen) but they didn't want to cover the neck( where my tumor had been located!) eventually they did cover everything but I honestly did the scan before they approved it. I figured thatif they didn't payI'd rather go ahead and not have treatment delayed. Anyways...trust your Onco and ENT. I'm assuming you trust them and they are well trained and I think that if they are doing regular physical exams and even if they are ordering regular CT and/or chest x-rays you will be just fine. Tim, I know you have a strong faith. Just remember that Jesus has got you. There is no reason for worry! ( easier to say thanpracticesometimes!) Best to you!

hwt's picture
Posts: 2330
Joined: Jun 2012

I had a PET at onset and just had one 5 months post tx. I have to say I was surprised that my ONC said that was the last PET, from here on out, for 5 years, her choice is CT scans. I've trusted her this far and everything has worked out so I guess I will continue with her recommendation.

Greend's picture
Posts: 678
Joined: Feb 2010

Call your insurance company and when they deny your doctor's request then tell them "I want to speak to the doctor who is turning down my doctor's request" My son did this and it was approved in less than 5 minutes after numerous denials.

Worth a try.

ratface's picture
Posts: 1319
Joined: Aug 2009

And we are the mice. The good news is that the mice usually win in the long run. At three years post my last two scans have been denied. My insurance company uses, "The national cancer comprehensive network guidelines", which spell out the imaging guidelines for specific cancers. You can join their network and get access to the guidelines if you wish, it's quite simple. The problem arises if you are "asymptomatic", because according to the guidelines the only test recommended for followup is a figiggin chest x-ray. The insurance company will hang their hat here and punt the ball to you. This is the point where you request an appeal. My insurance company contracts with ENT's in the field who will review the case. This is where you bring up pertinent information about coughing and aspiration and trouble swallowing if applicable. This process will involve your nurse practitioner and doctor who will typically conference call with the insurance doctor. It's a huge waste of resources all the way around and a huge PITA but in most cases you will get them to approve a scan although the process takes months and endless letters and phone calls. Stay organized throughout as it does facilitate the fighting. I'm currently in a situation where the hospital did a scan that wasn't authorized and billed me for it. It's a constant battle and there is more than one cat. Be careful! meow

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