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bonniep's picture
Posts: 36
Joined: Jun 2010

I am in the monitoring stage for recurrence of USPC and have an appointment with my oncologist. I've been in remission since January. My doctor has indicated he wants to set me up for a PET scan and I really want one because I currently feel awful, especially in my mid section around my back. Sometimes it aches so bad, I feel nauseous. Has anyone had symptoms like this?
I was diagnosed one yr ago with USPC, had the full hysterectomy, 6 rounds of chemo & 30 radiation treatments which finished in January. My Paps was clear 3 months later. I had one PET scan after my 5th chemo & it did not show anything. YEA! Unfortunately, my insurance has refused to pay for that PET scan because the applicable diagnosis code was not submitted. I would hope my oncologist would know what the code is since he deals with this all the time. He states the originating source is uterine, so he uses 182.0 (Uterine, Endometrial, etc. cancer)which is most definitely not covered. There's got to be another code since USPC was also found in my lymph nodes, the pelvic wash & the upper part of my cervix. In my pea brain, it just seems logical that there's got to be an applicable code since my cancer was not just confined to the uterus. Now I'm faced with what to do again! I've read posts from so many of you who are living with this agressive cancer and I almost feel as if I don't have any right to complain because of what you all are going through. But, most of you also say you have PET scans (the majority of you). Will someone PLEASE share with me what the applicble diagnosis code & medical procedure code is your doctor submits in order to get the PET Scan done & covered under your insurance. Even if your USPC recurred, the originating source is still the uterus, right? Aren't all diagnosis codes standard with all insurance companies, Medicare, etc. I have Aetna and they abide by Medicare codes.
I really can't afford to pay these out of my own pocket, but I am so afraid of recurrence & don't know what else will reflect cancer. Do they do full body CT scans? So far the only 2 CT scans I've had, were of the pelvic/abdomin area. As an additional note, my 1st CT scan, prior to my surgery showed no cancer - that all showed up during surgery. My doctor said it would have been reflected in the PET, so why would I settle for just a CT. I am really stressed about this.

california_artist's picture
Posts: 865
Joined: Jan 2009

When I have questions about that, I ask the billing department at the place, hospital where ever it was done what code they would suggest using for UPSC to cover the pet scan. I am sure they would like to be certain of payment too.

On the other note recurrence is the worst. Heartbreaking and terrifying, especially when you think you are done with this cancer.

There are other women here who will help you I sure. They may have the code on some of their paper work or might be able to find it.

After doing some various word string searches on google, I found this, it does mention that there was a challenge to PET scanning regarding ovarian and specifically pap serous. I went to the site and you will have to do some reading but in there is the info, which I sorta remeber from a few years ago that all pap serous due to the nature of the cancer, are covered for PET.

As to Ct's, they expose you to so much radiation versus the PET/CT combo where very little radiation is used, that if you can try to not get them.

Some things are routinely denied, try an appeal. But first read the thing below.
This is what I had in the search engine when I found the site:

medicare insurance code pet scan uterine papillary serous carcinoma

PDF/Adobe Acrobat - Quick View
Section 220.6, a general section on PET scanning, will be modified as required by this decision. .... subjects found in the Code of Federal Regulations (CFR) at 45 CFR Part 46. ... patients with ovarian cancer. CMS has determined that the available evidence ..... while histopathology identified two serous papillary ...

this should at least give you a place to begin.

california_artist's picture
Posts: 865
Joined: Jan 2009

Here's what that got me:
C. Regardless of any other terms or conditions, all uses of FDG PET scans, in order to be covered by the Medicare program, must meet the following general conditions prior to June 30, 2001:

•Submission of claims for payment must include any information Medicare requires to ensure the PET scans performed were: (a) medically necessary, (b) did not unnecessarily duplicate other covered diagnostic tests, and (c) did not involve investigational drugs or procedures using investigational drugs, as determined by the FDA.
•The PET scan entity submitting claims for payment must keep such patient records as Medicare requires on file for each patient for whom a PET scan claim is made.
Regardless of any other terms or conditions, all uses of FDG PET scans, in order to be covered by the Medicare program, must meet the following general conditions as of July 1, 2001:

•The provider of the PET scan should maintain on file the doctor's referral and documentation that the procedure involved only FDA-approved drugs and devices, as is normal business practice.
•The ordering physician is responsible for documenting the medical necessity of the study and ensuring that it meets the conditions specified in the instructions. The physician should have documentation in the beneficiary's medical record to support the referral to the PET scan provider.
III. Covered Indications for PET Scans and Limitations/Requirements for Usage

For all uses of PET relating to malignancies the following conditions apply:

A. Diagnosis: PET is covered only in clinical situations in which: (1) the PET results may assist in avoiding an invasive diagnostic procedure, or in which (2) the PET results may assist in determining the optimal anatomical location to perform an invasive diagnostic procedure. In general, for most solid tumors, a tissue diagnosis is made prior to the performance of PET scanning. PET scans following a tissue diagnosis are generally performed for staging rather than diagnosis.

PET is not covered as a screening test (i.e., testing patients without specific signs and symptoms of disease).

B. Staging: PET is covered for staging in clinical situations in which: (1)(a) the stage of the cancer remains in doubt after completion of a standard diagnostic workup, including conventional imaging (computed tomography (CT), magnetic resonance imaging (MRI), or ultrasound), or (1)(b) it could potentially replace one or more conventional imaging studies when it is expected that conventional study information is insufficient for the clinical management of the patient, and 2) clinical management of the patient would differ depending on the stage of the cancer identified.

C. Restaging: PET is covered for restaging: (1) after completion of treatment for the purpose of detecting residual disease, (2) for detecting suspected recurrence or metastasis, (3) to determine the extent of a known recurrence, or (4) if it could potentially replace one or more conventional imaging studies when it is expected that conventional study information is insufficient for the clinical management of the patient. Restaging applies to testing after a course of treatment is completed, and is covered subject to the conditions above.

D. Monitoring: This refers to use of PET to monitor tumor response to treatment during the planned course of therapy (i.e., when a change in therapy is anticipated ).

NOTE: In the absence of national frequency limitations, contractors, should, if necessary, develop frequency requirements on any or all of the indications covered on and after July 1, 2001.

(This NCD last reviewed December 2004.)

Cross Reference
See NCD for SPECT (§220.12).

Claims Processing Instructions

•TN 527 (Medicare Claims Processing Manual)
•TN 628 (Medicare Claims Processing Manual)
•TN 1817 (Medicare Claims Processing)
•TN 1833 (Medicare Claims Processing)

Seems you should be covered under B and C

daisy366's picture
Posts: 1493
Joined: Mar 2009


My comments are based on assumption that you are using Aetna rather than medicare as your insurance prvider.

I am UPSC also & had same situation 2 years ago. 182.00 is code for uterine. I appealed the protocol Aetna has re:PET scans (you can go on Aetna's website and get this). Essentially it says that they consider PET scans experimental for uterine ca - they don't have this restriction for ovarian ca. Protocol prohibits PETs for monitoring after initial treatment (your situation). In my case, Aetna paid (their mistake) for my first PET prior to initial chemo. I used this in my appeal saying they set the precedent. My doc did all he could including personal consult with the Med Solution (their clearinghouse) doc.

Long story short. After much work to no avail - I was denied and denied again. I had to get a CT instead of PET scan. They finally allowed a PET only AFTER the CT scan showed progression (recurrence) of disease.

Regarding their failure to pay for PET - the usual procedure is that this needs PRE-APPROVAL for insurance to pay. If your radiology provider failed to get this, you might be able to come back on them for this. If they brought this to your attention and YOU authorized without pre-approval then I think you are stuck with debt. It's all worth appealing if you have the energy for this.

I may be in this same boat someday since I have now switched to BC/BS and don't know what they cover.

I wish you all the best. Mary Ann

Kaleena's picture
Posts: 2036
Joined: Nov 2009

Hi Mary Ann:

I used to have BC/BS and they had approved my PET scans and my out of network doctor and made him in network. HOwever, I recently changed due to high premiums to Health AMerica and was assured that I would have exactly the same as I did with BC/BS. Well NOT!

Not only have they denied my PET Scan I was to get last week, (They wanted a CT Scan first), I also had to have it done at my local hospital or pay 40% of the bill. Even though they found microscopic cells in a lymph node that was removed, they will not approve my PET Scan. It doesn't fit the medical necessary qualifications.

You should be ok with BC/BS.


Posts: 4
Joined: May 2011

I'm a medical coding manager at an acute care facility. There are additional codes for the metastatic sites that can be reported as secondary to the primary uterine code. The issue is that this is more of a policy issue than a coding issue. Some payers unfortunately stick to rigid guidelines in terms of covered diagnosis and tests. I agree with an earlier statement that the best route is to ALWAYS appeal. Have your doctors submit as much info as possible to your plan and complain

Also, if you are receiving denials because prior authorization was not obtained the facility should be liable. They are responsible for getting the authorizations.

I can relate because my mom has Blue Cross and she just had her first PET Scan last week. We couldn't schedule it until the approval was obtained from BC.

Kaleena's picture
Posts: 2036
Joined: Nov 2009

My only problem was I was told that I would have the same exact coverage with Health America that I had with Blue Cross/Blue Shield. If my doctor wanted a PET Scan, I got a PET scan. I was assured many times that I could get up to 4 PET scans a year. The only thing they left out is that it had to be "medically necessary" which my case doesn't fit it! Can you believe that! I think it is just ridiculous that the insurance company is placing itself higher than a doctor in ordering tests. What they want me to do is first get a CT Scan and then if they see something do a PET.

With my history, lets bypass the middleman! Not every case is the same. I have had enough CT Scans that I should be glowing. In fact, I would get less radiation with a PET Scan. They just don't see that. Because then its better for them. Its like a BOGO (By one, get one). Why only make $14,000 when you can make $28,000.

I know in some cases you can't do a PET scan. Diabetic, recent radiation, etc. But I have none of that. I do however have a lot of scarring which a CT Scan can't determine has cancer cells. That is why I would prefer a PET Scan.

I am still working on it. I will let you know.


Posts: 86
Joined: Jan 2010

More up to date data from medicare guidelines-while most cancers are covered for initial scan for staging, monitoring is only covered for designated cancers. You can see they are doing another study but at present, uterine is not included. You can find many earlier posts about how frustrating this is since USPC has statistics and treatment protocols much more suimilar to ovarian that uterine.

Subsequent Anti-tumor Treatment Strategy
As part of its April 3, 2009, NCD, the CMS reviewed evidence on the use of FDG PET in the subsequent treatment strategy for patients with tumor types other than those seven indications currently covered without exception (breast, colorectal, esophagus, head and neck (non-CNS/thyroid), lymphoma, melanoma, and non-small cell lung).
As a result, CMS determined that the available evidence is adequate to determine that FDG PET imaging also improves physician decision making in the determination of subsequent treatment strategy in Medicare beneficiaries who have ovarian cancer, cervical cancer, and myeloma, improves health outcomes, and is thus reasonable and necessary under §1862(a)(1)(A) of the Act.
Therefore, effective for claims with dates of service on and after April 3, 2009, for tumor types other than breast, colorectal, esophagus, head and neck (non-CNS/thyroid), lymphoma, melanoma, non-small cell lung, ovarian, cervical, and myeloma, CMS has determined that the available evidence is not adequate to determine that FDG PET imaging improves physician decision making in the determination of subsequent anti-tumor treatment strategy or improves health outcomes in Medicare beneficiaries and thus is not reasonable and necessary under §1862(a)(1)(A) of the Act.
However, CMS has determined that the available evidence is sufficient to determine that FDG PET imaging for subsequent anti-tumor treatment strategy for all other tumor types other than the 10 indications noted above may be nationally covered as research under §1862(a)(1)(E) of the Act through CED.
Therefore, CMS will nationally cover a subsequent FDG PET study for all other tumor types other than the 10 indications noted above, when the beneficiary’s treating physician determines that the FDG PET study is needed to inform the subsequent anti-tumor

daisy366's picture
Posts: 1493
Joined: Mar 2009

Does this mean that if our doctor requests a PET they will approve it?

Posts: 86
Joined: Jan 2010

I have disucssed with my doc and he feels if we use PET scan now that Medicare is primary, we will seek pre-approval so I don't have a surprise. I also had discussion with United Healthcare and they did say to come to them for pre-approval as well-since scans are scheduled benefit, they advise that PET scans are one category where they may not strictly be follow form of medicare as secondary insurer. I believe it is very important to find about approval before the test as financial surpise could be ugly- I have never had a scan denied (but just went on medicare 6-1-11) but amount paid by insurer under PPO was $1200 for CT scan and $5600 for PET.
I am repeating information about the PET Registry below as they are valuable part of this process- I have found that both radiology facilities I go to are aware of this (even though they groan at prospect of the paperwork).

I am adding a blurb on a website for radiation oncology that seems to address this issue.
National Oncologic PET Registry (NOPR)
The National Oncologic PET Registry (NOPR) was developed in response to the Centers for Medicare and Medicaid Services (CMS) proposal to expand coverage for FDG PET to include cancers and indications not presently eligible for Medicare reimbursement. Medicare reimbursement for these cancers is available if the patient's referring physician and the imaging provider submit data to a clinical registry to assess the impact of PET on cancer patient management. The NOPR implements this registry for CMS.

The NOPR is sponsored by the Academy of Molecular Imaging (AMI) and is managed by the American College of Radiology (ACR) through the American College of Radiology Imaging Network (ACRIN).

The NOPR is endorsed by the American College of Radiology (ACR), the American Society for Clinical Oncology (ASCO), and the Society for Nuclear Medicine (SNM).

Learn more about the National Oncologic PET Registry (NOPR) by visiting the web site: www.cancerpetregistry.org.

daisy366's picture
Posts: 1493
Joined: Mar 2009

Nancy, Thank you so much for reviewing this info - I will go on medicare in a year. But good to know what lies ahead.

Kathy, I feel for you - been through this misery. But what happened to the PRE-APPROVAL PROCESS? Seems like someone dropped the ball. This was a "surprise" that you shouldn't have had in my humble opinion.

Mary Ann

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