As Monty Python said "I'm not dead yet!!" (sorry, dark humor here)

The last couple of weeks have continued to be an adventure in insurance for Laurie and me.  Laurie asked that I practice my authoring skills as I drove a lot of the action.

After getting the results of the CT scan, we were shocked when the insurance company again denied the PET request.  After being told that we needed to do that and demonstrate the inconclusive nature, we couldn't believe it.  The reason was:

We found the service requested is not medically necessary in your case. We cannot approve the requested study. Your doctor must show that your disease state is such that aggressive treatment of that site would be an option. The information received does not show this.

Needless to say this didn't make any sense.  It refers to a "site" and aggressive treatment is chemotherapy, let alone the CyberKnife, radiation and chemo embolization.  All things we use to address the sites with activity.

I began to open all escalation paths.  I called my HR advocate who bumped it up her chain and I started working with a Cisco HR Service Delivery representative who works directly with Cigna.  I also called my Cigna Health Advisor who is managing our case from their end.  No one could understand the denial reasoning.  For the next week I had at least daily calls with each person who were in turn making a ton of calls and trying to get information.

My Cigna Advisor worked hard, but she found the same lack of information that we had.  She had several layers of her management involved and had the Cigna Medical Director for Oncology engaged. Unfortunately, no one ever provided her any explanation for what was going on.  None of her management seemed willing to explain anything.

In the mean time my Cisco HR SD person seemed to be making progress. There were a couple of calls that were made to our oncologist and several meetings that went on.  They asked for more information from us and we provided a report from the Advanced Medical Team that was done last fall which discussed where Laurie was at and what her options were.  One of the Cigna Medical Directors even called and talked with Dr. Dormady on Friday, but called back 15 minutes later and said that we'd have to file an appeal.  They promised my HR SD that they would create a report to explain what had happened and justify their position. They also said they were willing to have a conference call with Laurie and me to discuss it.  So far, no report and no meeting scheduled.  My HR SD is escalating it as they have had plenty of time to create the report by now.

On Monday Laurie made an appointment with our general practitioner doctor to see if she had any ideas on how we could proceed.  Laurie's still got the pelvic bone pain with no explanation and we don't know what the status of the 5 liver metastasis are as the CT is not conclusive.  Dr. Kwok called and talked to a Dr. Gratias at Med Solutions.  Well, when Dr. Kwok noted that according to the MedSolutions guidelines a PET scan is authorized to “Differentiate local tumor recurrence from postoperative and/or post- radiation scarring”, Dr. Gratias said that the section did not apply as the patient was not curative.

So this brings up 2 things:

1. Where in the document is there any statement about the stage of cancer or the curative nature? There’s nothing that we have ever seen in this document that states anything of that nature.
2. Who is he to determine the curative state?
• Technically Laurie was noted as being terminal when it moved to her liver (~10 months after her original diagnosis). They said her odds of living to 5 years were in the single digits with the initial diagnosis.  Well, we have shown that she is a survivor and is now 6 ½ years into this adventure. She is very strong and for the most part is able to live a normal life with this disease.  Most people don’t know that she’s battling cancer unless we tell them.  Do we just stop treating someone when their sickness gets to a certain point?  I think you know where this could go.
• Part of the strategy we have is to treat Laurie as a chronic disease by treating the recurrences with the knowledge that there are new treatments (i.e. immunotherapies) coming along on a regular basis that may enable us to cure her of the disease.

Needless to say it’s a rather disturbing development, but at least now we had an explanation of why they were being difficult and we had something concrete to deal with.

On Monday, Dr. Dormady's assistant who works on authorizations received 3 calls from Med Solutions saying that their Medical Director & Senior Oncologist would like to do a peer to peer with Dr. Dormady on Laurie’s denial for the PET/CT.  That happened today.  Dr. Dormady described that meeting in this way:

That was a nearly hour long battle...[...] Very acrimonious and angry. [...] Ridiculous. I was emotionally exhausted after that one.

However, the good news is that they did approve the scan.

We still need to get an explanation of what happened and fix some issues with Med Solutions. Laurie is far from non-curative (have you seen her lately??). We need to see the Cigna explanation and then talk with them about the situation. After all this it is our hope that we can find a clear path so we don't need to go through this kind of fiasco in the future. We still don't understand how MedSolutions and Cigna can take liberties with their Diagnostic/Imagining guidelines.  We will be making an issue of that.

The Plan for the Cervix and CT Report

OK, fun, fun. Last Friday (June 6th) I had a CT scan done to see what's going on where. There's a lot to note but I'll try to summarize efficiently.

• Lungs: There are several nodules in both lungs which have increased in size. There are also some new ones. The report states that a few of the nodules demonstrate "cavitation" which sounds bad but is actually good. My oncologist said this is the effect of the Avastin on the tumors. As the tumors are denied the ability to make a blood supply the area around them dies, cutting off their source. Since there are a fair number of them, localized therapy isn't an option so we will have to keep relying on systemic treatment (chemotherapy).
• Bone: That bone that was irradiated before, in March, has stubbornly remained painful. The MRI of the area only noted edema and inflammation. The CT scan notes "a persistent mottled lytic lesion" in the same area. I'd like a PET scan to break this tie because if it's still active tumor then it needs to be treated. More on that later.
• Liver: There are still the same lesions in the liver. No new lesions. The CT report states that a couple of the tumors have increased in size. I took the CD of the images to my interventional radiologist at Stanford (the one who has been doing the chemoembolization) and this is what he had to say in the email back to me: "Overall, I am very pleased with what I see on the new CT scan.  2 of the lesions are each 2 mm larger, 3 lesions are a few millimeters smaller.  4 of the lesions (including the 2 that are a little larger) look uniformly dark and sharply outlined, indicating necrosis.  1 lesion is still fuzzy edged and enhances a little bit, suggesting that it is not completely dead, but it has gotten smaller.  I also do not see any new spots."
• Cervix: The cervical lesion wasn't even mentioned on the CT scan but we know it's there. A biopsy was done on it, as noted and shared on my last post. Here's the plan for that: We thoroughly discussed radiation options with the radiation oncologist and surgical options with two gynecologists. The consensus is that surgery isn't the best option for me right now, mainly because in order to do surgery of any kind I would have to stop taking the Avastin for 4 weeks prior and 6 weeks after. But the Avastin is being credited for holding the stuff in the lungs steady and overall the chemotherapy is also to be credited for the disappearance of the lesion on the lower left side of my abdomen. If I do the radiation I'll be able to treat the lesion in my cervix and still receive my chemotherapy which is needed for the other stuff. Radiation should start next week. I'll do three weeks of conventional radiation, followed by a two-week break, and then 5 sessions of CyberKnife in the same area.

The insurance company has been a real pain in the ass this time around. My oncologist finds a PET scan most useful for monitoring my condition, coupled with a CT or an MRI for clearer imaging. The CT and MRI will identify tumors but cannot distinguish between dead or alive ones. The PET scan will tell which ones are still active or dead. But when he tried for the PET scan this time they refused to authorize it, stating that I had to have a CT scan first and then he could order the PET scan if there was anything inconclusive. Well, it would be nice to know which lesions in the liver and lungs are active or not. I would also like a tie breaker between the MRI and CT scan to see if there is still active tumor in my bone. If so, I need to follow through with additional treatment. When my doctor asked for a PET scan again yesterday they still denied it. This is what they said:

"We reviewed information from Shane Dormady, your benefit plan, and any policies and guidelines needed to reach this decision. We found the service requested is not medically necessary in your case. 

We cannot approve the requested study. Your doctor must show that your disease state is such that aggressive treatment of the site would be an option. The information received does not show this."

What the F^@& does that mean? What do they consider aggressive if not radiation, chemoembolization, CyberKnife, possible HIFU on the bone if there is still activity there, for which we need the PET scan to help determine? And all of this while on sustained chemotherapy? Maybe the only site that we don't have an aggressive treatment option is in the lungs, but all of the other areas stated above have aggressive treatment options. We will be doing radiation and CyberKnife for the cervix, chemoembolization for the liver, and possibly a new technology being performed at Stanford (HIFU) for the bone, if we can determine that there is in fact tumor activity there.

David works for Cisco and the insurance is Cigna. Cigna manages the insurance but in the end it's Cisco that pays the medical bills. So, there are channels within Cisco to try to get this overturned. David has activated these channels and right now this issue is being escalated up in about 3 or 4 directions and has caught a lot of attention, both at Cisco and at Cigna. Apparently there was a meeting this afternoon between Cigna and Cisco about this. At this time I don't know if they have come to a resolution.

[EDIT: David just sent me this note: "OK, I'm getting clarity.  It sounds like it is going to get approved.  I'm talking to Mary and she said all their doctors think it needs to happen.  There is a call tomorrow that is between Cigna and MedSolutions and she's pretty confident it will go fine."]

For those of  you who like to read the reports, here's the CT scan report: