January 2, 2009 at 5:12 am #24210
So glad to hear that everything is moving forward and they finally are doing what they should have all along! Wishing you a very successful appeal! The lack of equity in our present medical system is so frustrating and unfair…but that’s another subject!!
Wishing you and your family all the best in the New Year!
JeanDecember 31, 2008 at 4:24 pm #24209
Wow Jean! What a lot of great information! I did in fact, yesterday, get in touch with my case manager at BCBS and she was able to guide me as to what to tell the doctor to say. Isn’t is silly that we, untrained professionals, have to tell the doctor how to navigate an appeal and what to say. My case manager also said the appeal needs to be generated by the doctor. I was able to get hold of my doctor’s nurse practitioner and she was able to get the ball rolling with the doctor. They will do the appeal for me. I had no idea who to talk to or how to get this going. You helped give me the back bone to go back to the doctor on this. Thank you for all your help! Happy New Year to you and your family!
Hi Violarob – my understanding for the reason my doc wants to do a PET/CT is because I am looking at doing chemoembolization or radioembolization and the PET will help him see how much of my very large tumor is still viable, so the embolization will be more accurate. There is a possibility some of my tumor has died due to the chemotherapy I’m on. Thanks for you support……Happy new Year!December 31, 2008 at 8:30 am #24208violarobMember
Insurance battles really stink!
Regarding the whole issue of PET scans: My oncologist at MD Anderson prefers CT scans with iodine contrast rather than PET scans. He says he gets better visualization with the CT scans, especially when they are viewed in series over a period of time for comparison to look for shrinkage and other changes.
However, that is just his experience and preference. YOU should be getting the care you feel you need/deserve. Keep us posted on how things are going.
Violarob in TexasDecember 31, 2008 at 7:17 am #24207
I’m so sorry for my very slow reply. I have had a very difficult week…my mother was brought to the hospital with chest pain, which turned out to be an aortic dissection. She was in the CCU for awhile, but was discharged yesterday and is now home and doing quite well. She was in a hospital 45 minutes from where I live, in good weather…then add the snow and ice and Christmas and work!
I did want to let you know what I had found out about your insurance issue. I was able to talk with three people in two PET departments. They all said that while you can initiate the appeal, it is only the doctor who really has the power to work toward getting this approved. I did learn that BCBS in Washington State is now approving all PET scans, regardless of diagnosis, but all have encountered problems with out of state BCBS plans. The federal government/Medicare lists those diagnosis that they cover and when one fall outside these, the reason usually given for denial is that it is experimental/investigational for that diagnosis. They all said that it can take a lot of persistence, but that the doctor most importantly, has to be persistent in the appeal…or maybe that the patient has to be persistent in making sure the doctor does what he/she needs to do! They all suggested that you put in the appeal as soon as possible so that the doctor can do what is needed to help push it through e.g. faxing of all of the requested records. One person suggested that you obtain the codes involved with this, putting it in your correspondence, and that might speed their processing. That would consist of the diagnosis code (ICDA) and procedural code (CPT). Another person suggested that you request a case manager from BCBS and that such a person can sometimes push through appeals/authorizations that might otherwise not have been approved, especially as they become familiar with your case. Two people suggested that, once you have made the appeal, to obtain the name and phone number of their staff MD who reviews claims and have your physician call them directly. It’s called a peer to peer review. They said that it is very commonly done and can be a great deal of help in obtaining approval. They all said that your physician does need to be involved and is the only way for you to get this approved…they were adamant that you simply could not do this alone! They were all quite surprised that you had been placed in this position and that your doctor was not taking more initiative in the matter. I was just wondering if it would be helpful for you to contact the person who does the insurance authorizations for the PET facility that you would be using…I found all of these people really helpful and felt that they would certainly do all they could in helping obtain authorization.
There certainly doesn’t seem to be any magic answers to this! In essence, they all said that there wasn’t anything that you could say that will really make a difference, to go ahead and put the appeal in place, and then get your physician involved.
I hope you had a very good Christmas Suzanne. Wishing you all the best in this new year!
JeanDecember 28, 2008 at 1:09 am #24206
Hi Jean – thanks for your help. You guys try to stay safe and warm over there. Here in the south we’re having above average temps. Hope you had a Merry Christmas. I’ll wait to hear from you as soon as work gets back to normal where you are.December 23, 2008 at 6:29 am #24205
I was able to talk with one person today who was only marginally helpful and am going to try someone else tomorrow, so will post then. We’ve had a big snow storm here in Seattle so many people haven’t been able to get in. Hoping a more helpful person will be there tomorrow!
JeanDecember 22, 2008 at 8:00 pm #24204
Wow! I love this website! Thanks for all the support and the advice. I’m blown away.
Jean, you’re going above and beyond. Thank you. I’ll look for your post later today or tomorrow.December 21, 2008 at 7:21 am #24203
I just can’t imagine how frustrating this must be and I certainly don’t understand why your doctor will only write a letter of medical necessity after you appeal it. That makes absolutely no sense and only puts off the scan…it just seems wrong! And it does seem unfair to put you in that position…as you said, you don’t have the medical knowledge to make a proper case. And how many people would!
I do know someone who works at a PET facility here in Seattle. I will give her a call on Monday and see if she can put me in touch with the person who does their insurance authorizations. I’ll see if I can find out what would help obtain authorization, what wording to use, points that need to be made etc. Hopefully I can find out something that might be useful. I’ll post on Monday and let you know what I learn.
I disagree with the information regarding liver lesions not showing up well on PET scans…I have seen PET scan images and a tumor is very easily seen. I hate to disagree with a radiologist but I just think he’s wrong!
I am so much hoping for some good news for you.
JeanDecember 21, 2008 at 1:41 am #24202darlaParticipant
I understand your frustration & aggrevation. Everything involved with CC is so confusing and none of it really makes sense or follows any rules. If BCBS has already denied you once I don’t understand why the doctor &/or Radiologist won’t assist you until you do an appeal on your own. Like you stated, you are not a doctor & don’t have the knowledge to make a proper appeal with the information that they need to hear to get them to change thier opinion. Maybe someone on the site has had to go through this process & will come up with something to help you out.
As for the PET Scan. The way it was explained to us is that it will show things that other tests do not, especially within the liver. I believe it has something to do with a small amount of radioactive type material along with a sugar type substance that will deliniate any hot spots within the body. Keep in mind that we were under a lot of stress at the time that all of this was going on so I may not have this exactly right, but that is how I understood it.
There has got to be a way to prove to BCBS that this test is vitally important in diagnosing your disease. Also as Jean stated, doing the PET could conceivably save money by eliminating tests that may not be as effective. These insurance companies think they are God, but they are not & it is so unfair that they can play with people’s lives this way. Don’t give up Suzanne. Keep on fighting for what you want and need. I wish you the best with your fight with BCBS & your fight with this horrific disease. Take care. I will be thinking of you. Keep us up to date on how things are progressing.
Lots Of Love & Hugs,
DarlaDecember 21, 2008 at 12:52 am #24201
Thanks for the info. My doctor says he will help me only AFTER I make the appeal to the insurance company. What am I, a doctor? I don’t have the medical knowledge to make a proper case. This is so frustrating! Plus, I’m getting information from a family friend/radiologist that the liver normally shows up very bright on PET, so it’s really difficult to see anything. But I read on this web site of people getting good information from a PET. I’m very confused. I don’t want to give up but this is almost more than I can take.
SuzanneDecember 19, 2008 at 6:56 am #24200
The article that Patty posted about PET scans is under the New Developments section. It may be very useful in fighting this. I have really no answers but keep in mind that the goal of insurance companies is NOT to spend money. So this needs to be presented in a way that shows them what they’re actually saving by doing the PET scan. What other tests/procedures might *conceivably* be needed if the PET scan is not approved…MRI, biopsy? What expenses are they avoiding by approving it. Your doctor should write a letter of medical necessity that addresses these issues and they do that all the time.
It must be so frustrating…I’m sure there are no words to convey that! Keep fighting…persistence can sometimes make a big difference
Wishing you all the best in this fight on all fronts.
JeanDecember 19, 2008 at 6:51 am #24199tiapattyMember
Here is the post about the article on PET scans and their effect on treatment:
PattyDecember 19, 2008 at 1:09 am #24198lainyParticipant
They are absolutely crazy!!!! PET Scan showed the best results for Teddy and he has had 2 in the last 6 months. In fact his cyber knife was based on the fact that the PET Scan showed no other cancer!December 19, 2008 at 12:23 am #24197
BCBS denied the PET because they say it is “experimental and investigational for cholangiocarcinoma”.December 18, 2008 at 2:52 pm #24196darlaParticipant
I do believe that I read a post somewhere about PET Scan studies & relavence to diagnosis of CC. I can’t seem to find it now but if I do I will post it.
I also posted that in my husband’s case, nothing was showing up on any of the other tests & that the liver needle biposy & PET Scan were the only tests the showed that he had CC in 95% of his bile ducts. Until the PET was done they were not sure what was going on except that it was suspected that he had some type of cancer. I honestly feel that with the interahepatic bile duct cancer, especially if it has not spread to anywhere else, the PET Scan is the most effective & important test to diagnois it and that it should be suggested as early on as is possible. Now you need to get BCBS to agree to this! Can your Doctor & Radiologist submit something to them to convince them that it is “medically necessary”? I for one feel that it is & I am sure so do many others. I am hoping for the best out come for you in this situation. Don’t give up. Keep on fighting.
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