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PET-CT "not medically necessary"

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I'm wondering if anyone else has had difficulty obtaining permission from their comprehensive Anthem Blue Cross coverage for a PET-CT scan after surgery to remove a 3-cm lymph node from the neck which biopsied to be a metastatic Squamous Cell Carcinoma.

Is this going to be a trend? Does Blue Cross fear an excessive number of false positives from the PET-CT? Has Blue Cross suggested alternate diagnostic protocols for anyone else here? Does Blue Cross deem a metastatic squamous cell carcinoma to be less than serious?

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

I don't know what state your are in and policies vary but BCBS has been excellent with me. Had CT scans yesterday and they were approved weeks before the procedure. That dosen't help you at all. I know every insurance company has an appeal process which I would waste zero time in starting and documenting everything. Sometimes it is just a coding error by the biller that needs to be changed to something the insurance company will acceapt. BCBS actually called me and assigned a case worker from an entity which they hire to oversee all costs associated with my cancer treatment. I believe this person to be a watchdog for the insurance company but to date they have not denied anything within reason. If you have the means this is important enough to pay out of pocket now and fight with them as you go along. I am so sorry with your frustration with BCBS. It seems cancer isn't bad enough. When I was diagnosed it seemed every drain in my house clogged up and I had horrible problems with my house plumbing. It just didn't seem fair. People with cancer should have their tickets stamped to avoid all other life problems. Try to find someone on the other end of the phone that will at least listen and be helpful in an appeal process. Try to have someone assigned to you. They have an interactive website which may be useful for gathering ammunition for the fight. Hope you can work it out soon.

debbiejeanne's picture
debbiejeanne
Posts: 2433
Joined: Jan 2010

Rat, I just had to tell you that the background in your picture looks like a piece of Heaven on earth. It looks especially nice today when I really needed it. Have a wonderful day!
Deb

ballonk's picture
ballonk
Posts: 54
Joined: Mar 2004

...for the first two years after my radiation treatments (radiation ended in December 2003). However, BCBS denied approval the third year out (considered no longer medically necessary).

I discussed this with my radiation oncologist and he said he would prefer that I have the PET scan but he could also understand BCBS's point of view. He said that with my type of cancer (SCC), generally he'd expect to see a reoccurrance in 1-2 years. He said since I was 3 years out, chances were less that it would come back.

I asked if it was important enough that I fight with BCBS to try to get approval and he said he didn't think I'd win my appeal but I could try if it would give me peace of mind. I asked about paying for it myself (about $4,000 at the time if I remember correctly). He said if I was his mother he would not recommend that I do that so I took his advice.

While I didn't have any further PET scans, my radiation oncologist does follow up with an annual chest Xray and my ENT does an annual scoping of my throat and esophagus.

Hope this helps.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Thanks. This is good to hear. (Especially the part about the chances of recurrence being reduced over time.) I've been given a case worker already. I'm told he/she's the one who referred this up to the main medical director, as they didn't feel they could approve it. However, I also have Letitia, in BCBS Customer Service, who has been bulldogging my case for the past three days, collecting phone numbers, linking my caseworker to my medical providers, arranging conference calls, and updating me several times a day on her progress. Way above and beyond, so to speak.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

I don't have BCBS, but my presumption is they don't want to pay the cost of such an expensive procedure. But to me, and looking at all of the information provided from the PET, I feel it's a very valuable tool.

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Yep, after sitting on the information for seven working days, the word from BCBS was PET-CT DENIED. The justification provided was that I had not yet been given any other diagnostic tests. So, now, my Doctor is sending me in for an MRI. I was told eight days ago, that the most effective tool would be for me to have an immediate PET-CT, to see what else in my body lights up. I am aghast. My Doctor should specify my care, NOT THE BCBS UTILIZATION COMMITTEE. I am also suffering a serious erosion of confidence in my ENT, that he would cave to this, and not continue to pursue the most effective diagnostic tools available to me.

Deb L

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

Never mind, I just figured it out. I have Kaiser and I've been told I'll be getting PET/CT for at least 5 years. Of course that could change :-\

Best,

Mick

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

Are you out there?

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I had a PET pre op and had no trouble. Also scheduled another one for May 26th today. So far no problem with BCBS. Good luck and God bless.
Steve

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I have BCBS (not Anthem), and they were fine with paying for my PET scan.
Matter of fact, it was Aetna that was sh*tty about it. I had my rads, chemo and modified radical neck dissection at Johns Hopkins, which is about 90 minutes from my home. Aetna paid for all that, but for some stupid reason they wouldn't pay to have my PET scan done at Hopkins. I had to go to my local hospital for that.
As of Jan. 1 my employer dumped Aetna for BCBS, and BCBS let me have my scan at Hopkins.
Go figure.

--Jim in Delaware

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I don't even HAVE a diagnosis yet. One funky 3-cm lymph node high in my right neck, needle-biopsied as inflammatory, surgically removed, and found to be Metastatic SCC. A couple of half-done nasal scopings, complicated by my gag reflex. An excessively passive ENT doctor who suggests the PET-CT as the best next step, sits quietly while it takes over 8 days for the insurance company to tell me I can't have it, and now, tra la la, we'll just go with an MRI, then. And, if you really want the PET-CT, well, I guess you could go ahead and pay for it yourself. Um. No. I need a doctor who will tell me, confidently, what I need. I need a diagnosis. What is going on here? What do I have? Where is my primary? Or, for goodness sake, look harder, and then tell me unequivocally that you CAN'T find it. I want my doctor to stand up to the insurance company. I want my diagnosis and treatment to be based on the medical knowledge of an expert, rather than the actuarial tables of a quasi-medical pencil-necked accountant.

Mick are you out there? When they found your 3-cm tumor, did they remove it first, or did they start hunting for the primary? Who was it who finally determined that your primary tumor was occult? What did they base it on? A PET-CT? Did you have an MRI? What did it tell you? Remind me, are you HPV positive? Will any other treatments follow your radiation? Our early experiences were so similar. Perhaps I can learn from your experiences.

Deb L

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Deb,
I feel your pain and frustration. In my case I saw the ENT on the 1st visit for about 5 minutes he looked, felt and told me he was 95% sure it was cancer. SLAP! Ordered a needle biopsy and I went straight into another office where a lady set up the appt. right then and gave me directions. Got it done went back to see him all in one week,he told me it was definitely SCC and ordered a chest and abdomen ct and right side neck dissection. Went straight back to the same lady and she scheduled all of this right then BEFORE I went anywhere. Just telling you how I was handled and if you are not getting this much attention seek another ENT. But stay strong and hang in there and keep posting here, people will help you here. Bless ya and best wishes,
Steve

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Deb,
I feel your pain and frustration. In my case I saw the ENT on the 1st visit for about 5 minutes he looked, felt and told me he was 95% sure it was cancer. SLAP! Ordered a needle biopsy and I went straight into another office where a lady set up the appt. right then and gave me directions. Got it done went back to see him all in one week,he told me it was definitely SCC and ordered a chest and abdomen ct and right side neck dissection. Went straight back to the same lady and she scheduled all of this right then BEFORE I went anywhere. Just telling you how I was handled and if you are not getting this much attention seek another ENT. But stay strong and hang in there and keep posting here, people will help you here. Bless ya and best wishes,
Steve

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

*

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hey Deb,
I feel your pain and frustration. In my case I saw the ENT on the 1st visit for about 5 minutes he looked, felt and told me he was 95% sure it was cancer. SLAP! Ordered a needle biopsy and I went straight into another office where a lady set up the appt. right then and gave me directions. Got it done went back to see him all in one week,he told me it was definitely SCC and ordered a chest and abdomen ct and right side neck dissection. Went straight back to the same lady and she scheduled all of this right then BEFORE I went anywhere. Just telling you how I was handled and if you are not getting this much attention seek another ENT. But stay strong and hang in there and keep posting here, people will help you here. Bless ya and best wishes,
Steve

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

I have no idea why it posted 4TIMES?????????????????

D Lewis's picture
D Lewis
Posts: 1533
Joined: Jan 2010

I did the multiple postings thing the other day. You have the option of editing each post you do. I clicked on "edit" and then deleted the contents of the box, for every post but one. You will still have the heading though. And you will have to put something in the box, in order for the edit to stick. An asterisk will do.

Thanks for your insights and words of advice. I wish I was moving forward as quickly as you.

Deb L.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

D Lewis,

When they found your 3-cm tumor, did they remove it first, or did they start hunting for the primary? Who was it who finally determined that your primary tumor was occult? What did they base it on? A PET-CT? Did you have an MRI? What did it tell you? Remind me, are you HPV positive? Will any other treatments follow your radiation? Our early experiences were so similar. Perhaps I can learn from your experiences.

Deb L

In my case, the ENT felt strongly that I had throat cancer (tonsil) from observation on the first vist. That same day (Friday) he sent me down for a CT and EKG. The following Monday he removed my tonsils and did a quick biopsy and confirmed SCC stg III in the tonsils.

I also had a tumor or lymphnode that swelled up prior to the tonsils coming out. He didn't see the need for a needle biopsy as he already determined I had SCC. He did send tissue out and about three weeks later it came back positive for HPV.

He opted not to have surgery to remove the tumor at that time as it is so invasive. He felt that there was a good posibility that the tumor would shrink or dissolve during chemo and or the chemo and radiation. He was correct, the tumor dissolved between the 2nd and 3rd round of chemo. They actually did a CT between my nine week chemo and the start of the seven week concurrent chemo and radiation.

I've had two PETs, one after the tonsils came out, but before I started any chemo or rads. Then another PET about 8 weeks post treatment. I get a CT about every three months right now.

After the 35 radiations and concurrent chemo, I'm just in a maintenance mode, ENT scopes and port flushed every 6 - 8 weeks. Lab blood work and CT with my chemo doctor about every 12 - 16 weeks and radiologists scopes and visit about every six months, so far.

John

backachedp
Posts: 124
Joined: Oct 2009

Bob and I have BCBS of Texas and they will not pay for the Nurse that came here they will not pay for his Isosourse food...but most of the other bill's have been paid to some degree...I am very upset about the food for his tube...it IS sustaining his life as he has not eaten since before Christmas. How can they say we don't cover that and the Nurse..who came here when he had the Chemo pac on..Thank Godness he had his Port removed or our bill would really be high!!! It is such a shame how Ins. Companies don't cover alot of important things. PET Scan's are so very important!! They won't pay for a Colonoscopy till you are 50...

micktissue's picture
micktissue
Posts: 432
Joined: Dec 2009

I answered this previously but it seems to have gotten lost. I forget exactly what I said before, but I'll try to get down as much as I can recall.

1 - When they found your 3-cm tumor, did they remove it first, or did they start hunting for the primary?

They hunted for the primary which has not been found. I had MRI, PET/CT, multiple scopes, and a random biopsy during the neck dissection. All is clean. There is no evidence of a primary.

2 - Who was it who finally determined that your primary tumor was occult? What did they base it on? A PET-CT? Did you have an MRI? What did it tell you?

That they could not and have not found it makes it an occult primary, so I guess it was the surgeon that actually called it that. It told me that my body got rid of the primary but not before it made it to the lymph and liked it there so much it decided to grow and make friends. It also told me that the rad treatment was going to really suck. They don't know where it was so their going to irradiate everything.

3 - Remind me, are you HPV positive?

I am HPV+.

4 - Will any other treatments follow your radiation?

I'll get 3x cisplatin on day 1, 22, and 43 of rads.

5 - Our early experiences were so similar. Perhaps I can learn from your experiences.

Absolutely, and I from yours.

Best,

Mick

MaryRC's picture
MaryRC
Posts: 114
Joined: Feb 2010

Hi have United Health care and I am lucky I guess,they approved the PET in just a few hours. I am so afraid though. My family doctor told me that it could very well just be cancer in the lump, but the ENT spec. wants to be 100% sure with the PET scan. I am so very much afraid is why I joined this site. I hope you get you PET scan soon.

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

Glad you found your way here....

Reading your other post I can very well relate and sympathize with you. I remember the Friday that I found out that I had SCC stage III in my throat as well. It was a shocker to say the least. I remember the week-end in-between finding out, and having my tonsils out very well. I was feeling very good other than a small irritation in my throat that wouldn't go away prior to the diagnosis. That week-end was pure hell to me and my wife. I wasn't diagnosed stage III until he removed my tonsil. I also had a lump in my throat that came up the last few weeks before diagnosis also. I gathered all of my important documents and account information for my wife I wasn't sure if I was going to make it through that week-end....

But I did make it, the surgery, the nine weeks on chemo and then seven weeks of concurrent chemo and radiation. It's rough and not fun at all, but you can make it also.

One thing that I hope the check out for you is if it is HPV derived. The sent my biopsy out for testing of that and it did come back as HPV positive. HPV related throat cancers tend to respond well to the treatments if that's any comfort.

Hopefully your PET will go well and it will be confined to that one area. Usually there is a primary and secondary source. For me the tonsils were the primary the lump the secondary. All has been good since treatment, no signs of cancer present. The lump actually dissolved after the second round of chemo for me....

I also have United Health Care as my work primary provider and contracted through the Watson Cancer Center for Research here in Lakeland, Florida where I live and work.

United Health Care came through very well for me and I had very little problems with anything. If I had a prescription get hung up, I could call and the gate keeper for our plan had it resolved within a few hours...

Good Luck and God Bless...
Keep us posted and feel free to ask any questions you may have.....
John

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