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PET scan coverage... and hello!

Laralyn's picture
Laralyn
Posts: 454
Joined: Apr 2012

I was thinking of posting a check-in over the weekend, and was reminded just now when I got the call that my insurance (Blue Shield) doesn't cover PET scans for surveillance for head and neck cancer, after the first post-treatment scan. I think the doctor is trying to find a way around it, but I'm overdue and I don't want to keep putting a scan off. I'm disappointed, but I figured a CT scan is better than no scan at all?

I haven't been posting much, but I've been checking the board every day and thinking of everyone here. I was going to post that I'm doing OK, but actually I think I'm doing great. I had a bad sinus infection (first of my life) after a two-week cold and cough, and was on antibiotics for a while. It left one ear ringing and if it doesn't clear up, I'll have to get it checked out since hearing loss and ear ringing is also a side effect of Cisplatin. Of course, every cough or bit of short-windedness starts the worry but I manage to set it aside and focus back on the current moment. The difference between "doing OK" and "doing great" is all in the point of view, right?

It was just over a year and one month ago that I was first diagnosed, to put things in perspective. My taste is still somewhat wonky but I've started to be able to taste chocolate finally, and tart tastes are no longer off the charts. I can eat chicken again (it was too dry for many months) and I think I have more saliva now. I still feel lucky and blessed, and I never want that awareness to fade. Every minute matters!

So hello again, everyone, and I hope today is sunny where you are! :-)

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

So great to hear from you and hear that you are doing GREAT! Sorry for the few bumps in the road but hopefully that will all be behind you now.

I just wanted to touch on the Blue Shield issue. I too have Blue Shield and I haven't had any problems getting my scans covered. We are at about the same place in recovery as far as time goes. I just had my 9 month PET/CT scans. I had 3 month scans as well. My dr hasn't had any problems getting anything covered. The only thing they did require was that I had the scans at my local hospital and not have them done at USC. Maybe your dr should make sure he's not requesting a specific location for you to have it done. Maybe they will be more willing to pay if it's at a preferred location in the case of an HMO or at an approved center that will accept a certain Pre determined fee.
Just a thought, I'd hate to have you not be able to get the important screenings done.
Billie

CivilMatt's picture
CivilMatt
Posts: 3066
Joined: May 2012

Hi Laralyn,

You now can celebrate a clean scan with some chocolates (I would).  I don’t know how to answer the scan dilemma; it seems we all have a similar story.  Sorry about the side effects, but I am happy you are “doing great”. 

Watch the chocolate on your keyboard and good health to you.

Matt

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Laralyn,

These doctors are pretty sneaky at getting past the loop holes.. but I am sure a CAT Scan would also be very telling for a doctor as well, and if there is anything questionable.. well I think the insurance would probably cover the PET scan. Funny these insurance companies.. my Dr, had me get three mri's two months ago, because the insurance wouldn't cover the thoracic area by itself. But if he ordered Head to Tail Bone, they would.. so it cost me an hour in the MRI tube.. but it worked!

Meanwhile, so happy to hear you are doing so well, and have recovered from your sinus' and cold. That had to be tough after everything you've been through in the last year.

How are things in your new home? Finding you way around the new neighborhood?

Best wishes,

Kari

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

So glad things are turning around for you and getting back to normal...and you're right, a CT is better thn no scan.

JG

phrannie51's picture
phrannie51
Posts: 3821
Joined: Mar 2012

right behind you this last year, I wonder if that means I'll be able to taste chocolate soon?? Laughing  Anything sweet I'd take, but I miss chocolate.  My husband and I were talking this morning....a year ago right now we were on the 1st week of radiation...with one chemo under our belts (I way we, because he drove me to the Onc's office every day for the Amifostine, then came and picked me up 2 hours later, to take me to rads...for 7 weeks).  We didn't really know what was ahead of us, except most of it looked bleak.  Here we are today....almost like nothing ever happened.  We ARE fortunate/lucky/blessed!!

I always like hearing your updates....I lived on them when I was in treatment....whatever Laralyn was doing, I was going to do it too (except when you got so darn sick, of course)...didn't want to follow that one, but still I felt like you and I were holding hands thru it all.

p

yensid683
Posts: 241
Joined: Apr 2012

A cloudy day in NY, but also sunny.  We seem to be on similar paths, 13 months ago I was dx as well, and I too am feeling so much better!  I find it strange how differently tastes recover.  Salt and sweet came back within a month of finishing rads, chocolate was actually one of the few things that I could stand.  Tart/sour is also recovering, it is very tough, but no longer devastating to have fresh strawberries.

Saliva is coming back too, it was not that long ago that I couldn't eat fresh fruits or vegetables without extra water, now I can eat them like normal people.  Seems a small thing, but for those of us battling or recovering, it is huge!

I spend a lot of time on the boards, reading about others struggles and I pray for each one of them, hoping that they too can join club NED!  I still gain strength from the commonality of our experiences and from the wonderful people who are the reluctant members of our club.

 

jim and i's picture
jim and i
Posts: 1666
Joined: May 2011

So good to hear from you. I think most insurance doesn't cover the PET after the 3 month PET. Jim's cancer has spread to his lungs and they still only do a CT. As for the chocolate, tht's great. Almost 2 years out and all sweets still taste bad to Jim. Praying all results are positive.

Debbie

Grandmax4's picture
Grandmax4
Posts: 594
Joined: Dec 2011

to hear from you and happy things are going well

hwt's picture
hwt
Posts: 1991
Joined: Jun 2012

My ONC said I wouldn't be getting anymore PET scans, just CT scans which have moved from 3 months to 4 months. I was surprised but she said she is comfortable with that. Glad to hear that you are doing so well. prayers for continued good news.

Candi

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Laralyn,

I looked up the treatment guidelines of the National Comprehensive Cancer Network, which are very highly respected by cancer doctors and researchers, and they recommend only one post-treatment scan 6 months out.  If the scan shows no cancer, the guidelines recommend no further scans if the patient does not have any symptoms: 

It is worded like this:   "Post-treatment baseline imaging of primary (and neck if treated) recommended within 6 months of treatment.  Further imaging as indicated based on signs/symptoms; not routinely recommended for asymptomatic patients."

The Superthread has a link to these guidelines.  This is on the page labeled FOLL-A. 

Insurance companies often based their coverage policies on whether the scan is deemed necessary under accepted medical practice.

Even so, I would also want the piece of mind to get additional scans periodically in the future, even if they are not recommended from a clinical perspective.

Michael

 

 

MICH4EL's picture
MICH4EL
Posts: 73
Joined: Mar 2013

Laralyn,

I looked up the treatment guidelines of the National Comprehensive Cancer Network, which are very highly respected by cancer doctors and researchers, and they recommend only one post-treatment scan 6 months out.  If the scan shows no cancer, the guidelines recommend no further scans if the patient does not have any symptoms: 

It is worded like this:   "Post-treatment baseline imaging of primary (and neck if treated) recommended within 6 months of treatment.  Further imaging as indicated based on signs/symptoms; not routinely recommended for asymptomatic patients."

The Superthread has a link to these guidelines.  This is on the page labeled FOLL-A. 

Insurance companies often based their coverage policies on whether the scan is deemed necessary under accepted medical practice.

Even so, I would also want the piece of mind to get additional scans periodically in the future, even if they are not recommended from a clinical perspective.

Michael

 

 

HobbsDoggy
Posts: 165
Joined: Feb 2013

I also got a CAT scan after three months, no PET offered.  Told it was standard adn no one seemed to think I needed a PET.  Guess they are right?????  Also have one scheduled at 9 months.

LeoS2323
Posts: 143
Joined: Mar 2012

Great to hear you are doing well Laralyn!

My oncologist and a radiologist who is a friend of mine both said that too much PET scanning is not a good idea unless really necessary. You have to remember that a PET scan is a dose of radiation - a full body PET is a fairly sizable dose of radiation to the abdomen area especially I believe, so can result in bringing on the very thing we are trying to avoid.

Here in the UK we have the national health system so I'm not up on the insurance side and what companies will cover and what they won't. But my onc (who is fantastic and I trust 100%) seemed to be of the opinion that when things are under control PET isn't necessary and its more sensible to use other forms of imaging. I have 4 monthly MRI scans of my head & neck along with ultrasounds of my parotid (although mine was an unusual cancer of the salivary gland so this is different to most on here).

Neither of these imaging techniques carries any risk of causing future issues at all. My cancer was a fairly low grade one so I think that may be a factor and everyone is different; but I guess looking at the positive side there may be a reluctance to PET scan you because you are also doing well and progressing, so the added risk may be viewed as simply not necessary.

It may be worth asking about MRI which is a very good scan as it is extremely sensitive in analysing tissue without. I guess what I'm saying is what your doctor thinks is best, is much more important than what your insurance company will provide!

All the best

Leo

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