I just got off the phone with Stephens NP and she made an appointment for his 6 months scans , which are actually closer to 9 month scans at this point but she only ordered a CT. He has always had PET/CT in the past. Should I call back and ask that the PET be ordered? I was under the impression that the PET scan is the important scan, along with the CT.

Kerry

Kerry,

My next scan scheduled for the end of Feb will be my 6 month post Tx and it is scheduled to be a CAT.

I was told a PET scan is really a CT/PET SCAN. I mean they do a CT scanwith PET. They are done at the same time on the same machine. It may be that PET refers to the type of fluid injected. I would call her back and ask what type of scan she scheduled him for and if it's CT only then ask her why if he normally has a CT/PET scan.

One of my docs told me that with head/neck cancer they are moving away from PET due to false positives. I haven't seen one but I understand that there is a new CT machine that doubles the amount of slices taken to produce the 3 dimensional image and that tumors the size of a grain of sand can be detected by the skilled eye of the radiologist. It is awesome the strides that are made daily in all kinds of cancer research. I firmly believe that there will some day be a cure for all cancer.
Darrell

PET scans are not the same as a CT scan-- I think pnly in some cases and on some machines is a CT done along with a PET. Otehrwise, they are different. Calling back and asking is best.

Nelie

A fused PET/CT is still the "gold standard" but you want the radiologist administering and reading the scan to have seen a lot of head and neck scans. The risk of false positives is greater when the experience of the "reader" is less, they may be over-cautious and incorrectly interpret inflammation or healing as cancer.

Even with top person, the rate of false positives can be about 5-7% (per our ENT and also, the radiologist) -- however the risk of false negatives is quite small.

The radioactive labelled glucose of the PET shows areas of high cellular activity (cancer is glucose-hungry, thus takes it up strongly, but so do areas of normal cell growth such as healing wounds) -- the CT component allows the radiologist to examine the "hot spot's" physical appearance. Experienced radiologists can Usually separate cancer from benign processes, but sometimes there are areas that cannot be identified. The doctor may then order a biopsy, if practicable, or another scan such as an MRI.

Gail

Kerry,

In my understanding, the CT scan is used post treatment. My ENT has me do one every 6 months and compares to the previous scans to make sure no masses have changed shape or size. If there is an alarm or change on the CT scan, then it may be appropriate to do a PET scan. Ultimately this is your doctors decision and he has the final say, but this has been my experience.

Jim

I just had a combined PET/CT scan (one year post-radiation) and they are certainly two different scans, but done simultaneously -- They inject you with radioactive glucose and then have you lay in a recliner in dim light for 30-45 minutes to allow the glucose to move around and accumulate in the places where it is processed or absorbed or whatever.

I requested a copy of the disk and they burnt it right after the scan, so likely I was home looking at it on my laptop before the radiologist found his copy in his inbox. I won't get the interpreted results until my visit to my ENT's office next week.

I scared the bejeepers out of myself looking at the disk, because there are one heck of a lot of 'hot spots' in my body (I requested a full body scan, which turns out to be from eyebrows to mid-thigh) -- My brain looks like the impact point for a MIRV of nukes, so either that's normal or I am among the Walking Dead.

Thought at first that my bladder (all lit up from processed glucose I presume) was my prostate (glance at an anatomy book cleared that up), but now to my untrained eye, my prostate looks good (been having some problems with that across the last couple of years, so that was an open question).

The two scans (267 images each) are viewable separately or 'fused' where they are keyed to each other, plus some other simultaneous views of my body, so scrolling down thru my body, a la Fantastic Voyage, I can see a hot zone in PET and look at the corresponding slice in CT, all lined up with crosshairs -- Cool stuf!

Pete, I was just wondering is this scan covered by your insurance or did you have to pay for it out of your pocket. Also did your DR. order it or is it something you did on your own.
My ENT and MO have never once had a CT OR PET scan done. I have annual chest XRay once a yr. and that is it. It's like pulling teeth (SORRY JERRY) everytime I ask for a scan. Anybody else have problems getting scans.
I guess the question I am trying to pose is Why do some get scans as part of their follow up and others do not?
Thanx, Mark D.

Mark, they weren't going to do a scan in my case until I had a recurrence and pitched a royal hissy about having only one side of my neck radiated (long story, very boring). Anyway, I wonder if it is the area doctors, the number of false positives may be putting them off doing PET/CT routinely.
It turned out, by the way, that my PET lit up like the Aurora Borealis, and was a false positive.
Thankfully!
Andrea

That's interesting info Gail & Pete.

Mark, with my insurance so far it's just been an office visit co-pay (with the cost of a scan that's a good thing!). I've had three scans in the past year. (one PET and two PET/CT's now) but the doctor's have ordered them all and they always get pre-approval from my insurance company (which have all been approved so far). The first PET/CT was ordered by my current ENT who is an Associate Professor at University Hospital. He actually insisted that I wait for a new PET/CT machine that was being installed at the University. It was going to be a week but turned into almost three additional weeks which was nerve racking but I trusted him. Then, after being one of the first people scheduled on the new machine I lost another few days due to my glucose being too high to have the scan! He said he would get much better information with the newest technology. My first ENT never even suggested a scan at any point, he would just biopsy, so maybe it's a matter of opinion from the Dr.

I had my second PET/CT this afternoon to learn if the rad/chemo has done its job. Ironic that this is the same day one year ago that I was told the dreaded news. Sounds familiar Pete, my appointment with ENT isn't until next Friday, but my RO said he would be at the Cancer Center tomorrow and he would pick up a copy of scan at University Hospital(across the street) and call me. Very thoughtful of him. He feels results will be what we want to hear. Fingers crossed!!!!

Steve

To Pete-- Are you a fan of the DYI t.v. shows ?
When a customer comes through our door with a $5000.00 project that he thinks he can do himself for $2000.00, we just smile and say,"Yep, we can sell this stuff to you, but please incorporate an amount in your budget to have us come bail you out about 1\2 way in and lost as a goose. I'm betting your ENT is going to have the same reaction Amy

Directly after my first partial glossectomy I had a CT scan (ordered by ENT), and a second at the oncology center after the second glossectomy as part of the setup for my radiation treatments (both covered by insurance).

This one, a year out of radiation, was ordered by my ENT as part of his normal course -- He extended it to whole body at request of several of my other Docs (and me) and I expect my InsCo will continue to cover it as in the past.

I keep reading in this forum about folks having scans of both types done far sooner than that.

All the preclearances that may or may not have been done would have been thru the ENT's office -- Under my plan, my copay will be 20% (unless I hit my annual out-of-pocket); also, I haven't hit my deductible this year, so likely it will show up there, but given all the circumstances and my age, it's worth it to me -- Catching the tongue tumor early was a good thing, and I figure it's a lot less expensive in the long run to stay ahead of this curve...

JAM -- I am indeed a DIY person, having built a house (wiring, plumbing and all), kept my old truck running for 23 years, etc., but I also try to recognize my limitations (like reading a CT/PET and not expecting to be a pro at it), but I have two reasons for collecting copies of my scans (I have two CTs plus the PET/CT in my laptop right now, along with all the reports and some digital before/after photos that I took of my tumor) -- One is that I am curious and the other is that from the military, and from living in an RV for nine years, I learned the value of keeping a copy of my records -- If I want a second opinion, I have a lot of raw material on hand.

My ENT agrees, BTW, and commends the records practice. "YOU are the expert on you", sez he.

It's easy to get them to burn a copy of the scans to CD, esp if you ask right away when they are making the copy for the radiologist (my late BIL was a radiologist; were he still alive I would have sent CDs to him for a look). Heck, I even have copies of some spinal X-rays taken a decade ago for a chiropractor. Of course, if I were a TRUE, hardcore DIYer, I'd be over at a medical library with a pile of textbooks looking at scan photos...

I should add that in the house, the electrical inspector said "I presume your husband did this wiring because he did all the little extra stuff that the pro electricians don't have the time or inclination to do" and the drywall guy said "If your husband ever decides to do framing professionally, I'd be glad to follow him around hanging drywall because he builds a straight wall and puts the right drywall supports in place that the regular framers don't even know exist", so some of us do get it right <grinz>.

Gail almost has it right - the PET/CT more accurate in that the adjunctive CT part allows for correlation of the region of interest with accurate anatomical information which a standard PET alone does not do. Earlier attempts at this also had software that could do a fusion of a CT and a PET scan image (done separately but not as accurate).

Just for the record, my CCC does not order CT's, PET or PET/CT's except for the initial triage but they do order an annual MRI to limit radiation exposure.

I have CD copies of most of my MRI's, have been in the radiological business for for over 25 years and still can't read them... Most of the copies you get aren't full res anyway - refering physician copies aren't required to be.

I am a DIY person as well and am still working on a 160 sq ft building that I started in November. I spent today splicing and pigtailing all of the many receptacle boxes and lighting. All to commercial NEC code. 12 circuits in this small building - more than in my house, including a 220/20A for an HVAC wall unit. It has morphed from an electronics lab to a home theater... The shell is 100% and I am installing the insulation now. An electrican will conduit in the electrical service in rigid hardwall I also had to have the main service upgraded to 200A) then the drywall people can take over (I do have my limits at almost age 60). It almost killed me hauling all of the material down to the building site. I really thought I could build this thing in a month!

It sure does take your mind off of cancer though... Monday I see the RO at the CCC for my semi-annual check up. I am heading towards my 5th year of cancer free.

Like Mark, I only have an annual chest x-ray . Pets and CTs have never been ordered. I don't know how hard it is to ask for a scan, but I can tell you that "pulling teeth" is way too over-rated.

Pete, come on...How come you didn't do the dry wall yourself? This is coming from a guy who won't do electrical work himself. I am always in awe of you DIyourselfers.

Jerry

First, Amy, rereading what I posted, I realize that I might have given the wrong impression re: my scans and my prostate -- Altho my interpretation of the scans is that I don't have a cancer problem with my prostate, that doesn't mean that I trust myself on that -- In addition to the radiologist interpreting the scans, it happens that I had blood drawn last week for a six-month follow-up PSA test with my Urologist and coincidentally have an appointment with him a few hours after I see my ENT on Tuesday -- The Uro has done a digital exam, plus recent PSAs are showing better results than a year or so ago, so all signs point to merely prostate enlargement that comes with age.

Jerry, I was simplifing -- Actually, I first built a two-story concrete block addition behind a one-story house (all in Florida) and did the downstairs drywall for that. I learned that I can hang it OK alone, even the overhead stuf (with my scaffolding), but acquiring finishing skills took me a lot more time than I wanted to spend (more time spent sanding mistakes than finishing), so I hired a contractor to finish the second floor, however all the concrete, block work, trusses, roofing, joists, wiring, etc. were done by me, sometimes with physical help from friends.

I was lucky to have a carpenter and a mason as neighbors, plus two former electricians as work colleagues, so I had a lot of brainpower and experience to tap into for guidance (kinda like having this group!).

On the full house, I subbed out a lot of the heavy work (but not the framing, roofing, electric and most of the plumbing [the sub-slab plumbing was done by a pro because mistakes there are literally cast in concrete <g>]) and built a two-story, two-car garage with bedrooms and bath above, and my family and I lived there for four years -- Because it was going slowly, we subbed out most of the rest of the house, plus the septic system and well.

During that life, I was a transmission engineer with a phone company, so basic electricty wasn't magic... With the plumbing, I got a lot of advice from the county inspector's office and he had me assemble all of it dry and inspected it before I started gluing and soldering.

Amy, much of the savings I had by DIY went into better materials, like a larger electric service, lots of extra breakers, all-copper wiring, larger septic system than the minimum, tons of additional insulation, double-pane windows, split air-conditioning, etc. Plus I'm sure we didn't always get the best deal from our subs because they knew we were unlikely to be repeat customers, but we knew that going into the projects.

Dear Pete and Gary, HOmeworks has job openings
Amy

To add to the discussion, we're currently at MD Anderson & yesterday we too asked the ocologist for a PET/CT fusion test at this visit. (My husband,57, is 14 months out from treatment for SCC base of tongue,Stage 2/3, HPV 16? positive tumor'non-smoker,non-drinker.)The answer was they use the fusion when they suspect metastisis. The CT is 'more fefined' & the radiologists prefer the CT. The MRI is not used for the 'lower' areas, i.e. base of tongue. In addition to the CT, at each 6 month visit, my husband is given an ultrasound of the lymph nodes in the neck & if any are suspicious, he would have a needle biopsy. We cannot get the fusion test currently in Ontario, nor do they ultrasound his lymph nodes,that's why we come to this wonderful place.

Just to be really clear on this, I don't believe the "fusion" is a test or scan, rather, it is merely seems to be the software combination of two PET and CT scans taken **simultaneously***.

On my, I have the choice in the viewer program (MIMvision) to view PT, CT or FUSION of CT,PT. However, it is clear that if the two scans were not done simultaneously, it would be difficult to synchronize them because the 'slices' (267 in each scan) would not be of the same places.

Today, I got the word from my ENT Doc that my one year post-radiation PET/CT scan (full body, from eyebrows to mid-thigh) was clean. He said that meant:

1. Right now, I am 99% cancer-free (could be some cells in there that the scans wouldn't be able to see, but that's the way we all are).

2. At the end of my radiation treatment, I had a 65% likelihood of no cancer recurrence within five years.

3. Having made it to one year from the end of radiation treatment with no recurrence, I now have a 90% likelihood of no recurrence within five years.

4. Every month that goes by increases the percentages.

He's moved me from a See Me in Two Months to See Me in Three Months schedule.

I am a Happy Puppy!

Here's the financial damage from my PET/CT scans, for which I just got the bill. BTW, it was a combined PET and CT scan (skull base to mid-thigh per my request for a full-body scan).

Billed price for scans: $3050.00
Billed price for Doc report: 500.00

less network discount for scans: -363.65
less network discount for Doc: -250.00

Total 2936.35

My share, under 80%/20% plan $587.27

In this case, my cost is actually somewhat higher because I have not met my annual deductible, but I chose to exclude that because it is really a timing event and dependent on other services I may or may not have paid year to date.

For those who may not know what a 'network discount', that's an agreed price reduction from the 'list' price of the service between the insco and a 'preferred provider'.

For someone with a different plan, they might have only had a $20 copayment. For someone with no plan, the bill would likely have been the 'list' $3550.

Given the results, I am still a Happy Puppy, not wondering if I have other advanced cancers lurking...