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U of M says only Chest XRAYS once a year after tx???!!!

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Ok....I'm floored with this news today and I need advice and I need to know your scan schedule. After what I've known from all of you folks on your scan schedules, this is bothering me. My loved one says his ENT/Oncologist is telling him that they do not like doing CT's and PET's regularly as they contain radiation and can cause cancer? He had his initial PET before tx and after tx. Now he will only have a Chest "XRAY" once a year!!

I don't know what to think of this and my blood is just curdling right now....I feel like I need amunition...or am I wrong with today's research? U of Michigan is a teaching hospital and I've read that teaching hospitals are at the top for research and technology updates. But, this has me puzzled.

HELP... : )

~C

longtermsurvivor's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

Precertification is a big hassle for these guys, some of which have decided to blow smoke at us rather than do the right thing.  Yes, PET and XRays contain radiation, but the dose is rather small.  You can compute the cost/benefit ratios yourself.  What do  you think logically is more risky under the circumstances of someone who has already had cancer.  The relatively low dose of radiation from a PET scan, or the risk of reoccurance of a cancer, which is anywhere from 10-50%?  Their reasoning is designed to befuddle lay people.  It makes no logical sense. 

 

I recently had a laugh at this kind of BS with my ENT oncologist.  The med ONC had just told me, no more PET scans, only CT.  When my wife asked why, he said "because PEt is so expensive">  LOL, I didn't pitch a big fuss, becauase I have had all the treatments possible.  Two series of rads, radical surgery, othing much left they can do if I get this again, so I'm not pushing for follow up.  But my situatio is unique in that regard.  ENT Onc says, "he just doesn't want to hassle with precert."  Bingo, we understand this......

 

There is no agreed upon schedule to follow up with PET and CT, but what is proposed to you is NOT REASONABLE by anyone's standards.

 

Pat

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Pat,

I couldn't agree with you more! I understand we must be our own advocate, but this just seems so below standard, I hardly know where to start to drill that we want more than an X-ray. I don't want to scare my loved one here, but I want him to understand the importance of precaution and especially what I've seen/read here on this forum. 

How do we go armed to request more than this xray?  I would love to have him take a list of each person on this forum and where they were treated and what kind of scans they have and how often.....so they know what we're basing our info from. 

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

My ins co deemed PETs for me were medically unnecessary , guess they forget who was the one that had cancer, they will allow a CT every 4 months if a doctor requests it. I saw my rad doc the other day and he asked why he didn't have the most recent PET scan , all he had was a CT from last Dec  that the onco sent him.. I told him about the ins comment and all he said was WTF... I laughed and he shook his head. My onco did schedule ms PET last dec and that's when she and I received the notice from the ins. , of course she and I could appeal but would good would that have done? I felt the PET for me was like asecurity blanket , head to knees .

longtermsurvivor's picture
longtermsurvivor
Posts: 1819
Joined: Mar 2010

This artical is long, sorry.  But it is spot on to your need.  See especially page 35 where it talks about follow up surveillace.  I'd copy every line of this and present it to them on my next visit, telling them "what you have proposed for our follow up is unacceptable to us, and here is why...."    Also, the frequency with whicch the rest of us have gotten CT/PEt is discussed in a lengthy thread from within the last six months.   It should be found 10 or 20 pages down from here.  You can copy all of that to hit them with if you want to.   To me, what is being proposed to you is a deal breaker.  You only have one chance to get this right.  If they won't bend, Id be out of there in a second finding a new doctor to do the follow up with.

 

www.metroatlantaotolaryngology.org/.../PET%20scan%20indications.pdf

You will have to paste this directly into google and it will come up.

 

BTW, I've been through three sets of follow up in St Louis, MO.  The standard there is CT at 3 and 9 months, PEt at 6 and 12.

 

Pat

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Big Thank You to you Pat! I appreciate the information. 

He has another ENT appt again in 6-8 weeks, which by then he would be out of tx 7 months (last PET was at 3 months), I'm hoping to arm him well for that appt!

~C   

jtl's picture
jtl
Posts: 420
Joined: Sep 2011

I don't know if the article I pulled up is the same one because it did not have 35 pages but informative never the less.  What I got out of it was that PET/CT together had an accuracy of between 86% abd 90% and was superior to contrast-enhanced CT.  It also recommended PET/CT at 2-5-8 and 14 months which is more frequent than my 4-6 and 6.  I am now 14 months out and at my rad onc appointment last week he said that at some point he would no longer recommend PET/CT.  I get an exam with a  Nasopharyngolaryngoscope every 3 months but the article referenced a Panendoscopy which I think may be different but in any event it said there is no evidence that the Panendoscopy does much if any good.  I found it interesting and timely that the article addressed a 2nd primary which apparently happens way too often.  This  is exactly what my ENT said at my last appointment.  In fact he said at this point he is following for that rather than a recurrance of the initial disease he even used the term "cured".  Based on the fact that a new primary is most likely to appear in the neck, esophagus or lungs in the case of ex-smokers I am going to push for frequent oral exams with a scope and at least an annual PET/CT.  I have no idea what Medicare thinks about the frequency of scans but I have been lead to believe they will pay providing a qualified MD believes in the necessity. I wish there was a concensus on the frequency after the first 14 months on NED.  Thanks for the link.

John

 

backachedp
Posts: 124
Joined: Oct 2009

MY Husband has been going to the U of MN for treatment and still sonce 2009 gets at least a CT EVERY 3 MONTHS...Bloodwork etc same....he was doagnosed Sept 29 2009.  We have had tto fight for the few PET scans I belive he only had 2 or 3 but CT every 3 month's still and it's a teaching Hopsital....he has had alot of issues but your story just does not seem right fight for what you feel is nessasry.  Insurance Companies are so bad and lie as when my Husband was ordered  PET they said it was not pre authorized when I called the DR they had sent in a pre auth....that was BCBS of TX  now we have new Insurance and just from my medical issues and rx's we have already had problems.  It is hard enough going thru a terrible disase like Cancer and worry about are they doing this right and should they be doing this....I do feel U of MN is a great place for Cancer treatment and they keep close tabs on my Husband....wishing you luck but demand what you feel is needed and nessasary....or get another opimion.

CivilMatt's picture
CivilMatt
Posts: 3007
Joined: May 2012

Hi Cris,

 

The infamous post cancer scans.  I wasn’t going to have any scans at 1-year, and then the doctor thought he felt something, BAM, CT scan.

 

I have had a PET a 3 & 9 months and CT at 12 months, plus palpitate and scope every 3 months.  I opted out of the offer for chest x-ray (wanted PET instead).

 

If you figure out the magic word let me know.

 

Good luck,

 

Matt

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Jeez....what your team proposes is truly hogwash.  I thought, but maybe I am wrong, their is written protocol by the National Cancer Institute to follow up the first year with a CT every 4 months, but I guess I was wrong according to Pat, he would know.

I always felt a bit left out by not getting a PET, only CT's and CT's with contrast every 4 months and I am 15 months out.  I have also had a CT / CT w/ contrast of the chest 2x now but only bc they saw something on the top of my left lung during a normal H&N CT.

 

I have had a couple of chest X-rays as well as an MRI of the brian, but the MRI of the brain was bc I was having some REALLY bad headaches that did not feel right just 4 months after my last tx...so an MRI of the brain was ordered.

I often wonder about the PET ...but boy, compared to what you team proposed, I'm feeling good about my follow up.  I personally would not wait the 6-8 weeks, I think I would just bump up that meeting and if they stick to their guns....go elsewhere.

 

Keep us posted, tell Kreg hello.

Tim

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

"What the hell" type thoughts as you, Cris when nobody said diddley about another PET scan at 6 months (or even 9 months out).  The the Onc ordered me a Contrast CT at the 6 month marker of just the head and neck....My thinking is...I smoked Pall Mall nonfilters for 40 years or so, don't they care to see if my lungs are ok?  Do I have wait and be symptomatic to get another PET?

It can't just be the insurance companies, since my insurance has never squeaked about one thing all thru treatment...not even the Mugard (which when my 2012 list of meds came, I saw that the 6 bottles of that were like $1500....I had no idea they had paid anything for it).  Anyway, it's got to be the Dr.'s as well....and for my next scan I'm FIGHTING for a PET...and not just the head and neck, either....butt to nose.

I do see the ENT every month, tho...and he assured me if I had a reoccurance of NPC he'd see it faster than I could get in for a scan....the monthly's will start decreasing next month to every other month....still nobody is looking at my lungs, which I think would be a prime concern considering my history.

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

About my early scanning that my Monc did/is doing (CT at 6 weeks and PET at 12 weeks) what I didn't say was the CT was from my hips to head.  He wanted to see everything in the abodomen and really wanted to see the chest.  I think you need to get your doc to agree, after all he's not paying for it.  Have you expressed your fears to him?

J

luv4lacrosse's picture
luv4lacrosse
Posts: 1398
Joined: Jul 2010

I'm on a clinical trial and have been receiving a CT of head and chest every six weeks since Aug 2012. I'm certain if these were all being billed to my insurance, I would have been met with some resistance. As far as the amount of rads received per scan, I have heard that one scan of your chest is equivalent to 200 chest x rays?? Who knows, but when all you are anymore is treatable, not cureable, it is not much of a worry.

Crazymom's picture
Crazymom
Posts: 300
Joined: Nov 2011

MD Anderson is giving me a CT scan on neck region every 3 months.  I had a Pet Scan at 3 months instead of CT scan.  I have not had a chest xray since last summer.  I am supposed to go back in June for my 3 month check up so I may ask to have a Pet scan instead of CT scan or at least demand chest xray.   I had not even thought about the fact that my lungs had not been checked out.  thanks for the posts   Ann

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

You know my schedule..., even after nearly four years, CT at six months, then a PET at six months after that... I'd try to get other opinions, or do something so as to convince them minimally for two years. That's the mose critical time for early detection of recurrence...

Going in uneducated and not knowing better, you might buy their plan. Being empowered with knowledge and experience from here, no way could/would I accept their plan.

JG

 

 

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

You're right John. I did find our thread that we all talked about this at one time and jotting notes of everyones's schedules. I'm researching different sites for their followup recommendations and printing them off to compare....This has me fired up..Can you tell? 

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Since I did not go with Kreg to his appt I can not verify the word "XRay" was or wasn't used so leisurely. Had I been there, I think I would have jumped on it. He gets nervous with his appts and taking all the information in and he said he didn't think twice about the word xray.

As I was doing some of my research. I was reading U of M's site and came accross the use of CT or CAT scans etc and they do use the word "Xray" a few times throughout the article. I'm posting for others to see if this may be where the interpetation may be coming across as an Xray to us, but rather the ENT means CT scan? I've printed out for Kreg and he's planning to call his Dr and ask for some specific clarification and if he's told it is a simple X-ray, he's going to tell the Dr right then and there that he's not willing to accept that type of followup.

 

http://www.uofmhealth.org/medical-services/ct-and-cat-scan

 

~C

 

 

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

Post surgery and tx, I had one PET scan and then eyes to thighs CTs w/contrast every 3 months. This last go around was only head/neck and chest and now, at a year, my schedule will be every 4 months. I was told not to expect anymore PET scans at all. 

Patti1967
Posts: 186
Joined: Mar 2013

I finished chemo for invasive breast cancer on Dec 10th, saw my med onco that morning prior to chemo.  She told me she didn't need to see me for three months.  I said okay, am I to be scanned anytime soon?  She said eventually.  Well three months later I am getting a biopsy on my lower lip, chin and am then told I have SCC.  My entire lower lip and chin is covered now. 

I started seeing a whole new team at UIC center for advanced medicine.  I had a CT on my neck this past Tuesday, one node showed to be a concern.  They then told me that the scan picked up nodules on my lung and now I am headed back for a CT of my chest Sunday morn.

I can't help but wonder, if at least for the SCC, had my med onco for my IDC scanned me after treatment that perhaps it could have been caught sooner.  So now I am just hoping the nodules on my lung are nothing.  Two cancer diagnosis in seven months is bad enough, heck I don't really want to join a third board!

Patti

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

Patti,

Welcome to this board and I'm sorry to hear that you are dealing with two cancer diagnosis. Sounds like they are two different cancers that are unrelated to one another. I hope you have found a good team that is working hard for you. Seems that we have to sometimes be our own advocate and not always count on the doctors to keep things moving along for us.

I would suggest you repost on a new thread and some others will chime in and maybe give you some advice with your scan that picked up nodules on your lung. I'm not familiar with that, but know others that have had some experience with it.

Cris

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

Not sure concerning the link....

It could be some croos between the traditional CT and X-Ray... Pat may be better informed. I would at least communicate your concerns and ask if the CT/X-Ray is comporable to the CT used in conjunction with routine PET scans for checking recurrence and signs of new developement...

Are they using that as Kreg's "new base scan", etc...

Get some assurance that it is equal or comporable, and if possible to slide an annual PET at least down the road.

Just for the record...

My onco is the CT/PET queen in my life, she orders them... My ENT isn't a fan of frequent scans due to the added radiation exposure....

But hell, I was blasted with 7000 Rads over 35 days..., how much is a PET or CT in comparison...? From my reading and Pat can correct me... A PET is around 1 - 2 Rads, which is about what your normally exposed to in around 3 years through atmosphere.

If that is the case, the 35 daily radiation blasts we received has put us at more risk for secondary cancer than a PET or CT will...

JG

cureitall66's picture
cureitall66
Posts: 864
Joined: Aug 2012

I've been sharing everyones response and the info I'm finding on line with Kreg now...I think he gets that I'm not overreacting(too much Laughing) about this and how important it is to know exactly what your getting and should expect. I have him in his combat boots .....just getting the amunition together. : )

Patti1967
Posts: 186
Joined: Mar 2013

I guess my point for you lol i got off target, sorry:), was i would insist on more then just an xray:) 

Patti

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Yes be prepared for battle.  I would not accept an xray if it had of been David.  This stuff can be caught earlier with better scanning.

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