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Chest Xray once a yr.....that's all we get after tx.

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

After Kreg spoke with his Oncologist at U of M he too(along with ENT), stated that he is only recommending Chest Xray once a yr. No CT or PETs in his future. Their reasoning of this seems a bit disturbing to me, but Kreg is fine with it. Simply said, they do not want to put anymore radiation(in CT's and PET's) into him then necessary as they claim it has been known to cause cancer/recurrence. I can't believe he can't even get one once a yr. Kreg feels if he wants, he will have his MD order one once a yr for him if needed.....but, wondering about insurance coverage??

I'm lost over this. He has only had the PET before and after Tx and that's it other than his 6-8 wk check ups with his ENT and ONC with scope exams. I know CivilMatt said he's not to expect anything after 9 months out and others have claimed their having a hard time getting them. Is this something NEW? I'm interested in what the more recent newbies like us are being told after tx.

Confused Undecided

~C

zaac23
Posts: 24
Joined: Dec 2010

the med community has nat'l proticals for everything from cancer to butt wiping i think. norris cotton cancer center told me chest x-rays only after 2 years, but med checks every 3 months for 2 years. the reason they gave was to much rads will cause more cancer

jcortney's picture
jcortney
Posts: 411
Joined: Sep 2012

I just had a PET at 3 months post, I will have a CT at 6 months and 9 months and POSSIBLY a PET at 12 months.  Then a CT at 6 months and 12 months the following year.  After that I didn't ask.  My doc said the radiation from the CT is not a big deal but the radiation from a PET is a big deal.

Joe

 

donfoo's picture
donfoo
Posts: 1205
Joined: Dec 2012

After that I didn't ask.

no need to ask after 2nd year out. If you look at charts, about at the two year mark there is a very near flat curve showing recurrence falling to near zero and thus morbity flats out here too.

lorig01
Posts: 69
Joined: Jul 2012

Hi. I was treated at UT Houston and I have only had 1 PET after treatment at 8 or 10 weeks.  Just ENT scoping after that.  My doctor says the same thing. I was really worried about it and brought it up at my 6 month check up. He said that they are stopping all the CT's unless you have symptoms/lump. He told me that the new thinking is that avoiding radiation is better if possible. He did say that he could order one for me if I was not sleeping because I was so worried abpout a reoccurence. I think I will ask for one at 9 months or 12.  I am enjoying feeling and thinking that I am healthy. Not sure at this point if I would want toknow if I am not. :)

 

CivilMatt's picture
CivilMatt
Posts: 2924
Joined: May 2012

Cris,

I really don’t know what will happen (scan wise).  At 1-year post when the ENT thought he felt something he ordered a CT w/contrast faster than I could say “what”. If the ENT sees no evil and feels no evil I guess I’ll have to live with that. 

You hear such conflicting information about scans, radiation, early detection, lumps, bumps , shrinkage, hot spots, does this cancer ever end.

If your condition warrants a scan, you will probably get one, if not then what.  Do we have a word like “scanxiety” for  “no scan” angst?  I am afraid to use the word “cured” because just as soon as I do I’ll reap some type of reprisal for some past transgression.

Stay happy,

Matt

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Scanless in Michigan...

Dohhhh, so they think that a few more scans might cause secondary cancer after blasting you with 7, 000 Grays...seems logical to me... Like mentioned, if they think somethings going on, I'm sure you'll get one.

JG

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

I only had a CT at about 4 months after Radiation tx and pretty much had to ask for it . Then about a month later I found a lump and like Magic I had an appointment the next week for a PET scan . They can order one if there is a reason. I think I read somewhere a PET is like a years worth of sun ?? Not sure about that tho .

Peggy

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

Matt,

One of the things Kreg's ENT and ONC told him was that if he has no recurrence or problems in the five years, they will consider him completely cured. Right now he's considered NED. I have a feeling Kreg is going to get some scanxiety for "no scans" and do see him requesting at least a CT once a year along with the xrays. He's 6 months out of tx now and already reacting to some the fear of it coming back.... Unless, his ENT gives him that word of confidence every 6-8 weeks...then that thought of scans may fade.

Cris

fishmanpa's picture
fishmanpa
Posts: 1113
Joined: Jan 2013

Here's a question....

Since you don't typically get your first scan (CT/PET) until about three months after treatment ends, when are you considered NED? My docs said that as far as they're concerned I am until a scan proves otherwise.

"T"

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

NED as you know simply means exactly that, "No Evidense of Disease"... Meaning they don't see anything on the scans that are suspect... Could there be something floating around that might rear it's ugly head down the road, sure....

As for cured...

For most insurance companies and such, it seems to be that five years is the magic number.

Certainly the first two years are the most critical, with the highest chances of recurrence or another cancer taking hold it seems.

My ENT and Onco, both set it at that two year mark... Both have stated to me they consider you cured after two years of clean scans..

But I'm going on four years post Tx ending next month, and I'm still being routinely checked and scanned...

My ENT said at the five year mark that he can cut me loose, or I can choose to have at least an annual or semi-annual scope if I'd prefer...

For the confidense factor, I plan to take him up on that.

JG

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

We were told that same thing with NED.

I do like the 2 yr mark being the end of it! They did note the first two years were critical as well. The recurrence does appear to level off after two years....I agree that the 5 yr is simply a mark for insurance companies and medical research and such...

phrannie51's picture
phrannie51
Posts: 3685
Joined: Mar 2012

they have planned for me....I do know it's not a PET, tho.  If there is a nine month scan, I'm missing it right now Smile...My ENT told me he'd see a reoccurance before a scan would, so that's made me feel pretty safe, since I go every month....soon to be every 2 months. 

I kinda get the feeling that the new protocols are basically ramping up for Obamacare....making them fit to a cheaper version of what has been used in the past.  I mean they've totally thrown out everything about mammagrams, pelvics etc, that used to be a yearly thing, and now they're saying "oh no, you only need to check things out every 2 to 5 years"....therefore, all the scans that were required in the past are now going to become passe. 

As long as they let me keep going to the ENT, tho...I'll feel reasonably safe.

p

Skiffin16's picture
Skiffin16
Posts: 8071
Joined: Sep 2009

Like Phrannie says, the ENT is the key....

If you see him/her regularly, communicate all things, he/she is your best line of defense...

My ENT insists that he is the "all knowing", LOL... He is my lead medical professional..., and he is quick to let me know, if I forget, LOL.

But he says all of those scans, ect..., are merely tools at helping him make better decisions, but he is the first line of defense.

He is one of those hands on, touchy feely, and of course probe masters. He will know if something is going on, and I'm pretty comfortable with that.

He also is not a big fan of un-needed or a lot of additional scans, the secondary radiation thing, and also costs.

As you know, I'm fast approaching (June 18th) four years since completeing treatment...

I had multiple Pet and CT the first year, and since year two post Tx, I have had one PET and one CT each of those years, and probably will through this time next year. They keep me on a five year follow-up schedule.

My ENT said that I can cut him lose after that or still come in annually for a poke, probe and look see..., which more than likely I will do.

JG

HobbsDoggy
Posts: 165
Joined: Feb 2013

I had a CAT contrast at three months, ENT visits monthly for one year and another CAT (not sure if contrast or not) at 9 months.  I had a unknown primary which might chance things.  Not sure about that, but I will ask.  Limiting the radiation makes sense, but then so do scans.  Will go with what my docs recomend, but will ask some more questions.

katenorwood
Posts: 1821
Joined: May 2012

Boy I've heard the spectrum with this.  Does it matter the type of dx a person has, or the type of tx's ?  I've had more than my share of PETS/CTS, MRI'S, and x-rays I should be glowing in the dark.  Maybe it depends on where you're at.....NED, or stable disease.  Laughable....whats the difference.  I have another CT in a week, on the lungs.   Keep asking, and I'm praying that it means an all clear for life !  Hugs sent !   Katie

hwt's picture
hwt
Posts: 1906
Joined: Jun 2012

I had one PET post tx and CT w/contrast every 3 months. Since it will be a year post tx this month, the ONC moved my scans to every 4 months. The ENT said he thought that was a bit too aggressive and kept my appts. at 3 mos. My ONC said I wouldn't be getting anymore PET scans unless something caused concern.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

...I don't care what anybody says (meaning the professionals).  If the recurrence rate is 35-40% in the first 2 years AND if all the preaching they do is "catching cancer early is the key" ....then all the professionals need to get on the same page and by golly sign me up for the annual PET and quarterly CT AND the monthly ENT scope / probe thingy. 

I am 16 months out and I have had

 

1 PET / CT 3 months post treatmnet

4 CT's w/ contrast (2 of those 4 included chest as well as head)

A monthly visit to the ENT for a scope / probe with finger EVERY MONTH until just recently I am now averaging a ENT scope / probe every 2 months.

If that causes a recurrence.....well, I guess I will have to take that risk.

Best,

Tim

ratface's picture
ratface
Posts: 1238
Joined: Aug 2009

It's at least a three year old guideline published by the National  Cancer Comprehensive Network. This is the Authoritative Body that my insurance Carrier uses. This causes me great consternation and huge fights with my insurance carrier.  The exact wording of the guideline is indeed a chest x-ray , but for asymptomatic cases only.  The problem with the guideline is that it gets applied broadly and many of us have other suspicious issues going on.  If a doctor is telling you it's new thinking I would question that plan of action. It's certainly not a new guideline and a poorly written one at best.  As already stated, try to get scanned for at least the first two years which could be as little as two scans.

Crazymom's picture
Crazymom
Posts: 295
Joined: Nov 2011

I have a CT skan every three months.  THey had me scheduled for CT skan in JUly and I asked for a chest xray.  They said ok...I have not had a Pet Skan since last summer.  I* have 15 month NED...hope I did the right thing with the chest xray.  Ann

hlrowe
Posts: 23
Joined: Oct 2012

Had a stage IV tumor at the epiglottis into a few lymph nodes.

On my first PET 3 mo post TX (I finished June 12th of last year) my lungs were ALL lit up.  Everyone was 95% sure it was inflamation and they were correct when a second PET confirmed NED two months later. Then on my second CT in Feb of this year the radiologist couldn't tell what was going on due to calcification, etc, etc (probably not to experienced in Head and Neck for all I know?).... so in an abundance of caution my med onc ordered a 3rd PET. It was fine - still NED. I just had a CT this Monday and saw my rad onc today. All is ok. They overlaid it with the last CT and PET. He no longer needs to see me and said if nothing changes, no further appointments are needed with him. I still see the med onc every 6 months and my ENT has been scoping me every 4 - 6 weeks (FINALLY used to having a fiber optic scope shoved up my nose and down the throat Smile). Starting in June he will scope me every 60 days. I have United Healthcare (primary) & Cigna (secondary) and they precert and pay everything with no complaints.

So, lots-o-radiation post TX which none of my doctors seem too concerned about?

Noellesmom
Posts: 1298
Joined: Aug 2010

My husband had hypopharyngeal cancer and base of tongue (both late stage) and continued scans and scopes have been necessary for three years post diagnosis per our ENT/oncologist.  For the base of tongue, from what I understood scopes only could have been used because they can actually see that area.

There are established GUIDELINES but a doctor can step outside them to a certain extent - they have with Jim - if they see something suspicious.  It is my understanding Jim will have a PET once a year indefinitely.

However, the mid-year CT stops after the one he is having in two weeks.  We are three years out from diagnosis and that is protocol.  The doctor stressed if we have any issues, find any lumps, etc. to call right away and they will get another look immediately.

Now we enter the "vigilance" phase (not that my nervous self hasn't been all along).  It is on us to watch for any unusual signs and get to the doctor immediately. 

You'll have to check with your insurance regarding coverage: and I wouldn't worry about the amount of radiation caused by a CT. 

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