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To Scan or not to Scan

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

Hi All, haven't posted for a while but I occasionally lurk to see what's happening.  Lots of new people but I see some of the real oldies like  John and Pat are still around helping people.  I am close to my 2 year mark and everything is looking fine.  I have all my saliva and most of my taste so life is good.  I am now at the point where additional CT/PET scans are becoming an arbitrary procedure.  My RO is leaving it up to me if want one at the 2 year mark (I had one 6 months ago).  He feels it is not necessary but if I want it he will order it.  My ENT thinks one per year is enough.  Part of me says get one more at the 2 year mark.  I am being told that at 2 years and NED the odds of having a recurrence or matastasis drops to about 10%.  Who knows about a new primary, my ENT seems to think that is more likely than anything else since whatever caused the disease in the first place is still able to do it again.  If if takes another 60 years I guess I don't care.  Any thoughts on the scan frequency?

John

longtermsurvivor's picture
longtermsurvivor
Posts: 1785
Joined: Mar 2010

My vote is exactly like yours.  After two years, in nonsmokers, risk falls way off.  My exception was a second cancer, not a recurrence, and arbitrary PET scans, done for 11 years after my first cancer, probably wouldn't have picked it up any sooner than I did.  Glad to hear things are going so well.

 

Pat

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

So do you think I should get one more at the 2 year mark and then just let it ride or get them annually after that?  I think my docs are saying that it is really not necessary to get them any longer maybe only an annual chest x-ray.  I guess the feeling is that the visual/oral exams are good enough.  Can I assume that you are also doing well?

longtermsurvivor's picture
longtermsurvivor
Posts: 1785
Joined: Mar 2010

I would get one at two years, then I would not bother.  Here's why:  oral  cancer starts as a surface lesion.  It doesnt start in the deep tissues, it invades there, or metastasizes there.  Your two year PET puts the bracket on the cancer you have had, it isn't really necessary to detect future stuff.  Having said that, I was still going back and getting examined by the Ent oncologist once a year 11 years after my first cancer.  My second cancer arose as a surface lesion in the floor of my mouth.  And no, it wasn't detectedd by routine exam, I found it myself two months after a routine exam.  BUT, since I had the relationship with the pro, all it took  was a call for help and i  was in process in 48 hours....

 

I am doing well, thanks for asking.  Fibrosis has proven to be a progressive problem for me after my second rads, and has altered my eating ability significantly.  I figure that's a small price to pay.  I'm 18 months out now, seems impossible.

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

Hi John, like you know already and Pat mentioned, the two year mark is a milestone. If you haven't had anything since your original Dx, more than likely you're not gonna..., at least related to that.

My ENT and Onco, even go as far as saying you're cured..

Although I still have had scans after...

My ENT feels it's time to cut me loose, but if I want to see him annually for a scan, he is onboard.

So at the two year mark,  guess you can pretty much decide which way you want to go.

Glad all is well....

Best,

John

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

John,

Congratulations on the 2-year milestone and the continual improvements.

Scans, who needs them?  We do (once in a while).  My next big step is 2-year and I will ask for one (pretty please).

Keep getting better.

Matt

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

Pat: Interesting that you found the new lesion yourself after an exam.  That says to me that things can pop up pretty quick.  I am going to get one more exam at the end of the year and then just rely on the oral/scopes. Glad to here you are doing well, you have certainly been a warrior.  I also want to thank you for all the good advice you have given others. 

John:  You are way beyond me in terms of NED but what you say is exactly what I have been hearing. I may just continue to get the CT/PET on an annual basis for another couple of years for piece of mind.  Only the "Shadow Knows".  Glad to here that you are doing well and that the fish are far from safe.  Thank you also for taking the time to help the newbies.

Matt:  Glad to year you are also kicking A$$.

phrannie51's picture
phrannie51
Posts: 3683
Joined: Mar 2012

I'd grab the last scan before they kicked me off the boat.  It's already been 6 months....so the way I see it, now that you're entering into the "good" territory, why not do it with the fan fare and the easy feeling of a NED you get with a scan.  Smile 

p

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

I will likely get one more and then go annually for the next few years.  My docs are pretty open to my wishes within reason but I rely on them for what is really necessary. I guess we can also over scan and get to a situation of false positives. Girl, since you first joined you have put up a bunch of post counts!  Keep up the good work. 

John

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

Hi,

I would not think twice about the scan at 2 years. It really is a major milestone on the road to full recovery or recurrence. Clearing the 2 yr point means you have far less chance it will return, something that would give me a lot more comfort. don

hlrowe
Posts: 23
Joined: Oct 2012

We soon may not have a choice on scans. Major insurance carriers usually reset coverage in July and I know a few of them will be denying scans on resolved patients in the future. I do Epic EMR programming for major hospitals and hear the buzz......

I'm scheduled for a PET in October and my MO said if central scheduling calls to schedule a CT, it means United Healthcare denied a PET. I would then try my secondary Cigna.

I've had two previous PETs and two CTs.

ratface's picture
ratface
Posts: 1237
Joined: Aug 2009

It's a very complicated decision, and ultimately yours to make.  You are within a grace period, so to speak, to have one more before the insurance company balks. That said, the head of the ACS refused to have a Ct scan for a suspicious node citing radiation risks. That said we have had so much  radiation already that it is  of minimal risks to us to have another. Get this one last one, decide from there?

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

I will get one at or about the 2 year mark.  

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