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What is standard protocol for post NPC treatment

Purplemountain
Posts: 105
Joined: Oct 2013

I've been out of treatment for 4 months with PET scan negative and all normal.  What is the standard protocol here on?  PET scan every 6 months for a number of year?  The doctor ordered for chest x-ray which I don't want due to radiation exposure.  There is no indication for the order to begin with.  Could this just be standard protocol that they do a check list on the to do list?

 

Thanks for the input.

 

PM

Guzzle
Posts: 557
Joined: Mar 2014

PM, looking at recent posts there appears to be a bit of variation depending sometimes on what insurance authorises/clinical advice in the US. There was some v.good advice though. In UK I think it is see ENT every month and full round of scans every three months for first year post treatment. Good luck mate.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

In the US it's been for some time:

1) PS/CT 3-4 months out, mostly to create an inner view to compare future scans to. Typical for something to possibly show, and for that something to be a False-Positive of scar tissue, etc.

2) PS/CT one year after the last rad, and to be repeated for at least 3-4 years at roughly the same time of year

3) Newer, is the ENT-approved getting of a CT between the PS/CTs, or 6-months after the PS/CT

4) Chest Xrays are typically done, due to NPC showing-up in the lungs if it has not been totally eliminated

Of note- be very aggressive with Dental care and check-ups

kcass

Ladylacy
Posts: 481
Joined: Apr 2012

I think each specialist is different in what they do.  I know when my husband was first diagnosed he underwent radiation and chemo, PET/CT too soon after treatment ended (6-8 weeks).   I remember we were giving a piece of paper that told us the standard procedures for doctors visits and testing for each year up to the 5th year.  And PET/CTs were to be done every 3-4 months the first two years.  Then every 6 months for 2 years and then once a year.  My husband saw the ENT every month and was scoped.  But then he started having trouble breathing and an emergency visit showed a paralzyed vocal cord and the fact that the tumor was still there.  Biopsy and trach done.  Referred to a head and neck specialist.  First thing was a PET/CT scan.  Was told upfront that the first PET/CT scan done too soon after completion of treatment and that swelling hid the fact that the tumor was still there.  Surgery followed by monthly visits for scoping and PET/CT then was done every3-4 months.  No problems getting the PET/CT approved.  After 6 months doctor visits were changed to every 3 months with PET/CT scans every 3-4 months.  Thankfully my husband decided to have a TEP one year after surgery.  Found a second primary cancer.  Second round of radiation and chemo, surgery ruled out.  NED for with first PET/CT scan after 3-4 months.  Second PET/CT scan 3 months later showed a reoccurrence of second primary and spread into his lung.

Yes PET/CT/MRI/chest x-rays all give you more radiation but without them the cancer if it reoccurs or spreads wouldn't be found until possibly too late.  And yes insurance is getting worse, thanks to Obamacare.  When you see what is charged for these tests that's the reason for denials.  Lawsuits are going to start against insurance companies more and more.  Their panels are not specialists and many don't know much more than the people already fighting cancer and certainly don't know more than the specialists dealing with the different cancers.  People are going to have to appeal and fighting for what they need to survive this horrible beast.  And of course, you have to have a doctor whose office will fight to get the tests approved that you need to have done.

Sharon

Hondo's picture
Hondo
Posts: 5785
Joined: Apr 2009

 

I agree with Kent the norm is 3 to 4 months for the first few years. The reason for the Chest x-ray is that NPC will sometime come back and show up in the lungs after treatment.

 

All the best to you

Hondo

KB56's picture
KB56
Posts: 249
Joined: Apr 2013

It does seem like certain things are standard but post treatment does vary.  I've been out of treatment since June 2013 and here's what I've had:

1) PET SCAN about 8 weeks after treatment.

2) CT scan and chest xray (they keep a close eye on the lungs for sure as that is a likely place that it may come back to if it does come back).  Both were done before Christmas.

3) I've had my vocal cord scoped twice.  Once about 3 months post and once before Christmas.

4) My 1 year diagnosis, 1st of April 2014, I had another chest xray from the Oncologist, and an exam from my ENT, and radiation oncologist.

5) I will get another scope of my throat area from my ENT in June, and will get a CT Scan from the Oncologist in August.  I asked him why a CT SCAN vs a PET Scan and he said the CT scan has the ability to detect less than 1cm which is the limit on the PET Scan.  

 

I had the same concern on the chest xray but they feel the risk of not doing it is bigger than the additional radiation exposure.

 

So far so good:)

 

Keith

 

hwt's picture
hwt
Posts: 1935
Joined: Jun 2012

I had scans every 3 mos for the 1st year and had just moved to every 4th month when a recurrence was spotted. For this reason, I am a big believer in scans. 

Purplemountain
Posts: 105
Joined: Oct 2013

Thank you for all your inputs.  This site give me more information than any doctor office visit.

 

PM

phrannie51's picture
phrannie51
Posts: 3725
Joined: Mar 2012

the actual "standard" is.....I had NPC, also.  I had a PET scan 3 months out of treatment.  Since then, I've had a CT/MRI with and without contrast every 5 months or so.  I see the radiologist every 6 months.....I see the Oncologist about the same for blood tests and general check up.  I see my ENT every month until August, when I'll start going every 3 months.  Is this standard?  I haven't a clue.  But I am glad my ENT keeps his eyes on me often.

p

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

You probably have all the information you need at this point.  We are close in our treatment times and the standards are a changing somewhat.  The specialists I see have different opinions of follow up visits and scans,

First of all, after reading the literature on follow up, I just inquired about the need for a chest x-ray when I saw my surgeon at Vanderbilt last week.  He has 30 years of experience with SCC head and neck and said "absolutely have annual chest x-rays."  His opinion about PET/CT is this is the gold standard and he wanted me to delay mine and recommended it at 6 mos.  My R/O had it ordered for 3 mos. so I compromised and set it up for 4 1/2 mos.  Vandy expert advised he was worried about "false positives" due to inflamation from radiation and did not want someone "poking around".  Had recent annual blood work done and added C reactive protein blood test which showed I was in the low range, MD then said, well you don't have any inflamation.

My experience with my insurance co. was they first denied it and then my R/O called them and advocated for me and it was approved.  The insurance co. typically deny first and eventually capitulates under duress.  I do not give all the credit for this to  Obama as the insurance co. has been looking for ways to save money long before his term. 

Vandy surgeon said office exams/scopes every 3 months were fine.  R/O has me on a schedule alternating with ENT every 4-6 weeks.  I am erring on the side of caution and staying with every 4-6 weeks for the first year.  Probably have another PET/CT at a year unless symptomatic.

Best of luck to you in your follow up.

PJ

donfoo's picture
donfoo
Posts: 1238
Joined: Dec 2012

I'm one to follow the details as you know and there is no pattern or rationale or logic from what I can tell. It seems to be really all over the map from the ENT poke and scope to full on PET/CT every 4 months. PET/CT, CT, MRI, Xray, exams area all in play. Even who you see after treatment varies. It can be the ENT, MO, or even the RO from what I see. Some say insurance is forcing certain less costly followups; others think it is the doctor's own preference. Nobody really know. Main advice is to see the one you trust the most with your life and if don't got one, go get one.

PJ47's picture
PJ47
Posts: 332
Joined: Sep 2013

You are right Don, it is all over the place so I go with my gut (what's left of it, it is still hiked up to my rib) and will have close follow up until I feel it is not needed.  

I was the one with the symptoms the Docs failed to follow up with.  6 months later my tongue base tumor metasticised to my lymph node which again I was the one who requested the ultrasound of the area as Docs were not concerned.

 Granted I did not "fit the profile" for head and neck cancer, but there is no exact profile anymore for it! 

PJ

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