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PET scans - poll of how often

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

Hello old friends,

I know it's been a while, but now I have another question.   Historically, my husband had scc of tonsils, Stage 4, went through radical neck dissection in April of 2011, 35 radiation sessions in June of 2011.  He hasn't had a PET scan for 1 1/2 years (being followed by ENT surgeon.)  She says she doesn't think PET scans are necessary anymore, that is the "standard of care."

Jeez, I hate to be one who fights with the doctor, but I think I've read differently here, and I want to be armed with as much info as I can get before next appt. in January 2014.  So I'm just wondering, what have been your experiences, what have you heard from various doctors, etc.?

Thanks in advance for any answers, and I've gotta say, I was sad to read so many names I don't recognize today, because that means you're newer to this forum, but on the other hand, I was glad to read that other "old-timers" are still plugging away and staying active.

Thanks!

- Kathy

CivilMatt's picture
CivilMatt
Posts: 2807
Joined: May 2012

Kathy,

You do not sound like an old timer, I think I will use Veteran.

So far I have had

3 months – exam, PET/CT

6 months - exam

9 months – exam, PET/CT

12 months – exam, CT

17 months – exam, CT

Plus I have periodic blood tests to watch thyroid, next blood test next week.

They say a good ENT will see or feel any irregularities in time.  The only reason I got my 9 month PET/CT is because I requested that my rad onc order one.  Other than having one ordered for you, if you had a good reason for one (if you know what I mean) like, pain, discomfort, feel something..  My 2 CT’s were because the ENT ordered them after my exam.

Now that I am approaching the 2-year mark, I assume there will be fewer exams and scans.

Best of luck,

Matt

lornal's picture
lornal
Posts: 196
Joined: Sep 2013

I had a CT scan a year out.  Then, I asked for PET scan for year 2 (I think), and the nurse got it approved.  One more CT scan at 3 years. And now, no more.  I asked the doctor why, and he said it was the ENT boards (a least doctors) that decided it wasn't necessary after that.  I got assurances from him that is was NOT the insurance companies that were driving this.  I'm okay with it.

 

zaac23
Posts: 24
Joined: Dec 2010

Sounds about right to me. if you have no symptons and the ent sees nothing you should be good. don't keep looking for something that isn't there. if you see something(sympton) then start hollering.

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

I know we as patients feel better with frequent scans... 

My onco apparently does also..., as I'm going into year five, and she has me do a CT at six months and a PET after the next six months. I was on a similar regime as Matt the first year or so.

My ENT whom is my lead MD..., he doesn't really endorse the added radiation exposure from the CT and PET.. He's more a hands on guy and over the five years, he has scoped me anywhere from every two months, though now at every six months.

To him the CT and PET are merely tools that allow him to do a better job, but ultimately he is the main source or front line to happenings within my throat.

JG

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

I'm just six months post and need to get a 6 mo check. They are bugging me to get in. I had a PET/CT at the 3 month milestone then a scope at around 4.5 months. Don't think it will be a PET this go around but will know shortly.

Personally, I'm not hung up on PET and would much rather know and trust what my ENT and oncologist think, much as John states.  To him the CT and PET are merely tools that allow him to do a better job, but ultimately he is the main source or front line to happenings within my throat.

The ability of the doctor to detect any sign of recurrence is most critical. If I had to choose a PET scan and questionable doctor or CT and a great doctor, I'd choose the great doctor every time.

ratface's picture
ratface
Posts: 1231
Joined: Aug 2009

I can see the industry starting to take a less scanned approach as better in the long run. If you are without symptoms the National cancer guidelines are now only recommending a chest x-ray.  I was initially scanned every 4 months, then every six, then once a year and now at the four year mark my ENT hinted that further scans were no longer in my best interest.  I had some lung nodules to watch and compare.  Most recurrences are found by the patient or the ENT on examination.  FYI the president of the ACS refused a CT scan concering a  nodule, citing the risk of radiation as greater than the risk of cancer.  Find a good balance for your particular situation and don't read more into their importance. They are useful tools but also prone to many problems from false positives to insurance company wars regarding approval.    

Viilik70's picture
Viilik70
Posts: 54
Joined: May 2012

My RO told me once you have had cancer your chances 2% compounded yearly of getting cancer again so he recommended having one once a year. Now getting your insurance agree to this is another thing. Mine drags their feet for two months before approving it. I've been through cancer twice and after the first go round I quit going to the Dr all together and then 5 years later by chance clinic dr sent me for a scan and caught new cancer just as it was getting started or just at the primary. I don't think you can be to cautious after going through it once already! God bless and my two cents : )

john j

phrannie51's picture
phrannie51
Posts: 3601
Joined: Mar 2012

treatment, and one 3 months after treatment was over.  Since then, I've had CT's at 9 and 12 months out, and one coming in January....but no more PETS (no matter how much I begged), the Onc said no to a PET.  He said if I was worried about my lungs I could make myself an appointment with Imaging and get a chest xray.  Mine has nothing to do with insurance either, it's all up to the Oncologist....

p

jcortney's picture
jcortney
Posts: 406
Joined: Sep 2012

I had a PET at 3 months, ct at 6 and another at 9 months (a week ago) and I'll have another at 12 months.  My Onc (and ENT) said unless there was a reason to be concerned there would be no more PET's.

Joe 

katenorwood
Posts: 1804
Joined: May 2012

Hello Kathy !

This totally depends on your dx.  H/N dx's differ from person to person.  I agree that PET scans are excellant in intial diagnoisis.  But later on pick up way to much residual crap that makes us cringe.  I am 2 yrs, out with adenoid cystic carcinoma and will yrly forever have a CT of the H/N area and lungs.  (tracking of progression)  Talk this over with your onc's, and make them explain it in detail on the why's and how's.  Now to me.....x-rays have more radiation than most CT machines or MRI's.  At least with all I've been told and explored.  Katie

Ladylacy
Posts: 457
Joined: Apr 2012

When my husband was first diagnosed he had a PET/CT scan.  Then underwent radiation, chemo.  PET/CT scan less than 2 months later, which didn't show that the radiation and chemo did not get the tumor.  Too much swelling.  Then when he had to have a trach they did another biopsy, found the tumor again and referred us to a H&N specialist.  He did a PET/CT before surgery, then every 3-4 months afterwards plus scopes.  Never had a problem getting them approved.  Now since he declined further treatment he has had nothing for 11 months.  Wanted a CT scan but the oncologist said no since my husband refused further treatment.  Asked why?  Duh to see how much the cancer had progressed. 

All I can say is each doctor is different in what they want. 

Sharon

dlygoblue
Posts: 28
Joined: Mar 2012

Now 3 yrs post treatment, and generally have ordered a PET evwery 9 to 12 months, and a CT scan every 9 to 12 months.

jtl's picture
jtl
Posts: 419
Joined: Sep 2011

I have had 3 post and 1 pre to find the primary.  No more are recommended, but if I really want one the medical Onc will give me a script.  The general consensus is that a visual exam can spot a recurrance or a new primary, the latter being of more concern according to my ENT.  I passed the 2 year mark last month and I may have one more CT/PET in Feb and that will be it.  I know people who pay out of pocket for a PET every year looking for issues they can fix. I am not sure I even want to know about a metastasis of scchn.

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

I was interested in this post because the frequency varied so much. I had a PET at around 15 weeks post Tx. All clear thank goodness! I won't be getting any more CAT or PET scans. I'm scoped, poked and prodded every three months for two years, then every 6 months until 5 years and then cut loose. All I'll be getting otherwise is a yearly chest x-ray. My team at Johns Hopkins feels they're not necessary and I'll know and they'll know if something is amiss and order a scan at that point if needed. While I have a niggle of anxiety about this, I put my life in their hands and they haven't let me down. 

Positive thoughts and prayers

 

olybee's picture
olybee
Posts: 82
Joined: Jun 2011

for all the comments.  I have been a lifetime worrier, so I guess this has become my new mission ;)

But truly, I have to admit, although our ENT is well respected in our area, I just have this nagging worry.  the husband of a close coworker of mine was treated by the same doctor for the same HPV/tonsil stage 4, and sadly, he died 4 years later with scc cancer in his liver.  I just was too close, saw all the pain, etc., and yikes, it haunts me.  I don't want to tell my hubby about these fears, because I don't want to make him worry too.  I will now say that I'm really happy to hear that everybody kind of has different regimes.  Somehow I had it in my mind that yearly was the norm, and so I was ready to battle, if necessary, but didn't want to insult our doctor, you know?  I have to quit being such a stranger again.  As I've said, I read all these posts and make myself more nervous, so . . .

THANK YOU again, though, for all the responses, and I want everybody to know, I truly care about all of you and appreciate this community, even though I am a fickle follower ;)

- Kathy

Steve5's picture
Steve5
Posts: 147
Joined: Oct 2013

Just a newbie here -only 6 treatments and 2 chemos in - I originally had a CT ordered by family doctor - then the ENT scoped and biopsied the lymph nodes and found them positive for SCC stage IV on the tonsil - next was H&N specialist - this type does not spread - will confirm with PET - got PET/CT - that was done head down to waist - localized to tonsil and 2 lymph nodes - when treatment is done - Jan 16th - I will get a PET/CT April 16th - if clear the H&N said no more scans and he will not need to see me later than that - other follow up will be ultrasound at 5 years for carotid artery if damaged by the radiation- he did tell us that there is a push to get dentists to conduct first, new and better screening, feeling neck nodes and looking in the mouth for signs of cancer - at the moment that is all I know - my cancer was found by me originally Oct 14th looking in the mirror at a large buldge on the side of my neck - I usually get annual check ups with my family doc in the fall - last year I skipped out - and had not scheduled one for this year either - I know my family doc looks in throats, nad feels the nodes under the jaw - but I also have read enough to know that this manifests itself just like it did for me - overnight boom there it is bigger than life - my rad oncol told me just bad luck, not my fault, no ones fault - what I like about the way he said it was with compassion, understanding and the desire to help - I read it as sincere - you know how you can look in someone's eyes and judge what they are saying - okay this is too long, sorry -  just wanted to contribute - as at least one person said I feel confident in my doctors - I do as well - undoubtably I will discuss this more at the end of the April scan depending on how that comes out - God willing - NED

Best to everyone - the very best

Steve

 

 

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Kathy,

You make a very good point which I surely overlooked about need for scans. From the other posts, it seems most assumed, like I, are focused on recurrence in the same area. If cancer recurs in a distant region, then a scope and exam would never reveal cancer in the liver. On the scale, I am a relative newbie so I defer to old timers with more experience about the frequency of "typical" SCC HPV+ oral cancer recurring distantly. From my year here, it seems quite rare. Don

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Actually I'm not so sure that if cancer is detected in another area, especially after a year ot two that it would really be a recurrence, more than likely a new cancer.

But...., having the scans (PET and CT), from the top of my head to my pelvis, does give comfort of early detection....

One of those comforts/anxieties of frequent scans I guess...

JG

TracyLynn72's picture
TracyLynn72
Posts: 637
Joined: May 2013

NEVER had a PET scan.  I've had three CT's and an MRI.  Two CT's prior to my surgery and one during rads.  I'm not scheduled for any scans, just thorough exams every 3 months by my surgeon AND my rad onc.  

hrowe
Posts: 38
Joined: Oct 2012

I've had three PETs and three CTs. United Healthcare and Anthem have paid them all.

Next is a soft tissue CT in middle of May.

My med onc alternates every 6 mo between PET and CT. I get scoped by my ENT every 60 days now. First year was every 30 days.

His reference for setting up the schedule was when I was first diagnosed.

Duggie88's picture
Duggie88
Posts: 515
Joined: Feb 2010

Soon to be free of cancer for four years and I get a PET Scan every 6 months. Next one January 14th. My sugeon who orders them told me he can guarantee I'm going to die but it ain't going to be because of throat cancer. We joke around quite a bit. I read and have been told these tests aren't the best for you but I look at it with he is the doctor so he is the boss.

      Jeff

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