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PET Scan 3 Months Then? Opps Meant CT and Contrast CT

HobbsDoggy
Posts: 165
Joined: Feb 2013

(Sorry - your right PET scans are hard to come by I mean CT contrast scan then anther CT with contrast in September - 6 months) I had my 3 month PET scan, the end of middle of March, NED thank God and the doctors and you all.  My doctor then scheduled me for the next one in the middle of September.  That is also my next apointment with him.  No apointments with the ENT doc or anyone really until September.  This seems too long of a time to wait for the second PET and for the second doctor appointment after treatments stopped.  What was your experience with this?

Thanks for any and all input.

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

I'm no doctor and this just my opinion...with the high percentage of recurrence in the first 2 years and then it's drops dramatically, I'd say yes, that's too long for the next ENT appt.  I think you should be seen monthly for the ENT if not, at minimum every two months. The ENT appt should include the finger exam AND scope. 

As for the PET...if you get a PET in 6 months you are doing good, many on here only get CT's and CT's w/ contrast for their next appts...however, on that note I think any scan done should be no more than 4 months, notwithstanding any guidelines by the National Cancer Institute.

Here is what I had my first 12 months after my last treatment in January 2012.

I had my 3 month follow up PET and then every 3 months I have had a CT and CT w/ contrast scan of the head and neck by my oncologist.

With my ENT I had a monthly finger and scope exam EVERY MONTH, except one month out of the 12 I did not get the scope due to I had just had a scan with my Oncologist. 

My ENT is not affiliated with my cancer team, but he does have access to my visits, notes and scans via computer to my cancer teams care.

In the 12 months since my  last treatment during one of my CT scans there was some "granulated glass" appearance in the top of my left lung, so since then all of my 3 months scans have included a CT of the chest as well (good for me as far as I am concerned bc I like the idea of them keeping an eye on my lungs).

In the 12 months since my last treatment I had an "episode" of very, very bad headaches which was unusual for me so an MRI of the brain was ordered as well.

I on the CT scans every 3 months I feel as if I have had to "push" for those, if I did not I would bet that I would have a scan every 6 months.  As for the monthly ENT scopes and finger exams, those too would probably be every 2-3 months had I not specifically asked my ENT if he would "order" them to be monthly.

I am now 15 months out from my last treatment and I feel I have had good care with some persistance on my end ...but overall I don't feel I have been shorted.  If I had my way, I would have liked a PET scan at the 1 year mark after my post treatment PET .... but I am a "puckered at both ends" kind of person

Congrats on the NED my friend .....keep us posted.

 

Tim

longtermsurvivor's picture
longtermsurvivor
Posts: 1830
Joined: Mar 2010

For all scc the recurrance risk is highest in the first year, by far.  So an ordinary schedule of exams by a qualified expert (this means ENT or ENT oncologist, not med oncologist or radiation  oncologist) is every four to six weeks.  Then the frequency decreases as the risk decreases.  To  go to September until another exam of the surface of your throat, and thorough palpation of your neck is just too long.

 

Pat

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

And I'll have my first PET Scan in two weeks.  I saw my ENT a week ago (two weeks after my MedOnc ordered a CT (NED).  The Ent said he wants to see me every 8 weeks for at least the next six months - nine months.

Joe

Skiffin16's picture
Skiffin16
Posts: 8100
Joined: Sep 2009

As mentioned above....

My ENT saw me (and scoped me) every 3 months the first year Two PET and two CT (first year). Then ENT scope every 4 months in year two, with one PET and one CT. Year 3 and now into year four, scope every 6 months, one CT and one PET each year.

Bllod work has also pretty much followed that same time line..., and continues.

JG

CivilMatt's picture
CivilMatt
Posts: 3062
Joined: May 2012

HobbsDoggy,

 

I had a PET/CT at 3 & 9 months (had to ask rad onc  to order the one at 9 months) – all clear.

 

Only scope and palpitation scheduled for 1 year, but ENT felt swelling and (instantly) ordered a CT with contrast – all clear.

 

Point being, you may have to ask for a scan or have something show up to make the ENT want to order scan.  If you feel something weird, mention it, it might be enough to make a scan mandatory.

 

Clean scans ahead,

 

Matt   

phrannie51's picture
phrannie51
Posts: 3819
Joined: Mar 2012

with no one checking you out.  I've had my own uncomfortable feelings over scans...not the frequency but the type.  However, I've seen my ENT once a month since the beginning (a year ago).  I think I'd just call my ENT's office and make appointments...one for May, and one for July, you've got one for Sept.  Then while I was there, I'd make appointments for another 6 months out....insurance isn't going to buck, because that is not unreasonable.  The Dr.'s office will be fine with it, too....sometimes I wonder what these guys are thinking....if they just "forget" or what.  Anyway, that's what I'd do Smile.

p

PS...my ENT told me he would see a reoccurance faster than a scan would....

HobbsDoggy
Posts: 165
Joined: Feb 2013

I called my ENT today and made an appointiment for May 1, first he could get me in.  I also have almost made up my mind to go to the Cleveland Clinic for a complete follow up and to see what they think about other side effects that I cannot seem to shake.  Ya when doctors are not working as a team they tend to forgot telling you what to do.  All goes back to have to be my own best advocate.  Thanks for all the input!

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

What would it hurt to go to the Cleveland Clinic ? Maybe it would give you some peace of mind. I think you are right about some Doctors not communicating because when I saw my Ent yesterday he did not know that I had only had a CT/contrast (that was ordered by my RO) but when I showed him the lump that I had found he immediately ordered a PET which I will have done this Friday . Then I already had an appointment with my PCP for today and he had not heard from the ENT !  I had know idea that there was a big chance of recurance in the first 2 years! I finished Rads 51/2 mos. ago and found a lump last week . We aren't sure yet what it is hope to know after the PET but both doctors said I will have surgery no matter what it shows ! Anyway my point is that you have to ask or push or have a new symptom to get a PET or that's how it seems to me .

I hope you get some piece of mind soon ,

Peggy

 

katenorwood
Posts: 1853
Joined: May 2012

Oh Hobbs you made me smile with the "you are your best advocate !"  This holds true for all of us.  Some folks are very lucky to have wonderful caregivers pinch hitting where needed....but it comes down to us literally.  Congrads on the NED !  Those darn side effects take awhile....but it doesn't hurt to ask.  Good luck with everything !   Katie 

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