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Scope good today, no CT, PET and MRI?

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Overdue to get checked at end of November but finally found an ENT HNC surgeon I trust, at least I think so. He did the scope thing, everything looks fine. One nice benefit of scopes rather than scans is you got zero wait time. Perfect for the instant gratification generation.

I asked about scans and his take is PET is subject to excessive false positives resulting in lot of chasing around for not. I am OK with that, especially since the trend the past year is to reduce use of PET.

CT - He says do NOT show tumor growth very well in the neck/throat/BOT area. I'd not heard that mentioned much here.

MRI - He feels this is the best way to see what is going on in the oral cavity and throat area. Plans to schedule one at the one year post mark (June '14). Meanwhile, he wants to see me every 4-6 weeks for a checkup and scope.

I mentioned PET would pick up distant tumors. He agreed but indicated more or less that if that is the case, then I basically got handed a ticket on the palliative train. Rationale is once it shows up distant then even though there may be a single tumor the likeliehood of it having spread elsewhere is quite high. Not sure I agree with this view. Still digesting that one and will do a research dive. Clearly, if recurrence occurs back in the throat, oral cavity, or neck area it is armour up and back to battlefield. It is not so clear cut recalling those who had distant recurrence and are still typing away here or remembering their course of action.

I'm not one to do the what if dance but if the day comes where they discover distant mets, you can be certain I will seek MO and RO opinions and multiples of them before throwing in the towel before the bout even starts.

Don

Hondo's picture
Hondo
Posts: 5795
Joined: Apr 2009

 

Sometimes we just got to go with what we have, me I trust the scope as with my C if it is there you are going to see it. I did a lot of MRI and now I am Claustrophobia of small spaces, they have to knock me out, so MRI & PET’s are only if they suspect something. So my EMT will scope me everything I go in and that is about every 3 months. She will not do biopsy anymore because they come back positive for NPC, so it is a look and see thing.

 

Take care and keep positive and keep moving and keep going by what every good news you get.

 

God Bless

Tim Hondo  

katenorwood
Posts: 1829
Joined: May 2012

You brought up some interesting points once again !  I agree w/ENT to a point.

PET scans are very useful for primary dx.  (after that it's like ..... they lite up things that don't necessarily point to doom and gloom, and scare the hell out of your team...and you...why ?)  That and it's nuclear medicine....how much is too much ?

Boy on the CT vs the MRI ?  I have found with my dx as it so slow growing many onc's specializing in it (which are far and few between) are leaning more towards the MRI as it shows more believe it or not.  Especially with the lung area for mets.  Some machines combine CT/MRI now a days.  Super big quiet and feels like your in a scifi movie. 

And yes I do agree w/mets you are on the pallitive train.  Sucks but true until an absolute cure is found.  But on that note there is a difference between local reoccurrance and mets disease.  Local reoccurrance is more manageable.  (as you point out...time to duke it out again)

And yes the thought of mets is terrifying for any dx.  But I will continue to express that w/personalized medicine a person may live for many yrs....with a good quality of life.  Depends on many, many aspects.  Timing is one of them.  So if you know you have a dx that is known to met. like mine and reoccurrance is likely....due to many factors also.....do your homework.  WE ARE OUR BEST ADVOCATES !

Don, I truely believe you will be a strong advocate for your dx.  And will discover many things for many people following.  Make a loud noise my dear friend, and I am so very proud of the way you handle things.  Hugs sent !  Katie 

KB56's picture
KB56
Posts: 250
Joined: Apr 2013

Don, thanks for the info... I finished treatment in June 2013 and have had one PET, one CT, one chest xRAY and two scopes (right vocal cord still paralyzed but paralyzed closed which is good).   My Oncologist also talked about the false positives with the PET and before Christmas wanted a CT scan.   I'm due to go back at my one year diagnosis anniversary on 4/1 and he said he would do a chest XRAY then and follow up with a scan in the summer (not sure if it will be a PET or CT).  

Here's to continued clean PET SCANS, CT SCANS, Scopes, XRAYS, doctor's feeling for tumors, etc.  As long as all come back clean it's all good!

Keith

phrannie51's picture
phrannie51
Posts: 3731
Joined: Mar 2012

scope and check up. 

I haven't had a PET scan since 3 months after my last treatment....and was told the same thing about the false positives....tho my thinking was the same as yours....."yeah, but it shows everything knees to nose".  I've had MRI's with and without contrast since that time, 5 to 6 months apart. 

As for the palative outcome of distant mets....it sure seems like there are plenty of people walking around minus one lobe of their lung, and have been going about their business for a long time.....years in fact.  I know however, that my ENT told me that he'd catch a recurrance with his eyes long before a scan would.....and I've trusted him on that.....I do go to him often (every month)...and will continue to do so until next August where I'll drop down to every 3 month.

p

cureitall66's picture
cureitall66
Posts: 862
Joined: Aug 2012

Don,

We are pretty close in follow ups as you were given.(we are 15 months out from end of tx) Kreg went to U of Mi for tx & had his PET done before and after tx. He was told NO MORE scans, only chest xrays.  He asked why and they told him there is concern for recurrence by too many scans that were unnecessary.  They told him his scopes would be every 6-8 weeks for 2 yrs (then spread out further for yrs 3,4,5) and a chest xray once a year. They feel the scopes are the earliest detection for recurrence and that this type of cancer goes to the lungs if it comes back and the chest xray will catch that. We are trusting their judgement. He did have an MRI done due to shoulder pain...which showed nothing. So, I guess we could....get an MRI done if we needed to Laughing.

 

We were a little set back with that info as we've seen a lot here on CSN get the semi-annual and annual scans and when we questioned  them they simply said it's something they do now. So, maybe this is the new protocal?? I don't want to get too deep on this subject, but one of the other things they told him was NO ALCOHOL. The reason was vague...but they claim the alcohol may have contributed to activation (not sure if they meant activation of cancer or virus). So, there seems to be some extra precautions for this tx of cancer then what they've had in the past. Let me tell you....the NO ALCOHOL...stinks for him! LOL..


~Cris

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

This won't be popular, because many of us like a drink or two, but It makes sense to me that they would say NO ALCOHOL, just as they say NO SMOKING.  Both can contribute to many types of Cancers not just SCC.  Most people know and accept the no smoking aspect.  Just saying,

PJ

 

CivilMatt's picture
CivilMatt
Posts: 2967
Joined: May 2012

Don,

Congratulations on your 7+ months post exam, it sounds good, real good, phrannie is putting on her dancing shoes.

H&N members can debate all day all night (we are open 24/7) about scans.  If you are hpv+, it is a slightly different story for reoccurrence than other (hpv has a preferred cell type and is a slow grower), all debatable, but not by me.

For now bask in the sunlight and be happy, stop and smell the roses.

Matt

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

Thanks for sharing the information your new ENT/surgeon provided.  It is worth thinking about.  

I have just spoken to my R/O RN and she said they want me to have a PET/CT at 6-8 weeks!  Now I questioned this for several reasons.  

1.  I know my insurance co. balks at approving Pet/Ct scans. Most Importantly: 2.  The literature supports PET/CT scans with FDG as the most accurate of all the scans in identifying recurrance of scc, but only after 3-4 months following radiation as there is still a lot of inflamation and false positives possible before that time.  Perhaps this is changing?  

PJ

debbiejeanne's picture
debbiejeanne
Posts: 2441
Joined: Jan 2010

don, congratulations on the clear scope!!  I, like so many others here, was told no more scans unless something was wrong, so i also only get scoped.  enjoy the good news and do the happy dance!

God bless,

dj

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Congrats or the clean scope...

I'm with you on instant results...

I don't even opt for any numbing spray..., just lube it up and slide the scope down the nose hole, LOL...so to say.

Not the best feeling, but I've definitely been through worse during this ordeal.

John

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

Great News! Very glad to hear this and your doc is keeping a close eye on things with the appointments.

Here's to good healing!

Positive thoughts and prayers

"T"

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

Don,

I can only say that my recurrance wasn't seen with a scope but rather found on a CT scan. I had no signs to indicate anything was amiss. Had CTs every 3 months first year and had just moved to 4 months. Still localized to head and neck area. Seems differnt docs have differing opinions on PET, CT and MRI's. I ended up with all 3 once the recurrrance was found. 

Prayers for no worries.

Duggie88's picture
Duggie88
Posts: 539
Joined: Feb 2010

I know at first there were some hot spots on my PET Scans but they claimed it was from the radiation. More recently there is no mention of them. That being said I think as the scans go on and they compare them to the older ones they know what is going on. But then again I am just a dumb truck driver paying others to tell me what's up.

Don I have to hand it to you, you do your homework and I always enjoy reading your thoughts and findings.

Heal on brother.

      Jeff

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