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Followup scans....

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

The other day Staceye was talking about follow-up scans....since she and I have the same Oncologist...and go to the same ENT's office, I suggested that we ask about them at the ENT's since she was getting no where with the Onc. Well....I had an appointment with the ENT, and mentioned that tho the Onc had scheduled my 3 month followup, he said nothing about a 6 month one....I asked him, don't I need another PET at 6 months? He said no...that as long as I'm seeing him every month, the "something/something board" (I didn't catch that part) doesn't deem PET scans necessary after the 3 month one.

So now, I'm thinking....wait a minute...EVERYBODY else's Dr.'s "deem them necessary"...how come they don't up here in po-dunk Montana???

So when you guys say you're 6 months NED, or 9 months NED....are you getting scans as well as examed by the ENT? He hasn't even used the scope in months on me, just mirrors. This all makes me a tad nervous.

p

Laralyn's picture
Laralyn
Posts: 453
Joined: Apr 2012

My original radiation oncologist said I didn't need the six month scan. He left his practice in my area so I went for a checkup to another oncologist, and forgot to ask. I'm actually moving and so will see yet a third oncologist in late January, so I plan to ask again!

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

Not to make light of it ...but let me share my experience and see if it helps any (also check the NCI guidelines, most insuranc will want to follow that no matter what the doc says, and then you have appeals and such...this is just the reason I went to Seattle for my 2nd opnion and eventually move my care.

Okay...I will try to be brief.

I have an ENT who is NOT affiliated with my cancer tream. Dr. ENT see's me once a month and I asked in the begining of our relationship would he please do a scope on me and not just mirrors or looky / pooky ...he said he would honor that and has done so except for one time (right after I had a CT the same day at my cancer center)
He does the scope and finger exam without fail monthly. Usually it's every three months, I asked fo rmonthly, he oblied.

Now for my cancer team, the Oncologist. I had my first scan 3 months after tx and was given a PET/CT scan...a few hot spots they felt very comfortable telling me just rad residual, not cancer, but that for 100% certaintity, the next 3 mo scan would show that. 3 months later, CT of head and neck soft tissue, no lung (I personally asked for eyes to thights, onco man said no, not in guidelines and looking back insurance probably would have denied anything below the neck to thighs. Onco man also agreed to give me a monthly scope and has done so about 9 out of 12 visits, so I am glad for that as well as he always does the finger exam unless I just had a scan.
So flash forward to my 6 month scan CT w/ contrast neck only ...got my first NED.

Flash forward to my nine month CT/ w contrast...all still looks good, NED, HOWEVER there is some granulated glass appearance noted in the top of my left lung. Now here's the thing. Every time I saw that onco man or ENT each month, I kept tellng them I see alot of my CSN friend with lung issues / mets and I feel we are NOT doing a good job of monitorig the lungs personally. They in turn tell me it's very rare what I had (1 lymph and BOT HPV+) to move to lungs, there words were "very rare" so this is where I start to have a disconnect with them to some degree bc ALL of my unscientific and of course untrained eye sees in my opnion a "moderate" amount of mets / issues to lungs. So they stick with "rare" I stick with "moderate" and still continue to push for lung scans, to no avail by the onco or the insurance company. BUT ..because there was some granulated glasss appearance seen in my upper left lung, the radiologist says he wants me to go right back in and have a full CT of lungs with and w/o contrast.

Now with this scan they not only see the granulated glass appearance in the upperleft lung, but they see 3 spots (largest being 7mm) in my left lower lung.

Onco man feels by there appearance and the scan that it is just infection though he admits he can not guarantee for sure. He want to wait 3 months to do another scan (which now I understand why better) but at that time I say no way on the 3 months he agrees to do one in 7 weeks. This is when I decided to go to the Seattle Cancer Care Alliance to get 2nd and seriously think about moving my care to them going forward. I lime my onco, but I don't care for my ENT and his staff and by moving to SCCA I get a full tumor board to review my findings

I was suppose to go back in 7 weeks, but last week when I was tyring to get down there the weather was terrible snow /slush and I called and cx and turned around to come home (100 miles away remember)

So other than the staging PET and the post tx PET I don't think I will ever get another PET. My ins says PET is a monitoring device and monitoring is not covered....CT's are, every 3-4 months, but not PETS unless there is symptoms showing to merit a PET. So as for monitoring I only get CT of the neck, not eyes to thighs, not haed..and now I too find that a bit uncomfortable bc I see so many of my CSN friends with issues.

I did however speak to my PCP back in September and told her I had a bad cough (cutting wood and hunting, but still a bad cough) and I asked her for an x-ray of the lungs, she obliged. Nothing showed up then, not even the granulated glass...but then what does show up on an xray compared to CT I don't know.

So I've got my CT w/ Contrast approved for SCCA in Seattle now...it's good for 90 days, but I ot ot fly back up there pretty quick after Christmas or 1-2nd week of January to stay below the 3 month mark (my wish) but I am going to do it).

Lot's of talk here Phrannie..sorry about that ....but the NCI is where a lot of insurance copmanies get there rules for scans and of course docs have their own flavor....but a scope is easy and I think he should oblige any request you have on that ...and if your throat is swollen like mine (1/2 it's size) what can he possibly see with the mirrors..and I like them to go waaaay down and look around real good...and I like them to view the nasal cavity going thru the nose.

Best,

Tim

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

I usually don't get scoped - just the tongue grab and look with a mirror. Have to admit - I prefer being scoped. I know some hate it because it's uncomfortable, but I feel like it covers more.

I did NOT get scans every three months - insurance wouldn't OK it. After my first post-treatment PET, insurance wouldn't cover the next - - that is, until the CT they approved came back dirty. got my first clean PET in Spring, 2011.

osmotar's picture
osmotar
Posts: 954
Joined: Jul 2011

P51,
After treatments ended I saw my ENT every 6 weeks, he scoped my throat each time, a few weeks ago he chg'd the time to 3 months. Since Jan 2012 I saw my onco and rad docs , they both work for the same group , every 3 months...a week before seeing my onco I would have a PET , I had 3 of those. All 3 docs plus my internist would get copies of the scan. When I saw my rad doc in sept he felt I was doing well enough to change my visits to him to 6 months. I was scheduled to have my next PET in the beginning of Dec, my insurance said the PET was not a medical necessity, but they agreed to a head/neck scan which I had done , saw my onco 2 weeks ago, she is happy with all results and decided to chg check ups from 3 to 6 months, I don't see her again till June. My insurance will approve a CAT every 4 months, so sometime before my onco visit in June I will have another CAT. I think like anything else our treatment protocol and eventual follow-up depends on the doctor(s) and what our insurance will agree to.

Linda

staceya's picture
staceya
Posts: 702
Joined: Jan 2010

Me too! I just asked my new primary to find me some scheduling data.

We seem to be offered less scans than other folks.
The ENTs did have a scope schedule of (approx) every 2 months the first year and increasing 1 month apart every year.

Merry Christmas eve.

STacey

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

Podunk, MT is not the only place that doesn't give PET scans every six months. East Podunk, OH doesn't deem them necessary either.

PET scans are Big $$$$$$, and not the only tool in the arsenal.

I'm six months out next week, with no schedule to get another PET scan. And I've still got problems with necrosis that they're following closely... My three-month PET was in Sept. Had a scope, CT scan, and biopsy in November, and am scheduled for another CT scan and biopsy in early February.

trust your doctors, and don't worry about the PET scans.

katenorwood
Posts: 1851
Joined: May 2012

Phrannie,

Hey I think this issue is one that needs to be addressed by how advanced the cancer was....and the type of histology you received.  Alot of people are not wanting to know this....kinda just want to deal with what they have  to and move on with life.  I know in the beginning with no information available for my dx.....I did this.  TRUST in our drs. is a must.....and each of our bodies are different.  Meaning because I'm having issues doesn't mean the next gal or guy will.  But now I degress because we know our bodies the best....and being our own best advocate makes sense.  I giggle at some of the why don't I get the scans others do.....I would trade shoes with anyone of you that need scans (PET/CTS or MRI's) every six months or yrly.  That's my goal....to finally get one yr. out.  I don't mean to be sarcastic (heavens NO) but in my view after one yr.....NO NEWS IS GOOD NEWS.  God bless you all....and have a very Merry Christmas !    KatieTongue Out 

I wanted to add....with my dx, Mets can and will usually go to the lungs first.  So maybe I would ask for that x-ray first...mine did show on a x-ray first believe it or not.  I hope this makes sense. 

sunshine_65
Posts: 15
Joined: Mar 2012

At Stanford Cancer Center, they told me that each case is different--depending on the clarity of the results from the 3-months from radiation scan, physical exam, and other clinical observations. So, for me, after an "all clear" sign at the end of August, I am on a 2-month rotating visit schedule (between oncologist and radiologist), with an MRI scheduled for March 2013. It would be followed by a PET scan if and only if there are trouble signs. I am 7 months out from last radiation treatment now.

donfoo's picture
donfoo
Posts: 1274
Joined: Dec 2012

Given Stanford Cancer Center is very reputable and in at least some cases, PET is not routinely ordered post tx, that at least validates this option for some cases. It seems if you get the same answer from a second specialist in a different practice then that should be reassuring.

Until we change the entire fee for service model of delivering health care, I personally work hard to assess if something is NEEDED rather than nice to have. When we start shopping for care based on outcomes and less profit motivations I will remain extremely sceptical of the medical industry, not doctors. 

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Isn't the differences in treatment philosophy nerve racking? I got my only PET 7 months post Tx. As you know my lungs lit up. A follow up CT and biopsy "proved" metastases to the lungs. Now I'm in a wait and see. But I'm going to get a second opinion about that wait and see.

When I attended a laryngectomee conference, one of the speakers said that there is a 5% recurrance/metastases rate every year for the first five years. So 25% of laryngectomees have some future challenge. Does not sound like rare to me. Much less very rare. Of course he was speaking about those of us who had our larynx removed.

Just rambling Rick.

CivilMatt's picture
CivilMatt
Posts: 3010
Joined: May 2012

Hi Phrannie,

 

First, would Tim please go over that again, briefly.

 

My brief story:

 

Got the 3 month PET/CT scan, the ENT visit with scope, tongue pull and neck feel about and the All Clear Signal.

 

At 6 months got the Ent visit with scope, tongue pull, and neck feel about and chemo onc visit and no scan.  I asked the chemo onc why no scan and she said “you are cured”.  Sounded good, but I thought a few years too soon.

 

Had a conversation with insurance advocate (person called me from before treatments began and throughout treatments).  I told her my concerns (what I learned at H&N forum).  She checked my insurance and said I could have a scan I just needed a doctor to order it.

 

Out of my 4 doctors I selected my rad onc to ask for a scan.  She said yes she would order one but would I wait until 9 months.  It was already 7 months +, so I agreed.

 

At 9 months I had a PET/CT scan, the ENT visit with scope, tongue pull and neck feel about and the All Clear Signal.  Still have an office visit with rad onc next week (I am giving her a big hug)

 

Thank goodness that is over, until next time.

 

Best,

 

Matt

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

with all the varying scan schedules....and the fact that I have very good insurance...AND, like Matt, had an avocate from there....I'm going to wait till March, and then insist on a scan...be it PET or Contrast CT....something that will reassure me that all is well.  I'm totally positive that it's not an insurance problem...but a "Dr." problem. 

 

Skiffin16's picture
Skiffin16
Posts: 8095
Joined: Sep 2009

My scans are six months apart, CT, then PET...going on four years now.

I also had scopes every three months the first two years, every four months the third year, and now bumped to every six months going into year four.

John

luv4lacrosse's picture
luv4lacrosse
Posts: 1398
Joined: Jul 2010

I too early on in my recovery asked why I was not getting a PET more often. My ENT said that the PET can more often than not, lead to false positives, unnecessary medical/surgical procedures ETC. I continue to see my ENT every 4 months, and he assures me that with a good physical exam and scope, he will identify anything suspicious before a PET and a CT will pick it up. I trust my ENT explicitly and am comfortable with this approach. Even with my recent METS to my lungs and Mediastynum, my head and neck continue to show NED.

 

Hope this helps a little

Mike

boardwalkgirl
Posts: 263
Joined: Jun 2012

My radiation oncologist said insurance wouldn't pay for another pet scan after my clear one at 3 months so I will have cat scan in 6 months. I see him every 4 months and my ENT every 4 months for first year.

Kent Cass's picture
Kent Cass
Posts: 1747
Joined: Nov 2009

Phrannie- got my first PS/CT at 3-months, and the next at 9-months later, then once a year from then on. I was seeing my Onco and Rad every 3 months for awhile, but that quickly turned into 6-months after the first year. Now, 3 2/3-years out, I'm on a once/year for the Rad, 6-months for Onco and ENT, and have been told if the April's scans are clean I'll be on once/year for all- but they'll get me right in if I have any concerns, which I recently did. Other than my scan's actual physical results, most of my office visits have been little more than chats to update their records on how I'm doing.

 

kcass 

fisrpotpe's picture
fisrpotpe
Posts: 1340
Joined: Aug 2010

for me the three different ent's i see all use the mirrors, they are from three differnt cities. all say the same thing. "if i can see all with the swelling down, I can see better than any scope". every now and then if I have a cold or slight sore throat they will use the scope. 

i had my first scan at three months, then at one year, foloowed by every year for scan and chest x ray. after about 7 years the yearly scans stopped and i continue to see an ent every 4 months. 

john 

 

phrannie51's picture
phrannie51
Posts: 3781
Joined: Mar 2012

after hearing that not everybody is getting them every three months.....AND, that the mirrors allow for a better "look-see" than the scope might allow (maybe it's because I had NPC, that the mirrors work the best?)....Anyway, it does feel much better knowing I'm not missing out on something that EVERYBODY else was getting.  I do trust my Dr.'s....they got me this far.....and my ENT is my really fave one.  With him seeing me every month for the first year, I should be ok.....I think tho, that at 9 months I'm going to insist on some type of scan....I got lungs they should be thinking about as well as a throat.  I smoked Pall Mall straights for a very long time.

p

hwt's picture
hwt
Posts: 1963
Joined: Jun 2012

I had a CT w/contrast then a PET, both NED. I will have another CT in January but the ONC told me I would not be getting another PET, I said "Never?" She said no, just CT scans. Baffled me............

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