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No scan, bloodwork only.

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Ok, I'm going for my second appointment since my surgery on Friday.

I thought I was going to get another CT scan, as when I first starting seeing this oncologist he told me I would get a CT scan every 4 months for the first year. I assumed that they would schedule the scan a few days before the appointment, so that the doc could review the scan.  When no one called me about the scan, I called the doc's office. His NPOC told me that she didn't order a scan, and that they were just going to go by my bloodwork.

Is this normal?  My CEA level has always been within normal range for a smoker, even when I had an active tumor. So I'm worried that just checking my bloodwork is kind of pointless. Hell, I'm just worried in general. If the cancer has come back, 4 months is a long time for it to grow undetected. Am I just being a sissy?

 

Anne

cinda
Posts: 63
Joined: Jul 2019

Your doctor will read his records and know its time for your scan . He'll get it schedule for you. This way he'll get anther office call. I understand your concern. hopefully anther week will not make a differents. My blood work was real good . cea was up to 15 but no red flags. But scan didn't look good. Your not being a sissy. This is important. push at your appointment that this is important. I ask for my scan ,was not on the're list of test. It had been 10 months. I hope you get this in a timely matter and things are good for you. your in my thoughts and prayer. 

abita's picture
abita
Posts: 792
Joined: Dec 2017

I would call and ask about a scan so they can schedule it or explain why they aren't giving one. I have found being proactive is required 

SandiaBuddy's picture
SandiaBuddy
Posts: 1063
Joined: Apr 2017

I second that motion.  You need to stay on top of everything (proactive).  Sometimes they simply forget.  And if there has been a change of plans, you should be involved in that discussion.

Trubrit's picture
Trubrit
Posts: 5149
Joined: Jan 2013

On my last visit My Onc said 'Scan before next visit' but I didn't get an order. I called and asked the front desk to double check and sure enoguh, the Doc stil wanted the scan. 

And as an aside, my scan is tomorrow. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1063
Joined: Apr 2017

Good luck on your scan tomorrow, Tru.

Annabelle41415's picture
Annabelle41415
Posts: 6482
Joined: Feb 2009

Wishing you the best outcome tomorrow. 

Kim

zx10guy
Posts: 263
Joined: Dec 2013

I'm sure you'll have good results.  Keep us posted.

myAZmountain's picture
myAZmountain
Posts: 329
Joined: Apr 2018

Never assume that the Doctors office is staying on top of things--so much gets lost in the process--be vigilant about your tests and scans. I have had many times where if I had not called the scan/lab test/follow up visit would not have happened if I had not double and triple checked on it.  Good luck tomorrow Tru!!

NewHere's picture
NewHere
Posts: 1186
Joined: Feb 2015

I will basically echo everyone here, barring any really well explained out reason as to why a scan was not scheduled, where there is no doubt and they answer every questions, insist on a scan.  (I am not sure of your Stage or history, so I do not want to be too harsh on the doctor's office.  And maybe they were waiting for appointment to discuss scheduling the next CT scan right after visit, though it is better to have before visit if you need to see doctor in order to get results.  I can access mine via a portal if I get scan, but my doctor likes getting scans before I see her, so I can ask questions.  In fact they are great, they call me when they get the results with a quick report before I see them and go through the details. )

From what i have seen, and what I have gone through, usually a CT Scan every 3 months of NED before considering going to longer schedule.  (I did go four months when I was back on chemo and it was about a year on it at the time, was not going to make a difference)

If you were NED for awhile and the doctor wants to make the intervals longer, yeah I get blood tests only.  But otherwise, especially since you are 8 months out (if I did the math right) and it is really all a new experience for you, coupled with worries, find out.  As an aside, after awhile the scanxiety does lessen to some degree. Never goes away, but does lessen.

Looking forward to seeing you report about a great report.

 

Annabelle41415's picture
Annabelle41415
Posts: 6482
Joined: Feb 2009

Yes, like others said, you need to be your best point person as they seem to just get one patient in after another and sometimes don't remember what they told you last or forget to write it down on the chart.  If you feel more comfortable getting a scan now, tell them you want one along with the blood work.  Let them know you are concerned about having to wait longer.  You will feel better if your mind is at rest.

Kim

Canadian Sandy's picture
Canadian Sandy
Posts: 608
Joined: Jul 2016

Good luck on your scan tru!

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Thanks everyone, I just wanted to make sure I wasn't being a "Karen".  I will be asking them to schedule a scan, and I'm up for another colonoscopy too.

Good luck Tru, keep us posted!

zx10guy
Posts: 263
Joined: Dec 2013

Not much more to add.  But I forget where I saw the recommended follow up schedule.  For the first year to two years, if I recall correctly, the recommended interval is every 3 to 6 months with blood work and CT scans.  If all is clear from 3 years out, the surveillance moves to every 6 months and eventually to once a year.

The first oncologist wasn't aggressive with his surveillance when I sought out a new doctor due to the frustration of not being able to get a hold of him.  The new doc said the schedule I was on was way too conservative.  So he put me on 3 months checkups even though I was 2 years out from diagnosis.  He eventually moved me to every 6 months which remains as my current schedule being 7 years out from my initial diagnosis.  For my next checkup in June, my doc did not put in an order for a CT scan.  I was able to catch him in the hallway before leaving the clinic.  He confirmed no more scans just blood work even though my CEA has been abnormal.  I didn't ask him why but I suspect it's due to the number of scans I've had over the years.  I've had 4 PET scans and I lose count on the number of CT scans I've had.  He did talk about not wanting to order a PET at some points in my journey with this messed up CEA due to the radiation exposure.  But eventually did order it because of he wanted to be sure he did all possible scan diagnostics to ensure everything was clear.

Technically at this point, I should either be on one year checkups or have been cut loose.  But because of my weird history, I'm still being brought in for checkups.

Real Tar Heel
Posts: 68
Joined: Nov 2019

My hospital missed an entire month of chemo because of a scheduling snafu. I didn't mind of course, lol. But my lesson learned was that you have to be insistent with doctors because they are of course smarter than you and it is difficult for them to come down to your level and listen to what you have to say Wink. It took three years of insisting to get a doc that said, okay, you need a scope, you could have cancer, and this was a fancy hospital with a big, fancy cancer center.

Annabelle41415's picture
Annabelle41415
Posts: 6482
Joined: Feb 2009

During my treatments, when coming out of one treatment, I'd make my appointment for the next scheduled appointment as I'd want to make sure it was in the morning and that there was availability.  It was really my responsibility to make my own appointments for the next round unless the doctor told me my counts were too low to continue that week, and if that happened, another appointment was made immediately for the following week.  Missing a week now and then doesn't create any problem though as the chemo is still active in your system and found that an extra week was sometimes welcoming.  When my daughter was coming in to visit me from the Army it was my insistance that my treatment was postponed for awhile because of not wanting to be sick when she was only here for two weeks.  You are right, the doctors are always know the best for you Undecided.

Kim

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Just got back from the onc. He gave me another all clear according to my blood work. I did talk to him about the CT scan, and he's going to go ahead and put the order in for me and see what my insurance says. Also ordered a colonoscopy...

Do they work the same way with a colostomy bag? Still have to do the cleanse, only difference is where it all comes out from?

Annabelle41415's picture
Annabelle41415
Posts: 6482
Joined: Feb 2009

Glad to hear that blood work is good.  I'm glad you are getting your CT scan as this will put your mind at ease and then you won't have to worry until the next one.  They do the colonoscopy with the bag and believe they just go through the ostomy.  Good that you are having both done just to get it over with.  Wishing you the best outcome with both.

Kim

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

Will be getting my CT scan this Thursday, I'll let you guys know how I come out...

Trubrit's picture
Trubrit
Posts: 5149
Joined: Jan 2013

Knowing how it is, waiting, waiting, waiting. 

Tru

SandiaBuddy's picture
SandiaBuddy
Posts: 1063
Joined: Apr 2017

Oh gee, thanks to our advice, you now get to have scanxiety Wink.  Here's hoping for great results on the scans!

SnapDragon2's picture
SnapDragon2
Posts: 279
Joined: Nov 2019

Good Good Good for you!!!  I hope your scans are great!

AnneO1965's picture
AnneO1965
Posts: 148
Joined: May 2019

My scan has now been re-scheduled for the 20th... 

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