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How often do you get scans?

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Had my first surgery March 2012, scan July showed cancer still there, advancing.  So chemo/rad and had second surgery which was total rectum/anal removal, permanent ostomy in January 2013.  First scan in July was clean.  I want to make sure all is fine and get my port out so I want another scan this January.  My oncologist says she doesn't think it's necessary and a simple colonoscopy will do.  I thought that scanning in the first year after surgery was every 3/6 months?  Wondering if I should be a little more pushy to get the scan done.  I'd really like to feel secure that all is well.  

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I think you should get a scan to be sure.My first surgery was in 2008,and I was only getting scaned once a year which caused them to miss a recurance when it spread to my liver in 2013.Since then I get a scan every 3 months.This year they found a tumor in my spine.I think for your peace of mind you should get a scan at least every 6 months. Good luck,and merry christmas.

Trubrit's picture
Trubrit
Posts: 5512
Joined: Jan 2013

I have scans every six months. 

I think if you feel the need to have a scan for your own peace of mind, you should push for it. 

janderson1964
Posts: 2215
Joined: Oct 2011

Insist on what makes you feel comfortable. Every 6 months is standard proceedure after treatment however I insisted on every 3 months after the first time I was done with treatment because that is what I was confortable with. Dont let the oncologist push you around. You have to be comfortable. Your insurance company pays the bills.

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

The first group I had did the scans every 6 months for the first three years.  Now I am using USC, and they want scans every 4 months and the scope once a year, for the first three years.  (Although this year I had the scope every 6 months.)

 

If you do not feel comfortable get a second opinion for more or different testing.

 

Best Always,  mike

PS We are sending our thoughts and prayers for a healing solution! 

zx10guy
Posts: 274
Joined: Dec 2013

I'm not sure what the standard is for follow up scans are.  It seems to vary.  When I started chemo treatment after surgery, I asked when I would get scheduled for my 3 month scan.  He said we'll just have to wait and see.  It never happened.  The only scan I got was an ultrasound when my liver enzymes started to creep up.  The scan was ordered to make sure nothing was going on in my liver which we later confirmed was due to the Celebrex I was taking as when I stopped taking Celebrex everything went back to normal.  The ultrasound was done right around the 5 month mark or there abouts.  My only "real" follow up scan since the scans done pre-surgery was the first week of December a full year later.  I questioned my oncologist on this and he said this is the standard of care unless something in my history or blood work would indicate a closer scan schedule as outlined by the NCCN (National Comprehensive Cancer Network).  He said an annual CT scan is what is called for in my situation.  He even showed me the text in the physician's protocol.  Here's a link to the one they publish for patients:

http://www.nccn.org/patients/guidelines/colon/index.html#52

One thing he did say which would be pretty concerning for more frequent scans is the radiation load your body is getting.  He also said CT scans can bring about false positives in the form of things that are seen but are of an unknown origin.  This would require him to pursue other avenues of testing to rule out any cancer metastisis.  While this may be a good thing in catching something early, he said many times in his experience it just results in more anxiety as more testing procedures are done which in the end turn out to be nothing.  He feels with me that the blood work (CEA and liver panel) is good enough as I've tracked pretty well with these tests.

Since my follow up, he's pushed me out to 6 months for my next blood work and then staying on the yearly scan schedule.

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Thanks for posting the link!  It helped me see what the maintenance guidelines are. 

 

I haven't had a scan since I was done with chemo.  I'm not really worried though.  My CEAs have stayed very low.  I'd jump for a scan if my CEA ever came up.  I finished chemo in June of 2010. 

 

I have an onc appt in about a week.  Maybe I'll talk to him about getting one.  Embarassed  He suggested that I get one the last time I was in there. 

devotion10's picture
devotion10
Posts: 631
Joined: Jan 2010

My husband had scans the first year after his diagnosis every three months in addition to monitoring his CEA levels.  

If it were me ... I would not accept a situation where you did not have scans and blood test every three months ... the question for me would be why not do this as a precaution?  There is every advantage to being able to catch any tumor activity early and there is every disadvantage to allowing tumor growth to continue because it has not been observed early enough.

Our insurance never had any objection to this level of monitoring and it seems fairly standard.

Your oncologist's suggestion that a simple colonoscopy is sufficient ... well, that only checks the colorectal area. The purpose of the scans and CEA testing can assure you that if there is activity elsewhere it may be caught early and treated immediately.

I'd flash her that great smile and give her a serious push. :)

Peace. ~ Cynthia

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

I'm going to push for the scan.  When this one is clean, I'll step back and say okay too much is unhealthy.  After last year's nightmare growth, I don't want to chance it. I was already stage III so that doesn't leave much wiggle room.  I'll call now and make the appt and just say this is what I want as the patient.  Thanks for your input!  And for the compliments and good wishes.  The last pic was with my sons so I added this one with my daughter.  And my Christmas was wonderful=)  I was up all night playing Santa so I popped on here since it was on my mind.

Chelsea71
Posts: 1170
Joined: Sep 2012

Your daughter!!!  I assumed it was your BFF.  You look like your the same age.  You look very youthful.  Glad you had a great Christmas.  Push for the scan.

 

Chelsea

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Thanks Chelsea, I'll take that compliment and run with it all the way to the bank!  lol 

Annabelle41415's picture
Annabelle41415
Posts: 6722
Joined: Feb 2009

First one was at diagnosis then one year later.  Then six months for two years (which is actually 3 years from diagnosis) and then once a year for two years (which is at year 5).  My friend was released from all scans after 2 1/2 years which seems very early to me.  Every doctor is different.  If you feel you need a scan - get it and don't let any doctor "play" with your life.  It is you that needs to feel comfortable.  Doctors don't understand what us patients go through.  Sometimes their protocol isn't what we want so tell them what "you" want.  Good luck.

Kim

thingy45's picture
thingy45
Posts: 633
Joined: Apr 2011

I am in Canada, maybe different here. Since surgery I have once a year colonoscopy and CT scan, BUT every three months a CEA blood test. which has been e good marker for me.

 Unless something comes up, like I had a bone scan because of excessive pain in bones. Was not cancer, but Arthritis. Still NED, I am so blessed.

 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Thanks 45, sorry I don't know your name.  I guess I'm worrying too much.  Have to stop doing that.  Go with the flow.  I had a clean scan in July.  We're only in January. 

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

Thanks Kim, that's very on point.  I wasn't nervous last year at all and was shocked that the growth was back in that first checkup, nevermind scan and it was only 9 weeks.  Threw me for a loop, otherwise I wouldn't even be worried this time.  Everything has been removed so there should be no problem and yet I want to make sure. 

marbleotis's picture
marbleotis
Posts: 715
Joined: Mar 2012

Scans every 6 months for the first 5 years, colonoscopy every year for 5 years and the blood work (CEA) every 6 months.  If you want a scan be sure to tell your Onc.  Do not push for, demand.  You are in charge of your care. 

relaxoutdoors08
Posts: 520
Joined: May 2011

Being Stage IIIC with a CEA of 1.0 before surgery and chemo, my Survivorship Plan at Mayo MN has been Scans with blood test CEA, Liver Blood tests, with Lung  X-rays Year 1 every 3 months, Year 2 Scans and blood tests every 6 Months, same for year 3 and year 4. port remove end of year 3.  I am feeling blessed to be here NED Starting Year 4. 

Happyhar
Posts: 49
Joined: Apr 2010

I am on Medicare with a BC/BS supplement. My Onc says they will not pay for Scans more often than six months. I get CEA bloodwork at least every 3 months and colonoscopy once a year following 2009 colon resection and subsequent surgical removal of lung nodule July 2012.

Helen321's picture
Helen321
Posts: 1428
Joined: May 2012

We didn't really have a survivorship plan.  I like that idea.  My doctor tends to go with the flow.  Three years with a port.  Ugh, my grandbaby thinks it's something to wack!  He's 17 months.  He also pretends to eat it.  I wouldn't mind having it out by summer. I wish there was an acknowledgement button.  Thank you all for your responses.  I'm going to push for this scan and then I'm going to allow myself to relax a little.

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 508
Joined: May 2012

Looks like you are doing well. I was diagnosed 18 months ago, surgery June 2012, I have had scans every 3 months. After completing 6 months of chemo December 2012 I had a Pet scan, then another Pet December this year, otherwise iT has been CT scans. I have not had a problem with my onc ordering the scans but with the insurance co not wanting to approve the scans. I have had my CEA checked every month and it has been <0.5. I had to fight with ins co with my most recent PET, and I won. 6 months is too long to get CT, I want to catch it right away!
Sandy

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