No more scans, feeling scared

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No more scans, feeling scared

Postby Dorat » Wed Mar 08, 2017 10:39 am

It has been 3 years since I was diagnosed. I just had my scans done last week and had the results this week and they came back clear. I talked to my Oncologiest and he told me there are going to be no more scan because I reach my 3 year mark cancer free. He told me this were the guideline unless I feel something is wrong and can give him a call. I do not have to go back anymore to the cancer center because my primary doctor does my CEA. I should be happy about this, but why do I feel scared. Does any one here have scans after their 3 year mark??
37yr Mother of 4 girls and 1 boy
Dx 1-22-2014
Cc T2N2bM0 (37/47 LN)
Surgery 2-6-2014
Folfox for 6 months
Clean scan 6-10-2014
Finished chemo 8-18-14
Clean scan 8-25-14
Clean colonoscopy 2-26-15
Clean scan 3-9-2015 NED
Port Out 4-3-2015
Clean scan 9-9-2015 NED
Clean scan 2-28-2017 NED 8)

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Re: No more scans, feeling scared

Postby crazylife » Wed Mar 08, 2017 10:56 am

Did you have 37 lymph nodes positive? That seems like a lot to stop scanning but what do I know. Honestly, I have no clue and was just asking.
Wife to DH, 41 years old, diagnosed 11/15
Stage 4, Mod diff, 13/24 LN, 1 liver met
Colon/liver resection at MSK, 11/15
8mm lung met (not confirmed) and enlarged lymph nodes 1/16
12 rounds of folfox (9 with Oxi) 6/16
NED - July 2016
NED - October 2016
3 lung mets - March 2017
7 lung mets, May 2017
RFA to largest met, June 2017
Lung mets growing slowly, October 2017 (off treatment since June 2016)
Right lung surgery, November 2017
Left lung surgery, January 2018
NED - May 2018

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Re: No more scans, feeling scared

Postby dianetavegia » Wed Mar 08, 2017 11:45 am

My onc wanted to stop at 3 years but I'd met my yearly deductible so said 'let's do one more' and we found a 1.4cm liver met. I only had 5 lymph nodes with 'microscopic cancer cells'. That was 8 years 2 months and 1 day ago since my original surgery and coming up on 5 years since the hepatic resection. I have my tests starting this coming week and some a few weeks later.

Since the CEA is most indicative of liver involvement, I'd at least insist on regular Chest CT's or xrays if you're only going with your GP.

Traveler, who died this past year, was NEVER SCANNED! His doctor felt he was cured and did his CEA. At 5 years he was pronounced cured but he asked the doctor if he could check his lungs because when he went biking, he had a bothersome cough. He had numerous lung nodules and died not long after that.

I don't mean to be so negative, but we have to be our own advocates. You have to make this call.
Stage IIIB cc surgery 1/7/09. 5/17 nodes. 12 tx FOLFOX
Stage IVa 2/15/12. CEA 6.4 PET = 1.5cm liver met. HR 4/11/12 No chemo

Nine years 10 months since dx and 6 1/2 years post liver resection.
NED Oct. 2018

“O Lord my God, I cried out to You, And You healed me.” Psalms 30:2

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Re: No more scans, feeling scared

Postby sbrainbolt » Wed Mar 08, 2017 12:25 pm

I am a patient at MD Anderson in Houston, TX. I had 1/19 nodes come back positive. I am going to be moved to the survivorship clinic at MD Anderson after my next set of scans this month if nothing shows up. In my opinion 3 years seems too soon to stop monitoring, but I am not a Dr.

My Onc mentioned 5 years as the magic number for stage 3A.
DX 1/12 50 yrs
LAR 2/12 CR 3A T1N1M0
chemo 3/12- 9/10/12 FOLFOX, issues with platelet counts every 4th treatment
CEA normal
CT 3/15 stable lung nods since 1/2012 NED.
SBO kinked small bowel 10/13 - LAPRO surgery to fix
yrly scans now
09/25/2017 - Graduated to the Survivorship Clinic at MDA! Cured!!!

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Re: No more scans, feeling scared

Postby Achilles Torn » Wed Mar 08, 2017 1:08 pm

Hi Dorat,

I just want to point out that as you are IIIC with great scans so far the odds are your cancer will not return, so I wouldn't worry to much about the small sample of doom and gloom stories that are represented on this board (remember the people who are long term NED or cured are far less likely to post) and while a case like Traveller is always possible it would be very rare.

That being said while the odds are definitely in your favor - If it were me I would still consider pushing to have follow-up scans. I say this in part because in reviewing your history it doesn't seem you have a reference to truly tell if your CEA or other bloodwork (CA19-9, ESR, etc.) is a good indicator. In such a case the health hazards from scans would be worth it. I think if you bring the argument to your doctor about your initial stage and your concerns that they should consent to scans up until the 5 year mark.

So awesome to hear you are NED and have done so well after a tough initial diagnosis.

40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX Commenced Jan 9/2017 - Avastin(Bev) added after round 1.
June 2017 Dose Reduction on Round 11 due to Neuropathy.
Good PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks until progression.

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Re: No more scans, feeling scared

Postby lpas » Wed Mar 08, 2017 2:50 pm

Hi Dorat,

Congrats on 3 years NED!! I'm curious--do you know your MSI/MSS status? I ask only because MSI is known to have a lower recurrence risk.

Personally, I'd be really uncomfortable discontinuing scans before the 5 year mark, particularly with the number of positive lymph nodes you had at diagnosis. If your current doctor isn't willing to write the order, I'd be inclined to seek out a new oncologist, but you need to trust your own instincts.

Best of luck to you either way! Three years out is a huge milestone.
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & Celebrex
3/16 Ovarian mass removed. Benign fibroid
9/16 clean scope
4/18 clean CT
Ongoing Celebrex, Tagamet & other carefully-targeted supplements
Post-chemo CEA 3.0, 2.5, 2.3, 2.0, 1.6, 1.3, 1.8, 2.1, 1.8, 2.0, 1.8, 1.9, 1.7, 1.5, 1.6, 1.5, 1.4, 1.4, 1.3, 1.3, 1.6, 1.6, 1.3, 1.4, 1.6, 2.2, 2.4, 2.1
Mom to a 4 & 6yo

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Re: No more scans, feeling scared

Postby teri3 » Wed Mar 08, 2017 4:00 pm

I'm no Dr. either but I agree that 3 years seems a little to soon to stop the scans. I've always heard the magic number was 5 years also. You could get a second opinion on this. Congrats on the 3 Year NED, that's awesome.
58 yrs old female
MSS KRAS mutation G12V
adenocarcinoma sigmoid colon dx 11-14
sigmoidectomy 11-14
Stage 3A
3 out of 20 lymph nodes involved
started FolFox 1-27-15
11 rounds FOLFOX last one 6-30-2015
7-29-2015 PET clear
5-14-2016 CT 2 nodules one in each lung
Confirmed pulmonary metastasis stage 4
FOLFIRi + Avistin started 8-16 11 rounds complete 12-16
CT 12-16 nodules shrunk chemo break wait and see :?
CT growth
VATS l lung 4 10 17
VATS r lung 4 24 17
CT 2 nodules r up and l low :(

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Location: Calif.

Re: No more scans, feeling scared

Postby Hawaii » Wed Mar 08, 2017 4:05 pm

I'm 10 years clear, and I had my 10th Pet/CT scan done this week. Mine are done once a year, blood work every three months still. I would recommend that you continue.
Dx March '07, transverse resection done
stage III, 27 lymph nodes removed- 1 positive
Surgery to remove the 1 positive node
finished chemo Dec. '07, Folfox, Oxal.
NED!! 2017

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Re: No more scans, feeling scared

Postby ANDRETEXAS » Wed Mar 08, 2017 4:48 pm

I just met my oncologist last week after my NED CT-scan on 2/22, three years after surgery. I am doing another CT-scan in February/2018...blood work every three months and appointments with her every six months....
2/10 - Colon resect
2/13 - DX- Stg IIIb
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
3/23- clean CT
2/22- clean CT
3/21 - clean CT
4/11 - clean colonoscopy


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Re: No more scans, feeling scared

Postby Buckeye » Wed Mar 08, 2017 4:55 pm

Physical exam every 3 to 6 months along with CEA level checked and yearly Ct scans until 5 years out.
Dx 10/20/15 stage 1 T1N0M0 1.3cmx1.1cmx1cm low grade ( well to moderately differentiated) Rectal cancer age 47
Loving Husband and father of two girls age 19 & 15 Sole income provider
CEA <0.5
CT, MRI and PET show no metastatic spread
LAR Laparoscopic TME 11/30/15 with Illo
Pathology clean no lymph node or vascular involvement. Confirmed Stage1
No chemo/rad cancer free now and forever.
Illo reversal 01/26/16

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Re: No more scans, feeling scared

Postby WriterGirl1969 » Wed Mar 08, 2017 6:28 pm

Dorat wrote:I do not have to go back anymore to the cancer center because my primary doctor does my CEA. I should be happy about this, but why do I feel scared. Does any one here have scans after their 3 year mark??

Hi Dorat.
Congrats on hitting your 3 year mark! :)
I agree with what some of the others have noted, in that you do have to be your own advocate. That said, I totally understand how you are feeling. I had that same anxiety when I finished chemo. The whole time I was on it I couldn't wait for it to be over, and then when I reached the last day, it suddenly hit me that I would no longer be actively fighting my cancer. I suddenly felt nervous about finishing chemo. It wasn't lost on me how ironic that was, either. I posted about it, and a lot of others said they felt the same way. I don't think it's unusual at all to have the feelings you're having.
That said, don't be afraid to get a second opinion, just to be sure another doctor would agree with following this particular timeline given your personal history.
Hugs and Prayers,
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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Re: No more scans, feeling scared

Postby CRguy » Thu Mar 09, 2017 12:39 am

Dorat wrote:Does any one here have scans after their 3 year mark??

YES ... scans, and blood tests and whatever else I believe I need.... for the past 10 years.

Feel free to ask your Onc :
" Gee Doc .. if you are NOT even looking ... what do you think you'll find ? "

I agree : second opinion / new Doc / more monitoring for a while ( +/- 5 years would be better )

NOT saying they will find anything !!!!
BUTT ... hey, what can they possibly find if they don't even LOOK ??????

Please don't get me started on dumbass doctors who follow dumbass "standards"
Please read any of my many prior rants about how to "train" your doctor
and gimme a shout if you need more info

Best wishes
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: No more scans, feeling scared

Postby rp1954 » Thu Mar 09, 2017 6:49 am

The current NCCN standard for scans of stage 2 and 3 colon cancer patients, is 5 years. NCCN's doctor version. (PDF, page COL-8)
cited from "Clinical Practice Guidelines in Oncology - Colon Cancer", version 1.2017 Nov 23, 2016

I'd wonder whether this 3 year stuff is the doctor's personal or group bias, or some insurers' carrot and stick game.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

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Re: No more scans, feeling scared

Postby PainInTheAss » Thu Mar 09, 2017 7:16 am

Dorat wrote:It has been 3 years since I was diagnosed. I just had my scans done last week and had the results this week and they came back clear. I talked to my Oncologiest and he told me there are going to be no more scan because I reach my 3 year mark cancer free. He told me this were the guideline unless I feel something is wrong and can give him a call. I do not have to go back anymore to the cancer center because my primary doctor does my CEA. I should be happy about this, but why do I feel scared. Does any one here have scans after their 3 year mark??

You feel scared, and rightly so, that cancer could go undetected. My Onc wanted to only scan me once a year, I told him that I was worried about having the perfect storm of a tumor that did not affect CEA or cause symptoms that could be left to grow undetected for a year. I already won the unlucky lottery of getting colorectal cancer, under 50. I am not confident the odds will be in my favor to take a chance like that. I insisted that I get scanned every six months. I told him I want to live long enough to have the chance to get cancer from my scans.

As far as three years, 90% or so of recurrences are found the first three years post surgery. Then another 5% or so the fourth year and 3% or so at 5 years. But how would anyone find the other 1 or 2% that shows up after 5 years unless there were symptoms and advanced disease? I don't even want to stop scans at 5 years! I'd like to scan until 7 years, but I'm not sure I could convince him. I plan to talk to my PC about it. My Onc did say most recurrences are found the first three years, and often it's a new primary. But I don't want to just trust I am "most." Too much is at stake. I distinctly remember a poster saying he went 14 months without a scan after 4 years and then cancer was all over his body. I don't want that to happen to me even if there is a very small chance.

Your fears are completely understandable.i say insist on more scans or find a new onc if he refuses.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Deb m
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Re: No more scans, feeling scared

Postby Deb m » Thu Mar 09, 2017 10:13 am

I agree with everybody that you should continue with scans till you reach the five year mark. My husband was stage IIbt4a and after finishing chemo he had scans and blood work every three months for a year and a half, then scans and blood work every 6 months for the next two years and the every six months for blood work and once a year for scan till he reached the five year mark, then he was cut loose. This was all done at MDA. I thinks it's great that your ned and three years out, so odds are in your favor that you will be deemed cured, but I would not stop surveillance till you reach the five year mark. You say you feel nervous about not having anymore scans, so go with your gut feeling and demand more surveillance till year 5.


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