Scan Results 15 months post surgery. NDED vs NED?

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benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Scan Results 15 months post surgery. NDED vs NED?

Postby benben » Wed Jul 25, 2018 10:32 am

Hi all, I had a scan yesterday.
Of course it came with all the normal scanxiety and many trips to the bathroom from the barium contrast.
I am not overly surprised by the electronic reports results which are as follows:

1. No definite evidence of metastatic disease within the chest, abdomen and pelvis.
2. Interval resolution of previously visualized short segment thickening of the descending colon.
3. Mild circumferential thickening of the distal thoracic esophagus, nonspecific, can indicate mild esophagitis.
4. Small bilateral pulmonary nodules, largest measuring approximately 3 mm in left lower lobe, nonspecific, similar to CT dated 4/4/2017.


So I have questions and I don't see my ONC until 8/1 so thought I'd post this and see what others might think.

1) NDED as opposed to NED? My previous scan simply stated No Evidence of metastatic disease, this seems less conclusive with the addition of the word "definite".

Is there a difference between NED and this? Or is this just the choice of words used by this specific Radiologist? I mean to me NED is NED and either way looks positive to me.

2) OK Interval resolution - means the segment of the colon that showed wall thickening on my last scan has resolved. That's good news. Probably why my bowel movements have been much more "like" pre surgery normals.

3) I've been slacking on taking my omeprazole for GERD. I'm not overly surprised about this being found as lately (past couple weeks) I did notice some discomfort swallowing during some meals. I've been diagnosed with Esophogitis once before many years ago from endoscopy and have been taking omep periodically since then to deal with it.

4) This is one that I found most shocking. This radiologist mentions 2 specific nodules - 1 in right lower lobe measuring 1mm and one in left lower lobe measuring 3mm. He mentions these are also seen in 2 prior scans but were never mentioned in the notes of either scan by other Radiologists. Was this a call by previous Radiologists to not even mention in the notes or were they missed? According to this Radiologist there seems to be no change in these nodules since first scan 15 months ago. I suppose that's good news too?


Any thoughts or similar experiences with folks?

On a side note this last weekend I summited the South Sister 10,358 elevation. First day with close to a 50 lb back pack was tough, but the ascent the following day with a day pack was not all that difficult. I guess all the bike riding I've been doing has paid off. I managed to beat my teenage companions up by 1.5 hours. Haha.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

henry123
Posts: 138
Joined: Sun Oct 08, 2017 3:25 am

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby henry123 » Wed Jul 25, 2018 10:56 am

Seems all ok to me.
Best wishes for your oncologist appointment
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes , new onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear
8/18 1.3
NED
Vegan yoga juicing apricot

scohow66
Posts: 30
Joined: Fri Apr 07, 2017 9:54 am

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby scohow66 » Wed Jul 25, 2018 11:31 am

Hi - I too just had scans am about 15 months post LAR. They identified two small nodules on lung (2mm and 4mm). Dr. said they could have been missed on last scans done a year or so ago, but is having me rescanned in 4 months to see if any change. Too small now to do anything and could be nothing. I get the anxiety though! I was a T2N0M0 tumor, pre surgery chemo/rad, and had clear margins and no lymph involvement post LAR pathology. I also have some minor fluid build up near the connection which dr. said was probably due to some leakage at the connection site. No symptoms so can treat with antibiotics if a problem and monitor. This was called out on the last scans as well...just a little bit bigger pocket of fluid now. So more wait and watch. Best of luck!
52 Year old male
Dx with RC 10/2016 (T2N0M0)
Port implanted 11/2016
Rad with 5FU December 2016-January 2016
LAR robotic with temp loop ileo 4/2016
ypT0N0M0 - cPR to chemo/rad
Ileostomy reversal 10/2017
LARS

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susie0915
Posts: 864
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Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby susie0915 » Wed Jul 25, 2018 11:56 am

My guess is that it is different wording by different radiologists. I have learned that each radiologist words reports differently. I will bet your oncologist will say this scan is a good scan. I do understand the worry though.
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change

Achilles Torn
Posts: 109
Joined: Fri Dec 16, 2016 2:41 pm

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby Achilles Torn » Wed Jul 25, 2018 12:52 pm

I read it as a good scan. I’ve had close to 10 CT or PET scans since diagnosis and noticed how each radiologist writes differently. I’ve had a few that read like this and I think they just have a “hedgy”style as it is somewhat subjective.

If they saw something suspicious they would definitely note it....and clearly they didn’t.

Also I have a couple very small lung nodules that have been unchanged. Sometimes they comment on them sometimes they don’t.

Cheers
AT
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.

Deb m
Posts: 441
Joined: Tue Jan 14, 2014 10:08 am

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby Deb m » Wed Jul 25, 2018 1:11 pm

Different radiologist use different wording. We have had the term "No definite" evidence of disease and they have also just said "no evidence of disease. It would just depend on which radiologist read it. I was also told by our oncologist at MDA that some radiologist will mention every little thing they see, while other will only mention something if it's relevant to the disease in any way. We have had many reports say for instance " lung nodules in previous ct are stable" ,but never was it even mentioned on any previous report. So I would say that you got a good report.

deb m

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betsydoglover
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Facebook Username: Betsy Lindh Williams
Location: Maryland - outside DC

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby betsydoglover » Wed Jul 25, 2018 1:44 pm

Re: the lung "nodules" - they are VERY tiny. Diagnosed May/2005, in April 2006 I was evaluated at NIH for a potential clinical trial. Scans reported a few tiny (<3mm) lung nodules. I freaked out because my radiologist never mentioned them (I always use the same radiologist). Convinced NIH to review prior scans compared to NIH scans. They'd always been there and they weren't worried about them (which is why they never mentioned them and I only found out when I picked up copies of my records.). I still had my regular radiologist compare the scans, and he also was not at all worried. Twelve years later, they have not changed.

Hope this gives you some degree of peace,

Take care,
Betsy
diag. Stage IV, 5/05, liver met
lap sigmoid colectomy, 6/05
6 cycles Xeloda/oxaliplatin/Avastin (NED after 2)
11/08 9x13mm right lower lobe lung nodule; removed via VATS 4/09
NED
6 cycles Xeloda + Avastin
Avastin only 10/09-5/11
Still NED 06/18

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mobrouser
Posts: 98
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby mobrouser » Wed Jul 25, 2018 2:48 pm

benben wrote:....I managed to beat my teenage companions up by 1.5 hours. Haha.


betsydoglover wrote: ....diag. Stage IV, 5/05, liver met...... Still NED 06/18


Reading these made my day!!

8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

stu
Posts: 878
Joined: Sat Aug 17, 2013 5:46 pm

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby stu » Wed Jul 25, 2018 2:52 pm

When my mum started scanning the equipment was not able to pick up such tiny nodules . They have improved to the point they are literally picking little things up . My mum has two that just sit there . I was shocked to learn they had been there for four years . However I can see why they did not see the need to mention them . The other one that was cancer was also very small but each scan it grew , only by mm but it was doubling its value so it was operated on . It was a much easier surgery and home two days later. No further issues .
My mum’s had over 25 scans and they all phrase things slightly differently.
Your good to go ,
Take care,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby benben » Wed Jul 25, 2018 6:46 pm

Thanks everyone who chimed in. Hearing your stories and words brings confirmation on my interpretations of the scan.
Very grateful for everyone's support and grateful for being NED. YAYE!

Hopefully port removal is in the my near future. Until then - keep fighting! :D
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

Tdubz
Posts: 132
Joined: Sun May 07, 2017 11:01 am

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby Tdubz » Wed Jul 25, 2018 9:06 pm

Hey benben, sounds like a good scan to me! My last scan in April showed I had a small lung nodule with no change from the previous scan. Similar to your situation, it was never mentioned in the notes of any of my previous scans. My onc didn’t even mention it to me either so I guess it’s nothing to worry about. Seems like these nodules are fairly common to have, even in people without cancer.

I’m on a 6 month interval for scans now so I didn’t get a 15 month one. I’ll have my next scan in October. I wish I hand one in July too as 6 months still seems like a long time. I can only imagine what it will feel like when we go to one scan a year.

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby benben » Thu Jul 26, 2018 10:16 am

Tdubz wrote:Hey benben, sounds like a good scan to me! My last scan in April showed I had a small lung nodule with no change from the previous scan. Similar to your situation, it was never mentioned in the notes of any of my previous scans. My onc didn’t even mention it to me either so I guess it’s nothing to worry about. Seems like these nodules are fairly common to have, even in people without cancer.

I’m on a 6 month interval for scans now so I didn’t get a 15 month one. I’ll have my next scan in October. I wish I hand one in July too as 6 months still seems like a long time. I can only imagine what it will feel like when we go to one scan a year.


Hey Tdubz. Glad to see you're doing well.
I got a scan at 6 months post surgery and then this one. So I went 9 months without a scan.
I guess I had a scope at 12 months, so they waited closer to my 3 month Oncologist follow up for the scan which ended up being 9 months from previous scan.

I don't recall my Onc mentioning the nodules noted either. So this revelation on the scan report was "News" to me, but clearly the Radiologist remarked that they were similar/same as my initial scan.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

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dianetavegia
Posts: 2707
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Facebook Username: Diane Weldy Tavegia
Location: Villa Rica, Georgia
Contact:

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby dianetavegia » Thu Jul 26, 2018 11:15 am

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

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby benben » Thu Jul 26, 2018 12:40 pm

dianetavegia wrote:https://radiology-universe.org/2017_Fleischner_Society_Pulmonary_Nodule_Follow-Up_New_Guidelines_Recommendations/


Thanks Diane! That's an informative chart.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!

benben
Posts: 303
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Scan Results 15 months post surgery. NDED vs NED?

Postby benben » Wed Aug 01, 2018 8:43 pm

Update.

So today I had follow up with my oncologist.
As everyone suggested the scan was a good one and my Oncologist was quite happy with the results and so was I.
He put me on scheduling list for port removal.

Of course normal blood work was drawn and everything was great with the exception of AST level was slightly elevated.
I was trying to think of anything that may have caused this to elevate in diet or supplements, but Onc didnt' think it was anything listed.
He wasn't too concerned about it but kept me on 3 month follow up to do blood draws to see if they drop down.
We discussed my excessive exercise and that may be the reason for the elevation. I had this happen once before many years ago during intensive weight lifting regime.

Unfortunately the CEA tests had not come back while at the Oncologist. I received a notice a couple hours ago in email that I had results back. I was anticipating they would have decreased towards normal range, but unfortunately my CEA increased from 3.0 to 4.6. 4.6 is my highest value yet :( I was all stoked about port removal and all tests NED etc.. but the slightly elevated AST and now the jump in CEA has turned a 180 on my party mode. I hope to talk with my oncologist about the CEA tomorrow.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, CEA 4.6 :(
8/30 CEA 2.6
10/5 CEA 1.5
11/8 PORT OUT!


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