Post surgical changes. Reoccurrence?

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Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Post surgical changes. Reoccurrence?

Postby Nohogirl » Mon Oct 22, 2018 10:51 pm

Hi all,

It has only been few months since my husband has been diagnosed and only 2 months since his surgery, but already enough worries every day.

Anyone had any postsurgical changes of the rectum?
This is is what his MRI says
" post surgical changes of the rectum and posttreatment changes of the presacral region and pelvis without definite evidence for recurrence"

He also had 9 mm iliac lymph node at the level aortic bifurcation

I am scared this is actually a reoccurrence that is being ignored by his surgeon and oncologist.

Anyone had this happening after their rectal cancer surgery that was just a postsurgical change and not a reoccurrence?

Please do not ignore this post. Help me shed some light on this.
I can't seem to get over one problem another one comes along.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
07/18 Pet Scan NED

Gravelyguy
Posts: 177
Joined: Thu Jul 05, 2018 6:03 pm

Re: Post surgical changes. Reoccurrence?

Postby Gravelyguy » Tue Oct 23, 2018 7:13 am

It is a stressful time for sure. Every radiologist has their way of writing things.


My take is he/she is acknowledging the changes from the surgery to that area. I often get “without definite evidence of recurrence” on my scans. I was told that it is Dr. speak for there is nothing there.

I would ask your surgeon for help on understanding this if you haven’t already.

Hope this helps.

Dave
Last edited by Gravelyguy on Tue Oct 23, 2018 9:37 am, edited 1 time in total.
6/17 dx mCRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

NHMike
Posts: 2078
Joined: Fri Jul 21, 2017 3:43 am

Re: Post surgical changes. Reoccurrence?

Postby NHMike » Tue Oct 23, 2018 7:36 am

I'm three months out from surgery and I can say that I've had lots of bodily changes and the expectation is that the body will change for about a year. My first surveillance appointment is in three weeks so we'll see what the oncologist and surgeon says. The best thing is ask your oncologist or surgeon what they or the pathologist meant by the statement.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

KimT
Posts: 663
Joined: Sat Feb 20, 2010 8:53 pm

Re: Post surgical changes. Reoccurrence?

Postby KimT » Tue Oct 23, 2018 7:43 am

They are just noting that it looks different than normal anatomy. They note anything that is different. Here they are noting that the changes are due to surgery and are not a reoccurrence of cancer.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Post surgical changes. Reoccurrence?

Postby mandosquiddy » Tue Oct 23, 2018 9:04 am

I have had a recurrence post surgery on the rectal portion of my colon. The report from the scan was worded similar to your husband's but it went on the elaborate about what appeared to be a mass of a certain size and it's specific location. I think like others have said they are just noting that his colon is not standard anatomy due to surgery. If there is no talk of masses or tumors then he is likely okay but certainly discuss concerns with the doc. I've had many a similar worries over the past two years and usually find an email to my oncologist can clear things up quickly.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Post surgical changes. Reoccurrence?

Postby Nohogirl » Tue Oct 23, 2018 11:08 am

Thank you all for your replies.

The surgeon didn't seem too care much about it. I asked him if this is possibly a reoccurrence, he said it could be or not. To my question if he can do a sigmoidoscopy he answered that it won't tell him anything. He said my husband looks good and he doesn't see any reason to be worried. His cold approach frustrates me. My husband looked good before his diagnoses and to me look is not the best prediction of the illness.
Whats killing me is that when i I read about local reoccurrence in rectal cancer, it says it has a very poor prognosis and is considered terminal :(


My husband didn't have any colostomy bag, when 24 cm of his rectum and colon was removed, his colon was reconnected together. So to make me feel a little relieved i am thinking this was probably to much trauma for his surgery site and will take more time to heal especially he also had radiation prior to it.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
07/18 Pet Scan NED

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Post surgical changes. Reoccurrence?

Postby Nohogirl » Tue Oct 23, 2018 11:11 am

mandosquiddy wrote:I have had a recurrence post surgery on the rectal portion of my colon. The report from the scan was worded similar to your husband's but it went on the elaborate about what appeared to be a mass of a certain size and it's specific location. I think like others have said they are just noting that his colon is not standard anatomy due to surgery. If there is no talk of masses or tumors then he is likely okay but certainly discuss concerns with the doc. I've had many a similar worries over the past two years and usually find an email to my oncologist can clear things up quickly.


Mandosquiddy, did it say anything about suggestive to reoccurrence on your report? I just can't understand what " without definite evidence of reoccurrence " means, how to interpret that terminology. Which one the two. Is it 1. there is evidence of reoccurrence, but not definite or 2. definitly not evidence of reoccurrence.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
07/18 Pet Scan NED

DarknessEmbraced
Posts: 3308
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Post surgical changes. Reoccurrence?

Postby DarknessEmbraced » Tue Oct 23, 2018 11:30 am

I would ask your husband's doctor for clarification. Good luck.*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

mandosquiddy
Posts: 32
Joined: Sat Oct 06, 2018 11:45 am
Location: Colorado
Contact:

Re: Post surgical changes. Reoccurrence?

Postby mandosquiddy » Tue Oct 23, 2018 11:47 am

Nohogirl wrote:
mandosquiddy wrote:I have had a recurrence post surgery on the rectal portion of my colon. The report from the scan was worded similar to your husband's but it went on the elaborate about what appeared to be a mass of a certain size and it's specific location. I think like others have said they are just noting that his colon is not standard anatomy due to surgery. If there is no talk of masses or tumors then he is likely okay but certainly discuss concerns with the doc. I've had many a similar worries over the past two years and usually find an email to my oncologist can clear things up quickly.


Mandosquiddy, did it say anything about suggestive to reoccurrence on your report? I just can't understand what " without definite evidence of reoccurrence " means, how to interpret that terminology. Which one the two. Is it 1. there is evidence of reoccurrence, but not definite or 2. definitly not evidence of reoccurrence.



I just looked at the report from my last scan. It did say 'No definitive metastatic disease in the chest." I just take this to mean there is no visible disease in the chest. I think they are definatly not saying #1 and sort of saying #2. Basically they can't say there is for certain no disease because that's impossible to tell from a scan but they can say there is no visible disease. This is still a very positive thing.

Again, I would encourage you to contact the doctor for further clarification if you still need to put your mind to rest.
4/2017 DX: sigmoid colon cancer
colectomy/colostomy
stage II with one positive margin
5/2017 - 11/17 12 rounds of FOLFOX
11/17 - 12/17 Increase in back pain and testicular pain.
CEA increased, CT scan indicated mass on rectal portion of colon
1/18 - 2/18 25 rounds of radiation treatment
5/18 surgery, interoperative radiation, bladder/ureter modification
7/18 normal blood work and CT scan
9/18 increased CEA, mass on outside of small intestine
10/18 Debulking surgery/illeostomy
1/19 Ostomy reversal

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Post surgical changes. Reoccurrence?

Postby Nohogirl » Tue Oct 23, 2018 12:32 pm

DarknessEmbraced wrote:I would ask your husband's doctor for clarification. Good luck.*hugs*

Thank you DarknessEmbraced. His surgeon wasn't helpful in clarifying this yesterday. We are seeing our oncologist tomorrow for our first post op chemo infusion. Hopefully he'll shed some light on this.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
07/18 Pet Scan NED

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Post surgical changes. Reoccurrence?

Postby Nohogirl » Tue Oct 23, 2018 12:33 pm

mandosquiddy wrote:
Nohogirl wrote:
mandosquiddy wrote:I have had a recurrence post surgery on the rectal portion of my colon. The report from the scan was worded similar to your husband's but it went on the elaborate about what appeared to be a mass of a certain size and it's specific location. I think like others have said they are just noting that his colon is not standard anatomy due to surgery. If there is no talk of masses or tumors then he is likely okay but certainly discuss concerns with the doc. I've had many a similar worries over the past two years and usually find an email to my oncologist can clear things up quickly.


Mandosquiddy, did it say anything about suggestive to reoccurrence on your report? I just can't understand what " without definite evidence of reoccurrence " means, how to interpret that terminology. Which one the two. Is it 1. there is evidence of reoccurrence, but not definite or 2. definitly not evidence of reoccurrence.



I just looked at the report from my last scan. It did say 'No definitive metastatic disease in the chest." I just take this to mean there is no visible disease in the chest. I think they are definatly not saying #1 and sort of saying #2. Basically they can't say there is for certain no disease because that's impossible to tell from a scan but they can say there is no visible disease. This is still a very positive thing.

Again, I would encourage you to contact the doctor for further clarification if you still need to put your mind to rest.


Thanks a lot :)

Ehut
Posts: 206
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Post surgical changes. Reoccurrence?

Postby Ehut » Tue Oct 23, 2018 12:54 pm

I had a note about "post surgical changes" in a CT scan about year after surgery. My surgeon ordered a PET scan and fortunately it turned out to be non-malignant. I would definitely ask your doctor whether it merits further investigation.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

Rikimaroo
Posts: 238
Joined: Tue Dec 20, 2016 8:48 pm

Re: Post surgical changes. Reoccurrence?

Postby Rikimaroo » Tue Oct 23, 2018 6:07 pm

These were my MRI results recently on September 7th.

RESULT:
Image quality: Adequate.

TUMOR
* There are new postsurgical changes of proctectomy with coloanal
anastomosis. No distal colonic wall thickening or abnormal enhancement.
* 1.1 x 0.9 cm enhancing soft tissue nodule in the right deep pelvis
(series 18 image 47; series 10 image 19) with mild focal FDG uptake on
PET performed earlier today.

This caused alarm with my Oncologist who initially deemed it scar tissue. He met with the Tumor board (I am going to Cleveland Clinic) and they suggested I do a CT Guided Biopsy. To be clear, I was very nervous and so was my wife, to battle so hard and possibility of a recurrence frightened us and sent us on a spiral of thoughts, but I kept strong and stayed positive.

All the doctor's were possibly certain by the way they spoke that its a recurrence or a pre-sacral MASS. This was the result of my CT Guided Biospy:

FINAL DIAGNOSIS

PERIRECTAL NODULE, IMAGE-GUIDED CORE BIOPSY AND TOUCH IMPRINTS:
- NEGATIVE FOR MALIGNANCY.
- FOREIGN BODY-TYPE GIANT CELL REACTION.

They also said that they can't be to sure if the biopsy can be perfect cause it was so small. I am on surveillance for the next couple of years so we will watch the area if anything, but the news that everything was negative, made me breath a sigh of relief.

If your very concerned ask them if they can do a CT Guided Biospy. If they did a PET SCAN and it didn't light up, then most likely you can say its safe that its not cancer recurrence, my pet scan did not light up.

Rikimaroo
RC T3N1M0
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
Port Scheduled for 12/2017, folfox - avastin 12/2017
Blood Clot in Neck 1/2018, stop avastin, continue FolFox
LAR/Liver Resect 4/2018
Chemo Finish 8/2018
Reversal 10/18
CEA - 12/16 26.1, 1/17 32.2, 3/17 6.6, 11/17 500.5, 12/17 638.5, 1/3/18 424.8, 1/16/18 163.5, 1/31/18 62.2, 2/18 21.1, 3/18 14, 4/18 .8, 10/18 1.2, 12/18 3.2, 2/8 11.4, 3/6 22

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Post surgical changes. Reoccurrence?

Postby Nohogirl » Wed Oct 24, 2018 6:00 pm

[quote="Rikimaroo"]These were my MRI
Thank you Rikimaroo,

What really frustrates me is that neither the oncologist nor the surgeon don't take my worries serious. They say I am overthinking about everything and that I should let things go with its flow. Nothing will put my mind at ease until they confirm its not a reoccurrence. Unfortunately I am the type of person who prefers to see the worst case scenario and act immediately than have a "positive thinking" and later be sorry. I made an appointment with our Radiology oncologist for this Friday and asked if he can read my husband's CT and MRI when we come in. The Oncologist doesn't want a Pet scan because my husband already had CT and MRI back to back.

P.S. they cancelled his 1st chemo on us again (scheduled to start today, they did not receive our chemo meds from the pharmacy yet.
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
07/18 Pet Scan NED

Nohogirl
Posts: 114
Joined: Sun Oct 14, 2018 12:15 am

Re: Post surgical changes. Reoccurrence?

Postby Nohogirl » Wed Oct 24, 2018 6:04 pm

Ehut wrote:I had a note about "post surgical changes" in a CT scan about year after surgery. My surgeon ordered a PET scan and fortunately it turned out to be non-malignant. I would definitely ask your doctor whether it merits further investigation.

Thank you Ehut. Hopefully it turns out to be the case with my husband
04/18 DH 49 Stage 2A T3N0M0 rectal cancer moderately differentiated.
05/18 chemorad. (Xeloda) 28 days
08/18 Surgery- 24 cm, including entire rectum out
Path -Stage II T2N0M0 moderate to poorly diff. adenocarcinoma
0 of 15 lymph nodes
No PNI
No LVI
Clear margins
10/18-02/19 8 cycles of Folfox
02/19 Pet Scan. NED
07/18 Pet Scan NED


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